tag:blogger.com,1999:blog-5485406787383713582024-03-13T13:46:14.954-07:00Brain Blips: An Epilepsy JourneyLearning about and Living with Epilepsy, a Mother/Daughter BlogDesireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.comBlogger65125tag:blogger.com,1999:blog-548540678738371358.post-45601497905739256272022-01-22T00:22:00.003-08:002022-01-22T20:17:54.775-08:002021: A Second Epilepsy Surgery Work-up, SEEG, and Epilepsy Resection Surgery<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEipHX1sAbBEQCCgnXP8KfZ3cS6Y8h_T5zjRGcZhYBaI1o8UQEuOmEjoB_py6FytrsRKDFUbrkYAWokCNBNnrLYID5GmY0nylbrXfCfwGiN4ucd-EWyi-zXIjrQKXnM9PXRTg3Kg6SigEjY0k2s7V-nzCgK7vEMcYyUmBLKzEC-GwHk9EK2dOJGqrFHU=s2724" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2043" data-original-width="2724" height="480" src="https://blogger.googleusercontent.com/img/a/AVvXsEipHX1sAbBEQCCgnXP8KfZ3cS6Y8h_T5zjRGcZhYBaI1o8UQEuOmEjoB_py6FytrsRKDFUbrkYAWokCNBNnrLYID5GmY0nylbrXfCfwGiN4ucd-EWyi-zXIjrQKXnM9PXRTg3Kg6SigEjY0k2s7V-nzCgK7vEMcYyUmBLKzEC-GwHk9EK2dOJGqrFHU=w640-h480" width="640" /></a></div><div>We were so hopeful. Again. That we were done.<br />But we weren't. And again, we aren't.<br /><br />With intractable seizures. <br />With epilepsy surgeries.<br />And with pandemic surges.<br /><br />Awesome had another round of <br />Epilepsy pre-surgery testing<br />In the summer and fall of 2021.<br /><br />All this testing<br />Culminated in a 13-day SEEG in October.<br /></div><div><br />And then in late November, <br />Two days before Thanksgiving,<br />All of Awesome's doctors' meticulous data gathering<br />Careful analysis,<br />Deliberations, discussions, and decision making--<br />Things at which they'd worked so long and diligently--<br />Came to fruition:<br /><br />Awesome had a second left frontal lobe resection surgery. <br /><br />The photo at the beginning of this blogpost is of Awesome<br />In the ICU shortly<br />After that late November 2021 resection surgery.<br /><br />We went into this second resection surgery<br />Knowing that it was likely,<br />If it was successful,<br />To simply reduce </div><div>Her seizure frequency, length, and severity,<br />Rather than make her seizure free. <br />Because there were areas that had--<br />During the SEEG stimulations--<br />Proven themselves<br />Capable of generating seizures, <br />But that simply could not be removed.<br />And so, this was palliative surgery,<br />It was unlikely to be curative.<br /><br />But we also knew going in,<br />That this surgery simply had to be done.<br />Awesome's seizures were once again,</div><div>Completely out of control<br />Both in length and frequency.<br />And just like before her <br />First resection surgery,<br />A few weeks before her second resection<br />She'd had an unusually terrifying seizure<br />That made us worry that we'd lose her.<br /><br />And this seizure also gave her doctors pause.<br /><br />And so, once all the data and analysis work <br />Was done, we were offered a <br />Resection surgery date<br />As soon as it could be arranged.<br />And that turned out to be <br />Two days before Thanksgiving.<br /><br />Now, it has been 8 weeks since that<br />Second resection surgery, <br /><br />Awesome's doctors tell us that it's far<br />Too early to say what this<br />Second surgery has netted her. <br />That it takes at least 6 months to know<br />And that there's still some possibility <br />That she could become <br />Seizure free as a result of this latest surgery.<br />But honestly, that seems unlikely,<br />Not only had they warned us before surgery,<br />That seizure freedom was unlikely.</div><div><br />But Awesome is right now--<br />Eight weeks out<br />From her second epilepsy resection surgery--<br />Far from seizure free. <br /><br />In these 8 weeks since her </div><div>Second resection, she's had<br />Twenty-one status complex partials<br />And four secondarily generalized tonic-clonics.<br /><br />She's not seizure free<br />After this second resection surgery,<br />Just as she wasn't seizure free after her <br />First resection surgery.<br /><br />But still, her seizures are reduced,<br />From what they were before surgery,<br />Just as they had been after her first resection surgery.<br /><br />And the second surgery has dialed back her seizure<br />Severity too. Just as her first surgery had done<br /><br />We appreciate all that Awesome's doctors do<br />And have done. <br />They are the best. <br />And so too, the EMU and epilepsy surgery staff.<br />And so too, her treatment team at the hospital that <br />Performed her first surgery<br />Who also were consulted during this round of surgeries.<br />Awesome's is just a very difficult case.<br /><br />We were so hopeful. Again. That we were done.<br />But we weren't. And again, we aren't.<br /><br />With intractable seizures. <br />With epilepsy surgeries.<br />And with pandemic surges.<br /><br />We strive every day,<br />To live in hope. <br />And to continue to<br />Live in Hope.<br /><br /></div><div>For our awesome Awesome.<br />That she will finally get seizure control<br />So that she can live the more nearly normal life<br />That she deserves.<br /><br /><br /><br /><br /><br /><br /><br /></div>Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-11265951806388106712020-12-23T23:26:00.006-08:002020-12-24T12:54:54.126-08:00Winter Solstice Darkness<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Vnkji50WeVA/X9XYJD5_HsI/AAAAAAAAB6c/1MPm0FGtbQEP_5IYqgy9ns84aPW4alYhACLcBGAsYHQ/s843/home--1%2B%25284%2529.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="632" data-original-width="843" height="480" src="https://1.bp.blogspot.com/-Vnkji50WeVA/X9XYJD5_HsI/AAAAAAAAB6c/1MPm0FGtbQEP_5IYqgy9ns84aPW4alYhACLcBGAsYHQ/w640-h480/home--1%2B%25284%2529.jpg" width="640" /></a></div><div>It is the winter solstice. </div><div>The days are short, cold, and dark.<br />There is little light.</div><div>Or warmth.</div><div>And very little good news.</div><div><br /></div><div>By the time we wake in the morning,</div><div>There are only six hours of daylight left before it's dark again.</div><div><br /></div><div>We are under siege.</div><div><div>Every day is the same.</div><div>It is always night.<br />In this endless year<br /><br /></div>The Covid-19 pandemic with its mind numbingly scary</div><div>Knowns and unknowns surrounds us.</div><div>We shelter in our homes,</div><div>Avoiding each other as if each of us</div><div>Might be the Angel of Death in disguise.</div><div><br /></div><div>Two weeks ago</div><div>Awesome's grandfather tested Covid positive. </div><div>Five days later, he joined the ranks of <br />The hundreds of thousands of Covid victims. </div><div>And a few days later, we sat, the three of us</div><div>Awesome, David, and I, on our couch</div><div>In our black dress clothes,</div><div>Watching the virtual funeral on Zoom.<br />The prayers, the remembrances, the ceremony</div><div>And then men in black coats shoveling dirt</div><div>On the top of his coffin.</div><div><br /></div><div>It was a bitter thing. <br />In a year filled with dark, bitter things.</div><div><br />That Awesome's January epilepsy surgeries weren't successful</div><div>In stopping her seizures.</div><div>And that her trial of antiepileptic drugs,</div><div>Started in late April</div><div>Has been equally unsuccessful,</div><div>Only adds to the darkness</div><div>And the unknowns of the future.<br />And the feeling that the darkness<br />Around us has become dominant.</div><div><br /></div><div>As the days have gotten shorter, </div><div>The light has diminished.</div><div>And the darkness, like the cold, creeps in, </div><div>Surrounding and overwhelming us,</div><div>Stealing the little light we have left. </div><div>The darkness bears down and challenges</div><div>The little hope left. </div><div>It makes our bones cold.<br /><br /></div><div>Our hope has folded in on itself.</div><div>Becoming increasingly compressed </div><div>Until it is a tiny thing,</div><div>Tucked away, Dormant. Like a seed</div><div>Waiting in the darkness.</div><div>Waiting for a signal that </div><div>Something like life </div><div>As we once knew it</div><div>And/or as we once imagined possible,</div><div>Might someday be possible.<br /><br /></div><div>The tiny seed of hope waits</div><div>For the glimmer of a promise that</div><div>Warmth and light will return.<br /><br /></div><div>But I have to ask--</div><div>If warmth and light were to return, </div><div>Would our little seed of hope</div><div>Still have the power and magic </div><div>To germinate and grow again?<br /><br /></div><div>Would it have the power and magic</div><div>That live seeds always have,</div><div>To push up through </div><div>The dark, warm, moist earth,</div><div>Tentatively at first,</div><div>Vulnerable, but</div><div>Still alive? <br /><br />Would it still be capable?</div><div><br /></div><div>That question is unanswerable right now.<br /><br /></div><div>Right now life in the darkness, </div><div>In the isolated safety of our homes</div><div>Is all we have. <br /><br /></div><div>Right now, all we know is that</div><div>The darkness of the</div><div>Pandemic winter</div><div>And intractable epilepsy</div><div>(despite surgery)</div><div>Stretches out before us</div><div>Like a long, dark tunnel</div><div>We wonder at its deadliness. </div><div>Its miseries. Its unknowns.<br /></div><div>And at the patience,</div><div>And luck required</div><div>To survive it. <br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-3311653429310163472020-11-05T10:24:00.010-08:002020-11-05T12:49:55.232-08:00Happy Birthday, Sweet 16<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TKfKyIZMHmA/X6RAMJzN7nI/AAAAAAAAB34/g7_rf4wTu9AcZAwjN85SiKSbGanychYbACLcBGAsYHQ/s469/And%2Bshe%2Bnever%2Bgave%2Bup%2B%25283%2529.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="352" data-original-width="469" height="480" src="https://1.bp.blogspot.com/-TKfKyIZMHmA/X6RAMJzN7nI/AAAAAAAAB34/g7_rf4wTu9AcZAwjN85SiKSbGanychYbACLcBGAsYHQ/w640-h480/And%2Bshe%2Bnever%2Bgave%2Bup%2B%25283%2529.jpg" width="640" /></a></div><p></p><p class="MsoNormal">"And she never gave up." It's what her shirt says. </p><p class="MsoNormal">This girl, Awesome, it’s
her Sweet 16 today (during the Covid pandemic). </p><p class="MsoNormal">
She is Smart. Talented. Kind.<span style="mso-spacerun: yes;">
</span>Social.<span style="mso-spacerun: yes;"> </span>Friendly.<span style="mso-spacerun: yes;"> </span>Loyal. <span style="mso-spacerun: yes;"> </span>Loving. <span style="mso-spacerun: yes;"> </span>She marches to her own drum, joyfully and
self-confidently.<span style="mso-spacerun: yes;"> </span>She is strong and brave.<span style="mso-spacerun: yes;"> </span>She is a fierce warrior who has faced and
endured more in her 16 years than most people who are twice or three times her
age.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><br />
<br />
She said her first words at 6 months, was talking in sentences at 1 year, and
was reading well and already a serious bookworm by the time she was 4 years old.<span style="mso-spacerun: yes;"> </span>She started violin at 4 years old.<span style="mso-spacerun: yes;"> </span>She made her own stop motion film at 5 years
old and submitted it to a film festival.<span style="mso-spacerun: yes;">
</span>She was a world traveler; she traveled to South Korea with us at 5 years
old, to Europe and Canada at 6 years old.<span style="mso-spacerun: yes;">
</span>She was writing daily installments of a fictional story by 8 years
old—and had a following of more than 400 people eagerly reading her stories.<span style="mso-spacerun: yes;"> </span>She danced for several years performing with
a group around the city; she sang in a church choir; she played violin solos in
church; she acted and performed in a local children’s theater group for several
years; she took art lessons; she swam on swim team; she had a best friend; she
was part of a writing group; a book discussion group; and had several groups
of friends.<span style="mso-spacerun: yes;"> </span>She is a natural leader to
whom people gravitate, in part because she’s kind and inclusive, but also
because she’s self-confident, bubbly, and fun to be around. <span style="mso-spacerun: yes;"> </span><br />
<br />
Epilepsy has taken so many of these things from her and severely isolated her.<span style="mso-spacerun: yes;"> </span>It has taken her freedoms; while her peers
have been becoming more and more independent these past few years, she has had
to endure—for medical reasons (we are under strict orders)--a level of
supervision more like that of a toddler.<span style="mso-spacerun: yes;">
</span>She can’t be out of our sight for more than five minutes at a time, least
we miss the start of a potentially life-threatening seizure.<span style="mso-spacerun: yes;"> </span><br />
<br />
Epilepsy interrupted her attention and processing—so essential to
learning—literally every couple of minutes all day every day for six years,
making learning slower and harder for her.<span style="mso-spacerun: yes;">
</span>What she had done completely effortlessly, now required a lot of effort
and exhausted her.<span style="mso-spacerun: yes;"> </span>Getting through a
school day was often more than she could handle.<span style="mso-spacerun: yes;"> </span>Despite this, she continued and continues to
learn well; she amazes her doctors with her ability to not only keep up with
her peers, but even outpaced them in her gains (as shown in tests) over the last
couple of years.<span style="mso-spacerun: yes;"> </span>All this with a huge
seizure burden that would leave most kids struggling and falling further and
further behind.<span style="mso-spacerun: yes;"> </span><br />
<br />
She’s endured medication trials that left her nauseated for months on end, altered
her ability to control her actions and emotions, covered her in feverish rashes,
and left her exhausted and lacking in resilience.<span style="mso-spacerun: yes;"> </span>We’ve made more 911 calls on her behalf, and
she’s had more ambulance transports than we care to remember.<span style="mso-spacerun: yes;"> </span>Over the years she’s spent more than 50 days in
hospitals.<span style="mso-spacerun: yes;"> </span>Endured severe aspiration
pneumonia as the result of a seizure, losing half a lung in the bargain.<span style="mso-spacerun: yes;"> </span>Dealt with weeks and weeks of video EEG
monitoring on the Epilepsy Monitoring Unit in which her every word and action
was watched every minute of every day.<span style="mso-spacerun: yes;"> </span>She
endured a week of SEEG monitoring with electrodes implanted directly in her
brain through holes in her skull.<span style="mso-spacerun: yes;"> </span>She’s endured tests of every kind (MRI’s, fMRI’s, TMS, PET’s, MEG, SPECT’s, etc.
etc. etc); her case has been considered by groups of the best and brightest
doctors and medical professionals in the country (3 hospitals in 3 different
regions of the US); and she’s endured two brain surgeries, knowing going in
that she might come out missing some essential part of herself (thankfully that
didn’t happen).<span style="mso-spacerun: yes;"> </span>She’s been part of a
dozen medical studies.<span style="mso-spacerun: yes;"> </span>And she’s a
Make-a-Wish kid (except that she can’t have her wish until after the pandemic
is over, so even that has come with challenges for patience).<br />
<br />
This girl has absorbed all those losses, tests, monitoring, hospitalizations, and
difficulties with more grace than most of us will ever show or know.<span style="mso-spacerun: yes;"> </span>She’s faced the unknowns and threats of
epilepsy and status seizures; and the unknowns of brain surgeries with bravery
and grace. <span style="mso-spacerun: yes;"> </span>And she continues to endure
the unknowns of the future with bravery.<span style="mso-spacerun: yes;">
</span>A lesser and/or different person would not only have been miserable, but
also would have been miserable to be around in these circumstances.<span style="mso-spacerun: yes;"> </span>But she is a joy.<span style="mso-spacerun: yes;"> </span>And full of joy. She pulls closer through it
all instead of pushing away.<span style="mso-spacerun: yes;"> </span>She doesn’t
lash out.<span style="mso-spacerun: yes;"> </span> She’s a loving person who
has absorbed much suffering with such grace.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>She quietly endures.<span style="mso-spacerun: yes;"> </span>And she endures with a smile on her
face.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><br />
<br />
I would never have wished all this on our sweet daughter—or indeed anyone. But in
moments of contemplation, when we say how we wish she’d never had to suffer all
these things, she says she would not have wanted to not have had epilepsy as all
that she’s been through has shaped and made her into the person she is—and she
is happy with that person (though she does say she’d be glad to see epilepsy go away
permanently at this point, as she has no desire to continue to suffer more from
epilepsy if it is possible). <br />
<br />
I am in awe of this girl on her Sweet 16 birthday.<span style="mso-spacerun: yes;"> </span>"And she never gave up." It's what her shirt says. But she's done more than that. She's endured with grace and graciousness all that life has thrown at her in her first 16 years of life. And she's still hanging in there. <span style="mso-spacerun: yes;"><br /></span><br />Please join me in wishing this Awesome girl a
happy birthday! And in praying that her doctors are able to find treatments that work to
free her from seizures.<span style="mso-spacerun: yes;"> </span>May she have a
long, productive seizure-free life! And find her God-given work. And her God-given place in the
world. And may she always be strong, and brave, and kind, and always continue to be the awesome Awesome she is! <br /> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qs2H-hopK48/X6Refu2ZkNI/AAAAAAAAB4U/C3nIFmPOioclFrlWahJ3jNq8MIbf4GOmgCLcBGAsYHQ/s2048/Awesome%2Bmontage.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1463" data-original-width="2048" height="458" src="https://1.bp.blogspot.com/-qs2H-hopK48/X6Refu2ZkNI/AAAAAAAAB4U/C3nIFmPOioclFrlWahJ3jNq8MIbf4GOmgCLcBGAsYHQ/w640-h458/Awesome%2Bmontage.jpg" width="640" /></a></div><br /><o:p></o:p><p></p>Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com2tag:blogger.com,1999:blog-548540678738371358.post-35029427386931073772020-07-09T17:13:00.016-07:002020-10-15T00:06:27.531-07:00Six Months Ago: SEEG Surgery Day<br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-uxD6Km-FGPc/XwPdyyzLpGI/AAAAAAAABy4/7c0j7EjbZIMgcdXrb-v7tEafkhBwfqG8wCK4BGAsYHg/s668/Jan%2B9%252C%2B2020%2B%25282%2529.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="501" data-original-width="668" height="480" src="https://1.bp.blogspot.com/-uxD6Km-FGPc/XwPdyyzLpGI/AAAAAAAABy4/7c0j7EjbZIMgcdXrb-v7tEafkhBwfqG8wCK4BGAsYHg/w640-h480/Jan%2B9%252C%2B2020%2B%25282%2529.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: left;">Today is the 6 month anniversary of Awesome's SEEG surgery. There are some days and life experiences that you'll never forget. That day was one of them. <br /><br />Early January in New England. Cold. And at 4:30 AM, very dark. <br /><br />We'd choreographed the morning plan, rehearsing it over and over again in our minds, looking for holes--for things we'd forgotten. In those kind of situations, one does everything possible ahead of time. We'd laid out our clothes for the day. Packed Awesome's and my suitcases. Put coats and boots by the back door. Made last minute to-do lists for the morning. <br /><br />And then, we'd gone to bed early, sleeping deeply with the exhaustion of worry and anticipation years in the making. Sleeping deeply from the stress of having flown 1200 miles the day before, worrying that Awesome would seize mid-flight. Worrying that we'd be the ones who caused an emergency landing for a whole planeload of people. Worrying if Awesome would be OK despite delayed treatment if an emergency landing was necessary. Worrying if we were insane to be flying on a commercial airline with a child with intractable status seizures. But all that worry had been for nothing. Awesome hadn't seized. Everything had, unlike earlier flights, gone perfectly, even with changing planes. And then the next day--yesterday--we'd spent a quiet day visiting with our hosts, our friends who were generously housing us--and would be housing my husband David for the entire 3 weeks we were here for medical care. But the anticipation had still been weighing heavily on us. And so we had slept well until the alarm sounded.<br /><br />As David headed to the bathroom to shower, I, having showered the night before, dressed, pulled a warm sweater over my clothes, and quietly worked my way through my morning-of-surgery to-do list. After I woke Awesome at the appointed time, David exited the bathroom to start his own to-do list, while Awesome and I took our turn in the bathroom. <br /><br />Awesome's instructions from her neurosurgeons for that morning (she was not allowed to do it the night before--it had to be that morning) included showering with a new bar of antibacterial soap and washing her hair. It was a tall order for a child with intractable epilepsy who is prone to seizures when woken early in the morning, and I won't lie--I was very worried that we'd not make it through the next hour without a seizure.<br /><br />Things started off well enough. Going through our bathroom routines simultaneously, I was up to brushing my teeth and packing up our toothbrushes and Awesome was in the shower, her hair washed, soaping up her body, dutifully singing (it's my way of knowing that she's not seizing from moment to moment while she showers) even if somewhat dully, intermittently stopping as a little seizure caused momentary speech arrest, but then resuming again.<br /><br />Everything was fine. Until it wasn't. Very suddenly. First Awesome was quiet longer than usual. So long that I asked her if she was OK. <br /><br />No, she said. She was not OK. She was about to have a big seizure.<br /><br />Things happened very quickly. So quickly that I have trouble remembering exactly what happened in what order. Somehow, I simultaneously helped her out of the shower--naked and dripping water all over the floor--turned the shower off, wrapped two bath towels around her (top and bottom), and, as her head was already turning and she was no longer able to stand, kept her from falling while simultaneously easing her onto the floor of the bathroom. The door is open in the photo, but I have no idea how and why and when that happened. And how Awesome ended up in the doorway. But as soon as I could cover her nakedness, David came rushing into the room. <br /><br />Awesome's last big seizure previous to our trip had landed her in the ER, after two doses of midazolam had failed to stop it. That same midazolam had also depressed her breathing so severely that by the time the EMT's arrived she was turning blue all over (oxygenation in the 60's, heartrate of 159) and had little in the way of breathing drive--and yet was still seizing. It was the kind of seizure that a parent has nightmares about. And it was all still fresh in my mind. And so when her seizure that surgery morning was still going at 3 minutes, we decided that we were taking no chances. We gave her rescue meds--and were just starting to get worried because she was still seizing at the five minute mark--when the seizure finally slowed and stopped. <br /><br />And there we were sitting on the floor of the bathroom. In the dark of early morning. There was no time to catch our breaths. No time to feel traumatized. No time to feel anything but be thankful that the seizure had stopped, and then get up and do what had to be done. We had to be at the hospital in less than an hour. The private driver we'd hired for this morning would be here in less than half an hour. And Awesome was flat out unconscious. Wrapped in two towels. On the floor. With wet hair. And soap all over her body. In less than half an hour, she had to be downstairs and ready to be helped into the car--dressed, coated, booted, with hat on her head. And everything David and I needed for the day, all of Awesome's meds, and everything Awesome and I needed for the next week had to be downstairs, ready to pop into the trunk of the driver's car.<br /><br />David took care of our things. I took care of Awesome. It's not easy to dry and dress a completely unconscious 125 lb person. Even babies help by pushing limbs through arms and legs of clothing. Unconscious people can't and don't. And unconscious people are heavier than conscious people. But somehow, racing the clock--with the help of adrenaline--I managed it. I didn't even consider combing and drying her hair. Or rinsing the soap off her body where it had dried. There was no time. The minute I had her dressed, I grabbed the last of our bathroom things, consulted my to-do list, and accomplished the last tasks on it while Awesome slept on the bathroom floor. David, while carrying things up and down the stairs--quietly because our hosts were still asleep--came back to tell me that the driver was already outside and that he'd told the driver we'd be out as soon as we could manage it.<br /><br />How to get an unconscious 125 lb Awesome down a flight of stairs? Carrying her was out of the question. She was simply too heavy--and I wore an orthopedic boot on one of my feet, the consequence of tearing ligaments in my foot after misjudging how many steps were left on the stairway while I was carrying a boatload of things downstairs several weeks earlier. I still had extensive bruising. And the boot was just awkward. No, all three of us would end up with injuries trying to carry an unconscious Awesome down the stairs. <br /><br />I attempted to wake Awesome. I succeeded in getting her present enough to be able to sit up with help. And then with help from David to get her into a standing position, to get her to bear weight on her legs. But she kept blacking out and starting to go down. I spotted her from behind until we were in the hallway near the stairs where we eased her back down into a sitting position. And then as she alternated between dosing and being half awake, David and I moved her down the stairs. I stood on the stairs below her, bent over and facing her as she sat on the steps above me. I pulled her feet onto the next lower step while saying, "feet." And David, crouched on the stairs above her, as soon as I had positioned her feet on the next lower step, pushed her bottom off the step on which she sat, onto the next lower step, while saying, "Butt." And so, we moved her down the stairs, one step at a time, to the rhythm of "feet," "butt," "feet," butt. When we reached the landing, David steadied and kept her upright, while I pulled her across the landing by the feet/legs. In all this moving of Awesome down the stairs, she was mostly unconsciousness and/or sleeping. She woke only a few times to ask, "Wait, what's happening?" or "What are you doing?" Never conscious long enough to hear and process the answer before she was gone again. <br /><br />By the time we reached the bottom of the stairs, David and I were exhausted, but there was no time to worry about how we felt. While David rushed to the back door to meet the driver and load our suitcases into his trunk, I helped Awesome to her feet again. Thankfully, she was starting to come round more by now. She easily bore her own weight on her legs even if she was unsteady on her feet. I spotted her from behind by placing my arms around her chest and walking behind her with my legs wide apart in case she should suddenly lose consciousness, lurch, and start to go down. It was a long walk to the back door as we had to walk across the long kitchen, in the wrong direction, negotiate a step, and then walk back again through a hallway as long as the kitchen. By the time we got to the bench by the back door, Awesome was somewhat more conscious. Conscious enough for me to sit her down on the bench while I dressed her in her coat, pulled a beanie over her wet head, and helped her get her feet into her boots. David, having loaded the suitcases into the car, helped me escort Awesome (I was still spotting her) to the car and get her safely into the backseat, while I scampered back inside to get my own coat, boot, and hat on and collect a last minute thing or two.<br /><br />After the fact, Awesome tells us that the first thing she remembered after the seizure that morning was sitting in the back seat of the driver's car while I was still inside, wondering where she was and how she'd gotten there.<br /><br />The drive to the Children's Hospital was uneventful. Driving through the cold and dark to the hospital knowing what was about to happen--two neurosurgeons were going to drill 10 burr holes in Awesome's head and thread electrodes directly into her brain (where they'd remain for the week to come)--both made everything more real and at the same time, more surreal. We simply could not continue to live the way we were living. Antiepileptic drugs didn't help Awesome at all. And CBD was no longer helping as much as it once did. Each big seizure had become terrifying as we worried whether it would stop. And if it didn't stop, if the rescue drugs would stop it. And if they didn't, whether Awesome's breathing would end up compromised while her seizure just went on and on and on. I loved this child. And was terrified she would lose some part of herself. Some essential part of herself in the surgeries today and the next week. That she would no longer be the loving child who leaned into me for comfort. Who was happy. And social. And smart. And agreeable. And an utter joy. Our precious daughter. But I worried even more about the possibility that one of these seizures would claim her. And about the fact that she was getting more and more exhausted from constant seizures. And her world and life were shrinking. She deserved life. And a better life than she was living. I thought and felt all these things and more as we drove through the fading darkness of the early morning in the city and I watched people walking and waiting and sipping their early morning coffee, trying to wake up. <br /><br />When we arrived at the hospital, I found a wheelchair for Awesome while David found a cart to load all our luggage on, and we made our way into the hospital, through the revolving door, and found our way to whatever place we were to report to. And did everything that we were asked. And followed people where we were supposed to go. Until, at some point, it was time to see the nurses and the anesthesiologists and the neurosurgeons. And then, Awesome got an IV and "something to relax her" and I explained how badly the morning had gone. And why she still had wet hair. And why she was covered with soap. And they told me not to worry--that they would wash her hair and body as part of the preparation for her surgery, once she was sedated and no longer conscious. And that I shouldn't worry about the fact that she had been given a rescue med that morning--they would factor that into her anesthesia plan.<br /><br />And then the next thing we knew, we were in the MRI room, where we were told to kiss her and say our good-byes to her. She remembers none of that. She was already unable to remember anything because of the drug to "relax her." And then they promised to take good care of her. Turning and walking out of that room was one of the harder things we've had to do in our lives.<br /><br />We went upstairs and registered with the surgery department so that we could get hourly updates. And then, the hard part started. Waiting to hear. I was strangely calm. In the months leading up to surgery, I'd been so nervous at times that my doctor had prescribed prescription meds--an antihistamine--to help me with anxiety. But once we were finally there, I was not anxious. We got our updates and passed them on to our friends and relatives. And prayed. And waited. And 5 hours after surgery started, we got word to come upstairs and meet with the neurosurgeons. Everything had gone well. And Awesome's SEEG electrodes were in place. We were to go upstairs to the ICU, where the anesthesiologists would meet with us to tell us how things had gone with anesthesia, and then as soon as Awesome was awake and settled, we could join her in her ICU room. <br /><br />That ICU room was a little bit of a blur in my mind. I do remember that the neurosurgeons came by to check on Awesome again. The neurosurgeon told us that she was doing well, and that if everything continued to go well, Awesome would be transferred to a room on the neurology floor by the end of the next day. Things did go well. And she was transferred to a room on the neurology floor where she stayed for the next week until her second surgery.<br /><br />Remembering all this 6 months ago is emotional even now. I'll try to tell the story of her SEEG monitoring and her second surgery in the next week or so, as those 6 month anniversaries take place. <br /><br /><br /></div>Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-62426548707477330662020-05-16T18:43:00.006-07:002020-05-16T22:06:57.791-07:00Covid-19 Distances<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-raERDsW5POA/XsCWU5vIofI/AAAAAAAABuA/XrmEaUqWegsB5JHXH9kHFiSGR40nxx2egCK4BGAsYHg/covid%2Bcover%2B%25282%2529.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="719" data-original-width="959" height="480" src="https://1.bp.blogspot.com/-raERDsW5POA/XsCWU5vIofI/AAAAAAAABuA/XrmEaUqWegsB5JHXH9kHFiSGR40nxx2egCK4BGAsYHg/w640-h480/covid%2Bcover%2B%25282%2529.jpg" width="640" /></a></div><div>We live in such strange times.</div><div>Housebound. Isolated.</div><div>More germ-phobic than Monk.</div><div><br /></div><div>Characters on TV amaze with their casual attitude</div><div>Towards being physically close to each other.</div><div><br /></div><div>Were we too once brave enough to be close?</div><div><br /><div>Was there really a time when we didn't shrink</div><div>At the thought of being in close physical proximity to</div><div>Other human beings--whether family, friends, or strangers?<br /><div>Did we really once crowd together in groups?</div><div>On elevators, in airports, at weddings, and everywhere?</div><div>Did we really once share the same airspace?</div><div>And not worry?<br /><br /></div></div></div><div>Was there really a time when we didn't shrink</div><div>At the idea of touching something--</div><div>The same buttons, doorknobs, handrails, cart handles, and keypads--</div><div><div> That another (we're not sheltering with) had just touched </div><div>And not worry?</div></div><div><br /></div><div>Was there really a time when</div><div>Doing these things didn't seem wildly brave?</div><div>(Or stupid?) </div><div>(Or a thinly veiled death wish?)</div><div><br /></div><div>It seems a long time ago already.</div><div><div>Another world.</div><div>Another lifetime.</div></div><div>When we did these things freely.</div><div>Everyday. </div><div> </div><div>It is hard to image </div><div>That we could ever live that way again.</div><div><br /><br /></div><div>Will we ever do these things again </div><div>Without worry?</div><div>Or will we be forever changed </div><div>By these months of pandemic sheltering?</div><div><br /></div><div>In our separate realities</div><div>In our shared reality</div><div>The distances between us </div><div>Grow.</div><div><br /></div><div>The distances between us <br />Are greater than the spaces between the</div><div>The houses in which we shelter.</div><div>Sometimes it seems that infinity itself could not span </div><div>The distances between us.</div><div><br /></div><div>Politically, and in our worldviews,</div><div>We can't close these distances</div><div>Which grow larger, the longer this pandemic rages.</div><div>And the longer we shelter apart (together),</div><div>We bounce off each other like Superballs.</div><div>The forces that keep us apart</div><div>Are stronger than those</div><div>That work to push us together.</div><div>These forces are multiplying at an alarming rate</div><div>Despite a common enemy</div><div>That itself multiples. </div><div>And whose multiplications we attempt</div><div>Unsuccessfully, it seems, to track.</div><div><br /></div><div>This enemy is microscopic</div><div>Threatening us all.</div><div>It is a worthy opponent.</div><div>Stealthy, complex, unpredictable.</div><div>By turns overwhelming, merciless, and deadly </div><div>And then underwhelming and harmless. </div><div><br /></div><div><div>We stand apart because of the virus,</div><div>But we are also kept apart</div><div>By our failure to refocus</div><div>And see and hear each other.</div><div>We look, but we refuse to see</div><div>What the other sees</div><div>And would describe to us.</div><div>The others' landscape. World. Fears.</div><div>We see only the landscape from </div><div>Where we stand.</div><div>And hear the echoes of our own voices.</div><div>Within our own fortresses.</div><br /></div><div>We stand like blind men around the common elephant</div><div>Unable to grasp the whole. </div><div>Our data is unreliable. Incomplete.</div><div>The denominator is almost always unknown.</div><div>Like the common denominator </div><div>That should make it possible for us</div><div>To understand each other.</div><div>That we should be grasping for. But aren't.</div><div>We are mostly taken with our own perspective.</div><div>We call our incomplete data complete.</div><div><br /></div><div>Meanwhile the array of incomplete</div><div>Data on an enemy most of us</div><div>Know only from others</div><div>But have not yet encountered ourselves.</div><div>Continues to confuse.</div><div><br /></div><div>We shrink in fear.</div><div>Or stand boldly.</div><div>Depending on our perspective.</div><div>On our data.</div><div><br /></div><div>Apart,</div><div>We are alone.</div><div>Together.</div><div><div><div><br /></div><div><br /></div></div></div>Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-3967191315492372192020-05-03T23:32:00.000-07:002020-05-04T00:00:11.453-07:00The Ever Moving Finish Line on Beyond the Unmapped Mountains.<div class="separator" style="clear: both; text-align: left;">
<a href="https://1.bp.blogspot.com/-OPYNZnzD8DM/XnWZqBMMCNI/AAAAAAAABs4/HG1m-yIqISglPCP5LIubtRAzAAFZbhi1wCLcBGAsYHQ/s1600/Trixie%2Bservice%2Bdog--2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="843" data-original-width="1124" height="480" src="https://1.bp.blogspot.com/-OPYNZnzD8DM/XnWZqBMMCNI/AAAAAAAABs4/HG1m-yIqISglPCP5LIubtRAzAAFZbhi1wCLcBGAsYHQ/s640/Trixie%2Bservice%2Bdog--2.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
As you recover from a seizure</div>
Your service dog and I watch over you<br />
With love and concern.<br />
And I think of the ironies<br />
Of the situation in which we find ourselves.<br />
<br />
I think about how<br />
In the middle of hardest January<br />
Following close on the heels of scariest December,<br />
You cried and declared,<br />
That you could not go on. <br />
That what life had handed you,<br />
That what was being demanded of you<br />
In January<br />
Was too hard.<br />
That you could no longer do it.<br />
<br />
(Though we both knew there was no way out<br />
Except by enduring the hard things before you.)<br />
<br />
And I told you<br />
Not to give up then.<br />
Because you were in view of the finish line.<br />
And I told you<br />
That victory was soon yours<br />
If only you could endure just a little longer<br />
And push through next few weeks,<br />
That things would start to change<br />
For the better.<br />
<br />
And I told you<br />
That your slow, progressive descent,<br />
These past few years<br />
Into a life, less and less normal<br />
A life more and more isolated,<br />
A life less and less like your peers,<br />
(Whose lives were progressively<br />
Opening up during these same years)<br />
Would finally reverse.<br />
<br />
And while recovery would be hard at first,<br />
Each day would get a little easier. Day by day,<br />
Your life would get more and more normal<br />
And less and less isolated<br />
And start to look more and more<br />
Like the lives of your peers.<br />
Opening up, becoming more expansive, less small<br />
If you could only hold on and push through<br />
The next few days and weeks.<br />
<br />
And so you listened to me<br />
You gazed through the fog of pain and frustration<br />
Through the present agony of<br />
Lack of control over your own body<br />
And extreme lack of privacy,<br />
And you gazed past<br />
The threat of losing who you are<br />
The threat of losing your sound body<br />
The threat of losing abilities you have<br />
And even the threat of death<br />
And you firmly grasped the imagined future<br />
That I painted for you<br />
In bright, beautiful colors.<br />
A future that you deeply and desperately desired<br />
Like a man near death<br />
Desires water in a parched desert.<br />
And you lunged toward that imagined future<br />
Despite the fact that that finish line<br />
Lay beyond the seemingly insurmountable mountain<br />
You were struggling to climb<br />
Despite the fact that you were exhausted<br />
Despite the fact that you<br />
Believed you weren't strong enough.<br />
To hang on and to survive and to keep going.<br />
<br />
You rallied.<br />
You took a deep breath and<br />
Summoned your courage<br />
And drawing from the deep well of strength<br />
And optimism that has always been within you.<br />
That is your strength<br />
In being you,<br />
You believed and reached out,<br />
Grasping the hope<br />
That lay just over that mountain,<br />
And it propelled you<br />
Through the hardest part of<br />
This epilepsy surgery ultra-marathon.<br />
And so, you succeeded<br />
In fighting your way bravely over<br />
That steepest mountain.<br />
<br />
And were strong a little longer.<br />
And longer still. And even when you couldn't<br />
Go on. You did.<br />
You endured. Bravely.<br />
<br />
You were amazing.<br />
<br />
And that should have been the end of the story<br />
You should have run across that finish line<br />
And victory should simply have been yours.<br />
And you should have had that<br />
Expanding life.<br />
<br />
But...<br />
Oh, the irony...<br />
How was I to know that<br />
Life--which is always mysterious<br />
In the things it throws at us<br />
Was about to throw a hard curve ball<br />
And make me into a liar?<br />
And make you wonder yet again<br />
At your bad luck...<br />
<br />
How was I to know that a pandemic<br />
The coronavirus. Covid-19<br />
Was even then--even when you were<br />
Still in the hospital and then in recovery<br />
There in that city and here in our own--<br />
Breaking onto the world scene<br />
So that, just as you were about to cross the finish line<br />
And claim the prize<br />
Of the beginning of a new life<br />
A life which would slowly get more and more normal<br />
Less and less isolated<br />
And more like the life you'd dreamed of<br />
That just then, that not you, but<br />
The entire world would be thrown into an<br />
Even more extreme form of the life you've lived<br />
For the past several years?<br />
<br />
A life of isolation<br />
A life that is anything but normal<br />
A life in which resolution is uncertain<br />
A life in which the finish line<br />
Is unable to be located yet in space and time.<br />
And a life where medical emergencies and<br />
The possibility of death threaten constantly<br />
Without much in the way of warning.<br />
<br />
And so, we continue.<br />
In the way we were before surgery,<br />
Except even more so.<br />
<br />
Your life has NOT become more normal<br />
It's become less normal<br />
<br />
Your life has NOT become less isolated<br />
It's become more isolated<br />
<br />
Your life has NOT become more like your peers' lives<br />
Your peers' lives have become more like yours.<br />
<br />
And the surgery too has NOT been as successful<br />
As we'd have liked. And while some of your<br />
Seizures are gone, the worst ones are still happening.<br />
And we must watch you as diligently as ever<br />
To keep you safe.<br />
<br />
And so, you remind me often with irony<br />
Of what I told you in hardest January<br />
Following on the heels of scariest December<br />
When I said that you should not give up<br />
Because the finish line was within sight.<br />
And you tell me with sad irony<br />
That here you are, having climbed that mountain<br />
And come down the other side.<br />
To find that the finish line is nowhere in sight.<br />
<br />
That that finish line has picked up and moved.<br />
Even further away than it was in January.<br />
Far away.in the distance beyond<br />
The unmapped Covid-19 mountain range.<br />
And almost certainly even further than that.<br />
The finish line likely lies over a second<br />
And maybe a third mountain range.<br />
Beyond another round of drug trials<br />
And another round of pre-surgery testing<br />
And maybe yet another epilepsy surgery.<br />
<br />
The finish line always seems<br />
To be moving further away<br />
In this ultra-ultra marathon of epilepsy.<br />
And this strange thing called life.<br />
<br />
And so I sit here watching you<br />
Watching you recover from yet another seizure<br />
Despite your having climbed that mountain in January<br />
Despite your surgeries.<br />
Despite your having restarted your antiepileptic drugs<br />
<br />
I'm watching you recover<br />
From a seizure as we are in quarantine<br />
In the midst of a pandemic.<br />
That has isolated everyone<br />
In the most un-normal of times.<br />
<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-27074687572951629652020-03-03T21:57:00.000-08:002020-03-03T22:00:39.322-08:00Post-Epilepsy-Surgery: Recovery Uncertainties<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-4CKemQ_qpi0/XkJMaGp9KgI/AAAAAAAABrc/mqS2AFTK3dooXAfPQYrH6XloLWojc8dvgCLcBGAsYHQ/s1600/Trix-8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="843" data-original-width="1124" height="480" src="https://1.bp.blogspot.com/-4CKemQ_qpi0/XkJMaGp9KgI/AAAAAAAABrc/mqS2AFTK3dooXAfPQYrH6XloLWojc8dvgCLcBGAsYHQ/s640/Trix-8.jpg" width="640" /></a></div>
Epilepsy is all about uncertainty<br />
And unpredictability<br />
From moment to moment<br />
From hour to hour,<br />
From day to day<br />
<br />
We're on the other side of Epilepsy Surgery<br />
But the uncertainty is still there.<br />
<br />
We live with it every hour of every day.<br />
And it's not just the usual<br />
Uncertainty and unpredictability of seizures.<br />
<br />
But it's also now, the big picture of not knowing<br />
Whether we're on the amazing threshold of a new life<br />
Without seizures.<br />
<br />
Or whether we've traveled a long way<br />
Simply to end up back again<br />
Exactly where we started at the beginning.<br />
<br />
Or perhaps somewhere in between:<br />
<br />
Doctors can't give us answers. Not yet.<br />
It's too early. The situation too complex.<br />
Her case too uncertain.<br />
And so, we have to wait. <br />
And as we wait, watch.<br />
<br />
<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-60099316353281710272020-02-01T00:43:00.001-08:002020-02-01T00:44:21.058-08:00Epilepsy Surgeries Happened in January<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-xbGuA1S60RI/XjUrJZCTLzI/AAAAAAAABq0/prLe-ABLkC03gLsRqAOB9gAGy3TJVtB-wCLcBGAsYHQ/s1600/Epilepsy%2BSurgery--1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="1315" height="438" src="https://1.bp.blogspot.com/-xbGuA1S60RI/XjUrJZCTLzI/AAAAAAAABq0/prLe-ABLkC03gLsRqAOB9gAGy3TJVtB-wCLcBGAsYHQ/s640/Epilepsy%2BSurgery--1.jpg" width="640" /></a></div>
It's been a very long journey with a lot of twists and turns, but after two Phase 1 testings at two different hospitals in two different regions of the country, and after three different Children's Hospitals' epilepsy surgery conferences--encompassing scores of the best neurosurgeons, epileptologists, and other epilepsy medical professionals in the US--considered, debated, and weighed in on Awesome's case, Awesome finally had two epilepsy surgeries in January.<br />
<br />
On January 9, Awesome had a five hour SEEG surgery to insert 10 electrodes directly into her frontal lobes via burr holes in her skull. Afterward, Awesome spent a day the ICU and then was transferred to the hospital's Epilepsy Monitoring Unit. There she underwent an intense 6 days of SEEG monitoring. Thankfully, the SEEG was able to capture hundreds of her little seizures.<br />
<br />
And then on January 16, she headed back into the operating room again--for a 9 hour surgery. This time, after removing the SEEG electrodes, in a wondrously orchestrated effort, her two neurosurgeons, assisted by her two epileptologists--who were actively analyzing real time data from the grids and depth electrodes that had been inserted during surgery--found the electrical center of Awesome's focal dysplasia, the place that was generating Awesome's seizures--and removed it. Technically speaking, her two neurosurgeons performed a craniotomy with a "generous" mesial left frontal lobe lesionectomy and a small partial corpus callosotomy.<br />
<br />
Awesome's case had been very, very difficult to figure out. After the fact, it was easy to see why. Her focal cortical dysplasia was very deep in the very anterior of her left frontal lobe. So deep and so anterior and so close to the midline (thus called mesial) that they often (but not always) secondarily generalized before they reached EEG or SEEG electrodes.<br />
<br />
I could and eventually will say more about Awesome's very long, very confusing, very difficult, and at times, very discouraging epilepsy pre-surgery and surgery journey, but for now it's enough to know that Awesome's now 16 days post-surgery. Her recovery has been remarkable. And she's doing well. We've not seen any little seizures since surgery--which is a miracle since before surgery she was having a little seizure literally every couple of minutes and indeed, one morning on the EMU, we were told that she had 90 seizures in just an hour and a half. <br />
<br />
Awesome's had just one big seizure since her surgery. It would be easy to be discouraged by this one seizure, but we've been told that any seizures in the first month don't count because the brain is very irritated and even people without epilepsy often have seizures in the early post-surgery recovery period following brain surgery. So we're hopeful.<br />
<br />
It's been so hard to write any posts at all on this blog during the intensity of the pre-surgery and surgery process. But I hope to get back to writing again.Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-77489056482553600922019-11-21T10:42:00.001-08:002019-11-21T22:08:20.392-08:00Epilepsy Awareness? Nope<a href="https://1.bp.blogspot.com/-HWEkPMBKa60/XdbZICgYF8I/AAAAAAAABn4/bNcoV4yhkaEPrv3dneRxFjqPXPvlMe1TwCLcBGAsYHQ/s1600/Epilepsy%2Bsucks--2%2B%25282%2529.jpg" imageanchor="1"><img border="0" data-original-height="611" data-original-width="856" height="457" src="https://1.bp.blogspot.com/-HWEkPMBKa60/XdbZICgYF8I/AAAAAAAABn4/bNcoV4yhkaEPrv3dneRxFjqPXPvlMe1TwCLcBGAsYHQ/s640/Epilepsy%2Bsucks--2%2B%25282%2529.jpg" width="640" /></a><br />
As we were leaving the hospital yesterday with our daughter Awesome who has intractable epilepsy and who'd just undergone pre-surgery neuropsychological testing, we were waiting to turn left onto a main street that runs through our local state university. And as we were sitting there at the stop light, which is right across the street from the one of our Children's Hospital's parking decks, I saw two enormous (story-high) purple ribbons affixed to the front of one of the university's buildings. I pointed them out to my daughter.<br />
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Awesome, who is always noting how no one cares about epilepsy awareness or people with epilepsy, got very excited and started talking about how maybe someone actually knew and cared about epilepsy awareness. <br />
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I cautioned her that maybe the purple ribbons had been co-opted for another cause. But she said, "No Mama, November is Epilepsy Awareness Month. Purple's the color. I'm sure it's for Epilepsy Awareness." <br />
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I told her I'd bet anything that the ribbons weren't for epilepsy--but if they were, I was going to be very impressed. And then the light changed and as we turned left and could see the building closer and more clearly, there was a sign affixed on the building between the two ribbons that said.... Homelessness Awareness. We both laughed because this is a situation that happens over and over again and so, is so very predictable, if disappointing. <br />
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I've since checked, and November is indeed Youth Homelessness Awareness month and they do indeed utilize a purple ribbon. And according to what is posted online, our local state university is promoting Hunger and Homelessness Awareness this week--thus the purple ribbons! <br />
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I'm all for homelessness awareness; one of my older sons actually befriends and works with the homelessness in the city where he goes to grad school. <br />
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But it would also be nice to show a little love to our kids with epilepsy--especially because so many pass right by this display located right across from our local Children's Hospital where so many children and their families have appointments with their neurologists and epileptologists. <br />
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Since yesterday I've learned that the purple ribbon is used for awareness, not just for epilepsy and homelessness, but for animal abuse, Alzheimer's disease, domestic violence, lupus, sarcoidosis, cancer (of all kinds)--but especially pancreatic cancer & thyroid cancer, ADD, religious tolerance, and many, many, many other conditions and causes. <br /><br />When so many causes share the purple ribbon and so many children are passing by a building so prominently displaying purple ribbons so close to a Children's Hospital, maybe there was an argument for letting those purple ribbons be more ambiguous? And to let kids think that maybe someone was thinking of them. Even if they weren't really.Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-74026350467656042322019-08-29T22:43:00.002-07:002020-05-12T22:09:43.054-07:00Five Minutes<div class="separator" style="clear: both; text-align: center;">
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<a href="https://1.bp.blogspot.com/-X2kvtu3gQYE/XUE-spUIyII/AAAAAAAABj0/EW-j_UQyNFIEuRJ9YOT1DjfXxUvGFA0rgCLcBGAs/s1600/seizure%2B1%2B%25282%2529.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="460" data-original-width="614" height="478" src="https://1.bp.blogspot.com/-X2kvtu3gQYE/XUE-spUIyII/AAAAAAAABj0/EW-j_UQyNFIEuRJ9YOT1DjfXxUvGFA0rgCLcBGAs/s640/seizure%2B1%2B%25282%2529.jpg" width="640" /></a></div>
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<span style="text-align: left;"><br /></span></div>
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<i>Five minutes isn't a long time,</i></div>
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<i>Except when a child is seizing.</i></div>
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<i>And then it's an eternity.</i></div>
<i><br /></i><i>And ten minutes</i><br />
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<i>Is the equivalent of two eternities-- </i></div>
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<i><br />And two eternities, without intervention</i></div>
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<i>Can become a serious--e</i><i>ven a life-threatening--</i></div>
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<i>Medical emergency</i></div>
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<span style="text-align: left;">--------------------------</span></div>
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<span style="text-align: left;">I can't put into words the emotions I feel</span></div>
As I glance at the clock on the wall,<br />
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And once again rise from my chair</div>
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On the edge of the circle of moms.</div>
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<br /></div>
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Five minutes have passed since I last saw Awesome. </div>
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But I must go find her again</div>
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To make sure, once again, that she's safe.</div>
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And that she isn't seizing.</div>
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--------------------------</div>
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<i>This isn't a needless hypervigilance</i></div>
<i>Caused by imaginative anxiety.</i><br />
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<i>It's a necessary hypervigilance</i></div>
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<i>Prescribed by a neurologist</i></div>
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<i>Ten days ago, in the aftermath</i></div>
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<i>Of a nearly hour long status seizure.</i></div>
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<i>For which we'd delayed</i><i> rescue meds for far too long--</i></div>
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<i>For one eternity, two eternities, </i></div>
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<i>Going on three eternities. And this because</i></div>
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<i>We kept expecting the seizure would soon end--</i></div>
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<i>Though it didn't. </i><i><br />And so, because of the delay, </i></div>
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<i>By the time we did use rescue meds</i></div>
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<i>The seizure had such momentum</i></div>
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<i>That rescue drugs no longer worked. </i></div>
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<i><br /></i></div>
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<i>Because a seizure is</i></div>
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<i>Like a snowball rolling down a steep mountainside</i></div>
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<i>Gathering strength and momentum.</i></div>
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<i>The longer it goes on, the stronger it becomes</i></div>
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<i>The stronger it becomes, the harder it is to stop</i></div>
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<i>And the harder it is to stop, the more and stronger</i></div>
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<i>Are the drugs needed to stop it. </i></div>
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<i>And sometimes the seizure</i></div>
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<i>Gets ahead of the curve of rescue drug protocol.</i></div>
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<i>So the seizure is always</i></div>
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<i>A little stronger than the drugs</i></div>
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<i>Currently being used to stop it.</i></div>
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<i>And so, quantities of strong drugs</i></div>
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<i>Compound one upon another</i></div>
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<i>Until, when the seizure is finally stopped.</i></div>
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<i>The heavy sedation itself and the dangers it brings</i></div>
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<i>Become the pressing issue.</i></div>
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<i><br /></i></div>
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<i>And that is exactly what happened</i></div>
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<i>With Awesome ten days ago.</i></div>
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<i>Because we delayed rescue meds, her status seizure</i></div>
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<i>Gained strength and momentum.</i></div>
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<i>It got ahead of the curve so that the seizure was</i></div>
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<i>Always a bit stronger than the meds being used to stop it.</i></div>
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<i>And so, </i><i>Awesome continued to seize</i></div>
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<i>After one and then two dosesof Diastat (diazepam)</i></div>
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<i>And so too she continued to seize for another 10 to 15 minutes</i></div>
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<i>After the EMT's administered a dose of IV midazolam.</i></div>
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<i>In total she seized for nearly an hour--until we were</i></div>
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<i>Halfway to the hospital in the </i></div>
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<i>Ambulance.</i></div>
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<br /></div>
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<i>And by then Awesome was so profoundly unconscious,</i></div>
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<i>Her system so full of emergency rescue drugs</i></div>
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<i>("Enough to knock out three adults," explained the ER doctor)</i></div>
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<i>That the reflexes that protect her airway</i></div>
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<i>Were nearly non-existent;</i></div>
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<i>Her drive to breathe, impaired</i></div>
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<i>And her blood gases very abnormal.</i></div>
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<i>Had any of these things taken even the slightest turn for the worse,</i></div>
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<i>She'd have been intubated and placed in the ICU.</i></div>
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<i>Instead, Awesome</i><i> was admitted to the Special Care Unit--</i></div>
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<i>Th</i><i>e step-down from ICU--</i></div>
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<i>Where she was c</i><i>arefully monitored for the next twelve hours</i></div>
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<i>Until the danger was past and she regained consciousness.</i></div>
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<br /></div>
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<i>And it was there on the Special Care Unit</i><i> </i></div>
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<i>The next morning,</i></div>
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<i>That the consulting neurologist</i></div>
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<i>Very firmly told me </i></div>
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<i>That our Awesome was never, ever again</i></div>
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<i>To be allowed to seize for more than 5 minutes</i></div>
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<i>Without medical intervention.</i></div>
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<i>That it was imperative</i></div>
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<i>That rescue meds be administered</i></div>
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<i>No later than 5 minutes into a seizure</i></div>
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<i>Without fail. Period. No matter what.</i></div>
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--------------------------</div>
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I search</div>
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Inside, outside, upstairs, downstairs</div>
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The basement;</div>
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Front porch, back deck, </div>
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The side yards</div>
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<br /></div>
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But I don't find Awesome anywhere.</div>
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Somehow, I've missed her</div>
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<br /></div>
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Most likely, our paths simply failed to cross</div>
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I try not to think about the other possibility--</div>
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That Awesome's lying alone somewhere, seizing</div>
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<br /></div>
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Instead, I simply repeat my search</div>
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Finally, I find her,<br />
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Not seizing, but hiding with another girl</div>
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Named Callahan in a basement bathroom</div>
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Giggling, talking excitedly,</div>
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And peeking out the door.</div>
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<br /></div>
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The two are part of the larger hide and chase game.</div>
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That keeps things so mixed up today,</div>
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And makes my efforts to keep Awesome safe</div>
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All the harder. The game is </div>
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More lively, more far-ranging, </div>
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And longer-lasting than usual today. </div>
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Twenty-five kids, all running, hiding, chasing</div>
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Coming, Going, Moving steathily,</div>
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Talking excitedly, Glancing over their shoulders.</div>
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Having fun. Never in the same place for long.</div>
Shifting in loose groups<br />
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Like pieces of glass in a rotating kaleidoscope</div>
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Fanning out over, around, and through </div>
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Every room and every space within an entire</div>
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Large two-story house with finished basement</div>
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Sitting on a large wooded, rolling acre-plus lot.</div>
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It's is a joyful, archtypal game of childhood,</div>
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One that most of us remember playing</div>
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When we were children. </div>
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And seeing Awesome engaged in this game</div>
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Gives me a very deep joy and happiness.</div>
Games like these are an essential part of childhood that<br />
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Every child should be privileged to experience</div>
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Often and well.</div>
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<br /></div>
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But, this game also makes my efforts to keep Awesome safe,</div>
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Very hard. </div>
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<br /></div>
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All the informal things I usually rely on</div>
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To help keep Awesome safe--</div>
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The fact that her friends tend to stick together;</div>
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That they don't switch locations very often;</div>
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That they tend to move to a new location as a group;</div>
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And that they often provide </div>
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An informal buddy system for Awesome--</div>
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None of these helps are in place today.</div>
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<br /></div>
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All the things I rely on to help ensure that Awesome is never alone--</div>
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That she's always with someone</div>
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Who would notice if she started seizing;</div>
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Who would notice if she suddenly became unresponsive;</div>
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Who would notice if she started acting oddly;</div>
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And who would run to get help if any of those things happened--</div>
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Are simply not in place today. </div>
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<br /></div>
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Instead, Awesome's a free agent.</div>
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Today she's alone.</div>
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<br /></div>
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And though I often find her with another child</div>
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Or group of children</div>
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It's not always the same child</div>
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Or the same group of children.</div>
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There is no continuity.</div>
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And without continuity, it's easy </div>
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For Awesome to fall through the cracks</div>
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And end up alone. .</div>
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<i>If there is anything we've learned over the 7 years</i></div>
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<i>Aweseome's had intractable epilepsy,</i></div>
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<i>It is how dizzyingly quickly </i></div>
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<i>Awesome can go</i></div>
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<i>From perfectly normal </i></div>
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<i>To seizing mode</i></div>
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<i>To medical emergency mode.</i></div>
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<i><br /></i></div>
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<i>One moment she's fine,</i></div>
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<i>The next moment she's seizing,</i></div>
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<i>Sometimes she's able to call out,</i></div>
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<i>Sometimes not. Sometimes she simply falls--</i></div>
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<i>Which can itself be dangerous,</i></div>
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<i>Depending on where she is when she falls.</i><i> </i></div>
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<i>And five minutes later, if she's still seizing,</i></div>
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<i>We're already in emergency medical mode.</i></div>
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<i><br /></i></div>
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<i>Every minute that goes by after that</i></div>
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<i>Without rescue drugs</i></div>
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<i>Increases the likelihood that her seizure</i></div>
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<i>Will gain so much momentum so quickly</i></div>
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<i>That it will get ahead of the </i></div>
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<i>Rescue med effectiveness curve.</i></div>
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<i>And increases the chances that</i></div>
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<i>She'll end up, once again,</i></div>
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<i>In the Special Care Unit</i></div>
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<i>Or even in the ICU.</i></div>
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Once again I'm back in my seat<br />
On the edge of the circle of moms.<br />
I'll be here for 5 minutes.<br />
<br />
While the moms talk excitedly<br />
About possible field trips for the coming year<br />
I try to come to terms with<br />
Our situation.<br />
<br />
Earlier, in the first half hour after we'd arrived,<br />
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I'd tried to make it Awesome's business</div>
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To find someone else--anyone--to attach herself to.</div>
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Someone who would notice if she started to seize.</div>
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Someone who could give her continuity</div>
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In never being alone.</div>
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Someone to whom she would stick like glue.</div>
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But she couldn't or didn't want to do that.</div>
And so, each of the next four times I checked on her,<br />
Awesome was alone. Each time in a different place.<br />
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The pressing problem is this:<br />
How will I keep track of Awesome in this situation?<br />
How can I possibly keep her safe?<br />
<br />
I've already excused myself numerous times<br />
In the 30 minutes we've been here.<br />
It seems that I barely sit down<br />
Before it's time to find Awesome again.<br />
<br />
Am I really going to continue to do this<br />
Every 5 minutes<br />
For the next two and a half hours?<br />
<br />
<i><a href="https://www.wholiveslikethispodcast.com/" target="_blank">Who lives like this?</a></i><br />
<br />
In what world is it normal to pop up every 5 minutes<br />
And leave the room to go check on your 14 year old?<br />
<br />
I'm used to checking on Awesome every 10 minutes<br />
At gatherings like this--but every 5 minutes<br />
Is entirely different. <div>Checking on Awesome so often<br />Seems close to absurd--<br />
And frankly, it makes me feel crazy.<br />I barely sit before it's time to get up again.<br />
<br />
The two realities in which we live<br />
Sometimes seem so irreconcilable.<br />
<br />
There is the reality where Awesome is a normal child<br />
Living a normal life and expecting and doing<br />
Normal things just like any other child.<br />
In that reality there is nothing exceptional or disabled<br />
About Awesome. Not by any stretch of any definition.<br />
Awesome is a neurotypical, able-bodied, very socially adept,<br />
Cognitively bright, creative, and even, verbally gifted, child.<br />
<br />It feels wrong to treat her<br />
Differently than her peers. To hold her back.<br />
To deny her all the experiences that<br />
Any other child her age would have.<br />
To make her life harder than it should be.<br />
To limit her. And in that reality,<br />
Why shouldn't Awesome be allowed to<br />
Run and play hide and chase just like<br />
Any other normal kid? She certainly looks<br />
And acts just like any other normal kid.<br />
<br />
That reality where Awesome is a normal kid<br />
Is undeniably real. And it is the reality<br />
In which we live.<br />
<br />
But there is this also this other reality,<br />
The one that breaks in on Awesome's everyday world<br />
With as much irregular regularity, as the rains that water<br />
The earth so abundantly in this part of the world.<br />
But not nearly so benignly. Rather, this other reality<br />
More resembles The Upside Down from the series Stranger Things.<br />
This other regular reality is dangerous. And powerful. And disruptive.<br />
And it is also potentially deadly--if not taken seriously.<br />
And prepared for. Watched for. And expected when one least expects it.<br />
When one least wants it. And when that reality is the least convenient and helpful.<br />
It is the reality that sees Awesome needing rescued promptly and decisively.<br />
Where Awesome is an outlier among children with epilepsy.<br />
Where, but for diligent hypervigilance, the unthinkable almost certainly will happen.</div><div>It is the reality<br />
Where traumatic memories of the unthinkable are the imperative<br />
To do something as unusual as checking Awesome<br />
Every five minutes, to avoid<br />
The repeat of similar situations again in the future.<br />
<br />
Who can reconcile the two realities?<br />
The two worlds?</div><div>I struggle to do so.</div><div><br />
Half of the time </div><div>I feel ridiculous keeping such<br />
Close track of Awesome.<br />
And the other half of the time,<br />
I wonder if I should be leaving her as<br />
Unsupervised as she sometimes is.<br />
I wonder if I am not negligent<br />
For letting her out of my sight.<br />
<br />
She is so normal<br />
And at the same time so<br />
Anything but normal.<br />
<br />
I shake myself back to reality<br />
<div class="separator" style="clear: both;">
Where the circle of moms is now</div>
<div class="separator" style="clear: both;">
Debating whether a field trip to</div>
<div class="separator" style="clear: both;">
Mercedes--which has a higher age cut-off</div>
<div class="separator" style="clear: both;">
And so would exclude younger children--</div>
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Or Hyundai--which would be a longer drive-</div>
<div class="separator" style="clear: both;">
Would be better. I have nothing</div>
<div class="separator" style="clear: both;">
To contribute to the conversation.</div>
<div class="separator" style="clear: both;">
It's doubtful that we'd</div>
<div class="separator" style="clear: both;">
Be able to participate anyway.</div>
<div class="separator" style="clear: both;">After all, most field trips involve early mornings-- </div>
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And Awesome is seizure prone in the mornings.</div>
<div class="separator" style="clear: both;">Besides, both field trips</div>
<div class="separator" style="clear: both;">
Involve traveling to the middle of nowhere</div>
<div class="separator" style="clear: both;">
Far away from prompt emergency care</div>
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And far away from good quality</div>
<div class="separator" style="clear: both;">
Acute medical care. </div><div class="separator" style="clear: both;">I have no desire whatsoever,</div>
<div class="separator" style="clear: both;">
To add a Lifeflight experience </div>
<div class="separator" style="clear: both;">
To Awesome's medical history.</div>
<div class="separator" style="clear: both;">A medical history that is already far more interesting</div>
<div class="separator" style="clear: both;">
Than I'd ever have liked it to be.</div>
<br />
My mind is muddled. Confused.</div><div>I'm trying to solve an impossible puzzle</div><div>And failing miserably.<br />
Emotions well up within me:<br />
Worry. Fear. Sadness. </div><div>And more confusion.<br /><br />
I've fear I've become a ghost<br />
Who lives on the edge of others' lives.<br />I am here but not really here.<br />I'm not really a legitimate part<br />
Of anything any more. I've become a mere ghost<br />Practicing a prescribed hypervigilance<br />
Coming and going endlessly.<br />
Every five minutes without fail.<br />
<br />
And so, I quietly excuse myself to go<br />
Check on Awesome once again.<br />
Worrying as I go.</div><div>Wondering too,<br />
If it makes any sense for us<br />
To be here this afternoon <br />
Or worry that we've passed the point<br />Such that being here at all</div><div>Is simply a pointless exercise<br />
In frustration for both Awesome and me.<br />
--------------------------<br />
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Having searched all the usual places in order.</div>
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When I step outside into the front yard,</div>
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I see Awesome. </div>
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<br /></div>
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She's the lone girl with a group of four boys.</div>
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The boys are all toting water guns.</div>
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And they're paying no attention </div>
<div class="separator" style="clear: both;">
Whatsoever to Awesome</div>
<div class="separator" style="clear: both;">
As they make their way stealthily,</div>
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Along the path, through the trees,</div>
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Moving as a compact group,</div>
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Looking this way and that as if they were</div>
<div class="separator" style="clear: both;">
A group of soldiers on a mission in enemy territory</div>
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Expecting an ambush at any time from any direction,</div>
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And finally disappearing a minute later around</div>
<div class="separator" style="clear: both;">
The side of the house, leaving Awesome</div>
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Standing alone. </div>
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<br /></div>
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Somewhat sadly, Awesome looks up at me </div>
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Where I stand on the front porch.</div>
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We both know I've found her alone </div>
<div class="separator" style="clear: both;">
One too many times. And though some part of me</div>
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Doesn't want to do so, I find myself </div>
<div class="separator" style="clear: both;">
Firmly telling Awesome that</div>
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If she doesn't find a buddy by the next time</div>
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I check on her, we're going to leave</div>
<div class="separator" style="clear: both;">
And go home. By my tone of voice</div>
<div class="separator" style="clear: both;">
She knows it's not an idle threat.</div>
<div class="separator" style="clear: both;">
That I mean what I say.</div>
<div class="separator" style="clear: both;">
It's not a tone of voice she often hears from me. </div>
<div class="separator" style="clear: both;">
Our eyes meet; Without emotion Awesome</div>
<div class="separator" style="clear: both;">
Indicates her understanding and assent.</div>
<div class="separator" style="clear: both;">
We both know the dangers involved </div>
<div class="separator" style="clear: both;">
For her in this situation. </div>
<div class="separator" style="clear: both;">
The memory of that serious seizure ten days ago</div>
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Is fresh in both our minds,</div>
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And though we both know I'm right.</div>
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Neither of us likes the fact that I'm right.</div>
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There's no anger at each other. Nor even with the situation.</div>
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We're past the point of useless anger or even rebellion.</div>
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There is just the sad recognition that this is our reality.</div>We both know Awesome simply shouldn't be unsupervised.<br />
For more than five minutes at a time.<br />
And we both know that job is made easier<br />
When she sticks close by someone else<br />
Who would notice if she was suddenly seizing<br />
Or acting oddly.<br />
<br />
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But at that moment, before either of us</div>
<div class="separator" style="clear: both;">
Can say anything more,</div>
<div class="separator" style="clear: both;">
Two girls come into view from</div>
<div class="separator" style="clear: both;">
Around the other side of the house</div>
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And as Awesome turns to greet them,</div>
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I turn and go back inside the house.</div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
You can't fight the reality that life hands you. </div>
Sometimes there is nothing to do but<br />
<div class="separator" style="clear: both;">
Live in it.</div>
---------------------<br />
I slip back into my chair<br />
On the edge of the circle of moms.<br />
The moms have proceeded to making a list of the<br />
Field trips that have been decided on.<br />
I have my own internal business to attend to.<br />I'm now caught in</div><div>
A whirlwind of my own emotions.<br />
<br />
I feel like a terrible mom for<br />
Threatening Awesome with that ultimatum.<br />
Does she not deserve all the joys of this afternoon?<br />
Does she not deserve to run free and be free?<br />
At least a few times a month to feel like a normal child?<br />
How could I threaten to take this away from her?<br />
<br />
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As I contemplate the question,</div>
<div class="separator" style="clear: both;">
The same group of four boys, </div>
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I'd seen earlier in the front yard,</div>
<div class="separator" style="clear: both;">
Still toting their water guns</div>
<div class="separator" style="clear: both;">
Noisily burst in through the back door</div>
<div class="separator" style="clear: both;">
Interrupting the moms' discussion about field trips.</div>
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Totally unfazed, the moms look up. </div>
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(Moms of boys have nerves of steel) </div>
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Smiling, one of the moms asks the boys to </div>
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Remember to close the door behind themselves</div>
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And try not to be so loud the next time they</div>
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Come through this room.</div>
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One of the boys closes the door, </div>
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The group mumbles sincere apologies,</div>
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And then exit togetjer,</div>
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Ducking into the kitchen to grab a snack</div>
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Talking excitedly, in now quieter voices</div>
<br />
As I watch the moms model<br />
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Grace with their sons, </div>
<div class="separator" style="clear: both;">
I realize I already know what I must do.</div>
<div class="separator" style="clear: both;">
I was wrong to threaten Awesome with leaving.</div>
<div class="separator" style="clear: both;">
If she can't find a companion.</div>
<div class="separator" style="clear: both;">
Awesome deserves another 2 plus hours of being</div>
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A carefree kid. Even if it means that I must rise</div>
<div class="separator" style="clear: both;">
Every five minutes and go find her again</div>
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To ensure that she's not seizing.</div>
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No matter how ridiculous it seems to me</div>
<div class="separator" style="clear: both;">
No matter how ridiculous it really is, objectively speaking.</div>
<div class="separator" style="clear: both;">
It is simply my responsibility as an adult.</div>
It is simply my responsibility as a parent<br />
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It is simply my responsibility to Awesome</div>
<div class="separator" style="clear: both;">
As she struggles with the limits that Epilepsy</div>
<div class="separator" style="clear: both;">
Imposes on her life as an otherwise normal kid.</div>
And I will continue to do what needs done,<br />
Willingly, and with love.<br />
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<br /></div>
<div class="separator" style="clear: both;">
And I will continue to struggle to reconcile</div>
<div class="separator" style="clear: both;">
All the difficult and contradictory</div>
<div class="separator" style="clear: both;">
Realities of our lives with epilepsy</div>
<div class="separator" style="clear: both;">
Into some kind of integrated whole</div>
<div class="separator" style="clear: both;">
That might someday make</div>
<div class="separator" style="clear: both;">
Some semblance of sense. Right now</div>
<div class="separator" style="clear: both;">
This seems a difficult, if not impossible</div>
<div class="separator" style="clear: both;">
Task. </div>
<br />
But right now, what does seem doable is<br />
<div class="separator" style="clear: both;">
Simply that I check on my Awesome</div>
<div class="separator" style="clear: both;">
Every five minutes without fail</div>
<div class="separator" style="clear: both;">
To ensure she isn't seizing.</div>
<div class="separator" style="clear: both;">
So that I can keep her safe.</div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
In order for Awesome to have</div>
<div class="separator" style="clear: both;">
The chance to BE a normal child,</div>
<div class="separator" style="clear: both;">
I have to be willing to</div>
<div class="separator" style="clear: both;">
Accept that Awesome is <i>not</i> a normal child</div>
<div class="separator" style="clear: both;">
That she is a special needs child</div>
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With an extremely extreme need for strict supervision.</div>
<div class="separator" style="clear: both;">
And while some part of me would prefer to</div>
<div class="separator" style="clear: both;">
Live in denial and avoidance of thinking</div>
<div class="separator" style="clear: both;">
About the extremely abnormal side of things</div>
<div class="separator" style="clear: both;">
Awesome's freedom depends on me</div>
<div class="separator" style="clear: both;">
Not living in denial. </div>
--------------------------<br />
The next two times I find her,<br />
Awesome's again with Callahan.<br />
The first time they are swinging on<br />
A traditional porch swing<br />
On the wide wrap-around porch,<br />
The two girls are bent in towards each other<br />
Engaged in conversation<br />
And they look very happy.<br />
The second time, I find them, they're<br />
Swinging on playground type swings<br />
In the backyard. Again,they're deep in conversation,<br />
Their swinging is less interesting to them<br />
Than their talking with each other.<br />
I feel the same joy for Awesome that I felt earlier<br />
I linger for a moment watching the two from afar,<br />
From the back deck, through the trees.<br />
Awesome's trying her best<br />
To stick with one person.<br />
And Callahan is that person.<br />
<br />
During the five minute check after that<br />
I find Awesome in the house.<br />
She's alone again. This time, getting a snack.<br />
I lean over and tell her not to worry.<br />
We're not going to go home<br />
Just because she's alone. I tell her<br />
I was wrong to tell her what I told her earlier.<br />
She deserves to have a fun afternoon<br />
And we're staying no matter what.<br />
She smiles at me. And rushes out of the room.<br />
She has places to go, fun things to do,<br />
People she likes to hang out with.<br />
<br />
The next time I find her five minutes later,<br />
She and Callahan are battling a bunch of boys<br />
In an upstairs bedroom. She is laughing and smiling.<br />
And as I walk back downstairs, to join the moms,<br />
I too am smiling.<br />
<br />
This being an epilepsy parent is a hard thing.<br />
But I'm learning....<br />
<br />
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<br /></div>
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<br /></div>
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<br /></div>Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-52756638629949349142019-07-02T22:24:00.001-07:002020-05-12T12:53:34.252-07:00On the Shore of Epilepsy's Deep Waters<div class="separator" style="clear: both; text-align: center;">
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Rt0O6Snm4OU/XRY8BpxXWnI/AAAAAAAABfw/5ikwN7x-SiYtJzzJYC7CGwfpTJX82SGlgCLcBGAs/s1600/Status%2Bseizures.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="441" data-original-width="665" height="424" src="https://1.bp.blogspot.com/-Rt0O6Snm4OU/XRY8BpxXWnI/AAAAAAAABfw/5ikwN7x-SiYtJzzJYC7CGwfpTJX82SGlgCLcBGAs/s640/Status%2Bseizures.jpg" width="640" /></a></div>
<div style="text-align: center;">
<div style="text-align: left;"><div style="text-align: center;"><div style="text-align: left;">We walk the shoreline</div><div style="text-align: left;">Between safety and danger</div><div style="text-align: left;">Between a life that is normal </div><div style="text-align: left;">And a life that is anything but normal</div><div style="text-align: left;">Between dry ground</div><div style="text-align: left;">And the seemingly calm water</div><div style="text-align: left;">That conceals an overwhelmingly strong undertow</div><div style="text-align: left;">An undertow that has the power to sweep you,</div><div style="text-align: left;">My bright eyed, my smiling,</div><div style="text-align: left;">Away, into the deep water</div><div style="text-align: left;">Where we and emergency medical personnel must struggle mightily</div><div style="text-align: left;">Just to hold your head above water</div><div style="text-align: left;">To save you.<br /><br /></div><div style="text-align: left;">How easy it is to forget that danger</div><div style="text-align: left;">To become complacent over time</div><div style="text-align: left;">To begin to be distracted--to look away--with increasing frequency</div><div style="text-align: left;">To begin to think that you can safely play on the shore</div><div style="text-align: left;">To begin to forget to be diligent in supervision</div><div style="text-align: left;">To let you wander a little further out than you should</div><div style="text-align: left;">Because the last time you wandered a little further out</div><div style="text-align: left;">Than you should, it was OK. </div><div style="text-align: left;">You were OK.</div><div style="text-align: left;">And therefore</div><div style="text-align: left;">Now, after several times of wandering too far out</div><div style="text-align: left;">In which you were also OK</div><div style="text-align: left;">It's become easy to begin to believe</div><div style="text-align: left;">That life on the shore doesn't necessarily require</div><div style="text-align: left;">Nearly as much diligence as we thought it did</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But, when you live in a place where the undertow is</div><div style="text-align: left;">Too often predictably present and always very powerful</div><div style="text-align: left;">That complacency</div><div style="text-align: left;">That relaxing of diligence</div><div style="text-align: left;">Is very dangerous.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because, sometimes</div><div style="text-align: left;">Just when we least expect it,</div><div style="text-align: left;">The undertow is there. And it's strong,</div><div style="text-align: left;">And really, truly,</div><div style="text-align: left;">It is not OK</div><div style="text-align: left;"><br /></div>
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Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-68204242100321562472018-12-23T10:17:00.000-08:002018-12-27T07:43:30.591-08:00Epilepsy Pre-surgery Lament<div class="separator" style="clear: both; text-align: center;">
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<a href="https://4.bp.blogspot.com/-zbTFRZz2sSc/XBNujWA_yEI/AAAAAAAABaE/5R6jx3gd0ls3CNM04YJOc3qytSixn_rWQCLcBGAs/s1600/EMU-24%2B%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="680" data-original-width="678" height="640" src="https://4.bp.blogspot.com/-zbTFRZz2sSc/XBNujWA_yEI/AAAAAAAABaE/5R6jx3gd0ls3CNM04YJOc3qytSixn_rWQCLcBGAs/s640/EMU-24%2B%25282%2529.jpg" width="638" /></a></div>
<br />
Awesome's eyes are worth a thousand words.<br />
She's in the midst of the 3rd night in a row of sleep deprivation.<br />
The straws in her mouth, her hand a claw, are an attempt at humor<br />
But she's beyond the point at which humor makes sense<br />
She is no longer capable of laughing. Nor am I.<br />
There have been tears. And anger. And bargaining.<br />
And enforced exercise. <br />
This is all overlaid on the base<br />
Of her experiential-informed loathing of hospitals.<br />
And on a deep feeling of danger<br />
A fear of the future<br />
Feelings which pervade this whole process.<br />
<br />
During her hospital VEEG,<br />
Her complete loss of privacy has been a given.<br />
She is watched 24 hrs a day. For day after day<br />
There is sadness. And irritation. And sobbing. And despair. And determination.<br />
And hopelessness. All of these repeat endlessly in a purgatory that just won't stop.<br />
It is a variation on a theme<br />
In a pre-surgery process that was not just the week long hospital VEEG,<br />
But also a second VEEG--with its own frustrations--later that month<br />
And many other previous tests<br />
This is a variation on a theme that has been going on for more than 8 months now<br />
Repeated long periods of waiting<br />
Interspersed with impossibly intense and trying testing trials.<br />
<br />
When she agreed to finally start the epilepsy pre-surgery testing process, back in April<br />
Awesome and we imagined the process would happen over the summer.<br />
But it didn't.<br />
The testing process didn't start until August, and has dragged on and on and on<br />
And it will continue to drag on and on and on.<br />
We wait. We wait and wait.<br />
We wait and wait and wait and wait.<br />
Patiently at first. And then, over time, patiently with great effort.<br />
But occasionally, as time goes on, not so patiently.<br />
And eventually impatiently.<br />
And at times, we wait in anger. <br />
Because the way this is dragging on is demoralizing to Awesome.<br />
Dehumanizing and discouraging and depressing.<br />
This anger comes with its own geography of guilt<br />
About a process that is not intentionally difficult.<br />
But is bureaucratically inane.<br />
That doesn't--but should--take account of patient as person<br />
<br />
It's been excruciating to watch Awesome's life grind to a halt<br />
We will likely have to repeat this school year because it has been impossible<br />
To do what needs done against the backdrop of such uncertainty<br />
And all the intense anxiety and inner psychological turmoil that it generates.<br />
There are the build-ups to--the getting ready for--hospital visits,<br />
There are the hospital visits themselves, that,<br />
No matter how thoroughly or carefully we prepare for them<br />
(Sometimes I wonder if the prep actually makes them worse)<br />
Are always far worse than we could have imagined<br />
And then there are the weeks it takes to recover from the hospital visits.<br />
<br />
And of course, interspersed in there too,<br />
Are the seizures themselves that happen just when you least expect them<br />
The relentless out-of-sync drumbeat<br />
Against which we have no choice but to attempt to live our lives<br />
As normally as can be managed.<br />
<br />
And there have also been two ER visits this fall<br />
For status seizures that just didn't want to stop.<br />
And the recovery from those.<br />
From Awesome's point of view, these are like this:<br />
To one minute be at home,<br />
And seemingly, the next minute, to be waking up in a hospital room<br />
With a doctor in your face asking you if you know where you are,<br />
And not knowing whether it's day or night<br />
Or the same day or another day<br />
And how exactly you got there<br />
And what happened to make you end up there.<br />
Yes, it takes a few days to recover, psychologically<br />
To get your bearings again.<br />
And you need time to sleep off the physical and emotional exhaustion.<br />
<br />
As a result of all the extreme stress this fall, <br />
There has also been garden variety sickness<br />
With its own mundane miseries and medical trappings,<br />
Doctor's visits, medications, secondary infections, relapses, second round medications<br />
And, of course, the rest required to recooperate<br />
<br />
Unpredictable loss of control over your life<br />
And the existential anxiety that results<br />
Are both almost inevitable with epilepsy.<br />
They are two of the most effective tools with which epilepsy tortures its victims<br />
The pre-surgery testing has been just another trying chapter<br />
Simply a more intense variation on the loss-of-control theme<br />
The stuff of which the longer journey that is epilepsy is made<br />
<br />
Awesome is like a victim of kidnapping or life-jacking.<br />
We have hit the 5 year mark during this second life-jacking<br />
The first life-jacking--only a year long--was like a movie trailer,<br />
Only suggesting what was to come later.<br />
<br />
The sadness and ache I feel in my heart as we wait is so strong that it's physical<br />
I mourn deeply for all that Awesome has lost<br />
For a childhood filled with all the things that childhood should be filled with<br />
For the stuff of childhood that her older siblings enjoyed<br />
For the experiences that other kids her age enjoy.<br />
For the things that she was in the thick of enjoying when epilepsy interrupted normal life<br />
For all the things she was doing, would still be doing, and would have done.<br />
For the childhood she would have had,<br />
I mourn for the likelihood of the loss of the days left in her childhood,<br />
Days ticking steadily away as we wait and wait<br />
Days lost to seizures and all the secondary side effects of epilepsy<br />
Days lost forever. Days lost to surviving, not thriving.<br />
Because it's hard to see your child, your bright eyed, your smiling,<br />
Carry a weight too heavy for her years;<br />
To lose the spark in her eyes and struggle to smile,<br />
And sometimes, to just stop smiling. Because sometimes it is all too much.<br />
It's hard to see her world shrinking just when it should be expanding.<br />
I mourn for the child--and then the adult--she would have become <br />
In the presence of all those normal childhood things and experiences<br />
I am sad for the child that she has had to become in the presence of epilepsy,<br />
I mourn deeply for the child that has had to endure<br />
And will continue to have to endure so much<br />
The seizures. The fatigue. The losses, one after another.<br />
The close and relentless supervision necessary to be safe.<br />
The worries about her own life, health, and future,<br />
And now, this pre-surgery process itself. <br />
And this pre-surgery's possible end--a worry all its own.<br />
Whether part of her own brain will have to be cut out to free her from epilepsy.<br />
And whether, with that part of her brain, will go some part of herself she doesn't want to lose.<br />
Some ability. Some part of her vision. <br />
Some part of her ability to use language.<br />
(She is a gifted writer, so to lose that would be to lose an essential part of herself.)<br />
Some strength of body she now enjoys.<br />
And maybe even--because we're dealing with the frontal lobe--the loss<br />
Of her ability to effortlessly<br />
Stay within the bounds of socially acceptable behavior.<br />
Epilepsy might very well demand a ransom<br />
A price for being freed from its clutches<br />
Of some ability now taken for granted<br />
An ability that will disappear.<br />
<br />
I sit on the bed in our darkened bedroom, worrying.<br />
The roar of the wind is a constant tonight.<br />
Against the dark gray of the night sky,<br />
The black silhouettes of trees pitch and sway.<br />
In the distance, the lights of houses on the facing mountain,<br />
Flicker as the trees struggle and dance before them,<br />
Intermittently obscuring their little lights.<br />
The wind is relentless.<br />
It is strong and stronger still,<br />
Swelling in a growing crescendo until it is so strong<br />
That I wonder if the things that stand,<br />
Will continue to be able to stand.<br />
And just when it seems that all will succumb<br />
That trees will bend until they snap and fall,<br />
That the roofs of houses will be blown off,<br />
And that everything clinging to the surface of the earth will be swept away,<br />
The wind's intensity dials back again.<br />
The volume of the roar decreases.<br />
<br />
The undercurrent of fear I feel ebbs and flows with the intensity of the roar. <br />
The roar from a wind that cannot be controlled.<br />
Whether the roar of epilepsy can be controlled.<br />
And at what price.<br />
Remains to be seen.<br />
<br />
<br />
<br />
<br />
<br />
<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com3tag:blogger.com,1999:blog-548540678738371358.post-78893231690474953212018-09-19T16:04:00.001-07:002018-11-03T08:32:30.371-07:00Service-Dog-To-Be: A Little Sunshine & Adorableness<div class="separator" style="clear: both; text-align: center;">
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Meet little Miss Trixie,<br />
Our wee little pixie,<br />
Here, with her girl Awesome.<br />
<br />
And here's a little of what we've learned so far,<br />
One month into the experience of<br />
Being a part of training<br />
Awesome's service dog-to-be puppy.<br />
<br />
Yes, Trixie's adorable. Show-stopping adorable.<br />
Soft and fuzzy. Smart and snuggly. <br />
Tail wagging. Face licking.<br />
Mischievously all puppy.<br />
Eagerly enthusiastic and full of energy.<br />
<br />
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Smart and people-oriented,<br />
Trixie's the offspring of two seizure alert dogs,<br />
While there is no guarantee that she'll alert to seizures (no one can guarantee this),<br />
We're hoping that it will be the case.<br />
And toward that end,<br />
We're collecting saliva samples<br />
During every one of Awesome's convulsive seizures<br />
To facilitate scent training,<br />
In the hope that<br />
Trixie will learn to detect a seizure<br />
Before the seizure happens,<br />
And learn to alert Awesome ahead of time<br />
So Awesome can be safe. But even if<br />
That never happens, Trixie will be a<br />
Seizure Response Dog.<br />
She'll be trained<br />
To respond to Awesome's seizures<br />
When they're already happening.<br />
She'll be trained to alert us, Awesome's caregivers<br />
And perform certain tasks to<br />
Help keep Awesome safe,<br />
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Trixie's training has been carefully crafted.<br />
It began the day she was born.<br />
Her training will continue to be just<br />
as carefully planned and carried out<br />
Throughout the next year and a half.<br />
Trixie attends an all-day dog school<br />
three days a week.<br />
We reinforce her lessons at home.<br />
We have homework to do<br />
Every evening and<br />
Every non-school day too.<br />
To be doing all this while caring for<br />
A child with intractable seizures,<br />
Is a little overwhelming.<br />
But we trust, will be<br />
Worth it in the long term.<br />
Trixie is learning.<br />
Already, at nearly 12 weeks old,<br />
Trixie can pay attention, sit, down, and<br />
Touch an outstretched hand on cue.<br />
<br />
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Even as a tiny puppy,<br />
Trixie's already showing promise<br />
As a seizure response dog.<br />
Calm and undaunted by convulsive seizures,<br />
She already responds well to them.<br />
She springs into action with her tail wagging<br />
Licking Awesome's face, watching her attentively,<br />
Wanting to be close. <br />
Last week after Awesome's first 911 call<br />
And transport since 2007,<br />
We also found out that<br />
Trixie's unfazed by EMT's or excitement.<br />
Her eyes are always on Awesome.<br />
And she simply wants to stay close to her.<br />
<br />
I've always wondered why<br />
Service dogs are so expensive.<br />
Now, since we are a part<br />
Of Trixie's training<br />
(and it's only just begun),<br />
I know the answer.<br />
<br />
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I've learned that a<br />
Properly trained service dog represents<br />
A huge, thoughtful, and<br />
Careful investment of<br />
Time, energy, and effort.<br />
It takes a village, literally,<br />
To raise and train<br />
A well-trained service dog<br />
It takes a team of trainers.<br />
Hours and hours.<br />
Days and days.<br />
Weeks and weeks.<br />
Months and months<br />
Of carefully crafted experiences<br />
And carefully planned training.<br />
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And a family or a foster family<br />
Dedicated to doing the<br />
Things it takes to properly train<br />
A puppy. Hour after hour,<br />
Day after day,<br />
Week after week,<br />
Month after month.<br />
The truth is this:<br />
Training a service dog is<br />
A huge investment<br />
Of time, energy, and love.<br />
Because a dog's childhood,<br />
Her period of learning,<br />
Is compacted<br />
Into a short period of time.<br />
Every day, every interaction,<br />
Is teaching her something.<br />
Intentionally or unintentionally,<br />
Something helpful or unhelpful.<br />
That will impact her life to come.<br />
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<br />
<br />
<br />
<a href="https://1.bp.blogspot.com/-AqzYU7GNY9w/W6KURVrucoI/AAAAAAAABW0/dSuyZPGOTrIoh3avXshUtsyeUPGPz59yACLcBGAs/s1600/20180912_191649.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="893" data-original-width="670" height="400" src="https://1.bp.blogspot.com/-AqzYU7GNY9w/W6KURVrucoI/AAAAAAAABW0/dSuyZPGOTrIoh3avXshUtsyeUPGPz59yACLcBGAs/s400/20180912_191649.jpg" width="300" /></a>A well-trained service dog isn't simply<br />
A dog with a few months of<br />
Dog training.<br />
<br />
A well-behaved, well-trained,<br />
Calm, responsible,<br />
Able to go anywhere,<br />
And meet every new experience<br />
In the world of humans<br />
With grace and good behavior<br />
Service dog,<br />
Is a dog who's been carefully<br />
Selected on the basis of<br />
Traits and temperament.<br />
And into which,<br />
The time, efforts, energy,<br />
Expertise, care, and love<br />
Of many, many people<br />
Have been invested.<br />
<br />
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Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-67753894872796705142018-07-15T23:02:00.000-07:002018-07-15T23:31:29.489-07:00Betwixt and Between: Incongruent Realities<div class="separator" style="clear: both; text-align: center;">
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<br />
I love you, my child. My bright eyed. My smiling.<br />
<br />
I love your wit. The sparkle in your eyes.<br />
<br />
I love the way you are you and apologize to no one for being you. You are at ease with yourself. And so you put others at ease. <br />
<br />
You drink in life--and all that it has to offer--even as the thirsty gulp water--with pure joy in your eyes.<br />
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It is 1:15 on a weekday afternoon. My daughter is sprawled out on the tile floor of a public bathroom just two feet away from the toilet, so deeply asleep that she is nearly unconscious. I sit cross-legged on the floor beside her.</div>
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<br />
Five minutes ago we were simply a normal family out shopping on an early weekday afternoon--mom, dad, and young teen. I was helping my husband David pick out new frames for his glasses. Plastic or wire frames? We'd settled on wire. Should he stick with his current look of small circular frames--or try something new?<br />
<br />
While we were debating these questions, our daughter Awesome, looking very much like the young teenager she is--and not at all wanting to be a part of any decision-making about Dad's glasses--was wandering around the optical showroom, headphones on, listening to a playlist on her Iphone.<br />
<br />
David and I had just settled on the round wire-frames--we'd decided this was his signature look; there was no reason to change it--when Awesome suddenly came scurrying up, pulled me abruptly aside, and quietly, but urgently whispered, "Help me! I'm having a really strong aura."<br />
<br />
From the look in her eyes, this was serious. There was no time to waste. A big seizure was imminent. And so, just like that, we went from normal family mode into emergency crisis management mode. My pressing concern now became keeping Awesome on her feet long enough to find the most private corner of the store--a hidden corner behind furniture, a side hallway, or a bathroom--where we could shelter out of sight and sound. We needed to handle this seizure ourselves. Without creating a public spectacle. Without bystanders being distressed and feeling the imperative to call 911. We needed privacy. And the sooner the better.<br />
<br />
This drill was familiar--we'd been through it many times before; we knew what to do. Awesome slipped her arm firmly around my neck and grasped my shoulder; simultaneously, I slipped my right arm firmly around her waist. We were a unit now; we would move--mother and daughter together--as though we were one. For as long as she could walk, I would guide her. And when she could no longer walk, I would keep her upright and drag her along until we reached our haven.<br />
<br />
We walked away from the store front. Away from people. Towards privacy. My eyes adjusted to the lesser light, scanning the unfamiliar space, and immediately they fell upon a door in the wall, straight ahead. A door marked "Women." Quickly we moved toward it. Momentary prayers that the door would be unlocked--and the restroom empty--were answered. We'd almost succeeded in our goal; but then, just as I'd grasped the handle and pulled the door open, the first motor symptoms of Awesome's focal seizure hit; her head and neck turned steadily upward and to the right; her right arm went out and upward; and her trunk began to twist slowly to the right. Awesome describes this twisting (which is usually one of the last things she remembers before losing consciousness), as exquisitely painful, as her body turns "further than a body should turn." This turning and twisting creates an additional, different problem--the problem of disequilibrium. Being off-balance makes it very hard for Awesome--whether she's sitting or standing when the seizure hits--to remain upright; no longer balanced, she tends to fall over. And so, as soon the turning and twisting started, despite my firm grip around Awesome's waist, it became even more difficult to keep her upright and balanced. Not only that, but I also struggled now, as wide as we were--two abreast, with Awesome now twisted around and arm extended--to negotiate getting us through the door. Somehow though, we managed. Once through the door, having paused to pull it closed behind us, I felt a great relief. Privacy! <br />
<br />
I now felt I could deal with whatever happened next--now that I knew that we would be able to negotiate it on our own terms. Without worrying about the reaction of others to and intervention of others in the seizure drama about to unfold.<br />
<br />
Privacy came not a minute too soon. Two steps inside the door, Awesome could not only no longer walk, but her twisting body also suddenly became as stiff as a board. During this, the tonic phase of her tonic-clonic seizure, a phase when all the muscles in the body tighten and become rigid, Awesome was like one long, stiff plank; she couldn't be folded or bent. As she became stiff, she became "dead weight" and her center of gravity shifted, and once again, adjusting to the change, I struggled to keep her upright. Again, somehow I managed. <br />
<br />
But now, just a few seconds later, having dragged Awesome to the center of the large restroom, I struggled with even greater difficulty as I attempted to lay her safely down on the floor. I had no time to waste, as she'd be transitioning from tonic phase to clonic phase--the convulsing phase--any second now. Awesome needed to be on the floor by the time she started convulsing; I wouldn't be able to hold her while she was convulsing. It was much too hard; she would fall. And I also needed her on the floor so that my hands would be free to administer seizure first aid and rescue meds.<br />
<br />
It's a difficult and awkward task for two people to reposition a very stiff, unconscious person from upright to lying down on the floor; but doing so alone, was nearly impossible. My first attempt was unsuccessful; the second one more successful But then, as I started to succeed, when I had my 115 lb, stiff, unconscious daughter halfway to floor, I suddenly realized that there was a problem: her head was going to be immediately vulnerable to injury on the hard tile floor. And more so, as the clonic portion of the seizure had started as I was lowering her; this would mean that as soon as I put her down, her head would begin hitting hit the tile floor over and over again as she convulsed. I needed something soft under Awesome's head to cushion and protect it. But the only thing available, I realized now--my own sweater--was still on me--it was still being worn. I should have taken it off earlier, as soon as Awesome told me she was having an aura. But I hadn't thought that far ahead. How could I get my sweater off while I was holding Awesome with both hands? And if I put her down, could I really stand to hear her head hitting the tile repeatedly while I tried to get my sweater off?<br />
<br />
There is nothing easy about giving spur of the moment seizure first aid. Seizure first aid calls for fast, furious thinking and equally fast, furious, but carefully considered, smart action. Sometimes it seems like a game of chess in which the moves come so fast and furiously that you only hope and pray that you're smart and strategic enough not to screw up the whole thing. I felt suddenly like I had already been bested in this strategy game. I'd failed to think far enough ahead. I'd made a blunder. I was about to be check-mated.<br />
<br />
Thankfully, I was rescued from my conundrum, for just at that moment, David burst in through the door--closing the door behind himself to preserve privacy. Now, at my request, David took over holding Awesome--suspended above the ground--for a few seconds while I hastily tore off my sweater, folded it over, and placed it on the floor where I estimated Awesome's head would soon be. And then carefully, the two of us eased Awesome onto to the tile floor of the public bathroom.<br />
<br />
And not a minute too soon! Awesome was now very actively seizing--convulsing (the clonic phase of the tonic-clonic seizure). Together then, David and I administered seizure first aid. Ideally--done right--seizure first aid really is, we've found, a two person job.... And it can keep two people hopping to stay ahead of the curve!<br />
<br />
First, I removed Awesome's new glasses that were already half off and in danger of being damaged. Folding them, I carefully set them down on the floor, several feet away, out of harm's way. <br />
<br />
Next, together, David and I turned Awesome onto her side, in order to keep her airways clear of both the excess saliva that happens with seizures, but also potentially, from reflux or vomit during or after the seizure, While vomiting during a seizure is rare, we do see it sometimes. Awesome had already once paid the price for having been in the "wrong" aka a risky position, during one of her seizures, a seizure in which she'd vomited, aspirated, and then spent 18 days in the hospital with aspiration pneumonia. We would not risk making that mistake again. Getting Awesome in a safe position on her side is now one of our first priorities when administering seizure first aid.<br />
<br />
And though my sweater--now under her head--was keeping Awesome from repeatedly hitting the bare tile floor with her head, it was soon clear that the sweater was not really enough protection. And so, kneeling by Awesome's side, David now carefully cradled Awesome's head in his hands to protect her head from injury. <br />
<br />
Meanwhile I struggled to get the rescue meds from the rescue medication bag I was wearing.<br />
<br />
In the midst of these efforts, the Empatica Embrace seizure detection watch did its job--which is to send a phone and a text alert to caregivers after detecting at least 20 seconds of vigorous motor movement. The watch called our--David and my--phones, setting off a cacophony of special ring tones. Not wanting to call any attention to what was happening in the Women's bathroom, in the midst of all this chaos, we paused what we were doing, scrambling to silence our phones. This silencing accomplished, David went back to cradling Awesome's head while I turned my attention to administering the emergency CBD into the mucus membranes in the outer pocket of Awesome's mouth. <br />
<br />
A minute later and only about two minutes after the convulsive seizure had begun, the seizure began to calm. It was soon over--signaled by Awesome closing her eyes. Thank goodness this was a seizure that ended on its own--it was not a status seizure! The pharmaceutical rescue med Diastat had not been needed to stop it.<br />
<br />
David and I both looked at each other and heaved a sigh of relief. All was well. The seizure crisis appeared to be over, though Awesome would need to continue to be closely monitored for the next 15 minutes to an hour--or however long it took her to sleep and then wake up, and return to enough of a baseline so that she could get up and reasonably walk, with assistance, to the car. I would need to sit beside Awesome and watch her carefully for signs of problems--breathing issues, the start of another seizure, or whatever.<br />
<br />
But now, as soon as the seizure was over, I urged David to go back to the optical sales floor, back to his salesperson, and finish purchasing--ordering--his glasses. We were at the optical store to accomplish the goal of ordering his new glasses; we shouldn't allow the seizure keep us from accomplishing that goal.<br />
<br />
And so, less than five minutes after Awesome had first urgently whispered "Help me!," David left the bathroom to go seek out the optical salesclerk, and I was left sitting on the bathroom floor watching Awesome in her post-ictal sleep. Thinking about how much I hate epilepsy. About how it affects our lives. And really, about how very little margin we have in our lives from one moment to the next. <br />
<br />
And as I sat there, I couldn't help but note too, how clean the public bathroom floor on which Awesome lay--and I sat--was. Notwithstanding the one dead centipede in the crack between the wall and the floor. I decided to ignore the centipede and concentrate on the positive.<br />
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I sit beside you, my fallen child. And the picture is incongruous and troubling. Epilepsy has laid you low yet again. Taken the smile from your face. The sparkle from your eye. <br />
<br />
It has conspired to steal your dignity, your independence, and your developmental competence (at least in the moment) from you. It conspires to steal from us both a sense of normality and dignity. Epilepsy is the tyranny of the unexpected.<br />
<br />
And so, here we are, left sheltering in a public bathroom. You, sprawled out on the floor, oblivious to the world and your own existence and all that has just transpired and even the fact that you are lying on a public restroom floor. And me, sitting here, standing guard over you, watching for alterations in your breathing, your coloring....or really anything that would send me scrambling to dial 911 for medical assistance.<br />
<br />
You will sleep soundly for 20 more minutes. And mumble incoherently for another 10 minutes. You, my supremely verbal child--who said her first words at 6 months, who spoke in sentences at 1 year, who learned to read as a 4 year old, and who is a gifted writer--reduced to incoherent verbal non-sense as you struggle to express thoughts that can't quite form, and once formed, that you can't express. <br />
<br />
And because I want so desperately for you to be OK, I will try too soon to get you up off the floor of the bathroom. To get you to your feet so that we can walk out of this public bathroom together--once again, mother and daughter, as a unit, you with your arm around me, me with my arm around your waist, and put this seizure experience behind us. And I will succeed in getting you to your feet, but then you will stumble, you'll crumple like a rag doll, and you'll collapse. Like a drunk. And so, I'll be thankful that my arms were firmly around your chest, as I struggle to ease you back to the ground again, to pillow your head with my sweater yet again. And you'll stop mumbling incoherently then, spent from the effort of trying to speak and to stand. I'll arrange you on your side again. And you'll sleep for another 10 minutes on the floor of the public bathroom. And I'll sit beside you again, in some living version of purgatory, thinking again about how exquisitely painful it is to watch epilepsy do this to you. My child. My bright-eyed. My smiling.<br />
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<br />
Thankfully, no one has needed the Women's restroom during the time we've occupied it. No one has knocked on the door. No one but David has come through the door.<br />
<br />
Forty minutes after her seizure started, Awesome, still lying on the floor of the public bathroom, suddenly stirs, opens her eyes, and asks in perfect English, "What happened? Did I have a seizure?" She is verbally coherent again. And she's not pleased to find herself lying on the floor of the Women's room. I help her to sit up, watching over her to make sure she doesn't suddenly fall over.<br />
<br />
After sitting there for a couple of minutes--because I insist that she do so before trying to stand-- she asks if where Dad is and whether we can go to the car. While watching her, I stuff her Iphone, her headphones, her glasses, and now my saliva soaked sweater into my over-sized purse. Having slung my purse and the rescue medicine bag over my head, wearing them across my chest, I'm now prepared to help Awesome to her feet and assist her in walking to the car. We'll shelter in the car until David is done ordering his eyeglasses. <br />
<br />
We leave the Women's room in the same way that we entered it. Awesome slips her arm firmly around my neck and grasps my shoulder; simultaneously, I slip my right arm firmly around her waist. A unit again, we move--mother and daughter together. She propels herself forward, mostly on her own. I have my arm around her as insurance against her falling. And periodically, she does need my help. She is not steady on her feet. She stumbles, her consciousness momentarily falters, and she lurches like a drunk. I tighten my grip on her waist. She looks up at me and smiles. I reassure her and tell her she's doing well. I tell her that, "It's all right. You're going to be fine. Don't worry. It's OK." And we walk across the long store, out the front door, and along the sidewalk to the place where our car is parked, in fits and starts. Fine one minute. And not so fine the next minute. I help her into the middle seat of our mini van. She is exhausted. I suggest that she use her own sweater, on the seat of the car, as a pillow, and lie down across the bench of the middle seat. I start the car so the air-conditioning will come on and we won't roast in the summer heat. <br />
<br />
As we sit waiting for David, who calls on the phone to tell us he'll be out in just a minute--that he's nearly done. Awesome is restless and bothered. Sometimes she lies down--she rests and momentarily dozes. Sometimes she sits up, emotionally upset, close to tears--and sometimes the tears come--and she complains. She's tired of all this. Tired of being OK one minute and not OK the next. Tired of having seizures. Tired of being tired. Tired of good days like today turning into bad days. Into sad days. Tired of losing so much time. Tired of changed plans. Tired of epilepsy.<br />
<br />
It's exquisitely painful sitting there listening to Awesome. Everything she feels is valid. Everything she says is true. Everything she says is what I've spent the last 45 minutes thinking and feeling while sitting on the floor of the public bathroom. And it's all the more painful because I am impotent. I can do nothing to make any of it any better. Or even different.<br />
<br />
As I sit in the car watching Awesome mourning what epilepsy does to her--the fact that she can walk into the store as a normal teenager and ten minutes later, be sprawled out on the floor of the bathroom, unconscious, and three-quarters of an hour later, need assistance to be able to walk out of the store, stumbling like a drunk--I see the cars going by on the busy street behind her. I think about the fact that almost all the people in those cars and in the stores around us take for granted that they will be conscious and functional from one minute to the next. Something that Awesome absolutely can't take for granted. I think about the fact that our whole lives--our family's life--are organized around the fact that consciousness and functionality could be there one minute and gone the next. And around the fact, that you have to anticipate that loss. And plan for it. Because it happens over and over again for Awesome. </div>
<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com7tag:blogger.com,1999:blog-548540678738371358.post-43730249725748340572018-06-29T22:02:00.000-07:002018-06-29T22:53:20.148-07:00Laboring in the Labyrinth<div class="separator" style="clear: both; text-align: center;">
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I've noticed that the more intense the period of time that we're going through with epilepsy and the more trouble we're having in making sense of it all, the more I tend to be at a loss for words--and so, the less I write. <br />
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I've also noticed that during these times, when the chaos of epilepsy is overwhelming--I often turn to analogy. Analogy doesn't require that the details of our epilepsy journey fit into a coherent whole. It doesn't demand that we decide which interpretation of our recent experience is more correct. Analogy doesn't even require that important things be sorted from unimportant things. Rather, analogy is like a gestalt of our epilepsy journey. Like an impressionist painting, analogy simply gives voice to the feel, the geography, the experience, and the emotions of being in a particular situation. Analogy conveys some aspect of what is like to be us right now, living and experiencing what we are in regard to epilepsy. <br />
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Over the few years since I started this blog, I've written several posts analogizing living with intractable epilepsy, to various things: <a href="https://brainblipjourney.blogspot.com/2017/04/on-threat-of-tornadoes-and-seizures.html" target="_blank"> To living with the threat of a tornado.</a> <a href="https://brainblipjourney.blogspot.com/2017/05/the-confusion-of-epilepsy-dorothys.html" target="_blank">To being Dorothy from the Wizard of Oz in her airborne house.</a> <a href="https://brainblipjourney.blogspot.com/2017/06/adrift-in-vast-churning-deep-of.html" target="_blank">To being adrift in a churning sea.</a> <a href="https://brainblipjourney.blogspot.com/2017/05/gambling-with-alice-triumph-in-three.html" target="_blank">To gambling with Alice (in Wonderland).</a> <a href="https://brainblipjourney.blogspot.com/2016/07/living-x-files-epilepsys-missing-moments.html" target="_blank">To living the X-Files</a>. <a href="https://brainblipjourney.blogspot.com/2017/04/the-nature-of-hope-in-intractable.html" target="_blank">To living in the dark without the light of hope.</a><br />
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And so here we are in another difficult period of time. Confused. Overwhelmed. And for me--at a loss for words. But yet still yearning to express something of what it is like to be here. To be us. In this situation. And so, analogy slips in again. At least until understanding, context, and interpretation can be better chosen. And until our ability to sort out the important from the unimportant is in evidence with some better degree of confidence.<br />
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These days with epilepsy, it's easy to feel as if our lives are pressed in close, and that the spaces we inhabit are dark and uncomfortably close. Life has become earthy and essential, stripped to its essence.<br />
<br />
Sometimes it seems that we thread our way through the possible pitfalls of life with epilepsy like <a href="http://classictales.educ.cam.ac.uk/stories/metamorphoses/thesusandtheminotaur/transcripttheseusandtheminotaur.pdf" target="_blank">Theseus cautiously threaded his way through the dark tunnels of the labyrinth under King Minos' palace, always acutely mindful of the Minotaur</a>--that fearsome monster that had already gobbled up so many of Theseus's strong and beautiful young compatriots. The same Minotaur that will eventually, inevitably be waiting around, if not the next dark corner, then the one after that. Or the one after that.<br />
<br />
We too cautiously shuttle our daughter Awesome through the narrow passageways of daily life, inching our way along, cautiously, ever mindful of the beast that might be waiting around the next corner. But unlike Theseus who must encounter and best the beast only once to save himself and his companions, we--because we can neither find our way out of the maze, nor best the beast--must encounter the beast time and time again. <br />
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And so we live our lives as all warriors who would win and not fall, do--aspiring and straining always to be prepared. Thinking strategically, acting strategically. Never neglecting to having essential life-preserving, fighting implements at hand. Always positioning ourselves so that when--without warning--the battle begins, we're more likely to be in an advantageous position. Not caught unprepared and unawares. Not having inadvertently put ourselves at a disadvantage, watchful not to have let one thing lead to another--and lead to another--until we are deep down in the dead end of so many wrong turns (without a thread to follow back) that the battle is lost before it has begun. And so, we arrange the details of our lives--those over which we have control--carefully, ever mindful of the things that aren't there, but could be in the next moment. We make sure we've charted our way of escape, as Theseus did his, by unwinding a string behind us. We make note of our journey, every turn, every step.<br />
<br />
It's a war waged on an epic scale, and yet the combat is close and intimate, It's a battle that's being waged within the confines of a life that so often appears, from the outside, to be normal. Sometimes it seems like we live life on two levels. The level where everything seems deceptively normal--and the level where things are very different from the normal that they seem, but where things are much more consequential and critical.<br />
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The choices we make from moment to moment can seem so mundane, but we also know that every time we choose which way to turn in the maze ahead, the choice brings with it real consequences--good or bad--that follow. We try to choose carefully. And always, whenever possible, to make an informed choice. <br />
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It's not until you experience some of the defeats and see the ferocity of the battle--the seizures that break in on the everyday life and their seriousness--that most people who know us and Awesome begin to understand the import and seriousness of the battles we fight, the care we take to prepare and defend, and what is really at stake in the bigger war we fight. <br />
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But, because so few really understand the hidden world where we shuttle about like this, it's a lonely life we live in the trenches, in the hidden caves underground. Like Theseus in the labyrinth, we labor alone. Bravely battling the beast when we encounter it. Deep down underground. In a confusing, twisted maze for which there is no map.Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-37160691908557896182018-06-07T00:17:00.002-07:002022-02-21T16:52:25.015-08:00Watching, Waiting, Enduring...<div class="separator" style="clear: both; text-align: center;">
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Sub-tropical depression Alberto was a part of our world last week. As I woke in the early morning, from our second story bedroom window, I could see the tree tops swaying and dancing in the misty wet wind. The rain, fine and intense, fell this way and that in wind-driven sheets, thoroughly drenching everything.<br />
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Somehow Alberto seems so apt for where we are in our lives right now. The dramatic, dark, stormy skies--so changeable from one hour to the next. The endless sheets of driven soaking rain. And the feeling that this storm, moving at a 15 miles per hour--not away, but circling around--will never leave us. We wait, sequestered in the house, as the rain pelts against the window screens.<br />
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Meanwhile, white powdery mildew fungus--which thrives in humid air and constant rain--threatens my zucchini and cucumber plants. During a lull in the storm, I venture out with my spray bottle of baking soda water; in an attempt to save them, I spray the already drowning leaves. Starting to remove the similarly caused but differently diseased leaves from my tomato plants, I glance up; the western sky is an intense and threatening deep, dark blue. Yet another thunder storm is coming. Driven back inside again, as the pelting of the wind-blown rain starts anew, our dog Coco runs from window to window barking at the thunder. White window sills are now covered in muddy paw prints; the nearby wall splattered with brown splotches. Sadly and similarly, Coco spent last night, beginning at 2 AM, bothered and barking. Kindly and heroically, David--in an attempt to shield Awesome and I from the noise that threatened to interrupt our sleep--took him downstairs where his barking would be muffled. For the remainder of the night, David dosed on and off in the den, resting on a recliner while Coco continued.<br />
<br />
The storms have been hard on us all.<br />
<br />
Our whole little world is in its own miserable watch, and wait mode. There are the storms that circle us. The big seizure that is due, but hasn't yet happened (so that we are ever watchful and worried). So too, there is the continued push to finish our homeschool year--which seems to be dragging on and on. And then there is the much-anticipated--for months and months now--mid June appointment with Awesome's second epileptologist--the one who is charged with taking us through the epilepsy pre-surgery process. That appointment is still two weeks away on June 19, but it's always in the back of our minds, looming large in our lives, like a day of reckoning, connected to and controlling our uncertain future. That appointment is the first step in a pre-surgery process that may or may not ultimately lead to Awesome being recommended as an epilepsy surgery candidate.<br />
<br />
Surgery is one of the few hopes we still have for freeing Awesome from her intractable seizures.<br />
<br />
Epilepsy surgery is something that we're totally terrified of--and so something that we're not sure we really want to gamble on--but something that we're simultaneously, strongly drawn to because of the almost-too-wonderful-to-contemplate possible hope it offers. One that takes our breath away and makes our hearts beat faster and swell with the imagining of something that, were it to become reality, would be far better than winning the lottery. It would be like waking up in a new heaven and a new earth. Being born again into a new life. Even more so because of the knowledge of the limiting, difficult life that had been left behind. Dare we even contemplate how wonderful it would be?<br />
<br />
We are drawn to surgery's promise as a moth is drawn to the light. We are worried that the analogy might turn out to be more apt than we'd like. Things can go wrong with surgery. Weaknesses, partial paralysis, impairments, and always the chance that things will be made worse, not better, seizure-wise. And all these possible dangers, despite the dutifully gathered data, the carefully made calculations, and the educated judgments of the epilepsy surgery conference (team) comprised of all the epileptologists, neurosurgeons, neuropsychologists, and other professionals in our Children's Hospital's Pediatric Epilepsy Program. That conference convenes to review pre-surgical testing data and must unanimously agree that the benefits of a particular child's proposed epilepsy surgery outweighs the risks--and that the risks are acceptable. That they don't involve possible compromise of the eloquent cortex--the parts of the brain the removal of which would result in the loss of sensory processing, the loss of language abilities, and paralysis of varying degrees. Without the unanimous agreement of the epilepsy surgery conference, any hope of epilepsy surgery ends there. As it should. After all, this is serious business. As our epileptologist--the same one who thinks this may be our way forward--bluntly put it: "It's a big deal to cut out a part of someone's brain."<br />
<br />
And so it's an uneasy gamble we face, with real risks in both directions--risks in continuing on as we are and risks in considering surgery. Epilepsy often forces us to live life between a rock and a hard place. We must constantly "pick our poison." We must choose from an array of choices we don't like.<br /><br />But, at least for now, it seems, the way forward for us is through a pre-surgery process. A process that hopefully will net, if not a cure, then at least some answers as to what is actually going on with Awesome's seizures. Finally, perhaps we'll have enough definitive information so that her epileptologists feel like her complex case finally makes some sense. That at least that is the hope.<br />
<br />
The stormy weather circles us. The rain soaks everything. The powdery mildew fungus continues to smolder week after week, a threat that can be driven back but not defeated, always there, waiting for its opportunity to strengthen and spread again. The seizures too, continue. We have been driven back to our narrow strip of land between the two cliffs. Right now we are happy to be here. It seems safe after a month spent closer to the edge. It also seems safe as we contemplate an uncertain future.<br />
<br />
Sequestered in our safe space, we continue to wait. And watch. And worry. And endure. One day at a time. Sometimes patiently; sometimes not so patiently.Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-43920203719483372822018-05-19T21:57:00.003-07:002018-05-20T13:01:45.531-07:00100<div jsname="U8S5sf" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: small;">
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That Saturday was supposed to have been our first real day of rest and relaxation in many, many months. The preceding 12 months had been eventful, busy, and often difficult. They were months filled with major life stresses and transitions for both us and our close family members. Those stresses were capped off with moving to a new house in January, and then with <a href="https://brainblipjourney.blogspot.com/2018/04/heart-and-head-acute-crises-and-long.html" target="_blank">my having had surgery</a> in March.<br />
<br />
It's been a busy time, not just because of the things that have happened (the life stresses for us and our loved ones), but also because of all the tasks that still beckon and await, tasks that still need time, attention, effort, and resolution. <br />
<br />
But there's only so long that a family can go on so intensely. There comes a time when you simply need--not want, but need--a break. And so, when we'd finally taken care of the absolutely critical things, we decided to clear the decks and take a day for rest, relaxation, and rejuvenation.<br />
<br />
And so there we were, that Saturday morning four weeks ago, ready for our day of rest.<br />
<br />
The wonder of being able to take a day off and not worry about what should be getting done was both exhilarating and luxurious. Delicious even. And we were thrilled and excited.<br />
<br />
After sleeping in and pulling off an appropriately slow and slovenly start to the day, we'd decided we didn't want to cook. And so David had just driven off to go pick up lunch. Meanwhile, on the back deck, Awesome and I earnestly began the task of relaxing. <br />
<br />
Things had started well enough.<br />
<br />
Awesome had been sitting there on the cushioned reclining deck chair, reading a book, as happy as can be--until suddenly she wasn't. And as soon as she wasn't, she was jumping up and with urgency in her voice. shouting, "Oh, no!"<br />
<br />
The transition from relaxation mode with me sitting at the nearby table with my feet up, reading a book, and enjoying the prospect of a day of relaxation--to emergency management mode- was immediate. Sadly, epilepsy's given us plenty of practice in making these sudden shifts.<br />
<br />
When a seizure strikes, our first priority is always to get Awesome into a safe situation--a safe place and a safe position. Strategically surveying the scene, it was clear that that safe place was not where Awesome was right now. The cushioned deck chair on which she'd been sitting was too narrow--so narrow that she'd likely fall off it if she stayed there for the seizure; likewise, were she to fall, the concrete floor of the elevated, covered deck looked menacingly dangerous. Dropping my book as I jumped up, I ran to Awesome and slipped one of my arms firmly around her waist--so that I could support her and keep her from falling if her knees suddenly buckled--and swiftly--while she could still stand and walk--ushered her into the house through the open sliding glass door. Once inside, I quickly guided her to a low, wide futon couch, helping her first to sit and then to lie down on her right side. <br />
<br />
Surprised but pleased that she was still conscious, I dug into the outer pocket of the emergency rescue bag I was wearing, found a small glass roller bottle of Frankincense oil, uncapped it, and handed it to her to smell. My hope was that smelling it might delay the impending seizure. Meanwhile, from the same bag, I also took an oral syringe of 10:1 CBD. If I could administer it quickly enough, the CBD might abort Awesome's aura--her simple partial seizure--now, before it generalized into a convulsive seizure.<br />
<br />
But it was already too late. As I prepared to dispense the CBD into the mucus membranes of her mouth where it would be quickly absorbed, Awesome lost the battle against the generalization of her seizure. Her head began to turn firmly to the right, her right arm began to stiffen and straighten, and then very quickly, the full force of the tonic-clonic (convulsive) seizure hit. <br />
<br />
For the next minute and a half while I sat helplessly at her side, the monster that is epilepsy had my child--our sweet, wonderful Awesome--firmly within its terrible grasp. <br />
<br />
It's an awful thing to watch your child seize, even when you've learned through repeated experience to stay calm.<br />
<br />
Thankfully, this seizure (<a href="https://brainblipjourney.blogspot.com/2017/11/thanksgiving-18-months-into-cbd.html" target="_blank">we have CBD to thank for this</a>) was of short duration and moderate severity. The convulsive part ended within a minute; another minute after that, Awesome's eyes closed, signaling the end of the seizure. She now fell into a deep and peaceful sleep.<br />
<br />
While I'm capable of handling seizures and their aftermath--the post-ictal period--alone, I prefer not to. It's always helpful and comforting to have both moral support and also a second head and a second set of hands. And so, as I sat beside Awesome, I called David to let him know what had just happened. Only a couple of miles away, he decided to turn around and come back home again. Lunch could wait. Awesome would be in no condition to even think about food for the better part of an hour. And David and I no longer felt hungry.<br />
<br />
As I sat beside Awesome before David got home, listening to her heavy breathing, looking at her now peaceful face, I thought about how ironic it was that, on this our day of rest and relaxation, that epilepsy had done it again. It had scuttled our plans. Hijacked our day, and made clear again that it had the power to continue to hijack Awesome's and our lives. It had stalked us and attacked Awesome again when we'd least expected it. And we'd been left lying here wounded and waiting...and wondering at epilepsy's unbridled power to do so. And so, there we were on that intended day of rest--Awesome out cold because of a seizure and me in some medium range version of fight or flight mode, adrenaline coursing through my veins, making the world at once more real and less comforting and less understandable. And there we were too, feeling exactly the opposite of relaxed and restful. <br />
<br />
And so too, there I was thinking about seizures, and epilepsy and the nature of a life spent with them. But the truth was this: I hadn't wanted to spend any time that day thinking about seizures or epilepsy. Today was supposed to have been a day of catching our breath. Kind of like coming up for air and a rest before taking another deep breath and diving down below the surface again.<br />
<br />
But how could I avoid thinking about seizures and epilepsy as I sat there next to my child sleeping off the exhaustion of brain and body that is the aftermath of a convulsive seizure?<br />
<br />
And the pressure to think about it all was greater than usual this morning, because, with this seizure, Awesome had reached a significant negative milestone: her 100th convulsive seizure.<br />
<br />
And with her 100th convulsive seizure, like it or not, we stood perched in a pivotal moment between past and future. A milestone like this was ipso facto an imperative to take stock. To think back on those first 100 seizures--both individually and as a collective experiential whole, a "corpus," a "body" and to remember, compare, contrast, contemplate, conclude, feel... We had amassed a whole body of experience. Narrow misses. Lessons learned. Dangers flushed out and understood. We've endured these 100 seizures. But those 100 seizures have also profoundly shaped us: shaped the way we think, the way we do things. How we understand epilepsy. How we understand our responsibilities as parents. How we protect our daughter. And how we then live. Those 100 seizures as a whole and the various individual seizures are always in the back of our minds. Mostly as wary lessons in prudence, instructing us always, to think ahead. To be prepared. To have a plan. To diligently monitor to keep Awesome safe. And as I sat there, memories of various individual seizures tumbled through my head. Also, thoughts of how epilepsy has changed us. Molded us. Trained us. And left us always on the defensive, because epilepsy seems always on the offensive. Always stalking. Always surprising.<br />
<br />
So too, the 100th seizure was a imperative to look ahead. To wonder. To worry. To think about whether Awesome could and would ever be extricated from the deep quicksand that is intractable epilepsy. A pre-surgery work-up is on the horizon; in fact, it had just been moved to the foreground of the horizon by her epileptologist a couple of days earlier at our latest appointment with him. The prospect of epilepsy surgery is both enticingly hopeful and also at once extremely terrifying. The truth is that in the couple of days between that appointment and that Saturday morning, we had kind of shoved the prospect of surgery into the recesses of our minds to let it sit there for awhile and become less emotionally overwhelming before we processed all of the fear, hope, and other emotions that the prospect of surgery brings up. Processing it all and coming to terms with it all, IS on our agendas. I promise that it is. But that Saturday morning as I sat watching Awesome in her post-ictal sleep, I just couldn't go there in my mind. I just couldn't think about or process the what-if's of epilepsy surgery. Not this morning. Not when we were trying to find our way out of living on overload. Not on a day of rest and relaxation. I really didn't want to revisit the past or look ahead to the future. This morning, I simply wanted to live in the present. This day. And delay thinking about both the past and the future.<br />
<br />
David came in the front door at some point. After exchanging a few necessary words and a hug, we sat there together in exhausted silence. After Awesome has a major seizure, it usually takes us time to calm down, readjust, and regroup. We often find ourselves in a quiet state of reflective mourning, struggling with deep feelings of sadness. And though perhaps it's just a side effect of the adrenaline in our systems--and it might sound odd to say it--after a seizure reality always seems especially real. It's right after a seizure that we most intensely feel, in a bone-deep way, the seriousness and intractability of intractable epilepsy. The terrifying power of intractable seizures--seizures that we--and so far, medical science too--are powerless to stop. And so too, we seem especially acutely aware of the danger and vulnerability of living always, no matter what we do, so close to the edge. We can't help but do the math. It's the reality of our lives that we live only one ill-timed lapse in monitoring away from disaster--from something that would leave Awesome alone and vulnerable, facing the dangers of a seizure alone. And so too, we can't help but realize that we're only one very ill-timed or unusual or unmonitored seizure away from a serious injury, an ICU stay, or worse. In this regard, there's always the feeling, after a seizure, of having dodged a bullet. Of having been lucky. Of realizing that things could have gone the other way, and that one day they inevitably <b><i>will</i></b> go the wrong way--and that on that day we won't be so lucky. Consequently, the reality of epilepsy is really in our faces in a uniquely intense way after a seizure. And even if we avoid actually <i style="font-weight: bold;">thinking</i> these thoughts during the post-ictal period while we're siting with our unconscious child, we <i style="font-weight: bold;">feel</i> them, We feel the danger. It's an inevitable Post Traumatic Stress reaction thing that we experience. And it takes awhile to quell it. To let those fears and feelings work themselves through. In some ways, feeling these things in the post-ictal period--involuntarily--is nearly as traumatic as the seizure itself.<br />
<br />
As we sat there beside Awesome that morning, waiting for her to start to stir again, first mumbling incoherently and drifting in and out of consciousness, and then finally finding her foothold again in the conscious, waking, coherent world, we experienced all these thoughts and feelings. <br />
<br />
And we really didn't know what to think. What it made sense to think.<br />
<br />
And so there we were. Our day of rest and relaxation, though it was still a day of rest and relaxation, didn't feel the same anymore. It was no longer hopeful, happy, sunshiny, and all full of possibility; it now felt sadder, darker, less hopeful. It was like a dark cloud had come and blotted out the sunshine, the happiness, and the light and had dampened the hopeful, happy energy. The headspace where each of us was left--David, Awesome, and I--was different from the place where we'd begun the day, just a couple of hours earlier. We were in a weary, worried, defeated, and tired space, longing once again for rest and relaxation.<br />
<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-73079613147605372282018-04-15T08:08:00.001-07:002018-09-18T06:09:13.786-07:00Heart and Head: Acute Crises and Long Term Solutions<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-8ZlYNiJGP3A/WtNq0I3FLPI/AAAAAAAABPM/fzzlH48Ymx8OH7nPx4XyclvsVhlMw-f0ACLcBGAs/s1600/8-14-09%2BRAW_22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1072" data-original-width="1600" height="428" src="https://2.bp.blogspot.com/-8ZlYNiJGP3A/WtNq0I3FLPI/AAAAAAAABPM/fzzlH48Ymx8OH7nPx4XyclvsVhlMw-f0ACLcBGAs/s640/8-14-09%2BRAW_22.jpg" width="640" /></a></div>
<br />
When it rains it pours. <br />
<br />
It was mid March. The very early hours of the morning, well before dawn. And very dark.<br />
<br />
Waking slowly from a deep slumber, I was vaguely aware that something was very wrong. Part of me--the part that wanted to continue sleeping--didn't want to know what the other part--the part that was trying to wake me up--was trying to tell me. <br />
<br />
Slowly the part trying to get my attention won; my conscious mind became aware of the situation, and I startled awake. My heart was beating wildly in my chest. I groaned and sat up in bed. This was not good. Trying not to wake our daughter Awesome, I woke my husband David. <br />
<br />
We both knew this drill all too well. David stumbled over to the dresser to find the pulse oximeter, which soon revealed my heart rate to be 160 beats per minute. Having confirmed the crisis, David headed off to the kitchen to get several bananas and a handful of Medjool dates--both good sources of potassium. Meanwhile, grabbing my water bottle and sitting down on the floor, I began to chug water--just in case I was slightly dehydrated. Between gulps, I tried to concentrate on breathing slowly and deeply from my abdomen. Intermittently I also tried various of the <a href="https://acls.com/free-resources/knowledge-base/tachycardia/vagal-maneuvers" target="_blank">vagal maneuvers</a> I'd been taught (coughing, holding my breath and bearing down, etc.) in an attempt to stimulate my vagus nerve--the main nerve running through the body that acts as a kind of nervous system reset button (Incidentally, this is same vagus nerve targeted by the VNS--the vagus nerve stimulator--a device implanted in those with intractable epilepsy to abort and to control seizures). If I could stimulate my vagus nerve, then my heart would convert back to normal rhythm.<br />
<br />
I've had occasional <a href="https://en.wikipedia.org/wiki/Supraventricular_tachycardia" target="_blank">SupraVentricular Tachycardia (SVT)</a> for nearly the last 30 years. Mostly my episodes happen in the wee hours of the night or the early morning hours before dawn. Typically, I wake from a deep sleep to find my heart beating very quickly--160 to over 200 beats per minute. These episodes happen in clusters every 6 months to two years. And then just as quickly as the episodes appear, they go away again.<br />
<br />
On our first meeting, the man who would become my cardiologist--with an ironic twinkle in his eye--had simultaneously both horrified and reassured me by telling me that if my arrhythmia had, in fact, been dangerous, I'd already be dead. Since then, based both on catching one of my middle of the night episodes on EKG, and also on reading my ER EKG's, he'd repeatedly assured me that my particular kind of SVT--caused by an accessory (extra) electrical pathway in the AV node of the heart--was absolutely not dangerous, but was instead, simply a nuisance. Something that he said I'd find over time to be very inconvenient and also very annoying.<br />
<br />
My cardiologist offered to rid me of my SVT nuisance with a procedure called a cardiac ablation, a procedure in which, after a heart catheterization, the accessory pathway is identified and then ablated--burned out with a laser. I was told I could schedule my cardiac ablation anytime I was ready to do so. But, seeing as the procedure came with the possible downside that, if things went badly during the ablation, I'd end up with a pacemaker, I wasn't eager. In fact, I'd declined his offer with a no thank you. I'd rather live with my nuisance than risk ending up with a pacemaker.<br />
<br />
And so, I've lived with my nuisance for nearly 30 years. My cardiologist told me about the vagal maneuvers that could be used to convert my heart to normal rhythm. He also assured me that if things got bad enough, if my heart went so fast that its pumping became inefficient and oxygenation dropped enough, I would simply pass out; and when I did, that my heart would convert back to normal rhythm immediately--so I didn't need to fear during episodes. Still, having your heart pumping that fast for too, too long was simply not healthy. And so I was advised to head to the ER if I couldn't get my heart converted back to normal rhythm within half an hour to an hour. Sometimes in some people, it seems, medical intervention is needed to help convert the heart back to normal rhythm.<br />
<br />
Over the years I've ended up in the ER about half a dozen times. And always, after I got there, before the ER doctor had had to intervene, my heart had spontaneously converted back to normal rhythm.<br />
<br />
That night, though, as I sat there on the floor, all those tricks to get my heart back into rhythm weren't working. Awesome woke about 10 minutes into my efforts. Awesome tends to get really stressed out by my SVT episodes. It must be hard to wake from a deep sleep, groggy and disoriented, to see your mother in the middle of an acute medical crisis. And so that night she quickly became upset and agitated. She prayed. She worried. She stressed. She alternated between telling me not to die and asking me if I was going to die. She needed a lot of comforting and reassurance. And while, we assured her that everything was going to be OK, she worried that it wouldn't be OK--that something would go wrong and I'd simply be wrong and that I'd die right there. I am Awesome's rock. The pillar against which she leans. The mother that she counts on to sustain her emotionally in dealing with the challenges and uncertainties of intractable epilepsy. She needs me to feel OK. And so when I myself am in the midst of my own acute health crisis, it's very stressful for her.<br />
<br />
None of this is good for Awesome's health. Stress and lack of sleep are both strong seizure triggers. <br />
<br />
It was a terrible, no-win situation. The more she stressed about me dying, the more stressed I became worrying about her. I worried that she would stress herself right into a convulsive seizure. It would have been the perfect storm--Awesome having an acute seizure crisis while I was having an acute heart crisis. I could only imagine how much more that Awesome having a convulsive seizure right then might have raised my heart rate. And if she had a seizure, we would not be able to leave the house for half an hour or more--until she was conscious again. And I couldn't drive myself to the ER. So we'd need to call an ambulance. Which would be loud and disruptive to the neighbors too, and up the stress even more for both of us. And so as these scenarios went through my head and I worried about them, it became harder it became for me to relax and concentrate on slowing my breathing. All this was making it take longer and making it be less likely that I would succeed in converting my heart rhythm back to normal. And the longer it took to convert my heart back to normal rhythm, the more stressed Awesome became. It was a vicious cycle.<br />
<br />
I was sitting on the floor, peeling and eating banana after banana, choking down Medjool dates, getting into various relaxing yoga positions, trying to concentrate on my slow breathing, chugging water, trying vagal maneuvers, and comforting Awesome in between it all. Trying to comfort your child in the midst of an episode was not easy. <br />
<br />
Finally, I got out an oral syringe and tried a <a href="https://www.youtube.com/watch?v=gYH-LAHsNKI" target="_blank">Modified Valsalva Maneuver</a>. Always in the past, the Modified Valsalva Maneuver had worked like a charm. But tonight, even after three repeats, it didn't. Though it would temporarily bring my pulse back down into the 80's, my pulse would almost immediately bounce right back up into the 160's or 170's again. <br />
<br />
Half an hour into this circus of mounting stress, Awesome was on the verge of tears, asking over and over again if I were going to die. It was clear that we needed outside intervention.<br />
<br />
And so, I had Awesome get dressed. I got dressed--having Awesome help me do so seemed to calm her down somewhat. And David got dressed, and went to bring the car around to the front of the house. And in the darkness and the cold of the early morning, with my heart rate still in the 170's, we headed off to the ER. Arriving, Awesome walked into the ER with me, while David went to park the car. The ER didn't make me wait long. Right after David arrived in the waiting room, they showed us into an ER room, where I changed into a gown and was hooked up to an EKG. I was still praying that my heart would convert on its own. But it didn't.<br />
<br />
More than hour had passed since my episode of SVT had started. After the EKG, a doctor came in and explained that they were going to stop my heart and restart it again, with a drug called adenosine. With David and Awesome sitting there along the wall in the ER room, they brought the crash cart in and prepared me in case something went wrong and they had to shock my heart to get it beating again. They applied self-adhesive defibrillator pads to my chest. The defibrillator was turned on and at the ready. It was all very intimidating for me, but I found myself worried more about the stress it was causing my poor Awesome who was sitting over there trying not to freak out at the idea of having her mother's heart stopped and restarted again. I kept worrying that she'd have a seizure in the middle of our circus. In fact, I wondered that she hadn't had a big seizure yet. Being sleep deprived, woken in the middle of the night, subjected to extreme emotional stress, and just being in a hospital setting were all strong seizure triggers for her.<br />
<br />
The ante was upped even more as several additional ER nurses and doctors stepped into the room for the procedure--there in case something went wrong. The doctor explained that the adenosine had an incredibly short half life and that it would last only a few seconds in my system. So they had to push it quickly and all at once in my IV when it was time. They would be at the ready with the defibrillator in case something went wrong. I would feel an incredible pressure in my chest when they pushed the adenosine, but that it should pass very quickly. And it should convert my heart back to normal rhythm.<br />
<br />
The adenosine was an experience I never want to have again. There was an incredible pressure in my chest. It was like an elephant sitting on my chest, but somehow pushing my body from the inside out. The pressure was overwhelming. It started in my chest, but then traveled to my abdomen and into my legs and down to my toes; simultaneously the incredible pressure was also in my lungs, traveling to my shoulders, arms, hands, and fingers; and so too it the pressure was in my head. It was all very overwhelming. It felt like I was being crushed or about to explode from the inside out. I cried out with a loud moan and asked the doctor to take my hand. She did. And then it was simply over. And my heart rate dropped only from 170 down to 130. All of the nurses and doctors were staring at the screen where my vitals were displayed. And there was a quick muttering about another dose of adenosine when the supervising doctor said, "No, no, I think we're just seeing anxiety now. I think it did it. Give her a minute to calm down." And thankfully, she was right. My heart rate began steadily dropping until it was down to 90. And over the next few minutes it got down into the 80's.<br />
<br />
And the crowd in the room at the ready to shock my heart back into beating if it stopped, thinned out. And there were only two or three medical personnel left--the doctor among them. Awesome declared a loud relieved "Thank goodness!" She then bowed her head and prayed in thanksgiving. And I declared that that was the first and last time I ever wanted to experience adenosine. After an x-ray (which was clear) and a few other tests and waiting around for forever, and seeing a cardiologist as a consult, and talking to her, and then seeing a third doctor, the clock was ticking towards 12:30. We were still being told it was not clear when exactly we'd get to leave. <br />
<br />
It was Thursday, a regular school day, and David had to be at the university at 1:30 to teach. I was in no condition to drive--and anyway, we had only one car. Awesome was sleep deprived and so, seizure prone. When it rains it pours. On a normal day David would simply have left to go teach and have taken Awesome along, parking her in the front row of his lecture hall where he could keep an eye on her in case of a seizure. It would have been somewhat anxiety-inducing, but very doable.<br />
<br />
But as luck would have it, his university was having an "Active Shooter Drill" that day. There would be an actor on campus mimicking an active shooter--even shooting off blanks for true effect. It was a controversial drill and many students objected; several in David's class had already expressed that they would be skipping class that day due to the drill. "Hide, fight, run," were the buzzwords the university had been promoting in preparing the students for the drill. <br />
<br />
The evening before, David and I had sat and talked through what the strategy should be with his students. Since his building was on the edge of campus, divided from the nearby woods and sheltering embankment by only a single road crossing, we'd decided that if he could lead his students--like Moses leading the fleeing Israelites--in the cover of the bushes, to the edge of the building and then quickly across the road and into the shelter of the bushes and trees, then it would be an easy thing to get them off-campus and out of danger. The lay of the land would help because once they were into the bushes, they'd be out of sight completely because of the way the land fell away, sheltering them behind the hill. We agreed that he would then lead them down a couple of back streets and bring the whole class to our house a quarter of a mile away--where they'd be off campus and out of danger. Never in my wildest dreams would I have imagined having to sit down with my husband to plot out strategies to save his and his students' lives in this way. But there we were. These are the crazy times in which we live. At any rate, David was very stressed by anticipating the Active Shooter Drill and the affect it would have on his students. When students are already stressed by the possibility of a school shooting, why act it out so realistically? What could be learned through such a drill? An Active Shooter Drill seemed to only ensure that students and staff ended up with PTSD from the drill itself.<br />
<br />
Now what of taking Awesome--already sleep deprived and stressed--onto campus and putting her in the midst of the Active Shooter Drill? Our daughter who had just been through the trauma of watching doctors stop and restart her mom's heart, was now going to be listening to shots fired, be running from bush to bush, hiding, and running for cover while an actor toted a gun shooting at students? It was a prescription for disaster and for trauma. Taking her onto campus today was unwise. And so, if Awesome couldn't go to the university with David, she'd have to stay with me at the ER. But I had visions of me trying to give seizure first aid--keeping Awesome from falling, administering emergency medication, and keeping her head from repeatedly hitting the ground, all while I was in my hospital gown, trailing EKG leads and an IV. No. No. Just no. And so, David finally called it and canceled his class. Legitimately. For good reason. So he could stay with me in the ER. And we could keep Awesome off the university campus. But the truth is, it was also a huge relief to him--and his students--that they would not have to be on campus during the Active Shooter Drill. <br />
<br />
Shortly thereafter, just when we started to worry about the fact that it was heading towards 1 PM and Awesome had had nothing to eat--low blood sugar can also be a seizure trigger--I was finally getting discharge instructions. I was to take it easy that day. The ER had already made an appointment for me with my cardiologist the very next morning--I needed to keep the appointment. We were finally out of the ER a little before 1 PM, heading home and needing to get Awesome some lunch as soon as we did.<br />
<br />
Everything is harder with Epilepsy. David and I agreed that we just couldn't reasonably subject Awesome--with intractable epilepsy--to another experience like the one we'd just had. It was simply too stressful for her. And even if we didn't end up in the ER, Awesome didn't need any more middle of the night, sleep-deprived drama; she didn't need to be worrying about me dying. We had gotten lucky this time in that she hadn't had a seizure in the midst of it all. But we might not be so lucky next time. And the possibility that David might end up having to handle two medical crises at the same time--Awesome seizing while my heart was going crazy--was also over-the-top.<br />
<br />
We could't solve the problem of Awesome's intractable seizures right then. But we could easily solve the problem of my SVT. It was simply time to schedule my cardiac ablation. I told my cardiologist the next morning--Friday morning--that it was time. I wanted to go forward with my cardiac ablation. Almost as if it were a confirmation, while I was in my appointment with the cardiologist, David called to say that Awesome had just had a seizure. We just couldn't keep taking turns having acute medical crises. I needed to stop having my medical dramas. And so my cardiologist, because he no longer did cardiac ablations, scheduled me to see a younger cardiologist in their large and very excellent practice, the following Tuesday. I had only to wait through the weekend and Monday.<br />
<br />
I saw the younger cardiologist on Tuesday and told him that I was ready to schedule the ablation. After reviewing my records and talking to me, he agreed that an ablation was in order. Because he was going out of town on vacation the next week, I either had to schedule the ablation for the very next morning, or else I'd have to wait weeks or even a couple of months to do it. Logistically, David needed to be off work and we needed another person there to help too. One person would have to stay home with Awesome because she can never be alone because of her seizures--someone has to be ready to render first aid and to closely monitor her. And one person would have to be available to take me to the hospital very early in the morning and stay there with me as required. It just so happened that David was currently on Spring Break and one of our sons--who is a PhD student in another state--was also on Spring Break and home for the week. Having an ablation the following morning would work out well for us. If we didn't do it then, the next time David would be off work during a weekday and someone else would be there to help, wouldn't be until May. And so with the cardiologist's permission and approval, I elected to go forward with the ablation the very next morning. I would need to be there at 5:30 AM for a 7:30 AM procedure.<br />
<br />
There wasn't much time to be nervous about a procedure I'd put off for 30 years. Things were a little surreal because they happened so quickly, Less than a week after ending up in the ER, I was back in the same hospital for a cardiac ablation. Our son Peter took me to the hospital and stayed with me. And the plan was that later, after Awesome woke, both David and Awesome would join Peter and I at the hospital.<br />
<br />
I was told that the ablation was a potentially long procedure, up to 6 hrs long. They would be inserting four catheter lines through four places--two on either side--of my groin and threading them up to my heart. Once there, they'd have to induce my heart into SVT--to have an episode of beating too fast. And then they'd have to find and ablate the accessory pathway. And get the SVT stopped. Then they'd have to try several more times to induce my heart into SVT again. All this could take a long time, depending on how easy or hard it was to induce SVT. And there were other possible complications that could happen along the way. Though the odds of these things were low, some could be quite serious and even deadly. If any of these things happened, there would be additional procedures that would become necessary.<br />
<br />
Thankfully, they sedated me to keep me relaxed, almost as soon as the IV was in. And so, I was relatively calm. I said my good-byes to Peter and they took me to the procedure room. I remember being asked to climb up on a narrow bed with a glass part. They were putting a warm air blanket under me. There were lots of people in the room. At least half a dozen. And they were having trouble with equipment malfunctioning. They put the same things on me to prepare me for the paddles in case they had to restart my heart. And they had just decided to put new stickers on me and asked me to sit up again, when the last thing I remember someone saying is that I shouldn't worry about falling, that they would catch me--and I remember thinking that why would I be worried about falling when I didn't feel the slightest bit drowsy or woozy. And the next thing I knew I was waking up in the recovery room.<br />
<br />
Things are fuzzy then in my mind. I can't remember where I was and the sequence, but at some point I was simply back in the same room where I'd said good-bye to Peter. And he was there. And David and Awesome too. And the cardiologist came by and said, "It all went perfectly." The whole procedure had taken 90 minutes. They had no trouble inducing SVT, no trouble finding the accessory pathway, no trouble ablating it, and that all should be fixed. I merely had to take care of myself and rest for a couple of days. And he'd see me in a few weeks after he was back from vacation. A few hours later, I was discharged. And it was all over.<br />
<br />
In the days that followed, it was like a weight had been lifted. There had been two of us in the household--Awesome and I--who were prone to acute medical crises. And now there was only one--Awesome. We were clearing the deck to make our lives a little less insane.<br />
<br />
A week later, Awesome, after having seen how my acute medical crises had been eliminated through surgery--even if anticipation and the surgery itself had been a little scary--began to ask questions about the possibility of going forward with her own pre-surgery work-up for epilepsy surgery.<br />
<br />
It's something her epileptologists have had on the table for the future, but they'd wanted to wait for various reasons, among them to give Awesome time to mature and be more motivated and invested, considering all that she would have to go through. But having gone through this all with me. Having seen me struggling with acute crises, having seen the scariness of the ER and adenosine, and then the whole surgery process including the benefit afterward, it is all much more possible in Awesome's mind. Awesome is now ready and willing to start the pre-surgery process.<br />
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We saw Awesome's epileptologist yesterday. He agrees that it is now time to start the pre-surgery process. We're in the process of scheduling an appointment with her other epileptologist, the one who will take us through the pre-surgery process. Hopefully we'll get a time-line for the pre-surgery process at that appointment, and maybe get started with the process this summer.<br />
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It's all very scary, but also, potentially hopeful. We've had our share of acute medical crises. We're now hoping that a long term solution will be possible for Awesome as it was for me.Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-23493954761072456972018-04-07T21:42:00.001-07:002018-04-08T23:37:13.773-07:00Easter Sunday: Between the Darkness and the Light<div class="separator" style="clear: both; text-align: center;">
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It's Easter Sunday, and the church is crowded. We slip into a side pew at the very back; the closer we are to the door, the quicker our exit. As the church fills up, we've purposefully not scooted over to the middle of the pew, but have let others pass to fill the middle. We need to remain at the end of the pew--where it's easy to leave quickly without having to squeeze past others.<br />
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Before I kneel to pray, I survey the situation and plot an exit strategy--a plan for exiting the church sanctuary as quickly and as quietly as possible so as to attract as little attention as possible.<br />
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It's not an idle exercise. Awesome's been having seizures on a predictable schedule lately and today or tomorrow, she's due to have another one. Morning is prime seizure time. And there have been undeniable signs that a seizure is on the horizon, including the fact that the left side of her head has been hurting. <br />
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As the first hymn begins, my husband David and I lean in towards each other. Speaking quietly, we confirm the agreed upon exit strategy; we understand more than we say. If a seizure starts--I'll grab Awesome from behind around the middle with the entire length of my arms and press her up against me--to keep her upright at first and then to facilitate carrying her when she becomes incapable of walking. When she can't walk--David will also grab her feet and we'll carry our 13 year old daughter out of the church as quickly and quietly as possible. Wordlessly I point to indicate our exit path; wordlessly he nods his agreement. This being Easter Sunday--when even the vestibule is crowded with people and extra chairs--once we reach the vestibule, we'll duck into a side hallway. It's important we find a place to minimize the disruption we'd cause. A place where we can shelter with more privacy until the seizure is over. We have no desire to enliven anyone's Easter morning with a public spectacle. Or to draw any attention to what is happening.<br />
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To facilitate a quick, seamless exit, I've learned to keep our belongings well organized. I wear my purse--with a long shoulder strap over my head and across my chest--so I'll not have to worry about grabbing or dropping it in the urgency of the moment. In the same way, not unique to being in church, but something I must do, every day during every waking hour to keep it close at hand, I also wear the bag with Awesome's seizure rescue medications. And in another nod to preparedness, though I don't really need it on a warm morning, I've worn a button-up cardigan that can be easily removed and used for seizure first aid. Folded over, and placed under Awesome's head, the sweater's cushy bulk will protect her head from injury (banging against the ground repeatedly) during a convulsive seizure. And if the seizure were to go on longer than it should, alternatively, the sweater could be draped over Awesome to provide privacy as I administer her rectal emergency seizure rescue drug Diastat.<br />
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It all sounds daunting. And indeed it is. Being in a large crowd in a public place presents certain challenges for those with intractable epilepsy. We must be ready to act in an instant, with a plan prepared ahead of time, with all the things we'll need in place, and with as few loose ends left dangling as possible---in case a seizure should strike without warning. If we aren't prepared, things can quickly become complicated and out of control. And we end up distracted, dealing with the reactions of those around us instead of concentrating on the care of our daughter. It can quickly become a circus, a memorable public spectacle. And that is unpleasant, unfortunate, and totally needless. We want to handle our daughter's seizures discretely--just quietly without all the drama. And with minimal interruption to those around us.<br />
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We're used to the hyper-vigilance that life with intractable epilepsy demands. Monitoring Awesome is the rhythm, the solid bass beat against which the melodies of our lives play.<br />
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Near the end of the Confession of Faith, Awesome leans over and whispers in my ear that she's having a strong aura--a simple partial seizure--that can signal that a bigger, more widespread, more serious seizure might be about to happen. Sometimes auras go on to become big seizures; sometimes they don't. But we don't take chances, especially when in public places. And so, as the music for the offertory starts, though it's odd for the setting, Awesome asks me to help diffuse her seizure by asking her questions. I know the drill. Keeping Awesome's brain occupied with something she likes to think about can help forestall a big seizure. Therefore, as the offertory plate is passed through the congregation and the choir and those around us sing, I ask Awesome to name the characters from her favorite book series and tell me about their personalities. She does so, whispering her answers in my ear. A minute or two later, when our eyes meet--the fear is gone. She confirms that the aura is gone. Crisis averted--for now at least. <br />
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As we stand for the offertory prayer, I put my arm around Awesome's shoulders and pull her closer. She leans her head on my shoulder; it fits into the hollow of my neck. We are happy, thankful, and content for the moment. <br />
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We--mother and daughter and father--face the moment to moment challenges of epilepsy together. We are a team. All through the service, as the other worshipers around us sing hymns and are lost in meditation, contemplation, prayer, and worship, we stand side by side ever actively watchful, and ever actively diffusing seizure threats as they come to us. <br />
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Emotionally, we ebb and flow. One minute Awesome is irritated at me because she is tired of me watching her; she's tired of being constantly monitored. She just wants to be a normal kid. She's sick of all this.<br />
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But the very next moment, Awesome's clinging to me. Especially this morning, whether standing, sitting, or kneeling, she is needing reassurance that everything will be OK. She is constantly leaning on me, nudging me to put my arm around her, putting her arm around my waist, snuggling in, lying across my lap as if she were a young child and reaching up to gather my arms around her. And because I know she needs my reassurance even when she stops reaching out to pull me towards her, I reach out to touch her reassuringly; I put my hand on her shoulder when she sits down or kneels. I put my arm along the back of the pew behind her head and rest my hand on the shoulder opposite me.<br />
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Because I'm a curious person, sometimes I wonder what people think when watching us during the church service. The way she seeks out my reassurance. The way we lean in to each other. But frankly, I don't really care if we seem odd to others. I don't really care if they don't understand what's going on with us; what our script is and why. Because it's not important. I do what I need to do to help Awesome feel supported, loved, comforted, and safe; and it's especially important and especially intense on mornings like this one when she's feeling vulnerable to an impending seizure. <br />
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Sometimes I also sit and wonder what life would be like to simply be able to concentrate on a church service and not feel that we had to be at the ready, prepared to swiftly and suddenly move our abruptly unconscious 113 pound daughter out of the church without any warning, without creating a scene. We are ipso-facto Awesome's first-responders; we must always be prepared because with seizures you often don't get a warning. One minute everything is fine. And the next, everything is not fine. The potential to create a spectacle--and disrupt others' activities in the process is always there. And so too the potential to end up in a serious medical emergency. Through our lack of preparedness. Or a delayed response. Or mismanagement. It's a huge responsibility from moment to moment.<br />
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I am guard, strength-giver, emergency medical care provider, sought-after comforter. And--with all that it implies at the most primal level--I am also Mommy. The person who can somehow make it all better even when I can't.<br />
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Awesome is the suffering child, the vulnerable child. The monitored child. The treasured daughter And yet too, the strong warrior. Growing stronger with every battle that she fights in this awful war.<br />
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The drama that plays out in the pew where we sit is ours alone. It's private. It's hidden. Shared only among us. Known only by family members. A silent, but intense battle. And the battle's constant. To sit here engaged in combat from moment to moment, is labor. A hard labor. Laborsome. But it's also a grace. <br />
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Every moment we are completely aware of our vulnerability. And as the moments pass without incident, we are more and more aware of God's grace and mercy. Every moment that passes without incident is an occasion for deep thankfulness.<br />
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And out of our unusual lack of control and our vulnerability from moment to moment does come grace. Deep grace. Grace that is like life itself--and like Easter too--at once both exquisitely painful and full of suffering, but also exquisitely gorgeously shining and beautiful. <br />
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So bittersweetly beautiful is the grace that we feel from moment to moment that sometimes it seems like it somehow contains the secrets of the deepest truths of the universe. <br />
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The truth of the love of God Himself. <br />
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We make it through the Easter service without a seizure. I feel renewed. And like I have glimpsed a little bit of eternity this Easter morning. <br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-large;"><b>Come Healing</b></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><b>by Leonard Cohen</b></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><b><br /></b></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O gather up the brokenness</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">And bring it to me now</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The fragrance of those promises</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">You never dared to vow</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The splinters that you carry</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The cross you left behind</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the body</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the mind</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">And let the heavens hear it</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The penitential hymn</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the spirit</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the limb</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Behold the gates of mercy</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">In arbitrary space</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">And none of us deserving</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The cruelty or the grace</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O solitude of longing</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Where love has been confined</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the body</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the mind</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O see the darkness yielding</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">That tore the light apart</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the reason</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the heart</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O troubled dust concealing</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">An undivided love</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The heart beneath is teaching </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">To the broken heart above</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Let the heavens falter</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Let the earth proclaim</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the altar</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the name</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O longing of the branches</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">To lift the little bud</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O longing of the arteries</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">To purify the blood</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">And let the heavens hear it</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The penitential hymn</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the spirit</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the limb</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">O let the heavens hear it</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The penitential hymn</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the spirit</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Come healing of the limb</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-36898372455154855902018-03-19T16:48:00.069-07:002020-11-09T13:04:08.313-08:00Epilepsy from Generation to Generation: Understanding and Changing the Silence and Secrecy Script<div class="separator" style="clear: both; text-align: center;">
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<a href="https://4.bp.blogspot.com/-QOTk_oFG5Ro/Wq9bSK00yTI/AAAAAAAABM8/upvHaahA17kwXdd8xuEA3nO012fhsV0mQCLcBGAs/s1600/Vermont_193%2B%25282%2529.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="908" data-original-width="1600" height="362" src="https://4.bp.blogspot.com/-QOTk_oFG5Ro/Wq9bSK00yTI/AAAAAAAABM8/upvHaahA17kwXdd8xuEA3nO012fhsV0mQCLcBGAs/s640/Vermont_193%2B%25282%2529.JPG" width="640" /></a></div><div class="separator" style="clear: both; text-align: left;"><b>This post is part of the Epilepsy Blog Relay which will run from March 1 through March 31, 2018. Follow along!</b></div><div class="separator" style="clear: both; text-align: left;"><b><br /></b></div><div class="separator" style="clear: both; text-align: left;">At some point after I met and married my husband, I learned that his father (whom we'll call Paul), a successful chemical engineer, had epilepsy.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Back then I knew very little about epilepsy. And sadly, the little I thought I knew--which came by word of mouth and from the media--was mostly wrong.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I wish I could say that having a relative with epilepsy caused me to become more informed, but it didn't. Acknowledging epilepsy's presence in our extended family, let alone discussing it. I soon learned, was unwelcome. Talking about epilepsy was perceived as uncomfortable in an unkind way. The message was clear; epilepsy was a private health concern, best kept private.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Because my father-in-law Paul's epilepsy was very well controlled for most of his adult life, it was easy to forget that it was there. The code of privacy, secrecy, and silence surrounding seizures was very strong. On the rare occasions that Paul had break-through seizures (twice in two decades) the information that came through to us was minimal. It was enough to know that Paul had had a seizure; we didn't need to know more, except as it might impact plans that included us.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Those decades were a busy time in our lives, filled with graduate school and then young children, and so whatever curiosity I might have had about epilepsy, was left by the wayside in the wake of more pressing matters. There was no imperative to research and read about a condition that occupied such a small space in our extended family's life, that seemed to cause trouble so infrequently, and that almost begged to remain private and unexplored.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And so, I remained ignorant.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">The wider society didn't help in this regard either. In sharp contrast to the success of awareness and educational campaigns for so many other conditions, epilepsy awareness and education campaigns have been very unsuccessful. Most in our society still know little to nothing about seizures and epilepsy. Common knowledge consists of the misinformation on TV and in movies and the myths that still circulate by word of mouth. Society simply hasn't bought into the idea that we need to be educated about epilepsy the way we are about autism, breast cancer, and so many other conditions. Common knowledge in a society really does matter. And when that common knowledge doesn't include even the most basic information about a common medical condition like epilepsy, the result is a lot of needless suffering, social isolation, and a lack of societal supports. Without successful awareness campaigns, the ignorance--and stigma--surrounding epilepsy continues.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And so I remained ignorant about epilepsy.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And thus it was that I was very ill-prepared when, much later, our youngest child had her first seizure at age 2. My ignorance was not only unhelpful, but dangerous. Walking into a room where my little daughter Awesome had been playing with two other children, I found her lying flat on her back on a large coffee table, eyes open and staring straight ahead, totally unresponsive, and yet, I soon realized, breathing normally. I simply had no categories in my mind--none whatsoever--to explain what I was seeing. And since, in my ignorance, seizures involved convulsing on the ground with repetitive movements--like on TV--it never occurred to me that this could be a seizure. Standing there, completely bewildered, I didn't even think to call 911. Not knowing what else to do, I finally scooped my mute, unresponsive child up in my arms and ran to my neighbor's house. Maybe she could help me figure out what to do?<br /><br />My neighbor, being a nurse, immediately knew my daughter was having a seizure; I was incredulous--a seizure?! Really?! What followed was very much like a nightmare. The staring seizure--which soon generalized into a convulsive seizure--went on and on and on for nearly an hour and a half. There was 911, ambulance, IV rescue drugs, ER, an army of doctors and nurses around her bed, and the certainty on my part (not contradicted by medical personnel) that my daughter was dying. Finally, in the ER with her fourth dose of IV antiepileptic drugs, the seizure stopped. By then I was in a deep state of shock, a shock that only gradually subsided over the next few days.<br /><br />Our epilepsy education began with that first hospitalization. We were not allowed to leave the hospital until we'd been properly educated on seizure first aid and had been given emergency seizure rescue medication, taught how to use it, and quizzed to make sure we understood.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">A month later Awesome had a second long seizure--this one stopped with the emergency rescue medication we'd been given earlier--but not before she'd vomited and aspirated, precipitating an 18 day hospitalization for aspiration pneumonia, misdiagnosed for the first 14 days, causing the temporary (lung tissue regenerates) loss of half a lung.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Thus, our introduction to epilepsy was both dramatic and traumatic. Because of this, we learned early on, in a very convincing way, that our daughter's health--and sometimes even her life--depended on our ability to be active, educated participants in her healthcare. We started to educate ourselves. We read all the books we could find about epilepsy--including a three volume medical textbook on epilepsy. We used <a href="https://scholar.google.com/" target="_blank">Google Scholar</a> to find relevant medical studies, medical reviews, and medical textbook excerpts. We joined online epilepsy support groups to read about others' experiences with epilepsy and to understand the "lay of the land"--the larger context and the patterns and clues that emerged from it.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Within our own extended family, we finally now broke the code of silence surrounding epilepsy. I wanted to know everything that was possible to know about our family history of epilepsy. Consequently, I called my father-in-law Paul and asked him oodles of direct questions about his experiences with and medical history related to epilepsy. We also talked to other extended family members who'd been close to Paul over the years, about what they'd observed and what they remembered regarding his epilepsy.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Paul, we found, wasn't the only family member with epilepsy. His late mother, whom we'll call Miriam, had also suffered from epilepsy. While Paul and others could supply details about Pauls' epilepsy--details that we could eventually piece together into a medical history of sorts--neither Paul nor anyone else, could give me enough details about Miriam's epilepsy to construct even an incomplete medical history. It was unclear at what age her seizures had started, whether there were any precipitating factors, whether her seizure types had changed over time, and whether she took seizure medication--and if she did--whether her seizures were fairly well-controlled or intractable. In short, all we knew was that Miriam had had epilepsy, and that some family members had witnessed some of her seizures.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">The more I've learned about the history of epilepsy and about how those with epilepsy were discriminated against and rejected in that earlier time and place, the more I realize that it's not too surprising that we have so few details about Miriam's epilepsy. As a 14 year old would-be immigrant who had arrived at Ellis Island in 1908, if Miriam had had epilepsy and hadn't been able to conceal it from the immigration authorities (and trust her family members to do the same), she'd never have been allowed to enter the United States. Epilepsy was an absolute reason for rejecting immigrants entry into the US. And if, as a minor, Miriam had been rejected as an immigrant because of epilepsy, her family would have faced a terrible decision. Abandon their immigration plans--in which they'd just invested their life savings--and return to the Old Country as a family--or send Miriam back to the Old Country alone. Thankfully, there's no indication that they faced this decision. If Miriam did indeed already have epilepsy at that point in her life, it was apparently successfully concealed from the immigration officials.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Once in the US, Miriam, if she had epilepsy, would have faced additional difficulties. Miriam entered and came of age in the US during the height of the popularity of the <a href="https://en.wikipedia.org/wiki/Eugenics_in_the_United_States" target="_blank">Eugenics Movement.</a> As a young woman, she'd have been subject to early 20th century Eugenics Laws that forbade those with epilepsy from marrying and from procreating--the latter through laws that mandated forced sterilization for those with epilepsy. (My father-in-law, my husband, and my daughter would never have existed.)</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">In the US in the late 1800's and early 1900's, those with epilepsy were not only subject to sanctions that kept them from immigrating, marrying, and procreating, they were also commonly segregated from their families and the rest of society and locked away--like lepers, the insane, or the "feeble minded"--in asylums and epilepsy colonies. Those who weren't locked away were further prevented from living a normal life by laws that forbade those with epilepsy from being able to go to movie theaters, restaurants, and other public places. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">In short, if Miriam indeed did have epilepsy when she was young, and more importantly, if that epilepsy hadn't been kept secret, Miriam's life as she came to live it wouldn't have been permitted. At all. Miriam's privilege to immigrate and to become a US citizen; and her right to marry, to have children, and to have a normal life in which she could move about freely in public spaces--all of it--would have been taken away from her with the full support, authority, force, and blessing of US Federal, state, and local governments and their various legal systems. Having epilepsy and having had the authorities--the governments, the law--know that she had epilepsy, would have resulted in Miriam never having had the chance to become a US citizen, and if she had managed to become a US citizen, in her being stripped of many of her civil rights and civil liberties.<br /><br />Did Miriam have epilepsy when she was young? We'll never know. Certainly if she did, she'd never have revealed that fact to Federal census takers or to anyone else who'd have written that information down somewhere where we could now find it. Even Miriam's son Paul didn't know when in her life his mother's seizures had started. Miriam never told him. Miriam bore the burden of her epilepsy alone. Miriam's ability to have a normal life was a direct function of the success of her ability to hide her epilepsy--to keep it a secret and never speak of it or admit to it. And likewise, of her family's ability to do the same. Given this situation, of course we know nothing about Miriam's epilepsy.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">What we do know of Miriam's life is that she married her sweetheart, a chemist, and together they had two healthy children. And things generally went well for her until they didn't. In 1938 during the Great Depression, at a time when she was 43 years old, Miriam's husband died suddenly and unexpectedly in a lab accident, leaving her a widow. Miriam took a job in a garment factory then, to support herself and her children. How did Miriam's epilepsy--if she had seizures then--impact her job? Again, we'll never know.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">What we do know though, is that two years later, in 1940, life got harder still, when her 8 year old son Paul was hit in the head with a baseball and subsequently developed absence (petit mal) epilepsy. Miriam took him to a neurologist, but the anti-epileptic drugs prescribed didn't stop the more than 100 short seizures Paul experienced every day. The intractable absence seizures would continue unabated until Paul was about 18 years old and he outgrew them. But when the absence seizures finally did stop, the new generalized tonic-clonic (convulsive) seizures started. Thankfully, however, the new tonic-clonic seizures were well-controlled with anti-epileptic drugs--and would continue to be well-controlled for the rest of Paul's life.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Paul, tall and handsome as a young man, was also creative and extremely bright. Despite the intractable absence seizures in his pre-teen and teen years, Paul tested into and then graduated from a high school for the scientifically and mathematically gifted. Thereafter, Paul went to college and graduated with a degree in engineering, becoming a very success chemical process engineer. Paul grew up and came of age during a time, the 1930's 40's, and 50's--when the laws on the books were very discriminatory and unkind toward those with epilepsy. Paul too learned to keep his epilepsy underground. To not speak of it. He married at a time when the Eugenics laws against those with epilepsy marrying and procreating were still on the books--and still enforced. Thus, he didn't tell his finace Alice of his epilepsy; Alice learned that Paul had epilepsy only after they were married. He didn't tell his employers either, that he had epilepsy, despite the fact that his job required him to do things that were dangerous for someone with epilepsy--like walking along exposed I-beams stories above the ground on construction sites.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Alice discovered that her mother-in-law Miriam had epilepsy several years after she'd married Paul, when--after having left Miriam to babysit her two young children for a couple of hours--Alice returned to find Miriam having a seizure. Neither Miriam nor her son Paul had told Alice that Miriam also suffered from epilepsy. The secrecy that had enabled Miriam to have a life, continued within the extended family itself. Subsequently Alice was shocked when Miriam would have seizures while in the room with Alice and other family members--and no one in the room would acknowledge the seizures. Conversations continued as if nothing were happening Epilepsy was like the proverbial elephant in the room. Right there in plain sight, but ignored and denied. And while it initially freaked her out, Alice soon learned that denial was expected of her too.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And so later, when Paul had a break-through seizure at home in her presence, Alice simply turned around and walked out of the room as the seizure started, leaving Paul to have his seizure, recover, and recompose himself again--alone. When they saw each other again later, neither spouse spoke of the seizure that had taken place. It was the way Paul's family had taught Alice to give Paul his dignity. Alice had been taught to ignore seizures rather than give seizure first aid. And so she gave no first aid. Epilepsy wasn't a topic the two--as husband and wife--discussed. Alice wasn't involved in Paul's epilepsy health care; indeed, she didn't even know whether Paul was or wasn't taking epilepsy medication--or what that medication might have been--during all the years they were married. Paul didn't trouble Alice with any of that or speak to her about it. He managed his epilepsy himself; he visited his neurologist himself without Alice's knowledge or company; he took care of his anti-epileptic drug prescriptions and dosing himself. Paul, like his mother Miriam, bore the burden of his epilepsy alone.<br /><br />As we talked to my father-in-law and other family members and began to hear their thoughts and stories, we were somewhat shocked by the extent to which the code of silence, secrecy, shame, and stigma surrounding epilepsy had profoundly affected their lives, interactions, relationships, knowledge, and even the seizure first aid that was or wasn't offered.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Extreme adaptations grow out of extreme situations. If you want to understand how extreme adaptations happen, you have to understand the extreme situations that spawn them.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Through the first seven decades of the 1900's, people with epilepsy didn't just grapple with an attitude of discrimination or an amorphous stigma that made them feel bad; they grapples with Draconian laws put in place by a society that feared and rejected them. Societal sanctions against those with epilepsy were still standing, written into law and still on the books in many places until the 1960's or 1970's--and as late as the 1980's in some places. The history of epilepsy just two generations ago was one of codified and blatant stigma, discrimination, rejection, exclusion, ostracism, and bodily violence (involuntary, forced sterilizations). Not only did those in past generations who suffered with epilepsy have to live with the difficulties of epilepsy itself, they also had to grapple with the way that the society around them rejected them in every way possible, making their hopes for a normal life nearly impossible.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And so, as a consequence, as a survival mechanism, and as a wise, adaptive strategy, those with epilepsy went underground. They learned to keep the secret of their epilepsy. To never speak of it. Not even to family members. Or employers. Because that was the only way they could survive and have the chance at a normal life. And from generation to generation, the survival strategy of silence and secrecy was handed down. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">The silence and secrecy that has reigned among those with epilepsy even into the 2010's is the residual of an essential and necessary adaptation--a strategic survival mechanism--aimed at enabling normal life by making a safe place for that life to exist. Silence and secrecy was the only way an oppressed and rejected group of people could forge a normal life for themselves. When your society rejects you in every way possible, treats you as lesser and as defective, and seeks to shut you out of life itself, silence and secrecy become self-protection.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">There are reason why epilepsy awareness campaigns have lagged so far behind awareness campaigns for other conditions and chronic illnesses. Epilepsy's history is so difficult in this regard that <a href="https://brainblipjourney.blogspot.com/2017/04/excluded-by-inclusion-activists-cost-of.html" target="_blank">even disability rights advocates still tend to want to disassociate from, to feel free to discriminate against, and to exclude those with epilepsy from their programs.</a> In short, epilepsy has traditionally been at the bottom of the heap--one of the most feared and hated of medical conditions and disabilities. And so it is that those with epilepsy have been legislated against. Medically neglected. Had their future hopes taken away as epilepsy research has been barely funded. Ostracized, stigmatized, rejected, and neglected--even by groups that should have been their allies and advocates.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And while all this bad stuff may seem long ago to many, generationally it isn't. We're just a couple of generations out from a time when society made normal life almost impossible for those with epilepsy.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">We can't forget our past. Nor can we forget the sufferings of past generations. The bravery it took for those with epilepsy to stay silent and to hide the fact of their epilepsy so that they might have a life with hope, love, and dignity.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">But we also have to understand that the adaptive strategies of silence and secrecy, while essential and helpful in past generations, are no longer helpful to us. They are no longer necessary. And they are most important, no longer helpful to us in bringing about a world where epilepsy is understood and where those with epilepsy are finally accepted and supported as fully as those with other chronic or acute health conditions. In fact, silence and secrecy going forward simply help perpetuate ignorance and continued suffering, neglect, and hopelessness.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">We've got to start to think through how to finally rise out of the shadows and tell the story of epilepsy's history and the stories of those with epilepsy in a way that captures hearts and minds. We've got to lay aside tired old strategies for awareness put forward by those who grew up and came of age during a time when even mentioning the word epilepsy was an extremely brave thing. Instead, we need to explore new, more effective strategies, strategies utilized successfully by other marginalized groups.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">It's time to come out of the shadows. And start to advocate in the light. It's time to demand dignity and the end to discrimination and stigma. It's time to start to effectively advocate for those with epilepsy to have a chance to live life in a society that strives to include and understand them and their journeys and struggles.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Please consider subscribing to my blog and other epilepsy blogs in the Epilepsy Blog Relay. If you are a blogger, consider helping create a more cohesive epilepsy blogging community--and eventually an activist community--by linking to other epilepsy blogs from your blog. And please...write, speka, and don't be silent any longer. We need voices. Many voices. Many stories. Many people speaking their truth of living with epilepsy. And we will, as a group, eventually help change things for the better. I've seen it happen in other areas of activism. Change is possible.</div>
Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com0tag:blogger.com,1999:blog-548540678738371358.post-83582198226472803492018-02-21T09:28:00.002-08:002018-03-24T21:07:27.534-07:00Fixing a Smile: A Story of How Epilepsy Can Make it Hard to Go Along and Get Along.<div class="separator" style="clear: both; text-align: center;">
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<a href="https://4.bp.blogspot.com/-cbDv3oA7V58/Wo2lAhhkkQI/AAAAAAAABKE/iK-JdIT6964vxJEVuOhvBMF37yXYJqq7gCLcBGAs/s1600/fixing%2Ba%2Bsmile.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1072" data-original-width="1600" height="428" src="https://4.bp.blogspot.com/-cbDv3oA7V58/Wo2lAhhkkQI/AAAAAAAABKE/iK-JdIT6964vxJEVuOhvBMF37yXYJqq7gCLcBGAs/s640/fixing%2Ba%2Bsmile.jpg" width="640" /></a></div>
This is yet another incident illustrating the profound failure of epilepsy awareness in our society. <br />
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Last week Awesome had an appointment with her orthodontist--the third in this her second round of braces.<br />
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First, let me say that I like Awesome's orthodontist. He's a leader in his field with somewhat of an excellent national reputation for something or other, but more importantly, he's a genuinely nice man. His office staff too are excellent: competent, friendly, and really, every kind of wonderful. Everything about his office--the place and the architect-designed open shared spaces; the routines; and the way you make your way through the whole orthodontic process--is well-designed in a clever, fun, and innovative way. And his practice incorporates not only oodles of tween- and teen-appealing perks--from game stations to free ice cream--and conveniences like a space with disposable toothbrushes and floss--but also, the latest in imaging and other technologies. It's all like a well-designed and finely tuned machine--only without the usual impersonal downsides of offices designed for efficiency. And unifying the whole experience--both for atmosphere and energy--there's background music. This isn't your usual generic, depressing blah; rather, the playlists are lively, eclectic, and fun--the perfect enhancers to keep the whole orthodontic experience happy and upbeat.<br />
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Impressive? You betcha. The whole place, space, and experience. From start to finish. In visit after visit.<br />
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Things have been impressive this way since Awesome first became a patient with her first round of braces several years ago. And it's the way things have been so far also for round two. We've never had any reason to expect that things wouldn't continue to be all shades of wonderful for the next year and half as Awesome continues to be an orthodontic patient.<br />
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But life--and especially life with epilepsy--has a way of not letting us coast. Of not letting us get too comfortable. Of waking us up and making things difficult on a fairly constant basis.<br />
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And so, because that is the way life with epilepsy is, as soon as we stepped across the threshold into the orthodontist's office last week, there was trouble. <br />
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From the first moment that we heard the music, there it was--that low, powerful sub-woofer rumble that makes your chest vibrate with every bass chord. A low rumbling that immediately made me uncomfortable and that soon gave me a headache (despite the fact that I rarely get headaches).<br />
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But more importantly, we learned quickly that that same low rumbling triggers auras for Awesome. <br />
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What are auras and why do they matter? In the context of epilepsy, auras are seizures-that, instead of affecting the whole brain--initially at least--affect only a part of it. Auras often serve as the advance warning for more widespread, more serious seizure activity that often follows--as the seizure activity spreads. Before starting CBD (cannabidiol), all of Awesome's auras inevitably spread to became convulsive seizures. Since CBD, her auras exist on a spectrum; from very strong and unstoppable ones that quickly become convulsive seizures--to milder ones that pass on their own without spreading. However, most are now in the middle range and could go either way. And so, when Awesome feels an aura coming on, she takes it seriously. She stops whatever she's doing and uses various techniques to try to calm and center herself. And my job is to both try to assist her in doing that--if she needs help--but also to try to assess active triggers--and decrease or eliminate them, whether that means removing triggers from the environment or removing Awesome from the triggers. I also try to make sure that if the aura goes on over into a seizure, that I have what I need for seizure first aid, but also--if we're in public--that I know what my plan is for that particular place and space, but also for handling by-stander's reactions/actions.<br />
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And so, from the moment we entered the orthodontist's office last week, instead of my usual routine of reading a book and keeping an eye on Awesome in a relaxed way, I was thrown into a debate with myself about what to do--or not do--about the sub-woofer and its effect on Awesome. The fact was, the sub-woofer was triggering auras for Awesome, one after another, after another. At first I assumed that all we had to do to solve the problem was to wait for that particular song to end. After all, in the nearly 2 years that Awesome had been an orthodontic patient, until that day I'd never heard a single song with a rumbling sub-woofer bass line on any office playlist. If we simply gritted our teeth through one song, the next would surely be woofer-free. Or so I thought.<br />
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But, the next song and the next too had the same rumbling bass line. And the two after that too. Maybe if the wait time had been very short--as it usually is--and the orthodontic care abbreviated--like it is on occasion--Awesome could have withstood half a dozen songs with a rumbling baseline and then made a break for the door, but luck was not on our side this day. Instead of the usual 3 to 5 minute wait to get into the chair with her technician (in deference to Awesome's epilepsy, at their own suggestion, the orthodontic office had decided to have one particular technician work with Awesome each time), the wait this time was longer... Awesome's technician had another patient--one that needed lengthy care--in her chair. And so the minutes ticked by one after another, until we'd been waiting 10, 15, 20...plus minutes<br />
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I really didn't want to admit it, but Awesome was really struggling. And struggling hard. She was having aura after aura. One aura barely ended before another began. Having aura after aura is the equivalent of sitting in a room full of fireworks, lighting match after match and waiting to see if the next spark is going to ignite the whole room. Ill-advised at best. Dangerous at worst. And certainly stress and anxiety-inducing. Not just for me, but for Awesome. And stress is itself a seizure trigger.<br />
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I'm a deferring Midwesterner through and through. Given the choice between asking for something to be changed and having to suffer, I will choose to suffer every time. Years of dealing with inane, uncaring rule-oriented institutions staffed by unmoved rule-oriented authority figures has only made me all the more likely to choose the road of suffering rather than seek relief through boat-rocking. In my experience, asking for special consideration is almost always futile--and frequently simply results in emotional pain and humiliation to add to whatever other suffering one was seeking to avoid. Still, as we sat waiting for Awesome's usual technician, and I sat watching Awesome suffer and struggle, I knew that it was well-past the time when I should have acted. I could no longer reasonably let things continue the way they were. <br />
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And so I screwed up my mama bear courage, walked over, and asked the appointment clerk if it were possible to change the music to something that didn't have a rumbling bass. Nothing is ever easy when you try to rock the boat. The appointment clerk, through a forced smile told me I'd have to talk to a certain orthodontic technician--pointing vaguely in the direction of a room filled with technicians, most of whose names I didn't know--who was in charge of the music. A few gyrations later, having figured out which one was the keeper of the music, I screwed up my courage--fortified once again by observing how hard Awesome was struggling to not slip into a big seizure--and approached the music keeping technician, who, immediately and kindly, changed the song. Was it really that easy?<br />
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No it wasn't. The technician hadn't really understood that I was asking for the rumbling bass to go away; instead she must have thought I was just being a controlling jerk who was asking her to skip a song I didn't like. The same chest-vibrating sub-woofer rumbled through the next song as it had rumbled through every song in the last nearly half an hour that we'd been waiting. Defeated momentarily, I slunk back to the stool beside the treatment chair where Awesome sat. Nervously, I asked Awesome if she was OK. She could not look up at me--she was using an app on her phone that helps her calm and center herself in hopes of keeping auras from generalizing into convulsive seizures. Without looking up, she told me she was very afraid because her current aura was a particularly strong one.<br />
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I felt caught between a rock and a hard place. I'd already made two unsuccessful attempts to fix the problem. As far as I could tell, I had three choices. First, I could make a third request--with more in the way of explanation than the last attempt,. Or secondly, I could simply continue to watch Awesome struggle and perhaps have a convulsive seizure. Or thirdly, we could simply get up and leave the office. None of my possible choices allowed us to avoid public drama. None of them allowed us to simply go along and get along. The music with the rumbling bass simply had to go if we were going to avoid a convulsive seizure. I took a few seconds to imagine what it would be like for Awesome to have a full tonic-clonic seizure right there in the middle of the treatment room in front of 20 adults and kids. No, that was not my first choice. I also suddenly realized that if Awesome continued to have auras like she was having them now, that the technician and the orthodontist would neither one be able to work on her teeth. She'd need to continue to be in aura quelling mode--which takes concerted, centered concentration. And lest you think that it's impossible to quell an aura and avoid a seizure, know that during the 1970's and 1980's--before the more modern AED's made their appearance and caused the effort to be abandoned for an easier fix--a pill--that there were institutions (and the studies still exist), that aimed to use relaxation, meditation, and biofeedback to help those with epilepsy learn how to stop seizures at the aura stage. So what good would it do to be here going through all this if they couldn't work on Awesome's teeth? None whatsoever. And what of getting up and leaving? That made no sense. Awesome needed orthodontic care; she needed her braces tightened. Rubber bands and all that... There was no easy way out with any of this.<br />
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And so, despite my Midwestern farm girl's discomfort with the need to be assertive and ask for a change in the shared environment, I still simply had to act. I had to ask the technician in a precise, clear, unmistakable way, yet again, to get rid of the rumbling bass songs. <br />
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And so I approached the keeper of the music a second time and carefully, patiently explained the situation, and asked that the playlist be changed to one that didn't involve a rumbling bass line. The technician did a good job of masking her impatience with my request. At first she said that the playlist was already chosen for the day and that she couldn't choose another kind of song. I explained again, what the problem was--the rumbling bass, the sub-woofer--was giving Awesome auras--simple partial seizures--and that I was afraid it was going to spark a convulsive seizure. The technician said that even if she could change the type of music, that the new sub-woofer was on with all the different types of songs. It couldn't be turned off. There would be a rumbling bass line with whatever kind of music she played. <br />
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And so there we were, in a bit of a stand-off. I honestly didn't know what to do. I started to retreat to rethink our options and be disturbed by the situation we found ourselves in. But then, when I was about 10 feet away from her, the technician turned to me and said that the only solution she could offer was to turn the music off altogether. Did I want that?<br />
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The question hung in the air like an accusation. Like something hideous or obscene. And every fiber in my Midwestern body wanted to say, "No, of course, I don't want that." To give up and give in.<br />
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There it was--me, the non-wave maker about to change the environment for 30 people throughout the building. I was very uncomfortable. But then I glanced over at Awesome, struggling, and imagined the convulsive seizure that would result if I said, "No, of course, not." And so, forced into a corner, forced to choose between changing the environment of 30 people who would likely think I was a jerk because they didn't understand anything about my daughter's legitimate special needs, and doing what was needed to help my daughter, I chose my daughter. And the truth is, no matter how many times I was forced to choose, I'd choose my daughter every time. No matter the scorn, no matter the irritation or anger at me, no matter the ignorance of those involved, and no matter whatever. I would choose to help my daughter. And choose her over and over again. From here to eternity and back again.<br />
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And so, I said, "Yes, please turn the music off. My daughter is struggling with an aura. The music is causing seizures."<br />
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And so, a moment later the rumbling bass was gone. And with it all the music. There was the sound of silence.<br />
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And people began looking up. Asking what happened to the music. And I saw the orthodontist asked the keeper of the music..<br />
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Body language. The knowing look. The subtle or not so subtle eye roll. The skeptical half smile. The dismissive slight shake of the head. They rippled around the room like a breeze blowing through, ruffling feathers. Irritation. Scorn. Skepticism. Judgment. Lack of understanding. Lack of wanting to try to understand. Not wanting to exchange the normal for the helpful to my daughter. All of this as subtle as the ruffle of a feather, the rustling of a leaf....but all there unquestionably.<br />
<br />
The Midwestern farm girl bobbed to the surface for a moment, before the resolute mama bear cuffed her and sent her back below the surface. It was too late to fix anything for the Midwestern farm girl. She would have to live with the transgression. To wrap herself in the certainty of the necessity of the transgression. Because life is like that. You have to do what you have to do sometimes, like it or not. A thousand sacrifices. And thousand surrenders. A thousand laying downs of one thing on the altar of your life in order to facilitate something for someone. In love. Life is full of a thousand little dyings in love for our loved ones. And a thousand little risings from the dead in hope and anticipation. And in love. I had chosen my daughter. I had rocked the boat to keep the boat from capsizing with her in it.<br />
<br />
The boat-rocking worked.<br />
<br />
A minute later Awesome put her phone away. The auras had stopped with the rumbling bass. And the technician who was to work on my daughter asked her if she was ready. Awesome slipped her dark sunglasses on, the technician tilted the chair way back so that Awesome's beautiful face was looking upward at the ceiling, and in the relieving silence the two started to discuss what colors Awesome wanted for the clips and rubber bands on her braces.<br />
<br />
Awesome did not have a convulsive seizure. We did not have to leave without getting her orthodontic work done. Awesome got her braces tightened. And after much debate and indecision. she chose black and blue colored clips and rubber bands for her teeth. Black and blue was exactly appropriate for how this afternoon felt. Bruised and broken. <br />
<br />
Was it my imagination? The orthodontist was less friendly than usual. Perfunctory would be a good word for it. Only it wasn't a good word or a good feeling. In a situation like this, one has a choice. To rise above and be gracious, to put at ease. Or to be otherwise, to show disapproval without saying a disapproving word. To punish without punishing. To communicate by not communicating. To let the silence warn of the price of a similar action in the future. The message is both given and received very clearly. Only an idiot wouldn't get the message. And I'm no idiot. On the other hand, when message is given so subtly, there is always the possibility that no message was ever intended. That none was, in fact, given. That it was all in my imagination. But isn't that some of the beauty of messages like that? Or the absence of messages like that? Unless you reassure, the intended will never know for sure which it was.<br />
<br />
The technician, to her credit, tried hard to be friendly and smooth things over and make us feel less of the tension that we'd created by altering the environment for everyone. But I was already feeling traumatized and thinking about how hard epilepsy is. About the price epilepsy exacts constantly from my daughter. And from me, her mother. And about the fact that there is a disparity in willingness and graciousness to accommodate based on the popularity of the condition that a child has. It's a disparity (from"dis"---meaning lack of , and"parity"-- the state or condition of being equal, especially in status) based on cultural understanding. Sympathy and understanding is based on the success or failure of "awareness" in our society, for that particular condition. <br />
<br />
If my daughter had been a child with autism who had sensory issues, the office staff would have understood my request. If she had been developmentally delayed and had simply been bothered in an innocent way by the sub-woofer, they'd likely have kindly acquiesced. But somehow, because my child looks normal, acts normal, seems normal, and pretty much is normal (except for the fact that she has seizures) and-because the character and severity of her chronic condition is hidden from sight, then somehow, by asking for accommodation to avoid difficulty and/or disaster, we have been guilty of transgressing some unspoken rule of civility. We are assumed to be selfishly insisting on our individual preferences, rather than dealing with medical necessity. When the illness is not on the culturally cool and current list, then it assumes the status of something like an imaginary illness. Not quite real. And because it's not quite real, it must therefore follow that it's something over which the person can choose to have control. And asking for an accommodation for a not-quite-real condition over which someone could choose to have control, is something that kind, considerate people would choose to not do, especially while in a group of people who'd prefer to have things stay just the way they're used to it being. None of this reasoning is conscious reasoning. Rather, it's all subconscious. Reasoning of which we're not aware until we are honest with ourselves. And when I'm not the one in the hotseat, I'm just as guilty as the next person. It's because our default is naturally non-accommodating. We expect others to accommodate themselves to the group. Rather than the group to the individual. And when the individual dares to make a request to the group for accommodation, it needs to be only in certain pre-approved, societal-understood circumstances, easily recognized. And epilepsy-related difficulties are not in that group of pre-approved, societal-understood conditions.<br />
<br />
At any rate, that afternoon, sitting there contemplating all this made me very sad. And traumatized. And more than anything else, just very, very tired. Because epilepsy wears you down. Constantly. Always being on guard every moment. And whatever energy you have left is then spent on making up for the fact that everything is harder because society doesn't recognize anything about your child's with epilepsy's struggles. Or your struggles as caregiver to a loved one with epilepsy.<br />
<br />
By the time Awesome was done, I could not wait to get out of the orthodontist's office. I had a headache and was exhausted. And Awesome too was exhausted from dealing with all those auras. And the tension she felt around her. We were both traumatized and simply wanted to go straight home to the shelter of our own house. The shelter of not having to rely on others in a shared environment where her struggles were not recognized and accommodated without a fight.<br />
<br />
As we moved to the appointment desk, the technician switched the music back on. I tried to imagine that the vibrating bass wasn't as bad as it was. But it was that bad. I glanced over to see that Awesome was frantically getting into her Zen app on her phone. Trying to change her brain into calming mode. I didn't even attempt to engage in the small talk the appointment clerk tried to make. The appointment clerk's words fell flat without response. Even the Midwestern farm girl part of me didn't give a care at all. I was too exhausted and demoralized to care. I felt that we were fleeing before an army, before a flood, before the tyranny of the normal.<br />
<br />
We'd love to do normal. But we can't. We want to live normal. But we can't. We don't want to ruin normal for others, but we can't always succeed in not doing that. In fact, sometimes it's a trade-off--we can ruin your normal in this way or that way. We can ruin your normal by requesting that you turn off the thing that is triggering auras in my daughter. Or you can let the fruits of your lack of belief obliterate the normal in a far less pleasant way.<br />
<br />
You see, there is an antidote to disbelief--to the lack of belief in the reality of what my daughter needs (relief from a seizure trigger) and to the disbelief that my daughter has a hidden disability that is serious enough to be worth altering our shared environment. And that antidote is experiencing one of Awesome's seizures. Watching a convulsive seizure is usually traumatizing enough for all concerned that whatever previous tendency to minimize her epilepsy's reality or to want to cheat on keeping the triggers at bay, is immediately gone. Watching Awesome's convulsive seizures--for the uninitiated--is like watching a tornado strike. No one who's been there to see one leaves without having some degree of PTSD. And it can take days to get over the experience. A friend once told me that it took her two days of meditation to begin to get over being witness to one of Awesome's big seizures. But the real problem is the antidote to disbelief is very costly. To Awesome--as the one whose body and brain have to absorb the assault that is a convulsive seizure, and to me--Awesome's parent, who must not only administer first aid and worry over my child, but also worry about negotiating the social situation--the disruption, the fear, the over-reactions, and the utter shock that usually results. It's also costly to the normal things that should be going on around her. And to everyone nearby--including you. Believe me, the inconvenience of 15 minutes of silence--or figuring out how to turn off the sub-woofer and still have music--is infinitely better than the trauma of watching a convulsive seizure.<br />
<br />
But does it really need to come to that?<br />
<br />
Apparently so.<br />
<br />
POST SCRIPT:<br />
<br />
We called and asked to speak to the orthodontists's office manager a few days before Awesome's next appointment. We explained the situation in detail. The office manager was understanding, concerned, and very gracious. She apologized, assured us that they wanted to be helpful, and that it was unacceptable for the office to be playing music that caused Awesome to have seizures. She called us back a few hours later. She confirmed that the sub-woofer couldn't be turned off. However, she said they were committed to making sure the music didn't cause Awesome any issues. They would select playlist with a lighter, less driving baseline to make the sub-woofer less problematic. They would also turn the volume down to keep the sub-woofer toned down. They hoped that these things would eliminate the problem. However, if it didn't, she told us that we should tell the receptionist or herself immediately--and they would turn the music off. <br />
<br />
When the day of the appointment arrived, I have to admit I was nervous. We waited in the car until the exact time of the appointment. When we walked in, it was clear that the office staff knew exactly what was going on with Awesome and that they were bending over backwards to make us feel welcome and at ease. The receptionist made light conversation. We didn't have to wait at all for the appointment, and Awesome's own technician was free this time--she came to get us right away. The technician asked if the music was OK. It was. They were playing Motown, and the volume was lower than usual. It was fine. Barely had the technician started with Awesome before the office manager came out to talk to me and to apologize again and make sure everything was OK this time. She was very genuinely warm and kind. She reiterated that they wanted to hear immediately about any problems then or in future visits. They wanted Awesome to be able to get orthodontic care without it setting off seizures. Awesome's appointment went very quickly and well. She picked the colors for her braces, this time black and gold. The orthodontist joked around with her; he was appropriately friendly with me as well. Things felt all back to normal. Awesome didn't have a single aura (simple partial seizure) during the time we were at the office.<br />
<br />
Awesome and I both left the office feeling relieved. Would that all stories of this sort had such a happy ending!Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com4tag:blogger.com,1999:blog-548540678738371358.post-23448774576489176142017-12-21T00:42:00.001-08:002018-01-08T00:35:04.497-08:00A Fail....and Merciful Grace<div class="separator" style="clear: both; text-align: center;">
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Even as extremely hypervigilant and careful as we epilepsy parents are, sometimes we fail. Sometimes we make mistakes.<br />
<br />
This is an account of one of those mistakes. <br />
<br />
Several weeks ago on a Tuesday, Awesome was not feeling well. She'd seemed somewhat "off" all day. Unusually tired and unusually emotional, yes, but also off all day in ways that I couldn't quite put my finger on. My sixth sense told me that she was likely on the verge of a big seizure. But I wasn't sure. And so, when Awesome finished her schoolwork, I debated what to do. Should I or shouldn't I take her to swim practice? The part of me that wants to believe that Awesome is a normal kid was telling me that exercise is good for her and could help her feel better. I'd seen it transform a tired, blah Awesome into a happy, energized Awesome in the past. And anyway, why should a vague feeling of unease be a reason for Awesome to miss swim practice?<br />
<br />
But the other part of me, the part that is more cautious and that realizes that intractable epilepsy burdens Awesome with all sorts of special needs and circumstances that require responses different from the norm, thought that having her go to swim practice that afternoon would be both crazy and cruel. And that more cautious--and perhaps more realistic--part of me also worried that the likely result of my stubbornly insisting (against my gut feeling of unease) on having Awesome go to swim practice, would be a major convulsive seizure in the water--something that has yet to happen, but about which I worry...a lot. <br />
<br />
And so, in the end, the fear of a possible seizure in the water forced my hand. The cautious part of me won out, and so I told Awesome that she wouldn't be going to swim practice that afternoon.<br />
<br />
Instead--perhaps somewhat foolishly--I suggested that we take a quick shopping trip to get party favors for her birthday party coming up the next weekend. Perhaps getting out of the house for awhile would help rejuvenate Awesome.<br />
<br />
As it turned out, the shopping trip was just what was needed. Awesome quickly revived; she became animated. Her energy level increased substantially. And best of all--while we were out and about--the steady drumbeat of her little seizures quieted--and stopped; no more little seizures. Things were going so well--and we were having so much fun--that what was supposed to be a short shopping trip to one nearby store, soon lengthened into a shopping trip to three different stores scattered around town.<br />
<br />
By the time we arrived home two hours later with all the party favors and other goodies, Awesome no longer seemed off; a big seizure no longer seemed imminent. I felt like we'd dodged a bullet. A seizure bullet. The choice to skip swimming and go shopping instead had been a good one.<br />
<br />
David (my husband, Awesome's dad) arrived home (from work) a few minutes after we got home. And although it was already dark outside and fairly late--so that we should have hopped right into fixing and eating supper--none of us was hungry. Instead, we simply wanted to catch our breath, and to relax for a few minutes. And so, because Awesome settled down to relax on the couch in the schoolroom while David and I were planning to relax in the den and the kitchen, I went to retrieve my laptop so I could monitor Awesome via video camera. Because of a strong history of status epilepticus (seizures that don't end on their own but go on and on and on until they are ended with emergency rescue drugs) and because of the fact that her current convulsive seizures come on very quickly and often endanger her, Awesome has to be very closely supervised pretty much 24-7.<br />
<br />
But before I could get the video monitoring system up and running, Eli, one of our young adult sons, called. The call brought unexpected news of a possible job change and move to another city. Eli wanted to talk through the pros and cons of his choices with us. We put him on speaker phone so both David and I could be a part of the conversation, and, before we knew it, the three of us were lost in discussion--absorbed in talking through the merits and implications of choices. <br />
<br />
And so, though I'd had every intention of getting the video monitoring system up and running within a minute or two of retrieving my computer, it simply didn't happen. 1 or 2 minutes became 5, and then 10, Which became 20. And then 30. And then more than 30. And yet, we remained oblivious to the fact that I had dropped the ball. Awesome--whom we never let go unmonitored for more than 5 minutes at a time--simply wasn't being monitored. At all.<br />
<br />
Finally, during a natural lull in the conversation, with horror David and I both realized--at about the same time--that I'd never gotten the video monitoring system up and running--and that a lot of time had passed since we'd last checked on Awesome. Too much time. Hastily handing me the phone--which was still on speaker phone--and glancing at his watch, David hurriedly rushed out of the room, declaring, "It's been 36 minutes! I'd better go check on Awesome!" Awesome had been unsupervised for 36 minutes--an eternity when it comes to seizures. As a wave of worry passed over me, I whispered a silent prayer that our glitch in monitoring had occurred during a period of big seizure grace. Generally speaking, the odds were in our favor. After all, Awesome isn't seizing 99.99% of the time. Still, because Awesome had been "off" earlier in the day--attempts to reassure myself weren't as comforting as they might have been. <br />
<br />
I heard David calling out to Awesome as he hurried down the hallway. There was no answer.<br />
<br />
As soon as I heard David loudly calling my name a few seconds later, I knew we were in trouble.<br />
<br />
Running back the hallway, past the empty schoolroom, into the back hallway, I was both overwhelmed and frightened by the scene that awaited me. A seizing Awesome was lying prostrate--face down on the floor--half in and half out of the bathroom, her legs stretched out behind her. Only the upper part of her arms, pressed in close to her body, were visible; the lower halves of her arms from her elbows down (including the part of her arm with her Empatica Embrace seizure detection watch--which had failed to sound because her body weight had restricted her arm movement) were trapped under her body, beneath her chest. It was clear from her positioning that she'd fallen without attempting--because she was already unconscious--to break her own fall. It also seemed likely--because her head was under the porcelain pedestal sink--that she'd hit her head on the sink basin as she'd fallen.<br />
<br />
David was struggling to roll Awesome onto her side. The side is the best position for seizures. It keeps airways clear, and helps prevent aspiration. I helped by turning Awesome's legs and hips first; her upper body followed easily. As we succeeded in rolling her onto her side, we were astonished to see Awesome's laptop emerge from under her chest. She must have been holding it when she fell. It had apparently snapped shut, pressed (and sheltered) between her chest and arms, with her arms hugging it to her body--as she hit the ground. We pried her fingers from around the computer and set it aside. There was no time to worry whether her laptop was broken. It wasn't our first priority. It was just a computer; it could be replaced. Our daughter could not.<br />
<br />
Now that she was in a safer position, David checked his watch quickly so as to time the seizure. There was no way of knowing how long the seizure had already gone on, but it was important to know, from this time forward, how long it would continue.<br />
<br />
We needed to administer Awesome's emergency CBD. Rescue CBD can help slow or stop a seizure; it also shortens post-ictal (after seizure) impairments and makes them milder. CBD soothes the brain and helps protect it from damage. Quickly pulling the oral syringe of CBD from the bag of rescue meds, I carefully discharged it into the outer pocket of Awesome's mouth.<br />
<br />
Now that I'd given the rescue CBD, my mind was racing to assess the situation and figure out what to do or not do next. Because Awesome had fallen onto the hard tile floor without attempting to break her fall and because she'd also likely hit her head on the sink as she fell, physical injuries--and even a concussion--were possible. No doubt we should evaluate Awesome for injuries and then decide whether to seek medical care for them, but what concerned me far more right now--what was most pressing--was getting Awesome's seizure stopped.<br />
<br />
It's hard to convey how much of a dilemma it was not knowing how long Awesome had been seizing. And why that mattered so much.<br />
<br />
Most seizures for most people last only a few minutes (1 to 3 minutes); the vast majority of seizures stop before the 5 minute mark. Seizures that continue past the 5 minute mark are called status epilepticus seizures. A status epilepticus seizure is a medical emergency because these seizures are at high risk for not stopping without medical intervention. <br />
<br />
Seizures are like the proverbial snow ball rolling down a hill, gathering momentum--mass and energy. The longer a seizure is goes on, the harder it is to stop; the harder a seizure is to stop, the more and stronger drugs it takes to stop it. In short, the force needed to stop a seizure--measured in drug quantity and drug strength) varies directly in relation to the length of time the seizure's been going on. <br />
<br />
If treatment is delayed for a status seizure, before you know it, you're behind the curve, struggling to catch up with a runaway seizure--a seizure that is always two steps ahead of the means (graded by the increasing strength and quantity of the drugs) you're using to attempt to stop it. <br />
<br />
And so it's important to try to stop a seizure as quickly as possible after the 5 minute mark--when stopping it is easier.<br />
<br />
If Awesome was already in the midst of a status seizure, the longer we delayed using rescue drugs, the more likely it became that we were insuring an acute seizure crisis of the kind that our doctor has worried about from the beginning. A crisis where she ends up not only in the ER, but also in the Pediatric Intensive Care Unit (the PICU).<br />
<br />
On the other hand, if this wasn't a status seizure--if her seizure had started only a couple of minutes before we arrived on the scene--then using a rescue drug was unnecessary. And it seemed a defeat after Awesome had gone a year without needing a rescue med, to have to use a rescue med.<br />
<br />
Knowing what to do--or not do--during any particular seizure involves a calculation, a weighing a lot of things. It's a calculation of sorts. An individual calculation for that particular person at that particular time knowing their particular short- and also, long-term history. It's a very important calculation; your seizing child's well-being depends on it. And because it's so important, and it's taking place in midst of a crisis, making that calculation tends to be intense and scary-- and at the same time, it can feel very subjective and arbitrary. It's easy to feel overwhelmed and like you will make a mistake. Often you can feel like you have no idea how to weight what you know and what should trump what and what is reasonable or not reasonable.<br />
<br />
Seizures are like dynamic snow-flakes. Unique. And often apt to surprise. Each seizure can be known and comprehended only after it--and its post-ictal aftermath--is over. Seizures are like wild animals, you can never necessarily trust them to be as you think they will be. It's a mistake to trust that you know how it will behave in any situation. And so you have to be strategic. You have to think ahead. To think through the what-if's. What if the seizure doesn't behave as we think it will. What is our recourse, our strategy? In what time frame? What if the first recourse--rescue--fails, what is the second recourse? Are these recourses--these solutions--close at hand? How long will each take to implement? When should one go on to the next levels of rescue, and so on....<br />
<br />
I will spare you the details of all our calculations, made desperately and yet calmly too (it's an art that one learns over time) as Awesome seized. We tried to do the incredibly difficult risk-benefit, fear-bravery, err on the side of safety--take a leap of faith, fail-safe calculations involved in deciding whether we should or shouldn't administer Awesome's emergency rescue drug, Diastat, even as we dealt with the crisis of Awesome's seizure. And with the idea of possible injuries.<br />
<br />
And meanwhile we were aware of the guilt-inducing fact that we had forced ourselves into this situation of having to do make these difficult judgments only because we'd failed to supervise Awesome for 36 minutes. It's not a crime to fail to supervise a13 year old in the safety of your own home for half an hour. But it is unwise--even foolish--when your 13 year old has intractable epilepsy and a very strong history of status epilepticus. And we--both she and we--were paying the price for our foolishness.<br />
<br />
David favored waiting 5 minutes to see if she'd stop seizing on her own. I couldn't stop worrying that every minute that went by was putting us further and further behind. If we waited 5 minutes to administer Diastat, we'd then have to wait 10 more minutes to see if it worked to stop the seizure. If it didn't work at the end of those 10 minutes, then we'd have to call 911. And then after calling 911, it would take another 10 minutes for the ambulance to get here. That's 5 min + 10 min +10 min. = 25 MORE minutes before the EMT's could be in position to attempt to start an IV of antiepileptic drugs if they were needed. By waiting 5 minutes to give Diastat, we'd be committing ourselves to a potential 25 minutes of seizing if our Diastat didn't work. The more math I did in my head, the scarier the scenario of waiting to administer Diastat seemed. The possibility of permanent damage starts at about the 30 minute mark. That gave us a grace period of only 5 minutes. If Awesome had already been seizing for 5 minutes by the time we'd found her, then we'd already be to the 30 minute mark before help could arrive.<br />
<br />
And in my head I worried about additional complications--like the fact that the EMT's would probably first administer a drug that we knew from experience didn't work for Awesome. They'd want to wait for that to fail before trying another one. I could imagine one failure after another, each adding more and more time to the time she'd been seizing, and reducing the likelihood that each subsequent anticonvulsant they tried would work. How would they ever catch up to the runaway seizure? The gamble of waiting to give Diastat made less and less sense to me. And I found myself becoming more and more fearful. I wanted to err on the side of safety. To nip this seizure in the bud while it was still young enough to be stopped with the rescue med we had. I wanted Awesome to be OK. I didn't want to be dealing a major acute seizure crisis. No ER. No PICU.<br />
<br />
Finally logic and emotion teamed up--or maybe logic simply gave way to emotion. At any rate, I soon found myself saying over and over again, variations of "David, I really think we should give her Diastat!" Initially he wanted to wait, but as the seconds turned to minutes, he too gave in. And erred on the side of caution. And so I administered the Diastat. It worked within a minute. The seizure was over. So too was our year long streak of not using Diastat. Just like that. The record rescue-drug-free run was broken. The Diastat clock reset.<br />
<br />
Awesome slept for 10 minutes after the seizure ended. While she slept, we examined her for physical injuries. The only thing of significance we found was a medium-sized goose egg on her forehead just above her left eye. At first I worried about a concussion as she wafted in and out of sleep, attempting to talk before she was even remotely coherent. But thankfully, again because of CBD, that initial incoherence was short-lived. Soon Awesome was awake and speaking normally. Making sense. Not even the least bit language impaired--as she used to be in her post-ictal periods before CBD. <br />
<br />
As she recovered, Awesome assured us that nothing else on her body hurt. Her arms and wrists on which she'd fallen were fine. There were no signs of a concussion, and, aside from the goose-egg on her temple--which she insisted didn't bother her that much--her head didn't hurt. Given everything, it was a miraculous and merciful grace that Awesome hadn't been seriously hurt. (And later we'd also find out that Awesome's laptop was also unhurt, though she'd fallen on it directly, with her full weight, on a hard tile floor.)<br />
<br />
Later Awesome also told us that the last thing she remembered before she lost consciousness and fell, was hearing her David say that it had been 36 minutes and that he should go check on her!<br />
<br />
So in fact, somewhat ironically (given all the mental drama--and the guilt we felt), though we had left Awesome unsupervised for 36 minutes, it turned out that her seizure had started just seconds before David arrived on the scene. If we had known what a short time she'd been seizing, we'd not have used Diastat; it had been totally unnecessary. CBD had indeed been continuing to keep Awesome safe by keeping her seizure non-status, even as we were in a rough patch of our experimenting with CBD, making it more likely that her seizure would be longer than usual. But we'd had no way to know any of this. Sitting there, trying to make the decision as to whether to use Diastat or not had been difficult. We'd made our judgment based on calculations involving all that we knew about Awesome's medical history, her current situation, and the amount of time rescue of various kinds takes. In the end though, prudence won out. The intense desire to avoid something terrible was the strongest factor of all.<br />
<br />
As epilepsy parents, we are always learning. And experiences like this--that evening in early November 2017--form the back-drop of how we decide what is reasonable and unreasonable. <br />
<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com3tag:blogger.com,1999:blog-548540678738371358.post-87639635438072477172017-11-26T23:22:00.002-08:002017-11-27T04:19:46.251-08:00Thanksgiving: 18 Months into CBD<div class="separator" style="clear: both; text-align: center;">
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<br />
Our young adult sons have been arriving home from far and wide since Tuesday. Today--the day before Thanksgiving--our house was noisy and full. Every bed in the house will be occupied tonight and starting tomorrow, we'll start having to utilize couches as well. <br />
<br />
While we'd started shopping for the Thanksgiving meal on Monday, it wasn't until today--Wednesday--that we started cooking. Most of the Awesome's five older, young-adult brothers pitched in to help. Because that's how we do things in our family. And so our large kitchen was a noisy, busy place this afternoon and evening, with everyone working to cook something. Our accomplishments for the day were salad dressing, candied pecans, mashed sweet potatoes, corn bread dressing, and mini pies--apple, rhubarb, and pumpkin. There was music, coffee, wrestling, debate (because there is always debate when our family gets together--it's a family sport), snacks, a pot of soup on the stove to sustain us, lots of laughter, and always chaos. There were also an extra dog--a puppy named Oatmeal--and two cats--who'd just been spayed and looked somewhat shell-shocked as they slept in a hammock in our large kitty crate--in the mix.<br />
<br />
And Awesome, our 13 year old daughter with intractable epilepsy, was in the midst of it all. Participating. She was the instigator of the wrestling contest. She and our 3 year old granddaughter Skye played pretend, drew pictures together, or hung out together most of the afternoon and evening, showing up in the kitchen at some point, dressed in costumes, toting Nerf guns and not afraid to use them, laughing, giggling, and ambushing unsuspecting brothers/uncles. And near the end of the evening when we decided that we all deserved a reward of a warm mini pie, Awesome--with Skye's assistance--made whipped cream using heavy whipping cream. It was Awesome's own contribution to Thanksgiving. And it was all good.<br />
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In one of the breathing spaces of the evening, my husband David and I caught up with each other and noted together how different this Thanksgiving has been so far, from the Thanksgivings of the last two years. A day like today is the gift that CBD has given us.<br />
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I'm not saying that Awesome is seizure free--or even anything close to it. In fact, her little seizure counts lately have been higher than usual as she adjusts to yet another CBD trial, this time of 10:1 Haleigh's Hope. Awesome's brain, it seems, is still struggling to adjust to the change.<br />
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But CBD <i><b>has </b></i>given us the return of our daughter Awesome--in being able to be herself once again. CBD has made an astounding difference in what Awesome is like from minute to minute, from hour to hour. All day. Everyday. The inter-ictal--between seizures--Awesome really is 95% herself again. She is no longer struggling and overwhelmed by all the symptoms that went with pharmaceutical antiepileptic drugs (AED's) and/or with epilepsy itself. The fatigue. The lack of stamina. The lack of resilience. The tendency to become easily overwhelmed. The desire to seek out solitude, darkness, and quiet, to close the door, and to shut out the world because it was all too overwhelming for her to deal with. Let alone participate in. There was also the guilt she struggled with because--and she knew this wasn't right--she just couldn't wait for everyone to leave again because dealing with the activity, the noise, and chaos was beyond her. And there was the sadness that she felt in not being able participate in any but the smallest bit of it all because, again, she seriously just could not handle it all. Despite wanting to be able to do so.<br />
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And there was for us as parents, a similar feeling of sadness because we could see that our daughter Awesome was no longer living life as Awesome--the social, outgoing, life-of-the-party person she was and had always been--but was instead simply existing--self-sequestered in a dark room, tearful, sad, and desperate for the house to be quiet again. As parents it was sad to watch this happen. Sad to see Awesome shut out of the joy and the fun. Shut out of everything she loves.<br />
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That Awesome is once again back to her outgoing, lively, and joyful self. An Awesome who is once again smack dab in the middle of whatever is happening and even more so, an Aweomse who is herself making things happen. Making things happen so much that we've had to actually tell her--as we used to--to tone it down. <br />
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This is nothing short of a miracle. It is the miracle that CBD has given us. It started to happen about 5 to 6 months ago, sometime in June about a month after we transitioned to from Haleigh's Hope 20:1 to Haleigh's Hope 15:1. Gradually, the tired, sad, overwhelmed, constantly fatigued Awesome began to fade and the old pre-epilepsy Awesome began to return. Slowly. But steadily. And that happier, more resilient, more energetic, more social Awesome has continued to remain with us all through these last few months. Despite seizure set-backs. Despite lots of epilepsy and non-epilepsy related stress in our lives.<br />
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*******************</div>
We're now 18 months into our trial of medical cannabis in the form of CBD--which we started on June 1, 2016.<br />
<br />
Charlotte's Web (CW) gave us--aside from a whole lot of troublesome drug interactions with Awesome's AED's--the most amazing thing: big seizures that ended on their own--without rescue drugs--for the very first time. But not consistently so. On occasion we still needed to use the seizure rescue med Diastat to stop status seizures. CW also cut the time Diastat took to work from 10 minutes down to 1-3 minutes. But because things weren't consistent and because we wanted better, we continued to increase Awesome's CW dose, slowly. The optimal dose of CBD is different for every person and unique to each CBD product. The only way to find the optimal dose is to increase dose until you start to lose gains; when that happens, you know you've gone past the optimal dose, so you then lower dose back to where you were before the reversal of gains started. And so that is what we did with CW. Once we'd maxed out Awesome's CW dose as evidenced by a reversal of her earlier gains (and by then she'd been on CW for 4 1/2 months) we figured we'd gotten everything out of CW that we were going to get out of it. And so, in mid October 2016, we switched to Haleigh's Hope.<br />
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Haleigh's Hope (HH) 20:1 gave us a 90% reduction in seizure severity and a consistency that we hadn't seen with CW. No more status seizures. In fact, we literally went a WHOLE YEAR without having to use Diastat to stop a seizure. HH 20:1 also gave us milder seizures. And consistently shorter seizures--in the range of 1-3 minutes. Post-ictal (after seizure) impairments were also no longer severe and no longer lasted several hours; post-ictal impairments became mild and short-lived (half an hour or less). And Awesome's sleep improved dramatically--she suddenly required a lot less and woke refreshed in the morning. But again, we wanted more. And better. And so we continued to increase HH 20:1 dose slowly until we again began to see a reversal of our earlier gains--seizures became longer, post-ictal impairments went back into the the more severe and longer range, etc. When we were sure about what we were seeing, we lowered HH 20:1 dose back down to the dose right below the reversal--which we now knew was the optimal dose of HH 20;1 for Awesome. We let her stabilize on her optimal dose for a month or so, and then in April/May 2017, we switched Haleigh's Hope from 20:1 to 15:1 ratio. 15:1 is product with a greater amount of THC relative to CBD. Since we weren't seeing any reduction in seizure frequency, and we knew that some kids with seizures need more THC to help control their seizures, we figured we'd try more THC relative to CBD.<br />
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Haleigh's Hope 15:1 gave us the improvement in Awesome's secondary symptoms as I've described above in this post. In short, it gave us our pre-epilepsy Awesome back. In all her lively glory. 15:1 also further shortened her big seizure length--down to 30 seconds to 1 minute on average. Post-ictal impairments also became very mild and short-lived--and sometimes Awesome simply had no post-ictal impairments at all. And after seizure headaches all but disappeared. Likewise, Awesome's inability to sustain energy equilibrium between meals also disappeared. We stopped pushing food constantly. Her appetite decreased. She ate less, but did better energy wise nonetheless. And ultimately she lost weight; she was quickly back to her optimum weight. But again, as with the other CBD products, we continued to increase dose until we saw these gains start to reverse. But this time, with 15:1, when we passed the optimal dose, the reversal of gains resulted in more serious symptoms. There was a dramatic increase in big seizures. Awesome also had a status seizure for which we had to use Diastat (we'd just passed the one year anniversary of our last Diastat use). And her post-ictal impairments were the worst they'd been in more than a year: severe (left without language for awhile) and then language impaired for several hours.. And so, after giving it a couple of weeks to right itself in case what we were seeing was happenstance (the longer it went on the less likely that it was happenstance), we backed off the higher dose, back down to what we now knew to be Awesome's optimal 15:1 dose. Stabilizing her was a little harder this time and took a little longer. But we got there. After about 6-7 months, we'd again gotten the maximum benefit we were going to get from HH 15:1. And we knew that we could always come back to 15:1 in the future--at optimal dose--and be happy with the results. <br />
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But again, we wanted more and better. And so we decided to trial Haleigh's Hope 10:1. HH 10:1 is the highest THC product we can use without having to pick up and become medical refugees in another state that has better laws and better access. And by the way, unless and until we find ourselves in a true crisis situation, we don't anticipate moving to another state and becoming medical refugees. And so, we consider Haleigh's Hope 10:1 our last, best hope in the medical cannabis realm. It's the end of the line cannabis trial wise.<br />
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And so now--with Awesome 2 weeks into a trial of half 15:1 and half 10:1 CBD--we're waiting to see what Haleigh's Hope 10:1 might do for us. Realistically, if things go according to plan, I expect it will take at least until about March or April 2018 to know what 10:1 will or won't do for Awesome. And while we're hoping for seizure freedom (the Holy Grail of epilepsy treatment) or at least, more realistically for Awesome, given her history, some reduction in seizure frequency, we're trying not to get our hopes up.. Our strategy is to expect nothing--and maybe be pleasantly surprised. Better this than expecting too much--and being disappointed. <br />
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Hope, it seems--however, besieged and beleaguered it may be--springs eternal. No matter how hard we try to be realistic and quash it down so we don't get too disappointed, hope is buoyant. It bobs to the surface again, every time, before reality plunges it below the surface again and it begins looking for another place to try see its way clear again to the surface.<br />
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When it comes to Haleigh's Hope 10:1, time will tell. It always does. And any gain at all in the right direction, however small, we will celebrate. Because every step in the right direction is a miracle of sorts for those of us dealing with intractable seizures. And CBD really has been, in that regard, our worker of miracles. Even if it hasn't delivered epilepsy's Holy Grail for us.<br />
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It's now three days after Thanksgiving. All the brothers have returned to their lives whether here or elsewhere, whether back to their universities or to their jobs. Our household census, which tends to expand and shrink dramatically many times a year, has shrunk again. Tomorrow we will be back to the usual weekday grind of homeschool, extracurricular activities, and work. <br />
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As we think back over Thanksgiving this year, it's been the best Thanksgiving in the last three years. Maybe it's the 10:1 already starting to help; maybe it's just the way some gyrations of some unknown internal rhythms have worked out; or maybe it just sheer dumb luck--pure happenstance--but Awesome's had no big seizures for the past 12 days. Despite all the excitement of the Thanksgiving holiday. And despite us throwing caution to the wind (how many times can you say no to your child before finally saying yes?) in allowing Awesome to cheat on the diet she's on to minimize her seizures triggers. Yes, that's right, we were bad (or good, depending on how you look at it) parents for allowing Awesome to have apple pie with whipped cream three or four times over the Thanksgiving holiday. We expected to pay the price, but nothing bad happened big seizure wise. Sure, she spiked plenty of little seizures, but she was already doing that as a consequence of starting her 10:1 trial or for some other unknown reason, But so long as the little seizures don't get out of hand (above 20 a day that we can see), we don't really get excited or worry about her little seizures. Her little seizures are like the drumbeat in the background that allows us to gauge--by their frequency--how riled up Awesome's brain is. The little seizures don't really hurt anything so long as they stay in the below 20 or 30 a day range.<br />
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Throughout Thanksgiving and the days afterward, Awesome continued to be in the midst of everything. To interact. To participate. To stick close by, in the midst of the chaos. And she loved it. She did take short breaks on occasion, to recoup, and to rest. But her batteries now recharge fairly quickly. And she was not only able to hop quickly back into the activity and interactions, but she was motivated to do so. And she was sad to see everyone disperse again.<br />
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Thanksgiving is a time to give thanks. And this Thanksgiving we are giving thanks not only for all the usual blessings, but for the blessing of Awesome having been able to participate in Thanksgiving celebrations in a normal way. For Awesome being back to being herself again. Thanks to CBD.<br />
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Another time I'll talk about how difficult the last Thanksgivings were--in 2015 and 2016. But for now, for this post, I'll stick with the positive. The happy. And we'll simply bask in the afterglow of this Thanksgiving just past. Thanksgiving 2017. And acknowledge all the good CBD has done for Awesome in these 18 months. Thankfully. Gratefully. And happily.Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-25262907369220523172017-11-20T14:50:00.001-08:002017-11-20T21:23:02.916-08:00Homeschooling with Intractable Epilepsy: A Typical Day for Us<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-j2pUJZrUEzA/WhKe0WOnKZI/AAAAAAAABHI/PUtfVn4iWzo19T9q73hUNZuoS1XR6lMawCLcBGAs/s1600/4-24-09%2BRAW_1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://2.bp.blogspot.com/-j2pUJZrUEzA/WhKe0WOnKZI/AAAAAAAABHI/PUtfVn4iWzo19T9q73hUNZuoS1XR6lMawCLcBGAs/s640/4-24-09%2BRAW_1.JPG" width="480" /></a></div>
It's a weekday. A school day. A homeschool day.<br />
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By the time I wake, my husband David has been up for a couple of hours. He's already showered, and is working. This morning he's drafting a memo for an international human rights organization. It's fortunate David's able to work from home many mornings, because mornings--our daughter Awesome's most seizure prone time of day--can be very rough around here.<br />
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As he works, David listens for the first indications that Awesome's awake. Once she wakes, he'll spring into action, helping set in motion our choreographed morning routine. In this our morning dance, there's a reason for the way we do almost everything. Our routine is deliberate, disciplined, and exacting.<br />
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These days I spend a lot of time worrying about the line between reasonable and unreasonable. Between normal and abnormal. I think a lot about whether Awesome is really a normal child with epilepsy. Or whether she's a child precariously balanced on the edge of a scary precipice and whether the whole normal thing is really an illusion. I want desperately to believe that she is that normal child who just happens to have epilepsy. And not the child balanced precariously on the precipice before the inevitable fall. We work hard to keep that fall from happening.<br />
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Awesome's being able to remain stable over the long term--and not to end up in an acute crisis situation that could quickly deteriorate into a serious health-threatening and life-threatening situation--is almost entirely dependent on our ability to adjust the little things of her life--environment, routine, and diet--so as to keep her stable. In intractable, drug-resistant epilepsy the particulars of life, the environment, routines, and diet are not neutral. They can determine whether a child will remain stable or be swept up in an acute crisis. And an acute crisis is like a swiftly flowing stream. Once you enter it, it's not always possible to control where you end up. One thing leads to another which leads to another which leads to another and often, before you know it, you are in serious danger. We've been there. It's a scary place to be. We've also watched others go there and end up in the undertow, in the rip tides, in the undercurrents that pull their child under and away, until rescue is very difficult--and not always successful. And so we work diligently in the little things of life, to reduce the likelihood that Awesome will end up there, caught up in the strong currents.<br />
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As soon as the sleep's gone from my eyes, I slide out of bed, pad softly across the bedroom (so as not to wake Awesome), find the bag containing Awesome's rescue medication--it's always hung on the door handle overnight so we know exactly where it is--and slip it over my head. I'll wear Awesome's rescue medicine bag all day long. It will come off only for the short time that I'm showering or getting dressed. And if another family member assumes responsibility for her care--and some ONE person is always in charge of Awesome so there are no mix ups ("I don't have her, I thought YOU were watching her!")--I will hand the rescue med bag to that person--to wear on his person (not to put down somewhere and lose track of), Having Awesome's rescue medication very close at hand at all times is very important because Awesome has a very strong history of status epilepticus--seizures that don't end without medical intervention. Having rescue drugs close at hand could be the difference between keeping Awesome on the shore or risking having her get caught up in that swiftly flowing current of an acute crisis that could quickly get out of hand.<br />
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But for now, Awesome's still sleeping soundly. Unlike most school aged children, Awesome--who has intractable (drug-resistant) epilepsy-- doesn't have a set wake-up time. Rather, she sleeps until she wakes own her own. Through experience we've learned that waking Awesome (instead of letting her wake on her own) triggers increased little seizures and also greatly increases the likelihood that she'll have a convulsive seizure. And since having a convulsive seizure usually short-circuits the entire morning, (before CBD, it used to short circuit the entire rest of the day), there's really nothing helpful to be gained by waking Awesome instead of letting her wake on her own.<br />
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Homeschool really makes a better, more stable life possible for Awesome. If she were in public or private school and had to be up and out the door to be at school at 8 AM, I believe we'd quickly find ourselves in a crisis situation. Being woken early (instead of waking on her own) would cause more seizures--big seizures, absence-like seizures, and subclinical seizures. The increase in big seizures would undoubtedly cause Awesome to miss a lot of school (she'd just not make it there many mornings or have to leave school again if she did). Likewise, the increase in little absence-like and subclinical seizures would have the secondary effect of making learning much, much more difficult. Short absence-like seizures impact learning because they randomly interrupt both attention and processing. It's difficult to learn when your brain is randomly checking out for 1-7 seconds at a time every few minutes. <br />
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And those secondary learning problems, lead to additional stress; additional stress in turn to more seizures until things begin escalating. The stress trigger/seizure escalation process can be like a snowball rolling down a hill gathering weight and momentum and speed. Seizures lead to secondary stress; secondary stress triggers more seizures; more seizures lead to more secondary stress; which leads to more seizures.....and on and on and on it goes. You are quickly inching your way out from the safety of the shore into the swiftly flowing stream and before you know it, you're in danger of being swept along by something with too much momentum. Wresting back control becomes harder and harder. It's not far-fetched to imagine that we'd quickly come to a crisis point--not just in terms of school attendance and learning-- but also in terms of epilepsy severity. We just simply do not want to go there, if at all possible<br />
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In fact, as crazy as it sounds, without homeschooling, life as we know it right now with Awesome, would be difficult, if not impossible. We'd be in a much worse place both in terms of learning and in terms of epilepsy severity. Homeschooling gives us flexibility in so many ways. Flexibility to let Awesome sleep until she wakes and so keep seizure counts lower. Flexibility to start and end school days later. To give Awesome hours or a day to recover when she's just had a big seizure. To work ahead on good days so that when bad days come, we're not behind. To pause and respectfully wait for a little seizure to end, and then to repeat what she just missed because she lost consciousness. In short, we have the flexibility to accommodate the unpredictability that is intractable epilepsy.<br />
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But back again to our typical day...<br />
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Awesome usually wakes sometime between 8:30 and 10:30. How late she sleeps is a function of the impact of her current kind and dose of seizure medication, how much trouble she had falling asleep the night before, how well she slept during the night, and unfortunately, also how reactive her brain has been lately. We've noticed that what time Awesome wakes is a kind of a measure of how well she's doing. When she wakes earlier and refreshed, it's a good sign. When she sleeps longer (up into the 10-11 hr. range) and is groggy on waking, it's a very bad sign.<br />
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Seizure hypervigilance starts early each day. As soon as I wake, in fact, because morning is Awesome's most seizure prone time. I stay in the room--or the adjoining bathroom (with the door open between the rooms so as to listen for sounds of a seizure)--until after Awesome wakes.<br />
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If Awesome still hasn't woken by the time I return from the bathroom, I find my computer and lie on the bed beside her until she wakes. Immediately after she wakes, before she gets out of bed, I give hand her the oral syringe with her morning dose of CBD. She chases it with a swig of orange juice that David has left on the nightstand in a very small covered plastic container. I take note of the time and alert David that Awesome's awake. He puts on the tea kettle and sets the kitchen timer for half an hour.<br />
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I follow Awesome into the bathroom. It's awkward, but because at least a third of Awesome's seizures occur in the bathroom right after she wakes, and we've found that having me be in the next room lying on the bed results in delayed seizure response--with Awesome falling over onto the bathroom, or hitting her head on the counter, or falling flat on her face on the hard tile--all dangerous things--we've just given up, and Awesome has had to give up her privacy in the morning. She's OK with that. I sit on the counter surrounding the over-sized bathtub, and try to stay alert so I can on a second or two's notice, rescue her on from falling, while at the same time trying to give her as much space as possible. Awesome usually wakes up slowly, and we can be in the bathroom for awhile. David knocks on the door and I crack the door open enough so that he can hand us metal containers with lids--one with milk tea for Awesome (because the sooner she gets calories and protein in the morning the better) and one with water for Awesome. We learned our lesson last Christmas when it came to using breakable glasses. Awesome is not allowed to have breakable drinking cups anywhere but the kitchen table. We've also found the hard way that cups with lids are the way to go. And so she (and we) use only <a href="https://smile.amazon.com/Contigo-AUTOSEAL-Insulated-Stainless-Easy-Clean/dp/B00HZI5XNO/" target="_blank">Contigo vacuum seal stainless steel coffee mugs</a> for any drinks in the house. <br />
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As soon as Awesome is done in the bathroom, she takes her morning medicine and supplements, each one carefully chosen and dosed after careful research and experimentation. Each one valuable for a different reason. CBD and supplements have to be given at least half an hour apart.<br />
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Awesome then does her morning chores of feeding and watering our dogs, Belle and Coco, and cat, Marble. But because she's still in seizure-prone mode, having just woken, she can't do this alone. She is shadowed--sometimes closer and sometimes at a distance to give her dignity--by David. She loves giving her much loved dogs (she is a dog person!) their morning treats and loving on them. And then she sits and loves on her cat for a few minutes on the front porch with David with her. After that she gets dressed or showers. <br />
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Showering is a whole thing in and of itself. We've already dealt with three shower seizures, so Awesome and I tag team showers. She goes first and I sit in the bathroom while she showers. I can't see her behind the shower curtain and so our rule is that she has to sing in the shower. A singing Awesome is a conscious, non-seizing Awesome. When she stops singing or talking, especially mid sentence, lyric, or word, I check on her. Sometimes we put music on and we both sing to it. Sometimes she--or she and I--sing a capella together or we take turns, each singing a line of lyrics. Sometimes she doesn't feel like singing and so we talk instead. One morning during talking while she was in the shower, she failed to answer and then failed to answer my query if she were OK. And I opened the shower curtain to find that she wasn't OK. Thankfully, I got her out of the shower and safely to the floor before the convulsive seizure's full weight hit. When Awesome has a morning seizure, it usually derails the morning. Before CBD, a morning seizure used to derail the whole day. She'd sleep deeply for up to an hour, and then wake with serious impairments. Often she'd be unable to speak for an hour, and her ability to speak normally would take another hour or two to fully return. The other parts of her brain that had been affected would also cause issues. And then she'd be so totally fatigued and have such a serious headache that the day was a loss. Since CBD, Awesome usually sleeps half an hour or less, and then her post-ictal (post seizure) impairments are mild and short-lived (minutes instead of hours) or she has no impairments at all. Usually she's ready to rock and roll again in a couple of hours, and often she's game for the rest of the day's regularly scheduled events--school and extra curricular activities.<br />
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Most mornings, she does NOT have a major seizures and so, after she's done showering, I shower. We chat while she dresses and then David takes over her care--she or he has to confirm that she's in his care; we can't assume. David has gotten her breakfast in the meantime. Before CBD, breakfast was a major big deal affair because Awesome's ability to function in the morning without constant seizures depended on having a big, high protein breakfast. Since CBD, her ability to maintain steady, normal energy levels has improved. And so, because Awesome has decided that eating is a chore that she'd like to avoid if possible--breakfast is a hard sell. These days it's often fruit and yogurt.<br />
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Awesome eats while David starts her geography and history lessons. David teaches from primary source material, from non-fiction books, historical fiction, from maps, etc. and there is a lot of discussion, interaction, and back and forth. Awesome truly wakes up during this period of time. When I emerge from the bathroom, the sound of the their lively discussion is loud and often raucous. Awesome is full of opinions. They then go on to Bible. Awesome prefers to do the reading out loud and tends to give her own commentary. She's explained to me her own rendition of the Exodus story this week which involves the children of Israel constantly blaming Moses for everything. She felt really sorry for Moses until the bit about him getting mad at the Israelites and then commanding them to murder each other as punishment. Now she hates Moses and considers him a mass murderer. She explains that kids' Bibles are dumbed down and that she prefers the adult version which is, in her opinion, wild and interesting, if sometimes disturbing.<br />
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As father and daughter read and discuss, I get myself together, straighten the house, load the dishwasher, and start the laundry--or depending on the day, work on supper prep or cooking. By the time I'm ready to sit down with Awesome, she's reading her history assignment for the day. Right now she's reading the Odyssey, having just finished the Iliad earlier this week. She loves these books and keeps telling me to wait til she reads just a little more. I finally insist that she read more on her own time--it's time to start English. Before we start English, David, Awesome, and I discuss lunch plans and decide what we'll do for lunch that day. Eat leftovers, make something quick, pick something up, or get out of the house for a quick lunch. Awesome does best if she has a lunch with a lot of protein--preferably meat. If she doesn't get enough protein and calories, she is prone to more seizures and an energy deficit in the afternoon. The difference since CBD is that it isn't an energy crisis and a boatload of seizures. If we've decided on picking something up, David heads out to do the pick-up while Awesome and I start English.<br />
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We use a rigorous traditional English grammar and writing text. We do most of the lesson orally and the only writing out I ask Awesome is sentence diagramming and essays (the latter on a word processor). We do an oral review of previous lessons' content (in the form of questions I ask Awesome). Awesome then reads the current lesson out loud, and we do every single question in every single exercise--Class practice and Written Exercises--orally. As needed, I correct and explain as we go. Awesome finds English grammar and even sentence diagramming, very easy. She aces most of English, though she groans about diagramming, and currently hates the writing assignments--which is odd because she is an excellent writer. She just doesn't like to write things SHE doesn't want to write. But we're working on that since she doesn't really have a choice. 7th grade includes a lot of writing assignments and to her consternation, I have even more writing assignments planned than are outlined in the English textbook.<br />
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As soon as we're finished with English, it's lunchtime (and lunchtime meds time too). All throughout the morning, David and I have been noting Awesome's little seizures with tally marks in a notebook I keep for that purpose. Some mornings we'll see just 1 or 2. Most mornings we'll see 3-5. On worse days we'll see 7-9. And on really bad mornings we'll see 10 or more. We worry most on mornings when we see none, because that can bode badly for the possibility of a big seizure on the horizon in the next day or two.<br />
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After lunch, as David heads off to the university to teach classes, Awesome and I set up at a table in the schoolroom for Algebra. I'm a stickler for math, and I have a rigorous program that I've devised and have followed with our older kids that ends with them completing College Calculus at our local liberal arts college by the end of high school as well as having a basic knowledge of mathematical modeling and computer coding, both achieved through learning C++ computer programming language through EPGY (Educational Program for Gifted Youth) through Stanford University. I know, it's crazy high achieving, but hey, it's worked for our sons and even propelled one of them--who had always loved math--into engineering. He's now a very successful, sought-after firmware engineer. What all that means for Awesome is that she and I are working our way through a really well-thought out Algebra textbook together this year. She and I sit side by side and both individually work out every problem; we check our answers against each other, find the mistakes together, discuss it all, and correct mistakes as we go. Awesome is doing well--she aced her last test with a 98%--and, believe it or not, we're having fun with Algebra (though she would never admit she likes Algebra, I think she does). I allow Awesome to play her favorite Spotify playlists during Algebra whenever we get to a stretch where we are working several problems in a row and there's no need to discuss anything for several minutes.<br />
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One day a week, right after lunch, instead of heading to the schoolroom for math, we instead head out to the public library for Awesome's Writing Group. It's a group of 5-6 homeschooling students ranging in age from 12 to 16, who all love to write, discuss writing, do writing exercises, and share their writing with each other. Awesome's been a part of the group for a year and a half and she loves this group; they enjoy each other's company. On the one day a week that her Writing Group meets, we hurry home from the library and dive right into Algebra. We try hard to still get through all her schoolwork before swimming. If we don't, we try to make up what we didn't finish, the next day.<br />
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As far as Awesome being a writer, she's actually a very talented one. She has a following of over 400 readers on Google+ where she posts daily installments (actually she's taking a creative hiatus right now) of her fantasy fiction stories to a loyal readership--a readership that includes those who offer to illustrate some of them. Pretty impressive for a 12 year old, huh? Awesome has grown up with older, very creative brothers (5 of them, no less) who were busy filming stop motion films, writing songs, playing music, writing stories and poetry, drawing and painting, creating computer programs and inventing, and frankly ALWAYS doing something creative. With her brothers always involved in something creative (and still involved in something creative), it was almost inevitable that Awesome would find her own creative outlets at a young age. After watching her brothers spend a couple of summers writing, filming, editing, and voicing a stop motion film, Awesome herself conceived, shot, and directed her first stop motion movie--"Hello Kitty and the Death Skunk" at the tender age of 5--and entered it in a kids' film festival competition; she even got an award or two for it.<br />
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After Algebra, we move back to the couch for science. Awesome hates science because the textbook is badly written. We'd already ditched the first textbook of the year for the same reason. So we're simply going to stick with this one and struggle through. Awesome does a lot of complaining about the textbook. But we're still learning how to decipher and understand a text and make the best of it, even when it leaves out information, and was clearly written by a geek who can't introduce ideas and drops random facts in and then expects you to remember things that seem incidental. We supplement with Google, online videos, and with more interesting books. We struggle through, taking turns reading, complaining, and discussing. Some chapters are better than others. By the time we're through Science, I'm sleepy and Awesome's tired and restless. We take a break. Sometimes we exercise by walking a certain number of steps, or by racing around the house until we get silly; sometimes we dance; sometimes we visit with our dogs. Sometimes I just let Awesome do as she likes for 10 minutes. Usually she gravitates to a comic book. Because of her intractable epilepsy and the possibility of a seizure at any time, I can't leave her alone in a room by herself without having her on video or calling out to her every minute or two. Often, I ask Awesome to eat a snack at this point in the day. She says eating is a chore. Often she'll agree to drink a smoothie. I make it while she sits nearby. Or I call out to her and check on her every two minutes.<br />
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At this point it's usually around 3 something. I give Awesome her afternoon syringe of CBD. She washes it down with a swig of orange juice or the smoothie I've just made. <br />
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With smoothies in hand, we set up for our last subject of the day: visual/spatial skills and art. It's recommended that kids with epilepsy--especially kids with intractable epilepsy--undergo neuropsychological testing to both establish a baseline, and then check for cognitive decline over time due to seizures, damage from seizures, and effects of medication. When Awesome went through neuropsychological testing this past spring to establish a baseline, it was noted that she showed issues with visual processing and spatial skills. And so, we've been working on strengthening those skills. We spend half an hour on spatial analysis skills (we do all the activities working side by side, each with our own set of blocks or whatever--so we can both race each other and also correct each other) using games like Q-bitz, Color Coding, Keva puzzle cards, etc. For the second half an hour, we are reading through, learning from, and doing the exercises in Drawing on the Right Side of the Brain. Awesome has gone from having a hard time with some of these things to really doing well at them. It will be interesting to see if her spatial and visual processing scores improve whenever she has retesting with the neuropsychologist.<br />
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We usually finish schoolwork with very little to no time to spare before Awesome has to start getting ready for her after school extracurricular activities--which start at 5 PM. Four days a week, that's swim team. One day a week that's Theater class. Awesome absolutely loves her theater class. The kids in it are all free spirits who march to their own drummer, as she does. In that respect, she's found her tribe. She's learning to like swimming... We'd hoped swimming would be her main social function and where she'd find a ready peer group, as her brothers had, but alas, the swim team we once knew is no more. A new hard-driving head coach--more appropriate for a college team than one composed of high school, middle school, and elementary-aged kids, literally decimated--through unreasonable practices--our sons' beloved swim team the year after Awesome's youngest brother left for college. The team went from several hundred swimmers (300-400) down to maybe 50 swimmers; it also lost its practice facility. The team that is left is a shadow of the team that our sons knew and loved--the team that provided them with not only adult coaches who were amazing mentors, but also with a large peer group. Awesome is most often one of only two to four kids in her group--not even the same kids consistently week to week. When it comes to extra-curricular classes I can't simply drop Awesome off. I have to stay there nearby, watching Awesome, ever diligent for seizures. At Theater, I watch through the two way mirror, from the observation room. At swimming, I have special permission to be on the pool deck (where no parents are usually allowed), watching Awesome every minute for signs of a seizure--in case she needs rescued. By the time Awesome finishes with theater or swimming it usually 6:15, and she's usually fairly exhausted.<br />
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We head home. I cook or we eat food I've prepared and frozen in individual servings. Awesome, meanwhile, just wants to be left alone to think her own thoughts and to lose herself in her comic books, by watching cartoons on the computer, playing, or drawing quietly. She can't be unsupervised in a room by herself, so we have ways of keeping her under video supervision while I have to be in a different room. Awesome enjoys the time by herself even if we have to watch her on video.<br />
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Often Awesome is so hungry by the time we get home from swimming, that she's too hungry to wait for Dad to get home from work; she often eats right away. Awesome will spend the rest of the evening depressurizing from the day and relaxing--as do we. After cleaning up from supper, David and I usually watch a program on Netflix--and I'll double task by folding laundry or doing meal prep for the next day while we do so.<br />
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As it gets towards bedtime, I'll take Awesome her last dose of CBD for the day. She gets ready for bed while David fixes her milk tea. He thinks it helps her get through the night energy wise. I stay with Awesome as she gets ready for bed because, again, she can't be alone in a room without a video camera and its not a time for video cameras. <br />
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Half an hour after her CBD, Awesome takes her last medicine and supplements for the day--including melatonin. She reads me her Empatica Mate statistics for the previous night. I record them. I also chart all her seizures. I've been quietly keeping count all day long. We pray together. We spend some time talking. And then she works on being quiet and going to sleep. It can take her an hour to fall asleep. How quickly she's able to fall asleep seems to be a function of how well she's doing. Sleep is not an easy thing for Awesome, as it's not an easy thing for many kids with epilepsy. When Awesome finally falls asleep, she usually sleeps deeply. Even in her sleep I monitor her for big seizures, even as I sleep. Because with a very strong history of status epilepticus, an unnoticed seizure at night could be very serious and health- or even life-threatening.<br />
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Because I've been "on call" pretty much all day-- from the time I woke up in the morning until the time Awesome went to sleep at bedtime--I really need some "down time" before I can go to sleep. I need some time when I can decide what I do with my time. When I can think my own thoughts. When I can write about this crazy life we live. When I can breathe and not be quite as hypervigilant for a while, even if I have to do it lying on the bed beside Awesome. And so, I tend to stay up after Awesome--and even my husband David--goes to sleep. I write. I reflect. I exist. I calm down and wait to get sleepy. <br />
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This account of our day barely scratches the surface of what it's like to live a school day with a child with intractable epilepsy. One who is homeschooling to give her a better chance at life. What it's like to live with the special problems. The responsibilities. The worries. The hypervigilance. The things that are perfectly normal. And the things that are anything but normal. The days that are vulnerable because a seizure can strike without warning anytime day or night. And the way living with that reality changes the way your live. And the way you are always at the ready to give critical seizure first aid. And the days that are still amazing as we watch Awesome learn and grow and blossom into who she is in spite of epilepsy. All the little things we do to buy Awesome the space to exist as a relatively normal child, a child not caught up in an acute seizure crisis. The ability to stay close to the shore. The ability to not get caught up in the wild currents of intractable epilepsy that threaten to pull her away and under the swiftly moving water where her life would become about surviving instead of learning and becoming.<br />
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<br />Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com1tag:blogger.com,1999:blog-548540678738371358.post-91888110645512060452017-11-14T23:53:00.002-08:002017-11-17T00:53:11.476-08:00Paying the Price of Attempting Normal<div class="separator" style="clear: both; text-align: center;">
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Despite all the scary stuff--which she hates--Halloween's always been one of our daughter Awesome's favorite holidays. She's always loved choosing who or what she wants to be. And then dressing up, knocking on neighbors' doors, and collecting treats. The planning. The excitement. The social aspect. The candy. Everything.<br />
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But, since discovering a couple of years ago that candy causes seizures for her, we've had to make some Halloween-related adjustments. That first year after our unhappy discovery, Awesome went trick-or-treating, but didn't eat the candy. And then last year, though she dressed up, she didn't go trick-or-treating; instead, she handed out candy at our front door. But this year, given her current mental state--can you spell p-u-b-e-r-t-y?--and her growing frustration with epilepsy's restrictions, she decided early on that, rather than do Halloween half-way yet again--which would just serve as another reminder of all the things she can't have--her strategy would be to ignore Halloween altogether. To sit it out. And not participate at all. In any way.<br />
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And because she was unwavering in her decision--and it was totally her idea and she argued the merits of her choice to us rationally and well---we simply respected her decision. We didn't try to dissuade or otherwise persuade her. We simply noted, silently and sadly, that epilepsy had stolen yet another thing from her. Something she really loved.<br />
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However, October 31st still had another trick up its sleeve. One that would help make up for Awesome's loss.<br />
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Exactly 500 years ago--on All Hallows' Eve (Halloween) in 1517--a German monk named Martin Luther nailed 95 theses to the church door in Wittenburg, Germany. And in so doing, he somewhat unwittingly helped set off a series of events--a revolt, a revolution--known as the Protestant Reformation. And because of that, October 31st, at least in some circles, has become a day to commemorate not only Martin Luther's posting of his 95 Theses, but also, the whole of the Protestant Reformation. October 31st is not just Halloween (All Hallows' Eve)--it's also Reformation Day.<br />
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And Reformation Day this year was quite a big deal. A 500th Anniversary big deal.<br />
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In honor of this big deal, our family was invited to a Reformation Day party--to be held on October 28th, the Saturday before Reformation Day. When we got the invitation, Awesome was very happy. Here was a chance both to spend time having fun with her writing group friends--from one of whose families the invitation had come--and also a chance to get dressed up in a costume--just like she'd have done for Halloween.<br />
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We were to come dressed in period garb--1500's garb, that is. At this point in our lives, coming up with a costume that might even halfway resemble something 16th century-ish was a little beyond us. So Awesome did some checking with her writing group friend and found that we need not come in Medieval costume. Any costume or no costume at all would do. And so Awesome decided to dress in her favorite Halloween costume from years past: a hyena costume I'd made her 3 years earlier. And me? No costume at all--just my normal clothes plus a heavy sweatshirt and a wool coat, because it's getting very cold out there, and I'm a wimp when it comes to the cold.<br />
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If you live long enough, you find that life is increasingly full of ironies. The connections between people, places, things, and events that aren't connected at first glance start to pile up--in weird, ironic, humorous, and unexpected ways--increasingly and amazingly, until sometimes life seems like one big kaleidoscope of astonishing relationships between disparate things. These connections are like a hidden reality that becomes visible only over time; or like a giant cosmic connect the dots. The interconnectedness between things is a complex web of interrelationships that resemble a spider's web. Reality is a fabric in which the connections between any two things are numerous.<br />
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Here's an example of this: as Awesome and I prepared to attend a Reformation Day party, David (my husband, Awesome's dad) was sitting in an airport waiting to board an international flight to Geneva Switzerland---one of the cities at the historic epicenter of the Reformation.<br />
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David was to arrive in Geneva, a major center of the Protestant Reformation, two days before the 500th Anniversary; and he would be in Geneva on Reformation Day itself, October 31st, 2017.<br />
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And, as incredible as it sounds, this was happenstance. David's trip had nothing whatsoever to do with the 500th anniversary of the Protestant Reformation directly or indirectly--nor even anything at all to do with religion. He was in Geneva on business--part of a working group on human rights--a group that's met in various places in Europe over the last year or two. That he was in Geneva on the day on the 500th Anniversary of Protestantism's beginning--was just one of those weird and random flukes of life. Life seems to be full of these sorts of things: coincidences so incredible that it seems like they ought to mean something---if only we could figure out what....<br />
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It was just one more instance of the ironic connectedness of things too, that we--as a family--had briefly visited Geneva in 2004.--while I was 5 months pregnant with Awesome. In Europe for the summer as a family while David did a Human Rights teaching gig, our weekend Geneva visit had been a quick trip to visit a college friend. Our oldest three sons had immediately joined that friend's oldest son's Boy Scout Troop, which was sailing on Lake Geneva that afternoon. That left the rest of us--our college friend, David, our youngest two sons, and I (with Awesome in utero)--to spend the day visiting the Protestant Reformation related sites in Geneva. And now, as the 500th anniversary approached, I was reminded of all the places we'd visited.<br />
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Despite Awesome's excitement about the Reformation Day party, I struggled with whether it made sense for us to attend. I wish we could simply just go to an event like a party. But with intractable epilepsy we can't, Going to an event like a party is almost always a bit of a high stakes gamble. And so, to minimize the possible losses, we need a strategy for how to handle things. First we have to decide whether it makes sense to go at all, given all of Awesome's environmental, diet, routine, etc. constraints. Is it a time of day when she's seizure prone or more likely to be seizure free? Does the activity involve seizure triggers or will it be possible to do things in a way that avoids her seizure triggers? Is it an activity in which, were she to have a seizure, she'd be in endangered or she'd put others in danger? Is it an activity where her special supervision needs can be accommodated? And finally, do the benefits of the activity outweigh the possible risks and/or costs to her, us, and others?<br />
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Once we decide it might make sense, we still have to agree on how we'll minimize risks both through supervision and minimizing seizure triggers.<br />
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When it comes to supervision, going into a party like this one, where the kids run off to play and the adults tend to stand around and talk, means that keeping Awesome safe is very challenging. Keeping track of Awesome is hard when both David and I are working together to accomplish it. But with David in a plane somewhere over the Atlantic at the time of the party, the task of keeping Awesome safe would be all mine--and so, much harder.<br />
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Unlike most of the other parents (most of whose children were old enough to not need constant supervision), I wouldn't be able to simply enjoy myself and be content to see my child by happenstance during the evening. Keeping Awesome safe by keeping her even minimally supervised would necessitate constantly excusing myself at least every 3 to 5 minutes to make sure that she was accounted for and not seizing. I could already imagine the way the evening would go. I would be jumping in and out of conversations, awkwardly excusing myself, and constantly deciding whether to explain the why's of excusing myself or whether to simply look--to the uninitiated--like someone with an anxiety disorder or a bad case of helicopter parenting.<br />
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The alternative to jumping in and out of conversations all evening, would have been to shadow Awesome constantly--and I didn't want to do that. What nearly 13 year old,<br />
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But if Awesome suddenly fell down seizing, I had no doubt that, if another child saw that happen, he or she would alert an adult--and the alert would get to me fairly quickly. Of course, there are 101 cracks in that strategy--cracks big enough for a seizing child to fall through right into 911, an ambulance ride, or even a bed in the Pediatric Intensive Care Unit. And so, the longest I would let Awesome go without my direct supervision would be 3-5 minutes, which meant that I'd be checking on Awesome more than 20 times an hour. My strategy left a lot of room for possible disaster, but it also left a lot of room for an evening of freedom, fun, and being a normal kid for Awesome.<br />
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We conscientious epilepsy parents--and most of us are conscientious-- are very aware of the ripple effects a seizure can have on a community. And the reverberations that might come back to us over time. Even if everything worked out for Awesome supervision wise, there was the question of the effect a seizure would have if she were to have one at the party. There would be the question of my feeling guilty for having traumatized others and dampened the mood. And even more than that. I worried that Awesome's friends' view of her might change if they witnessed a traumatic big seizure.<br />
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Epilepsy parents spend time thinking about strategies, weighing risks/costs and benefits, and following what-if scenarios through to their possible conclusions. We worry over these difficult decisions--decisions that can seem more like gambling than anything else. Because seizures are so unpredictable. Seizures happen to happen when they happen. And while we'd like to think the what-if's won't happen, we have to be honest enough with ourselves and others to plan for the fact that they very well might. We have to count the cost for everything we do. And feel OK about the possibility of paying that cost, because living with epilepsy is a lot like playing Monopoly on a board in which many of the properties are not only owned, but crowded with houses and hotels. The question is not whether you'll land on a property with hotels--and very unpleasantly have to pay the price (exorbitant rent), but instead, the question is simply WHEN you'll roll the dice, land on a loaded property, and have to pay the price. With intractable epilepsy, the seizures are relentless. They come. Always. And keep coming. Always. The question is not whether they'll come, but when they'll come. And when you'll pay the price. And when you do pay the price, how high the price will be. These are the reasons why we epilepsy parents tend to look for ways to reduce the price ahead of time. We're always looking ahead and weighing things carefully, to make sure that we will have the reserve (resources) on hand when we do have to pay the price.<br />
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There were also the party's food-related worries. Given all of her dietary restrictions, would Awesome be able to find things to eat? Would she be able to sustain her resolve to not eat things she shouldn't, even amid a spread laid out with some of her favorite seizure-causing foods? Could and would an unsupervised Awesome, stay within the constraints that kept her seizures less likely? I hoped so. I'd already decided that I wasn't going to deliberately stand over the food table like a policeman--but I would intervene if I happened to see something right under my nose. And right up there with concern that Awesome would eat contraband foods, was the worry that she wouldn't eat enough that evening--and that that lack of eating would itself trigger a seizure--as it sometimes does for her.<br />
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<a href="https://1.bp.blogspot.com/-DW6elYe7_AU/Wgvu-HTe8UI/AAAAAAAABFU/0Ezsb-CHIqkUTOhn5are1knT3fsMQ8oBACLcBGAs/s1600/DSCF4966.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://1.bp.blogspot.com/-DW6elYe7_AU/Wgvu-HTe8UI/AAAAAAAABFU/0Ezsb-CHIqkUTOhn5are1knT3fsMQ8oBACLcBGAs/s400/DSCF4966.JPG" width="300" /></a>Given all of these concerns, there was a part of me that just wanted to stay home. That wanted to skip the party and all the additional stress and worries it would bring. Life with epilepsy is full of risk/benefit as well as sacrifice/benefit calculations. Was the joy, happiness, and enjoyment Awesome might get from the party worth all the additional stress, risk,vigilance, and awkwardness?<br />
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In many situations for many activities, the calculation would have come out differently. I'd have just said no.<br />
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But this was different. Because most of the kids in Awesome's writing group would be there, Awesome really wanted to go to this party. In fact, she was super excited about the possibility. Awesome's a very social kid. She loves her writing group friends; they enjoy each others' company and have loads of fun together. <br />
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When the day of the party came, Awesome was feeling good; she was full of energy. And there were no discernible signs that she was at risk for a big seizure. <br />
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There was really nothing to stop us from going to the party. And every reason to go. And so, in the end, I was brave. I decided to take the chance. We'd go to the Reformation Day Party!<br />
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We were at the party for nearly 4 hrs. It was dark outside for most of that time. Awesome and the other kids were inside and outside. In the backyard, in the side yard, in the other side yard, in the front yard, in the driveway. On the back deck, on the front porch. Running through the trees in the front yard in the dark playing a variation of tag called Ghost in the Graveyard. Sitting in the den by the fireplace. Pretending to slay dragons in the backyard. Sitting around the firepit in the back yard talking. Sitting at outdoor tables eating. Sitting in the dining room talking. Standing around the food in the kitchen. Always somewhere different. And I was up and down and in and out and checking on and losing Awesome and finding Awesome. And asking if this person or that person had seen Awesome. And the adults who knew Awesome's situation also tried to help me keep track, as well as one of her peers. But the truth is, it's involving and distracting keeping track of a busy 12 year old<br />
<a href="https://3.bp.blogspot.com/-ZpTnVDcCTFc/WgvnTDxBVsI/AAAAAAAABEI/9L30tBrYRMIlwn-HCLOX1y__E6DyWXYuQCLcBGAs/s1600/2011-07-14%2B001%2B363.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://3.bp.blogspot.com/-ZpTnVDcCTFc/WgvnTDxBVsI/AAAAAAAABEI/9L30tBrYRMIlwn-HCLOX1y__E6DyWXYuQCLcBGAs/s400/2011-07-14%2B001%2B363.JPG" width="300" /></a> at a party when that party has lots of moving and shifting parts, lots of places to be, and lots of subgroups of people to be in, with, and among. Keeping track of Awesome quickly grows onerous and tiresome. And so, in the end, keeping track of Awesome was absolutely--as it should be--my responsibility and no one else's. And so, as I anticipated, I had to keep excusing myself from conversations and returning to them. And sometimes when I got tired of the dance of exiting and entering and excusing myself, I simply sat down alone and didn't engage for awhile. Which was OK. Quiet is good too.<br />
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As I watched Awesome running around, having fun with the dozen or so other kids, I was filled with joy for her. Her cheeks were red with the cold. She was running through the dark in the front yard, laughing. Many times I happened on her sitting with one or more girls, talking, smiling and giggling as she sipped hot apple juice. Laughing and having fun with the boys as they pretended to slay dragons over by the garage. It was beyond wonderful to watch. It was joy inspiring.<br />
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There were also moments of exasperation--like when I intercepted Awesome with a plate full of sausages (cured meats with nitrates cause seizures for her) and insisted she put them back before eating any of them. Or when I saw someone ladling up a mug of hot apple cider (which is not cider, but apple juice infused with a packet of powdered apple cider mix) for Awesome and I insisted that before she drink it, we read the ingredient list on the packet, only to find that the first ingredient was sugar. This meant she could not drink it and instead had to be content with a glass of apple juice heated in the microwave (even it's pretty high on the glycemic index, but there's only so many things in a row you can take away from your child). And so too her irritation with me was strong when I discovered just how little she'd eaten that evening (after asking her for a run down), and proceeded to ask her to eat more--more chicken, fruit, and other things she was allowed to have. But she didn't feel like eating; in fact, the truth really was that Awesome was having too much fun to care about the eating. As unpleasant as all these interactions over food were, the truth is that they were but tiny blips of unpleasantness in a vast sea of fun and enjoyment.<br />
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By the end of the evening, I was feeling ecstatic about how well the party had gone for Awesome. I felt like we'd pulled off a huge triumph. Yes, epilepsy parents are always happy about normal life when we can have it. I was also happy that we'd finally managed to make it to one of the homeschool group events for families. It also made me happy that Awesome was finally once again experiencing some of the joys of childhood. Joys that everyone should experience as a child. The joys of hours spent running and playing, visiting, laughing, and having free form fun with a group of kids And so, as we drove home in the dark at 9:30 PM, both Awesome and I were very happy. Awesome was chattering on about all the great things of the evening, and I was thinking about how our gamble had paid off handsomely. The cost of having to keep track of Awesome and worry about the what-if's were well worth the things that came to Awesome in return. We were both so, so happy.<br />
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Still there was this little matter of Awesome not having eaten enough that evening. We discussed it on the way home. Awesome acknowledged that she hadn't eaten much at the party--and that it was indeed problematic because it put her at higher risk of a convulsive seizure. She and I agreed that this situation needed to be remedied as soon as we got home.<br />
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With surprising cheerfulness, Awesome agreed to eat her leftovers from lunch (she'd had a light lunch too) and then to eat some wholegrain pancakes with fruit and a glass of milk, once we got home again. And so she did. And then she also took her bedtime dose of CBD. With Awesome's belly full, I heaved a sigh of relief believing that we'd safely dodged the seizure bullet that evening.<br />
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<a href="https://3.bp.blogspot.com/-Hn_WQQEcbKg/WgvqBXK4bUI/AAAAAAAABEs/h3_cM3tuR7YVwcrxyFlu5wTSoYVCBWhRgCLcBGAs/s1600/2011-07-14%2B001%2B220.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://3.bp.blogspot.com/-Hn_WQQEcbKg/WgvqBXK4bUI/AAAAAAAABEs/h3_cM3tuR7YVwcrxyFlu5wTSoYVCBWhRgCLcBGAs/s400/2011-07-14%2B001%2B220.JPG" width="300" /></a>As soon as Awesome was done eating, I declared it was bedtime. Awesome had brought home a cardboard dragon head from the party--she said it was her special token from the party--along with a feather from the hat of someone's costume. As soon as we'd come into our house, Awesome had run back to her bedroom to put the dragon head up on her wall. And now, as she was about to get ready for bed, she needed to get her clothes from her room. Still excited about the dragon head and really wanting me to see it on the wall, she asked me to come along to her bedroom to see it. Still riding on a high of happiness, I agreed to do so.<br />
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As we walked down the long hallway to her bedroom at the other end of the house, Awesome had a little seizure. I could tell because she was talking and the talking suddenly stopped mid sentence. And because, though she kept walking through the seizure, her pace changed--it slowed considerably and her head slumped slightly forward. The seizure was short. As soon as she was aware again, she readily acknowledged that ir had indeed been a little seizure. We continued on down the hallway. With that little seizure, her seizure count hit 13 for the day (she herself had counted 3 of those little seizures at the party that night). It was in the top of the low range. It had not been a stellar seizure day, but not a horrible one either. A higher count than I liked, but not in the bad or terrible range.<br />
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But when we got to her room, instead of turning aside to show me the dragon head as I thought she would, and instead of heading to her dresser to get her PJ's, Awesome oddly continued walking straight forward until she reached the window. And then, perplexingly, she deliberately planted one hand on the wall on one side of the window and one hand on the wall on the other side of the window, and bowing her head slightly, pressed her head into the closed window blinds. Huh? What was that about? Awesome can be quite the joker at times and so I waited for her to say or do something, but she didn't. And so I asked, "Awesome, what are you doing? Why are you doing that?"<br />
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And then, Awesome raised her head, and turned to the right as if she were turning around to look at me--which I thought she was, at first--but she didn't say anything at all. Which was also odd. And then suddenly, the turning of her head started to look all wrong, as did her eyes--which instead of looking at me, were looking upward to the right at the ceiling--and her trunk too as it kept turning to the right. And then, suddenly I realized, this was the start of a convulsive seizure!<br />
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Walking quickly over to her, I put my right arm firmly around her upper abdomen and with my left hand, I grabbed her right arm--which had gone up into the air--to help turn and guide her. And while she still had muscle tone and awareness enough to move her legs and walk and be led somewhere, before she collapsed, I quickly guided her to her bed. She started to loose the ability to stand just as we reached the bed. As she started to crumple, I was able to push her upper body onto the bed, and then lift her legs onto the bed as well. And not a moment too soon. She was now in the midst of a hard convulsive seizure--a tonic-clonic.</div>
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Awesome's brother Eli had come into town that evening, arriving at our house right after we got home from the party. He had eaten a couple of pancakes with Awesome in the kitchen. He was now sitting on the couch in the den at the other end of the house. I yelled as loudly as I could. Twice. Eli came running. Together we lifted Awesome further onto the bed, and while Eli attended to Awesome, I fumbled to get the emergency rescue medicine out of the bag I was wearing--and had been wearing all day. It was hard to get it into the outer pocket of her mouth--her mouth was a moving target. Still I managed it. About 30 seconds after I gave her the emergency CBD, the seizure began to subside. She'd had about a minute and a half of hard convulsing. But the seizure was not yet over. Another minute or two of a complex partial--altered consciousness with automatisms and hypersalivation--and Awesome finally closed her eyes signaling the end of the seizure. While Eli watched Awesome, I ran to the other end of the house to get the finger oximeter. Awesome's oxygenation was good--95% or above. And her heart rate was 130. She was breathing very heavily and rhythmically.<br />
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Awesome's eyes were closed only about 3 minutes. Suddenly they snapped open and she began to try to talk. Although her words were real words that were easily recognizable, the way she combined them made no sense whatsoever. She was speaking nonsense. Not a good sign. It meant she had significant expressive language impairments as a post-ictal symptom. This attempting to communicate by talking--and failing miserably (while periodically fading in and out of sleep) went on for maybe five minutes. And then suddenly she sat up more upright on one arm and began to look intensely at my arm and chest, and to start to use her index finger and then her other fingers, as if there were buttons on me that she was intently seeing and attempting to push. Could she be hallucinating? She'd never done this before. And just when I was starting to get concerned, I realized that her motions and gaze were exactly those that would go with staring at her laptop screen and trying to push the buttons on the keyboard or use the touchscreen. I realized that the words she was saying could be taken as relating at least tangentially to a computer. And so, I grabbed her poking fingers gently in my hand and simply asked her if she wanted her computer. She seemed to feel understood or satisfied--at least she made no more attempts to push buttons on me or anywhere else. I think that in her altered and impaired state of mind, she was somehow working out with muscle memory the idea of interaction with her laptop. It really wasn't like she was trying to communicate with us. It more like she was communicating the idea to herself. Trying to see through the fog of her brain at the moment, to the thing that she desired. At any rate, I felt less upset by her appearing to interact with something that wasn't there when I realized that this was what was happening. Her ability to both think and communicate were severely impaired and this was how her brain was trying to work to work its way back to the surface again.<br />
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"I think we need to wait a few more minutes on the computer, Awesome. When you think you're ready to try with Eli's help, we'll walk back to my bedroom. And then we'll get you your computer, OK?" She seemed satisfied with that plan. She became quiet and calm.<br />
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It didn't take long for Awesome's brain fog to clear. Within two minutes, Eli was helping Awesome down the hallway towards the bedroom. Steady steps interspersed with unsteady ones. They made it to the bedroom. With help, Awesome crawled onto the bed and we brought her her computer. Eli helped her get set up. And within 5 minutes, Awesome was negotiating the computer without any assistance at all.<br />
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But Awesome was totally exhausted from the seizure and the busy day. I brought her PJ's to her. I helped her dress. I excused her from all her usual bedtime personal care routines except brushing her teeth and taking her bedtime meds. When I gave her her bedtime meds, I saw that we had neglected to give Awesome her lunch meds--which included Zantac, biotin, and most importantly, guaifenesin (in a 600 mg timed release Mucinex tablet). In the shuffle of getting David packed up and off to the airport, she'd missed a medication that may have been important in keeping seizures at bay. I felt terrible about this. I wondered if she'd have had a seizure had it been given. We'd never know. Some part of me thinks guaifenesin makes a very positive difference; some other part of me doesn't believe it does anything at all. And that's a typical sort of situation parents of kids with intractable seizures find themselves in. Unsure of what, if anything, does anything at all. Is or isn't effective. Makes any difference whatsoever. <br />
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Once we were through our bedtime prep, Awesome feel asleep quickly; she slept well that night. For me, however, sleep did not come so easily. I lay awake for most of the night, tossing and turning, getting in and out of bed, all the while contemplating this seizure and its possible implications. I had no ready answers. Just questions and more questions. All too often epilepsy doesn't give answers. It leaves you hanging. Contemplating the puzzle. Of triggers. Of what is and isn't necessary or helpful. Of whether a treatment is or isn't helping. Of life. Of health. Of control. Of normal versus not so normal. Of what is possible and impossible. Of what is prudent and not so prudent. And wondering about your own assumptions. About context. About past. About present. About future. About life itself and just how close or far you are really standing to the edge of epilepsy's cliff. And how much margin you have or don't have. Those questions will have to remain unanswered in this post--as they were that night. And as they are and continue to be in real life with epilepsy.<br />
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Desireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.com2