Paying the Price of Attempting Normal

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.

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.

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.

*********************

However, October 31st still had another trick up its sleeve.  One that would help make up for Awesome's loss.

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.

And Reformation Day this year was quite a big deal.  A 500th Anniversary big deal.

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.

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.

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.

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.

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.

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....

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.

********************

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?

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.

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.

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.

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,
wants their mom as a constant tag-along?  And what mom wants to be a constant tag along to their nearly 13 year old?  And so, to some degree I would be relying on the other kids to keep Awesome safe during those few minutes between my checking on Awesome--though I would not inform them because I didn't want to saddle them with that responsibility.

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.

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.

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.

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.

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?

In many situations for many activities, the calculation would have come out differently.  I'd have just said no.

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. 

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. 

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!

*******************

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
 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.

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.

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.

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.

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.

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.

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.

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.

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?"

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!

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.

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.

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.

"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.

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.

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. 

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.