Beginnings of a Beautiful Becoming: Taking Responsibility in the Medical Realm

Despite the arrival of puberty, until very recently, Awesome's been a very young 12 year old.  More child than adolescent in most ways.  In wanting to stick very close.  In wanting to have things done for her instead of doing them for herself.  In not being concerned with her appearance.  In still possessing that matter-of-fact confidence of a younger child who isn't the least bit worried about what anyone thinks.  In still being very interested in childhood things: stuffed animals, toys, cartoons, etc.  In not being interested in adolescent things.  And in a myriad of other ways.

But recently, in the last few weeks, I've started to see the beginning of a shift.  It's a small one, but it's there, nevertheless.  And it's growing stronger and more pervasive--expanding into more and more areas of her life.   So far it's been a very positive shift--mostly in the form of a shift towards more independence and towards taking more responsibility.  Maybe I'll talk more about those other areas in other posts, but this one is about the changes we've seen recently in things medical.

In the medical realm, Awesome has actually started answering the questions doctors, nurses, and medical technicians direct at her instead of pretending she didn't hear them and looking at us like she wants us to rescue her from having to talk to them--looking at us if it's painful to have to interact with them. She's never wanted the doctors and nurses to talk directly to her; and she's never wanted to have to talk directly to them.

The truth is that when it's come to all things medical, Awesome has--until recently--simply wanted to check out.  To pretend that she wasn't there; to pretend that what was happening wasn't happening.  It was her coping mechanism. And because she was still a child emotionally and relationally; because she was still a child very stressed by all the day to day difficulties of living with epilepsy and epilepsy treatment; and because she was still a child very stressed by the medicalization that all this required, we've been willing to oblige.  We really haven't required her to interact any more than absolutely necessary.  Only enough not to be rude.

But recently we've started to see change in this area.

At our last appointment with Awesome's epileptologist, several weeks ago in early May, when the doctor first knocked on the door and came into the room, as is his usual custom, he said "Hello" to Awesome--and was startled to hear Awesome actually answer back with an energetic, friendly  "Hello!".  Simultaneously with this enthusiastic greeting, Awesome actually looked up from her book--full attention directed at him--and smiled at him.

To which he replied, "How are you?"

And even more surprising was Awesome's energetic, cheerful, and enthusiastic reply, "I'm great!  And how are you?"  With an emphasis on the you so that it was clear that Awesome really was expecting him to tell her how he was doing.  He looked startled and a little taken aback.

This was nothing like the usual interactions he'd had with Awesome in the past.  In similar situations before, she'd grudgingly acknowledged his hello with an answering hello offered in a guarded tone of voice that clearly did not encourage or invite further conversation.  Quite the opposite.  And in the past, after that greeting, she'd then proceeded to try to ignore him by continuing to look at her book or laptop.  Her message had been clear--please don't talk to me or make me talk to you.  And he had kindly given her the space she clearly wanted; he'd not made her interact any further by continuing to talk to her.  He'd turned his attention to talking to us parents, while Awesome went back to whatever she'd been reading or looking at--and pretended not to listen or care what was being said.

In the past, the closest the two--Awesome and her doctor--had come to interacting had been in early 2016, when he'd just suggested to us parents that he'd like "to schedule a hospital VEEG" and Awesome--who was busy reading a book with headphones on, listening to music--had fairly growled, "NO" in response.  It was so abrupt, gruff, and loud that we were all startled.  I found myself saying, "Awesome!"  And then being at a loss for words...  I was embarrassed and a little upset with her.  We might not require her to interact, but we did require that she not be rude.  There were ways she could have expressed her opinion in a polite, kind, and appropriate way.  This abrupt assertive insertion of herself into the conversation was, perhaps, a measure of both the passion of her reaction and also her discomfort in facing the whole medical world in which she found herself.    As we three adults sat there in the moment, stunned, trying to figure out what was what, Awesome had, gruffly and resolutely, added more information to make her meaning clear:  "No hospital."

To his credit, her doctor, recovering and breaking the awkwardness of the moment in a humorous but respectful way simply looked amused and said, "Or not." And then he had dropped the idea of a hospital EEG altogether and proceeded to schedule a non-hospital ambulatory EEG instead.

Awesome's epileptologist has been very kind and patient with Awesome. Awesome really hates the hospital based on her early life experiences.  Both her doctor and we have tried, as much as possible, to keep Awesome away from there unless absolutely necessary.

And so, as a consequence of her firmly saying no to the hospital, Awesome had an ambulatory EEG instead of a hospital VEEG in the spring of 2016.  She was 11 at the time.  We went into her epileptologist's office early on a Friday afternoon.  The EEG technician glued the electrode patches to Awesome's head; snapped the electrodes onto them; wrapped her head in gauze; wrapped the gazillion electrical wires coming from her head into a thick cord of gauze; plugged the wires into a recording unit; and gave us instructions on changing batteries once a day, pushing the seizure button, and keeping a log of activities, seizures, etc. during the EEG.  We'd then left the office to go home for the weekend.  On Monday in the early afternoon, we'd returned to the same office, where the EEG technician took back the recording unit and our notes, unwrapped all the gauze from Awesome's head, detached all the wires, took off all the electrodes, and sent us home.  It wasn't really over yet though, as any parent whose child has ever had an EEG can tell you.  I spent another hour plus--while Awesome sat captive--conditioning and combing the glue out of Awesome's hair strand by strand; and then Awesome showered, washing her hair twice to get out all the globs of conditioner I'd used.

At the next neurology appointment a couple of months after the ambulatory EEG, Awesome's epileptologist explained to us that her ambulatory EEG data had been problematic.  The correlation between the seizures we were seeing and what the EEG was showing was NOT there.  The EEG showed lots of seizures during times when we saw no seizures; and it showed no seizures when we saw lots of seizures.  He told us he would really like Awesome to have a hospital VEEG--video EEG--so he could correlate the EEG to what was happening clinically (outwardly).

As the epileptologist explained all this, Awesome had been listening while appearing not to listen.  This is generally the way Awesome has always handled neurology appointments--by listening to conversations while pretending not to listen to conversations.  Which is fine; it's how she deals with it all.  At any rate, when Awesome's doctor concluded by suggesting a hospital VEEG and we consented, because Awesome had listened and understood the reason why one was needed, she did not object to him scheduling it.  And so her first hospital VEEG was scheduled for early July 2016.  That she consented--or at least had not put up a huge objection, even if she didn't really like it--was already a little step in the right direction for maturation.

And she did do a fairly good job during that VEEG in July 2016.  48 hrs of being sequestered in a room; glued, wired and gauzed; being watched on video every second; and having every word recorded, is not an easy thing, however you slice it.   Awesome wasn't the happiest camper.  She brought a very clever and wry sense of humor--that helped her cope and helped keep us amused--to the whole procedure.  But on the second day in the middle of her afternoon energy slump, once she contemplated the fact she still had another overnight and another morning ahead of her, she did finally break down, complain, and have a good cry--before recovering and soldiering on.  There is nothing easy about epilepsy or what it requires of a child.

Awesome's attitude towards medical things wasn't helped by the difficulty of the last few years. Awesome has hated the whole scene and has had more than she can stand of it all--the seizures, the treatments for seizures, the medicalization, the close supervision, the special diet, the special routines.....just all of it.  Not that having had enough of it makes any difference at all.  It doesn't,  Intractable epilepsy just keeps coming at you.  Like the Energizer Bunny.  And so Awesome arrived in spring 2017, not only irritated with it all, but pretty much exhausted too--physically, emotionally, and in every way.

Considering all this, seeing Awesome, just a few months out from all this, start to rise to the challenge of dealing with medical things is nothing short of amazing.  And so it is that I was really impressed with Awesome two weeks ago when she had yet another doctor's visit.  This one, with her pediatrician.  And handled it all with new grace and maturity.

Her pediatrician--a woman that Awesome really likes--had walked in, and--without looking up from her papers--had asked, "So, what's up?"  I looked up at Awesome sitting on the exam table; and Awesome--at the same time--looked down at me sitting on my chair.  In that instant, our eyes met, and wordlessly Awesome conveyed to me that she'd handle this herself.  Without me.  Wordlessly I'd willingly and respectfully--even happily--agreed.  And so I busied myself with keeping my mouth shut while Awesome paused for a moment, took a deep breath, and as her pediatrician looked up at her, launched into telling the doctor what had brought us there that day and what her own symptoms were--in detail.   I was so proud of her!

As soon as I saw this new willingness to speak for herself and to explain to the pediatrician her situation as she saw it, I very deliberately decided to continue to hold my tongue.  To not offer answers if Awesome took time to think before answering her doctor's additional questions.  To not interrupt to add details, but to wait until the interaction was over to offer other information that might be important--and only to add it if I really thought it was very important.  To not reinterpret Awesome's words.  But really to just be quiet, try not to say anything, and to watch in wonder the magic of Awesome starting to speak for herself in the medical arena.  If you knew Awesome and how she's dealt with--or failed to deal with--medical interactions in the past, you'd know what a big step this is.  The first step, hopefully, in the process of Awesome owning more and more of her own medical care.

Right after seeing the doctor, Awesome was sent for a blood draw.  We walked down to the office lab together.  Having seen the competency to speak for herself and the confidence Awesome had just displayed with the doctor, I decided to make myself equally scarce in the lab unless Awesome asked me for help.  When the kind, attentive lab technician walked up and introduced herself and started asking questions, I slipped unobtrusively into a chair.  I kept my mouth shut--while Awesome talked to the lab tech.  I was determined to have Awesome do as much for herself in a medical setting as she was willing to do.  Which turned out to be everything that was needed!  Awesome interacted with the lab technician.  Awesome answered questions.  Awesome dealt with the blood draw procedure without the fear I'd seen just a few months earlier--and without any help or comfort from me.  She chatted with the lab technician about past blood draws as the technician inserted the butterfly needle into her arm.  No struggle.  No flinching.  No shirking or drama.  And I simply sat quietly behind the technician as if I weren't really there.  Not needed.  Awesome could have done it all without me!

This is a such a huge change from last year--and even earlier this year in mid-spring--when Awesome was a scared, irritated, upset, emotional mess for the many blood draws she'd had.  Blood draws for her Pediatric GI, Epileptologist, Pediatric Immunologist, and for her Medical Geneticist.  Even two to six months earlier, she'd complained bitterly.  She'd needed a couple of stuffed animals as well as my hand to squeeze, just to get through these blood draws.  She'd looked to me expectantly; she was fearful and needed reassurance.  She had complained bitterly about how much she hated blood draws; and blown off emotional steam complaining angrily about how "they" were torturing children and how she wasn't going to have any blood left for herself. (This was, of course, hyperbole.  Awesome knew very well, that they were taking a small amount of her blood.  It was again, her way of coping.)  And finally, she'd gotten so flustered on one of those occasions (drawing blood for the Pediatric Immunologist) that she'd turned white and nearly fainted so the technician had made her lie down on the bed in the room until her color came back.  And made her eat and drink before they'd let her leave.

And now here she was a few months later, handling the whole blood draw thing with both grace and maturity.  Without complaint.  Without drama.  Handling it all--at 12 years old--as if she were an adult and not a child.

There's something so breathtakingly beautiful when you see your child start to reach for these little bits of independence and take responsibility for herself..  It's very much like watching a baby take her very first steps.  You know then as she--at first falteringly--and then more and more steadily and confidently, takes those momentous first steps, that your world is in the process of changing.  And changing dramatically.  That you are leaving a part of childhood behind--which is always a little sad. Because it's a chapter that's closing.  A chapter that has now been completely written and is finished because it's been all lived out.  A chapter that has suddenly become the past.

But you also know that your child is entering a whole new exciting stage of childhood--and of life.  A new stage of life full of mastering amazing new skills that will ultimately expand and open her world in stupendous ways.  To exciting new possibilities.  And beautiful new capabilities.

Another door is in the process of opening.  A door that will let in new light.  An open door that will allow her to step onto a path that will take her to amazing places.  That will lead to her exploring the world.  And to her becoming who she is and was always meant to be.

We are just guardians and caretakers of these new and beautiful lives.  Because children are like new little plants growing.  Unfurling before us.  Tender and fragile at first, needing lots of care and nurture.  Lots of shelter.  And then they are growing--not just bigger and taller, but also stronger, sturdier, and more resilient--able to better withstand more of the world's stresses.  To stand tall and straight even when the stormy winds blow and beat against them.  And then finally they are budding and blossoming before you in all their breath-taking beauty and glory.

One of the joys of life is watching this growing and unfolding of a child becoming.  A child strengthening and growing into who she or he is.  And when that beautiful growing, unfolding, strengthening, and becoming is against the back-drop of the stress, strain, and challenge that is intractable epilepsy, the process is all the more miraculous; the beauty is all the more breath-taking.  It's Awesome.