October 25, 2011


Schuyler's monster stirs at times, like Schuyler herself in the middle of the night. We wait, and we watch, and we hope. We don't pray, because that's not who we are, but our hope feels a little like prayer. "Not yet," we ask the Universe. "Give her some more time to just be a kid."

In the midst of her busy middle school life, Schuyler is pestered by her monster. We think she may have had a seizure at school last week. And she had another choking incident recently, a rare event that probably only repeats itself at all because of her complacency, and ours. I can remember choking incidents from when she was much younger, and how upset we all became. Now when they happen, we keep our emotions in check, Julie and I. And Schuyler, too. Irritation, but no tears. She makes adjustments, as do we.

So it goes.

A few nights ago, a storm moved in, all flashing lightning and rolling thunder, and even a little hail. I was the only one still awake, so I went into Schuyler's room to check on her. She was fine, of course; Schuyler has inherited my love of inclement weather. She was awake, quietly watching the storm from bed. I asked her if she was okay, and she asked me to stay. We "oo"'d and "wow"'d for a while; she fell asleep soon after.

It was the first time I'd tried to sleep next to Schuyler in a long time, and certainly the first time since her last EEG. You may remember that the results were inconclusive, but of particular interest was this finding:

Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)

These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.

Lay next to Schuyler while she sleeps and you'll experience what her sleeping world is like, or at least you'll understand how unquiet that world must be. She moves, not constantly but with a startling regularity. Schuyler doesn't wake up, but I can't imagine her sleep is very restive. She doesn't seem particularly tired the next day, which is probably due in part to the fact that we make sure she gets nine hours of sleep every night. But I can't help but think that her body has adjusted to a life of Brain Pops, of tossing and twitching and kicking. I couldn't last more than about twenty minutes before I had to quietly sneak away. Schuyler never awoke. But she never grew still, either.

Schuyler lives a life of small compromises. She makes dietary choices because she knows that the wrong choice could kill her, but she does so casually, matter-of-factly, without drama. She drools sometimes, which is hardly a secret, so she wears wristbands everywhere she goes and wipes her mouth discreetly. But she chooses the kinds of bands that are worn by skaters and roller derby girls and makes it part of the "I'm a punky but regular girl" image she strives to project. Schuyler has a tooth that is seriously out of alignment, but braces would cause her drooling to go into overdrive, so we all choose the lesser of two social deaths. She proudly calls it her fang, without much in the way of self-consciousness.

Schuyler adjusts to her reality, the one with the monster, and the world tries its lumbering, ignorant best to do the same. Julie and I live with our fear for Schuyler's future and do everything we can to help her navigate the most treacherous waters. I'm learning to identify the issues and people who are important for Schuyler and this family. I'm learning to teach Schuyler to advocate for herself while simultaneously trying to protect her from self-serving voices that would use her story to further their own agendas. I'm adjusting to a world in which Schuyler's independence is growing, particularly where that independence concerns her relationship with Julie, and with me.

The world changes. Schuyler changes, and at the same time she doesn't. She remains the weirdest and most wonderful person I've ever known. I adapt to her changes, some of which are monster-driven and others just part of her transition from Little Girl to Future Schuyler, and of course the hardest are the ones that are both. Schuyler's brain is like no other in the world, and it is guiding her in ways that no one can predict. That's scary for us, and sometimes, she admits, for Schuyler. But I'd be lying if I denied that it's also breathtaking to behold, or that it's the greatest privilege of my life to be her father.

Schuyler's not like me, and she's certainly not like you. But if the world can adjust to the scary possibilities, of which there are many, it will be rewarded by the simple fact of her existence. I have been thus rewarded. And I will continue to be, in ways that neither you nor I can even begin to imagine.


richandangi said...

I have been following your family for a long time now. I just wanted to say that your entries into this blog make me feel like I am standing right beside you, experiencing the awesomeness of Schuyler with Julie and you. What a priveledge it would be to know that sweet little missy. You are doing a great job as parents. She couldn't ask for anyone better to raise her.

Penny said...

This is just wonderful Rob. The grandeur with which you approach being her parent is wonderful. There is but one Schuyler. There is but one you, being her father. Thanks for writing this, Rob.

I have a Maddie at home and it is the greatest joy of my life to have her as mine, in all her secret and strange and wonderful ways.

Elizabeth said...

I love how Penny described "the grandeur with which you approach being her parent." Yes. That's exactly it. This is another beautiful and incredibly interesting post -- I sure hope that the seizures remain at bay.

Kim Wombles said...

Beautiful post, Rob.

Henry Elliss said...

I like "brain pops" - I admire a family who can use silly names for things in the face of an otherwise pretty intense experience :)

David said...

Just finished the book. Thank you.

sarawr said...

I've been reading. Increasingly, in the past year or so, I've started having thoughts like, "Isn't she old enough to stop [x]?" Or, "Hasn't this gone on long enough for [y]?"

Every time I end up at something like... sure, maybe she's old enough and this has gone on long enough, but thank GOD you're still narrating the bits you are. I always initially think the hard part is over; I always and almost immediately realize that this is the part that's harder. My child doesn't have a monster that we know of, but I know that the teen years bring monsters of their own -- and I'm so glad Schuyler and you are still here, teaching me about breeds of monsters, similarities and differences.

luke said...

please keep writing rob, it helps, thank you