March 13, 2007
I was looking at my stats today and found this blog entry, in which a blogger dreamed that she came here and found my blog empty, except for a single word: "dead".
"I woke up crying," she wrote, "thinking Schuyler had her first big seizure and her little body couldn't handle it."
When I read that, I was stunned. I just sat here and looked at my screen silently for maybe a minute or two. I wasn't upset with the blogger; indeed, I'm touched that people care enough about Schuyler to allow her to get inside their heads and fuck up their dreams. And really, if something did happen to Schuyler, I'm not sure that I'd have the will to post much more than a single word. But in a single short entry, this blogger managed to land on my worst fear with both feet.
In my book, I quote Dr. William Dobyns as saying, "I can tell you I’ve only had two patients die from their seizures." He meant it to be comforting, I'm sure, but of course it wasn't. In my naivety, it hadn't really occurred to me that she could die from them.
But here's the thing. Schuyler hasn't had seizures, not a single one. According to Dobyns, they tend to manifest between the ages of six and ten, so she's just now entering the danger years, but I don't think she's ever had one, not even a small absence seizure. (When she was young, I thought she'd had them, but apparently they typically come in groups, not singly. According to Dr. Dobyns, Schuyler was probably just zoning out like little kids do. Well, little kids and me.) The odds are about 85-90% against her dodging seizures, but she's beaten the odds before.
So Schuyler goes through her life as happy as a butterfly, unaware or unconcerned about the thing that literally keeps me awake at night, this Sword of Damocles that she never notices but which I rarely take my eyes off of.
Julie feels the same way. We very rarely leave Schuyler with a babysitter, and never for long, in part because of our fear that it could happen, that first one could hit and Schuyler wouldn't be with her mother or her father or her teachers. It's silly, and we know it, but there it is. We don't even leave her with family very often. Schuyler is literally never alone, except when she sleeps. And I worry about it happening then.
People tell us that we should adopt Schuyler's carefree attitude. If she's not worried, why should we be? It has always felt to me, however, that her happiness has a price, and if we are to elevate her above fear and worry, we do so while standing knee-deep in it.
I love the person Schuyler is becoming. I love her fearlessness, and I love her punky attitude. I love that given a choice between girly pink and camouflage, she'll unhesitatingly wear both at the same time. Most of all, I love how she adapts.
We got a call from Schuyler's Box Class teacher today. The class was constructing sentences on their devices, and Schuyler was having a hard time finding the word "but". Impatient with the device's icon tutor, which shows the path to any word you type in, Schuyler stood up, laughing, and pointed to her ass. And then did a little "look at my ass" dance. She found her "but".
The biggest difference between Schuyler and her father? Her unflagging ability to take her monster and dress it up in clown clothes.