We took Schuyler to see The Fault in Our Stars over the weekend, mostly as an antidote to the double dose of superheroes and YA dystopia that she’d picked from the RedBox the day before. As she gets older, Schuyler’s taste in movies and television is changing, but she still gravitates to a certain kind of science fiction and fantasy genre where teenagers solve problems by shooting magical blue stuff out of their fingertips. It could be worse, I know; there are plenty of fictional teenagers on tv and in movies who are navigating their worlds with mean-spirited snark and bottomless credit cards. But a reality-based love story about kids not much older than herself seemed like a good change of pace.
Schuyler processes sadness incrementally, and the movie gave her a lot to deal with, so I’m not surprised that she’s still asking questions a day later. Schuyler is openly discussing romantic attractions now, albeit hesitantly, and we talk with her about what her dating life might look like and how it’s appropriate at her age to start thinking about how to proceed.
In the past, her taste has run distressingly towards the Big Man on Campus type, but lately she seems to be noticing boys like herself, particularly ones she knows from Miracle League. As she grows older, she’s integrating the diverse world of disabilities into her own world view in ways that are beyond the philosophical. She’s carving out as large of a place in the typical world as she can, but she’s doing so from a position inside a comfort zone that she does not occupy alone. As she grows older and more independent, this will no doubt continue apace, and that is a very, very good thing.
Watching The Fault in Our Stars gave her another perspective on how that might look, albeit from a place of terminal illness rather than developmental disability. But then, it’s important to remember that hers is an unpredictable monster, and that it largely lurks in one world but steps purposely into that lethal other realm without much warning. The rude interruption of death into her world is something she’s been largely spared, although her classmates have provided a close call or two over the years.
Following the polymicrogyria community over the years has meant watching kids die. There’s not an easy way to say that, and as a parent, there’s certainly not an easy way to process it. Kids Schuyler’s age succumb to seizures, some of them to seizures that had previously been gentle or even nonexistent, and while we don’t worry about Schuyler the way we once did, we’d be foolish to think she’s out of danger. Her meds have diminished the frequency and intensity of her seizures, but them haven’t eliminated them.
Last week, Schuyler paused on the soccer field to sign to us that she thought she’d just had a seizure, and for a moment, my mind conjured up that awful little mental movie, the one where she falls to the ground and never gets back up. And it’s ridiculous to do that, but it’s always there, that possibility.
We watched the parents in The Fault in Our Stars fumble and eventually work through to a place where they could function all the way to that awful, eventual end. It was rough to watch because like most parents of kids with potentially lethal disabilities, we’ve imagined what that world might look like. Not often, because Schuyler’s condition will almost certainly spare her, but often enough.
The one thing we’ve never talked with to Schuyler about polymicrogyria is the fact that there’s a very small chance it could kill her. I don’t think we ever really made a conscious choice not to, and I think she’s figured out that seizures could be serious enough to come to some hard conclusions on her own. I guess it took seeing this movie to spark that conversation, and when it came up yesterday as we sat at the library, it was with a minimum of drama.
“Daddy?” she said, looking up from the Scott Pilgrim book she’d grabbed off the shelf. “I don’t want my little monster to get mad at me and make me die.”
“Are you thinking about the movie last night?” I asked. She nodded.
And so we had the conversation, the one that is probably not relevant to her directly but which will almost certainly touch on someone she knows and even someone she loves. It was a short conversation, reassuring but real, and I’m sure it won’t be the last.
Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don’t discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn’t eclipse Life, and the days we get with our kids shouldn’t be entirely stained by our anxiety for the days we lose.
Schuyler lives her life for now, not tomorrow, and while I realize that’s largely the product of her age, I hope it’s something she never lets go of entirely. I envy the way she devours her days and her experiences, as if they might be her very last and at the same time like they will never come to an end.
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