I can’t speak for any other special needs parents. That’s actually true of everything I write. For myself, I can only say that ten years after Schuyler’s diagnosis, I sometimes drop my guard.
When I see Schuyler sitting in her room on her bed, her gangly legs pulled up and her headphones on as she watches movies or listens to music on her iPad, it’s easy to see a typical teenager, and to forget why she has the iPad in the first place. She’s just a thirteen year-old girl creating her own private space in a swirl of pop culture. She’s not that little girl who existed mostly in a world far beyond our understanding, one with so few communications bridges. Things are different now. It’s easy to forget that they’re not entirely so.
When we visit Schuyler at school for lunch at her request every so often, we see how many people greet her, give her high fives, touch base with her. We meet new friends, including a neurotypical girl who seems to be in it for a longer haul than most. When she says she’s still hungry after her lunch, we send her through the line with a few dollars, and she comes back with a little box of chicken, purchased by herself with no problem, like any other kid. Later, at a fast food place at dinner, she does the same thing at the counter, using her iPad to ask for what she needs, her money in hand. The kid at the counter is impressed; he gives her free food.
Last weekend, we chased hot air balloons from the local balloon festival like we do every year. Dozens of them launch from a giant field at the local community college, and we drive after them, watching for them to land in vacant lots and on playgrounds and football fields, and even (like this year) in residential areas, surprising homeowners by dropping unceremoniously into their front yards. Every year, we arrive as the wicker gondolas touch down and the giant balloons rapidly deflate, and Schuyler runs over to join other kids in helping to squeeze the air out of the balloons and pack them up.
This year, standing on a middle school soccer field next to a felled hot air balloon, Schuyler met a boy her age, a tall, shy, ginger-haired football player from the school that was playing hers in two days. He promised to watch for her as she cheered; she giggled and played shy and tormented him with her silence. It was easy to forget for a moment why she wasn’t answering his questions, and to overlook the secret that she was gently holding back from him.
On Tuesdays, Schuyler cheers with her cheerleading squad at the eighth grade football games, and you have to watch carefully to see that she’s not actually saying the cheers, but is mostly just doing the routines. Most people don’t look that closely. She has a few friends in the squad, while other girls spin off into other, more popular cliques, but this isn’t anything that isn’t happening in a thousand other cheerleading squads in America. When Schuyler is cheering, it is very easy to forget.
I can remember back when it felt like we’d never be able to forget, even for a moment, what hung over her head. But time passes, Schuyler grows and becomes more adept at moving through this world, and so her reality is less front and center. Her brain is so creative and effective in its rewiring and rerouting that it’s easy to forget how profoundly malformed it is, anywhere from sixty to seventy-five percent of it affected by her polymicrogyria. It’s easy to fall into a place where we simply assume that this brain, broken and clouded but working with startling effectiveness, will always function with such inexplicable success. Schuyler’s brain hasn’t failed her yet. It hasn’t experienced the kind of seizures that her doctors expected, none of the grand mal variety that were supposed to lay her low years ago. It’s very easy, at least subconsciously, to confuse her current fortune with a guarantee.
Then, like today, I’ll see a notice, usually on a mailing list for parents of kids with polymicrogyria, sometimes on Facebook. Today it was a baby, robbed at the very beginning of life, but sometimes it’s a teenager, and occasionally it’s a teenager who until that day had never suffered a serious seizure, or had ever had a life-threatening choking incident. Sometimes the first such misadventure is also the last, the fatal one. Sometimes kids like Schuyler just die, as if their luck simply ran out.
In those moments, as I read about another child taken by the monster that has so far treated my little girl more gently than it could have, I hear the universe whispering in my ear. Just a simple reminder.
“Don’t get complacent,” it says. “Don’t take any of this for granted.”
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