The number of things for which I have to be grateful to Schuyler is probably not one I could ever even come close to formulating. She’s changed me for the better in more ways than I’ve probably even realized. She’s awakened a level of compassion that I didn’t know I possessed, and she’s taught me about what exactly it really means to be human. But the thing I think I appreciate the most today is her ability to share one of her most valuable resources with me: her seemingly inexhaustible sense of wonder.
I must confess, my own appreciation of the wonders of this world have been strained from time to time, particularly where navigating its complicated pathways with Schuyler is concerned. Wonder, and even my faith in humanity, these are sometimes in short supply for me. Sometimes I find myself withdrawing. Schuyler has been the alleviating factor for me. She’s been the balm for my burned heart, again and again. Schuyler trusts people, again and again and again, and I always want to pull her back, because I know they’ll let her down. Sometimes they do. Often they do, but she moves on, sometimes through tears and other times simply after a shrug.
One of my jobs as Schuyler’s father is to try my hardest to anticipate the obstacles and the dark corners so that I can help her avoid them. It’s a fool’s errand, of course. I’m not smart enough, or clairvoyant enough, perhaps, to see the hard things that await her, or to avoid them even if I do. After over a year’s absence through medication, it appears that Schuyler’s seizures may be returning, and this time with new, as yet unidentified triggers. That particular monster, the one that devours polymicrogyria kids like her with occasional but regular timing, it might just be back. It’s my worst fear; every time I find out about another PMG child who has succumbed to seizures, I feel that shadow pass over us. If it’s my job to protect Schuyler, in that respect I fail her every time her brain begins misfiring. Sometimes the distance between wonder and terror is short, and crossed in an instant.
As has always been the case, however, Schuyler doesn’t expend much energy worrying about all that. She still sees wonder in the world around her. Her universe remains a place crammed with possibilities. She never really talks about her seizures, and takes her anti-seizure medication dutifully, but if we go somewhere and she realizes that she’s forgotten to take her evening dose, her concern is very real, not quite panic but something very close to it. Schuyler understands the consequences, and when her anxiety manifests itself, I occasionally feel guilty for the fear she channels that is probably mostly mine. But most of the time, she’s unmoved, and unworried. If seizures are her Sword of Damocles, she defeats it by almost never looking up.
Last night, like everyone else lucky enough to have clear skies, we watched the rare display of a supermoon and a full lunar eclipse at the same time. As far as excitement goes, it fell short of, say, a lightsaber duel or an airplane race, and yet she loved it. She theorized that if she became a werewolf, her newly dyed hair would mean that she would be a blonde werewolf. As the moon disappeared and then shifted red, she watched with amazement. This was an unexpected experience, and those aren’t always a good thing for kids like Schuyler. But to her, it was another gift from the universe. If I perceive that universe as sometimes cruel and sharp, Schuyler simply recognizes it as a fount of surprise and wonder.
It’s not that Schuyler doesn’t get the science behind a lunar eclipse. She understood the explanation. For her, the wonder of the thing is all about the possibilities. Not just planets moving through predictable orbits and mathematical eventualities, but a world of blood moons and supermoons and werewolves and magic. The world is a mysterious place, for Schuyler most of all sometimes. It’s a place where a lot doesn’t make sense. On top of that, Schuyler knows that she’s rocketing towards a future that will often be confusing and even dangerous.
But it’s also a world of wonder. And if she can stride forward into it with her own sense of the impossible made real and the beautiful laid before her awaiting discovery, then I’m game for it, too.
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