Looking back on what was undeniably a bad week, there were many elements I wasn’t feeling very good about. I was already feeling low myself, even before Schuyler’s Miracle League baseball situation went entirely off the rails. As is usually the case with youth sports, it happened for reasons that had nothing to do with the players but which ended up screwing things up for all the kids. Schuyler also had a small seizure, not a bad one but the first in many months, as far as we know. And of course, we’re preparing for the bad part of Schuyler’s IEP, the one that got kicked down the road until this week because of pieces that we objected to a few weeks ago. I have every reason to believe we’re going to object to them all over again on Wednesday.
So it wasn’t a great week. And as I said, I take a great many things for granted.
Until I received the email.
It wasn’t from anyone I knew very closely, and it wasn’t loaded with details so there’s no way to know what was missing from the story, what extenuating circumstances make this story different from my daughter’s. But it said enough. He was a little boy a couple of years younger than Schuyler with polymicrogyria, Schuyler’s monster. This boy had a history of small seizures that were identified as absence seizures in the email, but which sounded, judging from the aftereffects, like the partial complex seizures that Schuyler sometimes has, according to her neurologist. The boy had no history of grand mal seizures, not until the day last week when he had his first.
His first, and his last.
It’s easy to get lost in the world in which we live. It’s so easy to forget how quickly things can change. It’s not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child’s brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it’s grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today’s manageable monster may grow fierce and hungry in an instant.
Would we live our lives differently if we thought about those monsters all the time? I don’t know, and I’m not sure I like the sound of that life, the one lived under threat. But I imagine how we might behave if we really considered the impermanence of things, and if we considered the things that matter. Happiness, fulfillment, lives that thunder and shimmer and take our breaths away. And love, the kind that makes us whole.
You have to ask yourself important questions, in the face of the sudden and the monstrous. If you knew it would all end next week, in a quick and awful electrical storm, or because of a tragic and random accident, or in any of the million ways the universe has devised to devour us, what would you do with the ones you loved? How would you live?
And if you can, if it is within your power to do so, you live your life that way.