When I write about Schuyler, I cover the hard stuff, mostly. I try to write about being hopeful, too, because I honestly feel like I am nothing if not wildly hopeful for her. I’m not sure how any parent could raise a kid with a disability in this society otherwise. But you know how it is. No one ever reports on the nice, sunny days or the airplanes that land safely at the airport. But I guess occasionally I should talk about the quiet hope, because it’s the engine that drives Schuyler’s world, and of course mine.
Yesterday was Monster Day. For those of you who don’t follow Schuyler’s every creative whim, she created this alternate holiday a few years ago after a classmate teased her about not being allowed to celebrate Easter because we’re not Christians. Schuyler decided it would be a good day to honor monsters, because she loves them so, and when she wrote about it, she carefully pointed out that if you ARE a Christian but you want to celebrate Monster Day, you can do it on Saturday instead. “Monster Day is for everyone!” she wrote, because she’s a better person than anyone else I know, and a much better one than myself.
So we spent Saturday running around preparing for Monster Day, buying an ice cream cake and tiny plastic monsters with which to decorate it. It wasn’t much, but it was hers without condition. Like so much in her life, Schuyler created an alternate path where no satisfying one existed.
Aside from a running conversation about monsters and their relative merits, this past week has been relaxed, which I think we needed. Schuyler put away the disappointment of being denied permission to try for a driver’s license, and she has yet to begin stressing about the three-day ambulatory EEG she’ll begin this Friday. We’ve spent an unusual amount of time just being quiet together, sitting and reading or watching television or building worlds on her favorite video game. It’s been good for us both, I know. In addition to the ever-present concerns for Schuyler, my work situation has been uncertain and I’ve felt wildly off my game, like a car making a turn and tipping dangerously onto two wheels. I think Schuyler senses this; she expresses concern more often in these times, and hugs and kisses me a little more frequently. Her superpower has always been empathy.
Things have been anxious in the recent past. And things will get stressful again soon enough, with her getting wired up (just in time to see the nice boy at her soccer game with whom she appears to be hitting it off, which is not my tale to tell but let me just say OH MY GOD, PLEASE LET THIS ULTIMATELY TURN OUT TO BE A HAPPY STORY) and with all the uncertainty of changing schools again next semester and a change in her seizure meds and all the million and one reasons that it’s hard to be a sixteen year-old girl even without a disability.
This week has provided a short respite, a brief interlude in the eye of the hurricane. We’ve been doing this now for a long time, officially for almost thirteen years but of course a little longer than that. I’ve learned a lot in that time, usually the hard way, but there’s a lesson I keep coming back to. Hold on to the quiet interludes, the ones that feel carefree even if they’re simply pauses.
Remember the hope I was talking about earlier? It lives there, in the gentle, uneventful moments. I’ve not learned to let go of my anxiety then, not completely, but I’m getting better at it. I truly am.
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