There are days when being a special needs parent feels a bit like you’re swimming in water that is ever-so-slightly over your head, your face breaking the surface occasionally as you gulp down just enough air to keep going. And then there are the days when it feels as if you are sitting on the very bottom of the sea next to some ancient and forgotten shipwreck, looking up at the dim flicker of sunlight filtering down from above and wondering, not for the first time, just exactly how the hell you came to be in such a place.
Yesterday was a bad day.
The details aren’t mine to share. They belong to Schuyler and the small circle of friends and family who look out for her and care for her and love her far more than she realizes or believes. But Schuyler had a rough morning, and we’re still trying to figure out what exactly happened. Just about the only thing we believe with much certainty was that she had a seizure at some point, a bad one this time, and whatever badness was going to go down anyway was fed by its rocket fuel of confusion and sadness. But I can tell you it was a bad morning. That much I can share.
It can’t be simple, processing the world through Schuyler’s imperfect but beautiful brain. Our role as her parents has always been to help her digest her environment, to make sense of it as much as we can and help her build her own little house in that world. I know one thing that has been bothering her this week, and that is the IEP meeting we had on Monday. Schuyler is seventeen, a junior in high school, and much of her IEP meeting revolved around the Great and Terrible Question. What next? What will Schuyler’s adult life look like?
Schuyler’s world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn’t quite the same as that in which the rest of us live. She’s got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there’ll be no shipwreck this time.
I’ll tell you how I feel in those moments, although I’m sure you already know. I feel like a failure. I feel like the role of Schuyler’s father is too large for me, too complex, and I’m woefully underqualified for the position. I should have answers ready when things get rough. I should have the foresight to see those problems before we get to them and steer clear. I should know what to say to her when she’s in pain, I should be able to explain the world to her in a way that doesn’t leave her anxious about the future. I’m too small, too weak, too emotionally fraught.
I feel like a fraud in those moments. I feel like the water is far, far over my head. I feel most of all as if I’ve failed her far too many times.
The thing I’ve learned over the years through conversations with other special needs parents is exactly the one you’d think. I’m not the only one. And I’ve heard those same sentiments coming from people who really are excellent parents. I just can’t do this today. I don’t know what the hell I’m doing.
I don’t know exactly where I’m going with this, because there’s no gained wisdom at the end of this. I’ll get up today and try again, as will Schuyler. We’ll look at the world that beat her yesterday, and we’ll stubbornly force it to try its very worst all over again today. Like Captain America, in our own peculiar way. “I could do this all day.”
Sometimes that really is the best we can do. And maybe it’ll be enough in the end. I think it might.
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