I had a bad week. I’m not going to go into the details of why, because they’re not really relevant here, and I do occasionally like to pretend I have a little privacy. What’s important is simply that there was something not so bad about the badness of this week. If that makes sense.
It was a bad week, but not because of my daughter’s disability.
It’s probably easy to imagine from the outside that being the parent of a child with a disability means a constant awareness of the specific challenges. Always being “on”, always thinking about it, ever vigilant. And I am all too aware that for many families, that’s exactly how it is. But the truth is, I spend the vast majority of my dad time as Schuyler’s father. When specific issues come up, then I become Disability Dad, I suppose. But really, most of the time, parenting Schuyler is much simpler, and much more personal. Honestly, I mostly think about it when I’m writing.
With Schuyler, the disability pieces become part of that parenting autopilot. When she’s unable to make herself understood clearly, we don’t suddenly start going down some communications checklist. It happens on the fly, and while it’s going on, our thoughts aren’t “Let us now begin the usual series of items we have learned in order to facilitate our child’s communication.” We just go into that place, casually and without changing the beats of the conversation. Sometimes, when I can’t understand Schuyler and I can feel her becoming frustrated, I’ll pretend to misunderstand her in a funny way. “I have a chicken on my head? What?” It cracks her up, diffuses the scene and slows everyone down enough to figure out what she’s saying.
When it happens, it doesn’t feel like an exercise in disability management. It’s just what you do when you’re in Schuyler’s life.
Looking back on a bad week usually means reflecting on what failure occurred to hand some victory, significant or otherwise, to Schuyler’s monster. Was it my failure? Julie’s? A teacher’s? Was it Schuyler’s failure, one of the ones that inevitably occur from time to time with anyone who has as many cards stacked against her as she does? I never feel quite as much like a disability parent as I do during that post-mortem, nor do I usually feel like such a fool and a travesty of fatherhood at very many other times, either. Bad days, bad weeks, they usually tend to end in a series of “I’ll do better next time” statements.
But in the awful week I just had, Schuyler became something else, the thing that she usually is for me, much more than I probably am for her. She became comfort. Refuge. Shelter from the storm. And as I reflect on the people in my life, the situations in which I can count on others and the ones in which I need to find a little GPS in my own soul to get out safely, as I ponder my own disposability in this world, it is to the quiet moments with Schuyler that I return. She knows it, too. In times like these, she is quick to take my hand, to lean over in the car and put her head on my shoulder. She has a sense of when I need love, and she has never failed me in that respect.
So despite the hardness of the week just past, my lingering feelings are of calm. My touchstone memories of the past few days are of watching television or playing Mariokart with Schuyler or walking the aisles at Toys R Us on a Saturday afternoon because, well, why not? It could have been a time of feeling alone and hurt and cast off. Instead, I spent the past several days playing with a nervous but happy baby chinchilla named Frida, and watching my little girl fall in love with her as well. Some of our quiet moments weren’t actually quiet at all, not in a traditional sense. Chill time with Schuyler can be remarkably chaotic.
But in the loud part of my soul, I am quiet when I’m with Schuyler. She settles the emotional hurricane with a laugh. She turns down the fires with the simple act of curling up next to her father on the couch, and with wide eyes and astonished hushed whispers as a little chinchilla sits in her outstretched palms.
It was a very bad week. But I wouldn’t trade its quiet ending for anything.
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