It came this weekend like it usually does, as a Facebook status update, between the funny cat videos and the Donald Trump outrage. When it shows up, it might be posted on one of the support pages for polymicrogyria, or it could come as a note from another PMG parent. There’s no warning, nothing to differentiate it from anything else on Facebook. Just a note, usually a request for prayer, because one of our own, one of our PMG kids, is in the hospital. Another of our very exclusive club is struggling. (Sometimes it’s a lot worse than that.) I read the note, and I feel that squeeze, the one in the middle of who I am as a person, in that place that has limits as to what I think I could handle, limits that I hope are never tested because I’m pretty sure I know already.
I don’t want to talk much about that fear, not while one of our sweet kids is in peril. It’s kind of like talking about scary things in the middle of the day versus in the dark of night. I’m not sure what I can handle, but I’m pretty sure that’s not on the list. Schuyler is a healthy kid, and right now, I pretend that will protect her. Watching another one of our kids in trouble is hard; watching a family trying to hold itself together is heartbreaking.
The thing I feel every time this happens, which is rare but not nearly rare enough, is a kind of quiet gratitude for the Internet. I don’t always feel so warmly about it, this place where humanity is so easily discarded and shame and compassion can seem so fleeting. But for families of kids with disabilities, particularly those that are perhaps more mysterious and less common, the Internet shrinks the world, makes it feel more manageable when dark days arrive. We work so hard just to feel like actual human families, we strive to build that necessary fiction that we’re just like everyone else, and that our fears and our anxieties and our days of failure are like anyone else’s. We talk about our kids trying to pass for neurotypical, but honestly, we do it, too, in our own way.
When we can’t pass and disappear into the world of the typical, the internet communities we build help us to feel as if in this smaller, more self-selecting world we’ve assembled, we’re part of a neighborhood, and when someone is in trouble, it can sometimes seem like that family lives just down the street, and we were informed by a neighbor walking by. It is, as I said, a fiction, but it’s one of the more valuable ones we have.
As I mentioned previously, Schuyler and I recently gave a presentation at the university where I work, and a good number of my co-workers showed up, including my new boss. It meant a lot to us, but it also served a practical purpose. Families like ours live different lives where going to our jobs sometimes feels like being a child and dressing up. When we were kids, we pretended to be cowboys. Now we pretend that a bad day at work is even in the same universe as a bad day at home. I didn’t know how to have that conversation with my co-workers. Now, I don’t have to. Like other parents of kids with disabilities, I don’t want to admit that every once in a while I need my workplace to be a little gentle with me, because that’s not very professional. But I might still require it, and now they know.
As parents of these kids, we go through the world wanting a lot of contradictory things. We don’t want pity, but we’d like a bit of wiggle room. We don’t want to be told that we’re special inspirational parents that do the work of the angels, but we do like for our friends and families and co-workers and neighbors and just our fellow citizens to understand that this isn’t easy, and we’re not always okay.
We can’t usually get those things. But when we’re in trouble, when our own days darken, our small worlds of support become crucial. Some of us are hopeful believers inspired by the power of prayer, and others of us are pragmatic and steely. I suppose I’m agnostic in this area, too, and so perhaps I fall in the middle. When the call goes out in our small, vulnerable world, those of us parenting these extraordinary kids hear it, and we respond in all our different ways. For my part, I don’t directly believe in the power of prayer, although I definitely value the positive energy that we send out to each other, so I don’t know, perhaps that counts. I can’t say whether or not or compassion and our caring thoughts have power, any more than I can say that my own daughter benefits from that wave of good humanity when it is directed her way.
I don’t know if the thrumming energy of our small world helps. I only know how very much I hope it does.
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