The Big Bad

Recently, I had a discussion with someone online about The Holland Thing. If you are reading this, here on a special needs support site, then I would be shocked if I even had to include a link to explain exactly what I’m talking about when I say “The Holland Thing”. (Okay, fine. Here you go.)

The short short version of the essay titled “Welcome to Holland” posits that discovering you have a special needs child is like getting on a plane bound for beautiful, sunny Italy but landing in Holland instead. At first, you’re disappointed because all your friends went to Italy and that’s what all your own expectations were based on, but soon you learn to appreciate Holland for the swell place that it is. (Legal pot and hookers probably help.)

This is a topic that has previously been talked to death. I won’t delve too deeply into it, but the similarly short short version of many parents’ rejection of The Holland Thing is that for many of us, perhaps even most, having a child with a disability isn’t just different. It brings its own element of chaos and uncertainty and pain. Our kids aren’t just different. They aren’t just neurodiverse. Our plane didn’t land someplace charming.

Our possible world contains some scary things indeed. Including the scariest, the one possible outcome that keeps us up late most of all. Of all the things that might befall our children, from developmental delay to social awkwardness to persistent non-verbalism to physical impairment, there’s that one that we fear the most, the one that involves burying our children. The Big Bad.

“Welcome to Somalia”, perhaps.

For some parents, the Big Bad lurks around the corner, very close indeed. For others like myself, it is a more remote possibility. For some, it is perhaps even inevitable. But for those of us who fight off the Big Bad, either as an active threat or just a possibility to scare the shit out of us every day forever, the idea of celebrating our child’s difference is… complicated.

Schuyler’s brain presents an enigmatic and wonderful landscape. Even as she moves more and more into our world and out of that internal kingdom where she spent so much of her childhood, she is still largely a mystery. I adore that mystery; exploring it with her is the singular joy of my life. But there’s danger there, too. Danger to her, which of course means danger to all who love her and whose lives would become unbearably empty and grey without her.

Recently, my Google alert for “polymicrogyria” sent me a link to a story that mentioned a boy who died as a result of his polymicrogyria at the age of thirteen. I confess, it shook me up. Most kids whose PMG proves to be fatal succumb at a very early age, usually from hard seizures. But here it was, a reminder that Schuyler’s own monster could very well be the Big Bad. Probably not, but if you’re a parent, you’ll understand just how very little comfort “probably not” can bring.

So we celebrate the child we have, and we do so without reservation, without an asterisk or a qualification. But we don’t let ourselves buy into a pretty lie, one which suggests that gentle words or peppy cheerleading or the niceness of a figurative Holland will protect our children if the Big Bad decides to visit.

And yet. We stand, and we love, and we fight when we can. I’ve written before that special needs parents take up rubber swords against the monsters if that’s all we have. And we do so not because we are brave or special or smart, but because what else are we going to do? Surrender? There’s another analogy I’ve heard, that having children is like letting our hearts hop out of our chests and walk around in this grand rough world, free and so very terrifyingly vulnerable. That one works for me.

Having children who are fragile in some way, it makes for a kind of middle place for parents. We are referred to as “typical” because our own brains and our own bodies haven’t betrayed us, but we don’t feel like we’re typical. Our lives diverge, drastically and irrevocably, from the typical, usually from the very beginning. When we see other parents at the mall, we don’t necessarily identify with them.

But I’m going to go out on a limb and suggest that because of our children’s fragility, and because of our at least nodding relationship with the Big Bad, as well as a host of Smaller Bads, we cherish our threatened children more deeply than typical parents. I don’t know what kind of father I would have been to a neurotypical Schuyler, but I am certain that I would have been a lesser one.

As parents of kids with possibly life-threatening disorders, we live with the threat of the Big Bad hovering over everything we do. But there’s a payoff, a Big Good that runs through our hearts and our relationships with our children like an unbreakable golden thread. I can’t describe it to you, not clearly. But that awareness of the preciousness of time, it’s a double-edged sword. It keeps us awake at night, sure. But it keeps us awake during our time with our children, too. If you thought the Big Bad might just have your kid’s number, you’d spend every possible moment sucking up all the happiness you could, even if you kept a rubber sword at your side the whole time. And in doing so, you’d find a concentration of satisfaction and a life well-lived that most parents can’t even begin to imagine.

Which isn’t such a bad thing at all, really.