Originally uploaded by Citizen Rob.
Laundry? Cooking? Pushing a wheelchair or trying to keep her aspirating, disabled child from choking to death when she eats? No, this mom's burden is a child who apparently talks too much.
"Last night my daughter was reading something, and she just kept going on, and on, and on, and I went 'Ugh!' And she said, 'What's the matter? Are you tired of my reading?' And I'm like, 'No', but it's just like 'Whew!'"
Whew, indeed. If you'd really like to gain my sympathies, by all means, tell me how your kid never stops talking. No, please.
As I've mentioned before, I belong to a polymicrogyria (PMG) discussion group. I almost never post, however, mostly out of a weird sense of guilt. I have yet to read a post by another parent with a child who is better off than Schuyler, whose PMG mostly affects her speech so far. I read stories by parents whose kids are in wheelchairs or who require a feeding tube just to stay alive. Almost all of them have kids who suffer seizures. Every so often, but not as rarely as it should be, one will post that they lost their child, to a massive seizure or a choking incident or simply a quiet death in the night.
The thing about these posts, however, is that they are almost never complaining. If they're talking about seizures, it's to compare medications and treatment strategies with other parents, or simply to calm another parent going through some new manifestation of their child's monster. I posted there the first time Schuyler choked, and I'm sure that I'll be back when her first seizure hits. But for now, I mostly just read, silently thankful for Schuyler's good luck, within her bad luck.
The parents who have the most cause to complain also have the most reason to understand how much worse it could be. I've had people ask that fun hypothetical question, "If you could take away Schuyler's monster, would you?" It's not entirely hypothetical; I spend every day trying to do just that. If I can't take it away, I'll settle for cutting it down to size, muzzling its snout and blunting its claws.
But if I could go back in time and chose whether or not to have her, knowing ahead of time the world we'd be entering? That's easy. The first thirty-two years of my life were rehearsal. I started living for real when Schuyler was born. The angst I feel when I put her on the bus in the morning or the pain of watching her struggle to communicate with another kid who then makes fun of her when she runs off to play, that's the pain of living and the price I pay in order to have the privilege of walking through the world with her. She's the best person I know, hands down.
When I see a mother complaining on national television because her kid talks too much, fucking READS too much, I realize how insignificant that price is. I don't think you have to have a broken child in order to appreciate how fragile and amazing life can be. I just think you have to be paying attention.
If you read the things I write about life with Schuyler and you feel pity for us, then I'm just a shitty writer. If you read me and find yourself, against all logic and convention, feeling a little bit jealous, then I've gotten it right.