May 14, 2007
Sometimes I get a sense that people are hesitant to tell us that they're having a baby. (Not these friends, I just mean in general.) I can understand why. Our friends know that we wanted a second child that we were never comfortable in risking. We've made peace with that, I think, and yet there is a tiny little bittersweet tug when talk turns to babies. We always thought that Schuyler would have made an incredible big sister.
We've also read too many sad stories of kids with polymicrogyria manifest much worse than with Schuyler. Gambling with that possibility was more than we were willing to do. And of course there's the ever-present likelihood (85-90%) that Schuyler's current success and sweet happy life will be rudely interrupted by seizures, maybe bad enough to hurt her. Maybe worse than that, even.
So we set ourselves to life with an only child, and that life is rewarding in ways that offset the monster. Schuyler doesn't know how spooky the future is, but even if she did, I can't imagine she'd give a damn. She cheerfully defies expectations, she takes up the fight and she's not complacent, either in school or in her ever-present quest for perfect play. She's living her life turned up to eleven, regardless of my own shortcomings.
I guess that's the other thing that makes people hesitant to talk of babies with us. I know that when I was an expectant father, seeing children with disabilities bothered me, although I would have been ashamed to admit it. I wouldn't have wanted to face that future, and I especially wouldn't have wanted to give much thought to whether or not I was up to the job as a father.
Special needs parenting is a daunting prospect, a sneaking monster that almost no one thinks they'll have to face until it lands on them with both clawed feet. Seeing how things could go down is hard. Wondering how they're going to be even without that possibility is hard enough.
In a world where such conversations would be polite, I would tell future parents the truth as I know it about parenting, even though my life as a father has been so different from most, even from other "shepherds of the broken". My truth is my own, but here it is.
No, I wasn't ready for this, but then, I wasn't ready for any of it. I wasn't ready for Schuyler to turn yellow a few days after she was born, requiring the funky Jedi light blanket on Christmas day to lower her bilirubin levels from their frighteningly high levels. I wasn't ready for her to run headfirst into a shelf at Borders one day and give herself a mild concussion when she was just learning to walk (in that "walk means lurch at high speeds" phase). I certainly wasn't ready to sit up with her in the hospital after her emergency surgery to relieve a painful abscess brought on by a nasty staph infection. It hasn't just been the monster that has snuck up on me.
But here's the thing. I also wasn't ready for her to burst out in loud, wheezing laughter for the first time, in the shadow of the World Trade Center almost a year before it became the saddest place on earth. I wasn't prepared for the first time she noticed my sadness at something and took my hand, kissing the back of it and patting it gently. I wasn't ready to hear "My name is Schuyler" come out of that first primitive box of words two years ago. Nor was I prepared to learn that she knew how to spell her own name (at a time when her teachers believed her to be unreachable) simply because she just started spelling it one day while we were sitting at Barnes & Noble, eating a cookie. And I don't believe Julie was ready to hear Schuyler say "mama" successfully for the first time a few weeks ago. (If she's not thinking about it, it comes out "mama". If she's trying, she trips herself up a little, coming up with "mwa-mwa". And "daddy" is just out of reach for now.)
I wasn't ready for any of this, and new parents just have to accept that they're not ready for any of whatever comes their way, either. Some parents find out the hard way that they shouldn't be parents, and some never realize it at all, living in a little fog of denial. But I think those parents are the exception.
For most new parents, every day is about learning, and while sometimes you'll learn the hard way, those lessons almost never leave a mark. Be prepared to learn from your kid. Be ready to encounter a lot of poo. Accept that while everyone else's saliva is gross, your child's is pure liquid delight. Deal with the concept that a half-chewed McNugget offered to you in the spirit of generosity is a gift that shouldn't be refused. Be ready for lots of scrapes and bruises and mysterious injuries, and have lots of Sesame Street Band-Aids on hand.
And most of all, know that even if you get a child who talks and who does everything in the world exactly right and meets your every expectation (selfish and otherwise), that kid is going to have unfathomable secrets.
Schuyler carries more secrets than most, but every now and then she will share one, and those moments, more than anything else, make my life worth living.