July 16, 2006
Before she was born, I was a pretty selfish person. It made my writing fun, I suppose, but not in a way that was going to enrich anyone's life. I wrote about me, and how the world affected me, and what the world owed me, and occasionally I might wander off topic briefly, only to suddenly realize that we weren't talking about me anymore.
After we found out that Schuyler was coming, I was still writing about me, but suddenly it was about this baby and how she was growing and how scared I was and how I didn't have a clue what to do and how, yes, I was afraid of all the things that could go wrong with her, never guessing that the thing that would become her bane had already formed and was simply going to sit there for almost four years waiting to be noticed.
After she was born, I wrote about her a lot, in the way you write about babies. They don't do much worth writing about. They shit and cry and scare you and occasionally do something vaguely human-like. So in writing about her, I was still writing about me.
And then she turned into a little girl, and then a little girl who didn't talk, and then a little girl being tested by big Yale medical brains, and finally she was a little girl with a monster living in her head, its invisible hand clapped firmly and immovably over her mouth.
And at some point, she became the thing I wrote about most of all. In February, realizing this and wanting to say more in less time, I gave up all pretenses of being independently interesting myself, and I moved my writing to a blog, and named it after Schuyler and me. And here we are.
So yes. I write about Schuyler. And yet, I'm not sure how well I do, because different people have different ideas of who she is, based on my words. Some people get it right, and some people get it wildly wrong. Schuyler's hard to describe. I'll spend the rest of my life trying.
We watched her at play in one of those big indoor playgrounds today. One reason, as I wrote last time, that I will never hit her (as if I need a list) is that Schuyler is a courageous girl, and I don't want the first thing she learns to fear to be me. Her fearlessness is astounding, and one of the things of which I am the most proud of. We went to see a movie today, and we had our misgivings about how scary it might be for her. Once again, she loved the movie and embraced its monsters as her own.
(I'm not in love with hearing everyone's criticism of the movies we take her to, but I'll simply say that in her usual "everyone gets a role in the movie" way, she has now determined that she is the Captain, complete with bold swagger and a hearty "Arrr!", I am Davy Jones (with little fingers miming the tentacles on my face), and poor Julie is none other than the Kraken. She's less than thrilled by that, but honestly, I'm jealous. Who wouldn't want to be the Kraken?)
It's hard to describe Schuyler's fearlessness, or her bursting optimism, her almost constant good mood and her complete and total lack of shyness. I can't think of a person I know with more cause to wake up in a shitty mood than Schuyler, no one who has a better reason to go outside and shake her angry fists at the sky, cursing God unintelligibly. And yet, she never does. She gets frustrated, she occasionally throws up her hands in exasperation, but she moves on. And I wish you could know her, every one of you, even those of you who say unkind things about her and about me, because I can't win you over (and I don't always want to), but she could. She would.
I was thinking about this earlier, and I decided to add a few links to the sidebar, links to things that other people who know Schuyler have written about her. They were written by our friends, and hers. I don't tell them often enough how much I love them, but I do. These entries mostly revolve around the time when Schuyler was diagnosed, or after we went to Chicago to meet with Dr. Dobyns and instead of hope, we got handed the full measure of her monster.
I hope you'll go read them.
Schuyler's hair has almost faded back to its original color, and since she's swimming in a chlorinated pool every day at camp, we've held off on coloring it again. But she's asking. She watches her favorite characters on kid shows like The Doodlebops and the ever-weird LazyTown, and if you're bold enough to follow those links, you'll see what those characters have in common. And you'll probably be able to figure out what Schuyler's been asking for.
You should know by now that our answer is probably going to be yes.