December 20, 2006
Season of Change
We met with Schuyler's team yesterday, specifically addressing her dysphagia issues. I don't write much about the secondary effects of her Bilateral Perisylvan Polymicrogyria, but the other major issue besides her speech problem involves her swallowing and the muscles in her face. It's the thing that causes her to drool, and it makes for occasional difficulties when she eats.
It doesn't come up often; we watch what she eats pretty carefully, and she never dines alone. A few weeks ago, however, she had a choking incident at school, and since then there's been a lot of talk about a special diet and pureeing all her food (an idea floated last year by an overenthusiastic therapist) and generally lots of scary talk. Schuyler received an independent evaluation from a dysphagia expert, and yesterday we got the report.
It wasn't bad at all. We're making a few adjustments to what Schuyler's going to eat and how it'll be presented to her, but none of the meatloaf milkshakes we were afraid of. The thing I liked the most about the expert was her commitment to a solution that will allow Schuyler to function in a way that won't make her stand out in her peer group. She has a commitment to improving Schuyler's life, not just to help her stay healthy but also to help her grow into a normal little girl trying to find her way in the unforgiving "Lord of the Flies" world of little kids. You couldn't pay me enough to relive those days, and I wasn't even broken at that age.
It's funny, because life has changed so much lately, and it's changing more every day. There's another song by Eels, with the line "I'm tired of the old shit, let the new shit begin." But for Schuyler, it's still the smallest things that amaze her, not the big changes. Old faces disappear from her life as they do from mine, and new ones appear. Schuyler rolls with it far better than I do.
She turns seven tomorrow, an event that she's been excited about for weeks, ever since my birthday started off our family birthday season. It has corresponded to a big event, one that has captivated Schuyler most of all.
A few weeks ago, we found ourselves with puppies (don't ask), and she's been watching them grow with fascination. Even though they're finding homes in a hurry (half-pug and half-Boston Terrier is apparently a popular mix, even if it's really half-housefly and half-Gollum), they've still all come to get names. There's Runtly (obvious reason), Bindi (who had a tiny mark on her forehead, but it seems have to have disappeared, like Madonna's), Brindlefly (nerd joke), Tiny Lulu (again, probably obvious why), and the one who has become attached to me, against my better judgment, Sir Ernest. He's the explorer in the bunch.
They're growing so fast. So is Schuyler, come to think of it. She can't take her eyes off of them, and I can't take mine off of her.