She's waiting.

Schuyler's IEP Redux took place yesterday. Her previously unsatisfactory speech and language goals were revisited and the new plan for restoring Schuyler's AAC proficiency was worked out, at least on some level. How did it go? I'm not sure how to answer, honestly. The specific goals we wanted were added with a minimum of resistance, and some really good discussion took place that I think will lead to improvements next year. There's a big thing we're asking for that I don't think we're going to get, and it feels important enough that I really believe that without it, everything else might just fall apart, so I'm advocating hard. But no decisions about this big thing were made yesterday, which I suppose is something not altogether like bad news.

The meeting was going well, and Schuyler was listening attentively to our timeframes and our plans for implementing better AAC standards. She answered questions and understood (and agreed to, more importantly) the things we asked her to consider for next year. It was clear she was thinking a great deal about all this, about how her verbal expression needs to take a backseat to her assistive technology for now, and the kind of communication she needs to focus on in the near future. We've talked about all of this before. Schuyler is facing the future of her own communication, and she's making plans.

It wasn't until she passed us a note during the meeting that I realized all over again how much her plans still include the miraculous.

"How I can talk like my friends?"

Schuyler is looking at the things we're asking her to do, and I think she's going to be willing to do the work required to make those things happen, and to improve her situation.

But she's also waiting. She's waiting for someone to tell her when she'll be able to talk like everyone else. She's waiting for a solution, and a miracle. She's waiting for this to be behind her. Schuyler is waiting, patiently but steadfast, for her monster to leave her alone at long last.

She believes she will talk. And no amount of discussion about her brain's deeply, congenitally flawed architecture is going to divest her of that belief.

It's heartbreaking. We have this discussion every so often, maybe twice a year, and she always accepts the reality of what she's told, but with an unspoken caveat.

"I'll accept that. For now."

And the worst part is, I get it, because I don't allow myself to completely let go of this most improbable of dreams, either. I overbelieve, and sometimes that means keeping the door slightly ajar, like accommodating the return of a runaway cat that's been missing for months, or even years. I do my overbelieving quietly, because expressing it out loud doesn't do anyone any good.

Schuyler waits for something that will almost certainly never come. Even knowing the reality of her condition, I can't express that without including the "almost". She waits, and she never gives up on this hurtful dream. Knowing that it hurts her, I still can't bring myself to tell her that it can never happen, because I owe her the truth, even if it's just MY truth. And my truth hasn't given up hope, either.

This summer will mark a decade since Schuyler's polymicrogyria diagnosis. She's been waiting for someone to help her, to cure her, to fix what's broken, for ten years now. It breaks my heart that she's still waiting hopefully. It also binds my heart together a little to quietly and secretly hold onto a few strings of that hope with her.

We're fools, the both of us. I can live with that.