May 23, 2013

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.

8 comments:

Ethel Mertz said...

omfg. "heartbreaking" isn't even a strong enough word. For what it's worth (the opinion of a total stranger) I believe you are a wonderful dad to keep the door open.

A Guy on the Internet said...

If it turns out to rely on Moore's law to become a reality, I wouldn't rule it out. We all live now, not ten years from now, but in 2003, we didn't all carry supercomputers connected to the worldwide network around in our pockets, and it would have been hard to imagine an iPad app that would give her even the kind of voice that she has.

Keep up the love, and the hope.

Elizabeth said...

I think I love A Guy on the Internet for what he wrote. I have not other things to say other than hope is a tiny thing, tiny enough to keep in a pocket, hidden away but there, seemingly forever.

mooserbeans said...

Heartbreaking. That sums up what most of the teens with special needs that I've worked with want. They want to be like their friends and fit in. I love her hope. Hope can give you great strength.

Unknown said...

I don't like how you think that it is foolish to believe in something that everyone else thinks is "impossible", because do you know who is in control of all "impossible" things? God! I believe that your little girl will someday use her voice in such mighty ways that it will allow her to tell her story to the ends of the earth. God has the final say on her abilities and limitations, and believing for a miracle isn't and never could be labeled as foolish! I will pray for little Schuyler, and am believing for a healing in Jesus name! God Bless! :)

Robert Hudson said...

(Responding to Andrea in email.)

Leigh@flappinessis said...

Our children do not have the same diagnosis, but I feel this post to my toes. We don't yet know if Callum will speak or to what degree. But I do know the possibility remains that he will one day notice, resent, and hope. Hope is a beautiful thing. But sometimes it's cruel. And for those who believe that letting go of hope is letting go of God, what makes you so certain that disability is His plan to be begin with? God didn't remove our children's voices to develop a test for getting them back. It just is what it is. Holding onto or letting go of a particular hope isn't a test. It's how we cope with what we cannot directly change. Who knows what science will come up with? And who knows how Schuyler perception of herself will one day evolve? It's unknown. And that's okay. You're doing a great job, Robert. You are teaching her to be both honest and brave in her journey. :)

roxs81 said...

Have you mage thought of trying hyperbaric oxygen therapy it helps improve brain cells .