December 30, 2007

SCHUYLER'S MONSTER: The Monster

It's funny, because we both sort of lose our composure a tiny bit in this one, and yet despite that (or maybe because of it), I think it's my favorite.



Transcript:

Rob: So when Schuyler was about eighteen months old, her pediatrician determined that there was some sort of developmental delay with her speech. She wasn't speaking, she wasn't trying to form words, and it was a concern. Initially she was tested for hearing problems, and she went through a whole series of, of different types of hearing tests that, that ultimately she passed. She went through a lot of different evaluations and tests. She at one point was given a diagnosis of an autism spectrum disorder that, it didn't, it didn't fit. And so she... It took a while for us to finally to figure out what was going on.

When she was three years old she received an MRI scan, and that took the picture of the problem. The problem was a brain malformation, a very rare disorder called polymicrogyria, and it affects the formation of the brain, the shape of the brain, and in her case it affects her speech area. There are other kids who suffer from it with a really wide range of symptoms. Most, some, most kids will suffer some level of mental retardation. Speech, swallowing disorders are common, and almost all kids who suffer from this suffer from seizures. Some of them are pretty bad, too. It can actually, it can actually... kill really young kids who have this. So there were a lot of concerns on a lot of issues.

When she first got that diagnosis, it was hard, it was really hard for us. Because you think you want an answer, you say, "You know, I just want an answer." But sometimes you get that answer, and it's, it's not the answer that you're looking for.

Julie: That was rough because we went into it thinking nothing was wrong, and we'd been told that if something was wrong, they would have called us right away. And so, I think we sat back on our heels and we got comfortable. And we thought, "Nothing, no big deal, we're just going to go in for a checkup." And then as soon as we stepped into the room, you felt, you felt this air of like, something was wrong, something was really wrong.

It just seems like yesterday still. And it was so beautiful outside. It was such a beautiful day. Because I remember, she was impervious, and she just played, she didn't care at all. And I just tried to keep it together, and tried not to cry. We did a lot of crying after that, I know.

I still do, to this day. There are days that are good and days that are bad. And it just, it gets to you, because it's just, it's so unfair. You know, this beautiful little creature, caught under glass. She can't, she can't, you know, maybe that's my charming mixed metaphor, but that's the way I feel like sometimes. She's this beautiful butterfly that's pinned down and caught under glass and she can't fly away. But she tries. She tries pretty damn hard.

7 comments:

Anonymous said...

Wow, I remember way back when you posted the photos of Schuyler's MRI and I sat back in my chair and just thought, "Damn." It certainly isn't fair, but that is one butterfly that won't give up fighting...and neither will her parents.

Hey btw, Rob -- would you ask Schuyler what she thinks some good goat names are? We have a bumper crop coming up in a few months time, and I need ideas ;-}

Shannon said...

a butterfly pinned down under glass has got to be the saddest metaphor I've ever read.

I'm going to buy the book because I'm fascinated and want to know more. I have a bunch of questions that I wouldn't want to annoy you with :)

Rob said...

Hey btw, Rob -- would you ask Schuyler what she thinks some good goat names are? We have a bumper crop coming up in a few months time, and I need ideas ;-}

Don't bother asking, she'll just end up naming them after kids in her class. She's not usually very original with naming things.

Anonymous said...

Maybe I can send her some baby pics when they are born and she'll be inspired! :) On the other hand, hey, perhaps the kids in her class have cool names too!

kris said...

That one makes ME cry. It's just so perfectly raw. The butterfly under glass metaphor is a kick in the gut. You guys are helping her shake off those pins and chip away at that glass though. She truly is magnificent.

DarnLucky Beth said...

Rob, I just pre-ordered my copy of the book from Amazon. I'm very much looking forward to reading it.

Happy New Year to you guys.

Zenoma said...

This post reminded me of two quotes by Hellen Keller:

"Happiness cannot come from without. It must come from within. It is not what we see and touch or that which others do for us which makes us happy; it is that which we think and feel and do, first for the other fellow and then for ourselves."

"Keep your face to the sunshine and you cannot see the shadow."

Schuyler certainly seems to have her face perpetually toward the sunshine.

And speaking of naming things, my son is also an original namer. Blinky- "because he blinks" Eaty-"because he eats", etc. Not real creative in the naming department that kid.