Monday, February 20, 2012

Being Olivia

My mom is having new carpet laid in her house this week. That means that they tore up the old carpet over the weekend. We all went over there yesterday afternoon so that Tom could climb into the crawlspace beneath my parents’ house and run cable from one corner to the other so they could move their television across the room once the new carpet has been installed.

The current lack of carpet left about an inch to maybe an inch and a half step up from the sub-flooring in the living room to the wood floor in the kitchen.

Olivia tripped on that ‘step’ three times in the two hours we were there.

At least she knows how to fall these days, in that she actually puts her hands down to catch herself before her face meets the floor. Before gymnastics, that didn’t happen, which is how she hurt her right front tooth several years ago.

A doctor we were seeing before we even got O’s diagnosis once described her gross motor issues to me.

He told me to imagine trying to drive a car and having to think about every single thing you’re doing at every single moment. From the minute pressure you put on the gas pedal to the ever so gentle adjustment of the steering wheel, to the glance in the rear view mirrors, etc. Imagine actually having to think about those movements all the time.

That’s how it was for Olivia as she was learning to sit up, to crawl, to walk, to fall even.

None of that came naturally for her. She had no natural reflexes for catching herself when she fell. She had no natural instinct for crawling or walking. She had to learn every single one of those skills. She had to think about every single movement she made as she taught her body to do those things.

She has muscle memory, though, so once she learns a skill, she remembers it and doesn’t have to relearn it. We’re grateful for the small things.

But that little lip that stuck up took a few crashes for her to learn to step up a little higher as she ran through the room. She had to slow down, take higher steps, watch where she was going. I think we ended the day just a couple of bruises but this morning when we got back to Gram’s house, O remembered that ‘step.’ And she watched for it. She learns. It’s just too bad that sometimes she has to learn the hard way.

But all this is part of why writing, cutting, jumping, climbing have been hard for our girl. She has universal low muscle tone. That means every single muscle in her body is weak. That means the big ones and the little ones have to work harder than yours or mine do to do the same things.

But she does them and she works so hard to learn everything we all take for granted.

Last night at dinner, she was sitting a little too close to the edge of her chair. She fell to the floor mid bite of her tomato soup. She got up, picked up a napkin, cleaned up the soup from the floor, threw the napkin away, climbed back into her chair and resumed eating.

A few minutes later, she ‘fell’ again. This this fall sounded different from the first. Tom and I exchanged a glance. The second call sounded much more controlled than the first. She’d let herself fall that time. I think she was trying to get a reaction again. But we were impressed with her ability to fake a fall at all. She controlled her little body and fell to the floor in a way that didn’t hurt her.

She’s come so far in these last five years and I have no doubt that she’ll come a lot farther in the years to come but I don’t want to take away from how hard she’s worked to get to where she already is.

My girl is a superhero, plain and simple.

And that sister of hers? The one I called a jerk last week? Yeah, her? She’s a superhero too because when she looks at her sister, she sees a little sister, your average, every day, annoying little sister. I wouldn’t have it any other way.

1 comment:

Tiffany said...

I love that analogy from the doctor! It's perfect.