23 March 2011

a dream worth the keep

Today was not a great day. Nothing horrible happened, just a series of small annoyances that built and built, but as I walked out of my office to go pick Em up, I was convinced it was going to be fine. Then two drivers in a row cut me off, the sun disappeared and a big, fat raindrop snuck underneath my glasses to unnecessarily moisten my eye.

But Em was going riding, and Em loves riding. And sure enough, when the car's tires hit the gravel lane leading to the stable, her grin appeared, and she leaned her forehead to the window, a 40-pound bundle of happy anticipation.

"I ride a horse?"

"That's right, babe, you're going to ride a horse."

As she helped groom and tack Hershey, a pony with attitude that belies his advanced age, the grin stayed in place. Shyly, she reached out to touch him with her right hand (the left already occupied by thumb-sucking) as she followed the volunteers through the routine.

Then she was riding, sitting up tall and holding her reins as Hershey quick-stepped around the ring. They passed by the fence where I was standing, and E., one of the volunteers, turned to ask me a question.

"Does she sign?"

I was already shaking my head when she continued, "I thought maybe she signed because she doesn't talk."

Doesn't talk? My girl? Well, obviously E. has never been woken from a sound sleep at 5 a.m. by Emma "not talking." I took a moment to gather my indignance as they walked on, but when I let the breath out, it wasn't anger I was feeling.

Like Tori sings, "doesn't take much to rip us into pieces."

Is Em nonverbal? Maybe. Mostly. Probably, by the technical definition, which is "involving little use of language." Yes.

And that hurts. It sounds so harsh, like a thousand big, fat raindrops hitting you square in the eye at once.

A full sentence is a rarity for Em, and when she does say one, it's usually playback of whatever was just said to her. She has her favorite phrases, though -- "We go in the car," "I take a bath," and anything that starts with "more" and ends with a food.

I want to write a list of all the words I've ever heard her say, tally them up and consult some nonexistent chart. Surely she gets credit for "xylophone" and "waffle" and "jellyfish." My daughter says words. All kinds of words. And they count. That's speech. Right? 

It's lightyears away from what you'd hear from a neurotypical 5-year-old. But it's also lightyears away from where she used to be. She's come so far; she's done so much. And I can't let someone who knows nothing about all that struggle and all that progress to casually steal my hope. I know she has so much more to show me.

There were days I was sure I'd never hear a response to my "I love you." I always told myself it didn't matter, that we didn't need words for that bond. But tonight, I tucked my daughter into her bed, and as she gathered her stuffed animals around her, I said it again.

"I love you, Em."

She pulled a penguin into her arms and glanced at me, then reached for a monkey. I kissed her forehead and stood to turn out the light as she rolled toward the wall. It was faint, but I heard her speak as I left the room.

"Luv oo."

"'Cause this life is a beautiful one
And though I seen it comin' undone
I know most definitely
That it’s gonna be you
It’s gonna be me
So baby, keep your head up
Keep it on the up and up
Cause you got all my…
Love love love"

--Tristan Prettyman, "Love, Love, Love"

1 comment:

  1. Every time I read one of these, I am so impressed at the dedication you show to ensuring Em gets everything she can to help her along, despite the prejudices you encounter. Enjoy your victories, and thank you for sharing them.