Wednesday, October 03, 2007

new world, new words

The necessity of parents becoming advocates for their children. "You will be her advocate," the early intervention coordinator told us when Stella was just weeks old. Life presents you with a capital-C Cause, and you take it up and run with it.

I didn't want to become one of those parents, the ones who make trouble. The large, loudmouthed, anxious, angry woman at the orientation session for Preschool Special Education. She seemed to be looking for a fight. What was she so worried about? I wondered.

All the families at the Buddy Walk, the parents, all of us slightly dazed-looking, perhaps dazzled by the sunny day and the hundreds of smiling faces, all here because of something our children had in common. We were all part of a Community, there for a Cause.

A father, later in the day, exasperated: "Where's my idiot son?" Clearly referring to the one without Down syndrome.

So many words to avoid, to make you cringe. So many times a day you come across them. A whole new language to learn, words that have new meanings now: delays, intervention, diagnosis.

A beautiful little girl waking up in the middle of night for a drink of water then settling back to sleep, porcelain skin, sweet snoring, silky brown hair.

4 comments:

Tricia said...

That's really what it comes down to, isn't it. That little girl.

Tara Marie said...

Amy, what a wonderful post.....

Yes, it is funny isn't it. We do, because we love, we don't because we love.

I so wish I was able to make it to NYC, as I wanted to meet you and Stella. Maybe we can do a fall outing like I mentioned on the phone? I am heading to Indiana to the Buddy Walk next weekend. The following weekend is our little local Buddy Walk. Let me know your schedule. We could also meet in NYC as the kids are begging to go in.

Give that sweet little girl of yours a big hug and kiss from Emma Sage and her Momma.

jennifergg said...

Oh how I love this post! It's all there, isn't it?!

Amy said...

Tricia: yep.
Tara: Yes, please let's plan for your gang to come to NYC!
Jennifer: wow--thanks!