Sunday, June 17, 2007

In a house on Oak Street

In a house on Oak Street...Near the town I grew up in, J.C. sits in her recliner. The T.V. runs in the background, but she pays little attention. She listens to headphones her grandmother bought her, or to the mp3 player I bought her. She flips through the scrapbook her grandmother made her, pointing at friends, cousins, family members. She covers the favorites with stickers. She sometimes plays games on the computer I gave her, but since no one else knows how to get into her games, when she clicks on something she isn't supposed to, as she inevitably does, no one can fix it.

She's 18. She loves to be out and about. At the movies, swimming, pizza hut.
But she rarely gets out unless its the every other weekend she's at her grandmother's. Her group home is staffed with one person for her and her roommate. It's a struggle to take either one into town, but together, it's impossible, and actually forbidden by the administration for safety reasons. So she sits. And she picks up the suitcase that means it's time to go to grandma's and won't put it away. She goes to summer school, but they called and asked what they should do with her.

I have a spare room.
And a guilty conscience. I could take care of her. I could move home. I've had kids that I've cared for and kids that I lost touch with, but none haunt me like J.C. I don't have to fail her. I don't have to live 5 hours away. I could move home.

I spend so much time and energy getting away from that town. The thought of living there makes my skin crawl.

I have a husband. He doesn't want to live there.

We could live close enough I could help out. But I don't want to help out. I've spent my life with this girl helping out, afraid to step on toes, to say the wrong thing, to offend anyone. I want to rearrange her life, make it so it works, make it so she has a life that involves friends and parties and football games in the fall. I want prom and ice cream and pizza and swimming for her. I want cute boys and an adaptive bike and a job she loves. I want graduation and prom.

I'm powerless. Who do I talk to about this? How do I approach people who are doing the best for their child/grandchild and say "I don't think it's enough."?

I have visions of visiting in 5 years, 10 years, 20, 30. And she will still be in hr chair, looking at pictures of people in a life she once had. And my powerlessness overwhelms me.


Anonymous said...


I accidently came upon your blog as I was searching for information on the Mini Auggie. I began reading and I really enjoyed it! There were things you wrote that made me say, "Yes,yes!You are so right!"

I am a special education teacher and a parent of a 13 year old boy with Down syndrome, so that's where my interest comes from.

Just wanted to let you know...take care!

Lesley said...