Monday, May 21, 2012

I need to open my mind

I did something yesterday that I never thought I would be able to do—I sent Veronica on a trip and I didn’t volunteer to tag along. If you have a disabled child, then you understand what an incredible milestone this is in my life as a mother.

Before Veronica was born, I was told that she wouldn’t live. After she was born, I was told she would never walk. After she walked, I quit thinking that doctors knew everything.

Back in January, Veronica’s Girl Scout leaders talked about taking the girls on a trip for two nights. I was hesitant. I didn’t want other people dressing my child—I didn’t want her to be a burden on someone else.

I told Veronica that she couldn’t go out of town with her troop unless she learned to dress herself and put on her leg braces and shoes on her own. At the time, it seemed almost impossible. But I had seen children who were a lot more disabled than Veronica who could dress themselves so I knew there had to be a way that she could figure it out.

After months of screaming and crying (from both of us) and trying different dressing tools, Veronica finally figured out how to dress herself completely. For those of you with “normal” children you will never fully understand this. For the first time in 11 years, I am not responsible for putting on Veronica’s shoes. This frees up about 10 minutes per day for me…that’s over an hour per week—or about 60 hours per year.

I used to have to put on her socks and then spend several minutes adjusting them so that they felt “right.” Then I had to put on her braces and adjust the straps until they felt “comfortable.” Then I had to squeeze her tennis shoes over the leg braces and tie them. Sometime the tennis shoes would trigger a pain in her toes and I would be forced to pull everything off and start over again until she felt "okay."

There were times when she would get so frustrated with her feet hurting that she would kick her legs in anger—those feet would hit me. Sometimes I got kicked in the face. Other times I would dodge the kicks and grab her legs and tell her to calm down. It was always a fight. It was never a sweet mother/daughter experience. It set the tone for our morning and I couldn't wait for the bus to pull up outside and take her to school. 

For those of you who don’t have a disabled child, this sounds like madness. It sounds like I am raising a pampered princess. It sounds like she demanded that I do what she told me to do.

Well, you’re right. As a parent of a disabled child, I do the typical thing and make excuses for my child. The excuses are true, but they don’t warrant being kicked in the face on a daily basis. It’s hard to stand your ground and force your disabled child to endure pain in order to become a more self-sufficient young adult. It seems logical, but the steps to get there are not.

It was so easy when Veronica was a baby and I could just stay at home with her all day and give her all of my attention. She was happy being a baby that just needed to eat, sleep, and play.

But now she’s a young lady who’s blossoming into a pre-teen. She’s worried about someone seeing the patch of hair she missed shaving on her legs so it should be obvious that she doesn’t want anyone to see her leg braces.

When we picked out her dress for the wedding she said, “Can you get me a long dress? I don’t want anyone to see my legs.” It broke my heart, but I knew this day would come. And I can’t blame her for the way she feels. I used to want to skip school to hide a zit. I can’t even imagine dealing with leg braces.

Veronica is such a beautiful young lady. I realized this past week that boys her age look past her disability and see her beauty. She has a crush on a boy in her class—he’s one of the popular boys of course. My first thought was, “he’s not gonna want anyone to know he likes her because she is disabled.”

I was wrong. I went to a party for her class and I saw this boy. I saw the way he looked at her. I knew he was smitten. He went out of his way to make Veronica laugh and notice him. I realized that I was the one with the problem.

Maybe things have changed since I was a kid.  Maybe people are more accepting? I hope so.

I guess I have spent the past few years bracing myself for the let downs. I kept waiting for people to treat Veronica badly. I kept waiting for her to come home crying because someone made fun of her at school. None of those things have happened. I don’t know why.

All I know is that is that I seem to be the only person who is bothered by Veronica’s disability. I keep thinking that I am just being realistic, but now I am beginning to wonder. Perhaps I’m the one holding her back. Perhaps I’m the one who needs to just accept it and move on.

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