Monday, February 25, 2008

Old Wounds, and Healing

Last Sunday, Jenelle's Challenger Team had their first practice. It was such an amazing and awesome experience. The kids are so fun, and so happy. It really helps you see things in life, from a different perspective. Unfortunately, the first practice opened some old wounds, and some old hurt resurfaced.

The entire team is quite a diverse group of disabilities. As a special needs parent, one never likes to dwell on "diagnosis" or "labels," especially when you are like us and your child is without diagnosis. As I predicted, Jenelle is the most challenged kid in the group. She doesn't talk, doesn't use her hands, and is barely aware of what is actually going on. Many of the other kids are very high functioning. Even the child in the other wheel chair was trying to field the ball with her glove.

During the first practice, I was talking with the parents and noticed that Jenelle hadn’t had a chance to bat. Brett was helping with the coaching, and Jenelle was sitting in her wheel chair off near second base with Jack. When practice was over, I asked another coach why Jenelle didn't bat. The coach told me that Brett didn't think she was ready. Later, Brett said it hurt to watch Jenelle, and to see that even amongst her peers (i.e. other children with disabilities) she is so very different, and so very disabled.

When she was a baby, it was difficult to see other kids her age, because it was a blatant reminder of all the things she wasn’t doing. With time, it becomes easier to see other 5 year olds and typically functioning kids. It is easier to accept that Jenelle is different. But I guess when you start to realize what other disabled kids can do that your child can't, it is like pouring salt on an old wound. Brett said, "Sometimes I wish it had been easier. Like maybe if she had Down Syndrome, she could at least be more high functioning." But then I reminded him, that at least without a diagnosis, at least she still has potential. And maybe next year, she'll be using a walker to get to first base instead of her wheelchair! It is hard to find the words to comfort him, because I am hurting as well.

Yesterday was Jenelle’s second practice. We held it indoors because of the rain, and instead of her regular shoes, I put on her AFOs to give her more support. As you know, Jenelle is just starting to walk, and is walking every day with such determination and wonder. We really need to keep an eye on her for her safety. Her improvement is amazing. At practice, Jenelle was able to stand at the tee, and put a hand on the bat and hit the ball. She took slow and determined steps and made it round the bases (with help.) And she smiled like she’s never smiled before. Jenelle took 3 “at bats” yesterday, and needed her wheel chair for the third as I could tell she was getting tired. She giggled and laughed and loved every minute.

Once we got over our hesitation and gave her have a chance, she made us very proud. I never realized how this experience would move me more than I’ve already been moved being Jenelle’s Mom, but it has. I find that I’m so proud of all these kids, as they really want to play baseball, and do their best. It is so wonderful to share that with these kids. Opening Day is this Saturday, and I can’t wait to share this experience with our community. With my parents who are driving down 4 hours to see her first game. You can’t help but watch and be moved. And in a way, this experience heals the old wounds, and helps inspire us for Jenelle's tomorrow.

4 comments:

Doris said...

I'm so glad that Jenelle got to be at bat. And the walking is just amazing, I felt so happy for you guys when I read your walking progress a few weeks ago. I, too, go to these events for special needs kids and many times Edda seems to be the only one really not knowing what's going on and not being able to run around... Sigh.

Brooklyn said...

You are our little superstar Jenelle! You Go girl!!
Hugs from Indiana,
Kelly and Brookiyn

Mete said...

I know exactly what you mean about comparing to their peers - all of their peers - and wishing things could be different.

Congrats to Jennelle for her at-bats! Makes me eager for spring training (just a little...)

coping with epilepsy said...

FYI, there is a new non-profit organization dedicated to Lennox Gastaut Syndrome: www.lgsfoundation.org