I realize it’s natural to feel up and down about Jordan’s arm. I spent the day at the swimming pool today with Jordan and Cam and watched all of the families and all of the children. An arm is just a piece of a body. There is so much more to my little, happy, giggly, sweet girl. So it kind of bothers me when I’m in another funk about it. It started with yesterday’s comment at work. I don’t know why I’m letting it affect me. I guess this just comes with the territory.
I recently hooked up with a new online community for children amputees. For the first time ever, I’ve had the opportunity to talk to a mom of an 11 year old girl who is a left above elbow amputee. By the way, in the amputee community, that is LAE. My girl is classified as LAE. AE – above elbow, BE – below elbow, AK – above knee… it goes on. Anyway, this mom told me they tried the prosthetic route and it never worked. And of course that gets me wondering if going the prosthetic route is even worth the pain and stress on my baby. I still believe it’s worth helping her learn what these tools can do for her, but I’m starting to understand why some people go to the no-prosthetic-camp. The hand is such a sensory tool for us. When you don’t have a hand, you still need whatever arm you have left to aid in your sensory needs. A prosthetic blocks that sensory information that can be gathered from the arm. For this little girl, they started prosthetics a 10 months. She advanced to a harness strap system that helped the prosthetic elbow bend, and a hand that opens and closes. Her mom told me it got to a point where the only time she wore the arm was for occupational therapy… And it became frustrating. They found that their daughter didn’t really need it. They live with the attitude: “If it ain’t broke, don’t fix it.” So I guess I’m also mourning the fact that my kid may not need a lot of the help that I’m working so hard to give her. It’s confusing and I don’t really know how to feel.
Another interesting thing about this group that I just found out about is there is another child in my state that is an above elbow amputee. Hopefully a parent of that child will join in on the online conversation and we might be able to meet up someday.
In time, I have accepted the fact that my little girl looks different and doesn’t have to have a fake arm to complete her. But I still believe that she deserves the introduction of these tools. I guess I figured it would be a struggle, but it would offer some assistance. I worry that all the work may not actually help her. I pray that’s not the case. But only time will tell.