Able. Small word. Big meaning. I’ve always considered Nicholas quite able. While wearing a fixator less so but still pretty darn able. I have never used the word disabled to describe him but I sometimes wonder if I’ve bern in denial of some sort.
Watching Aimee Mullins’ two TED videos confirms my initial inclination to label him able. I know labels are really not the best thing and I’ve not been inclined to verbalize the able or disabled label issue with Nicholas. I found Aimee while googling “famous people with FH”. I didn’t see the TED videos till a friend of a friend posted them just days after my googling. Aimee was born with bilateral FH and had below knee amputations. She’s brilliant, she’s active, she’s real and she’s started a conversation I don’t know why more people aren’t participating in.
Kids will often be what you tell them they are. Aimee’s doctor told her she was strong when she was a little impressionable child. She’s lived up to that label for sure!
What exactly qualifies as able or disabled when we all have so many differences?
Adversity is part of life that no one escapes and we shouldn’t want to.
What can we do with what we have, when we take the focus off what we don’t have?
I wish I could send these videos directly to a parent who recently posed the question of wether or not to terminate her pregnancy because her baby likely has FH, and a milder case than Nicholas for sure because she didn’t want her baby to suffer (not a direct quote but that was the point). I had to point out that we all struggle and that I do not think FH will be the hardest thing Nick will go through in life. Maybe I’m wrong about that. I’d love to be wrong.
Aimee’s made me think a bit too about my attachment to limb lengthening as a choice for FH. I’ve always said that I know Nicholas would be ok no matter what course we chose. I thought keeping a functional leg was the reasonable choice. I still have no regrets in that department. How could I when Nicholas has done so well? Still though, I believe more than I ever did before, that Nicholas would have been ok had we chosen amputation for him. He’d be pointing his prosthetic out to his principal instead of his lift. He did that at the Open House last week. He told the new principal that every 2nd grader knows him because of “this” and he pointed to his shoe. The principal replied that he probably should have known who Nicholas was already too. It was a fun exchange.
Nicholas also introduced me to his new gym teacher and asked him if there was anything he needed to ask me about his leg. There was not. I figured he would have called me had there been any question of what Nick could or could not participate in. So far he does it all. You see he’s really quite able that boy of mine!