not disabled. differently abled.

January 26, 2015 Family Stories, limb difference, missing hand/foot, Orthopedic 3 Comments

When I was fourteen I taught Sunday School for a year. One of the kids in my class of four year olds had a short left arm. The first day of class I found myself thinking “that poor little guy was born with only one arm.” It took next to no time at all for Tony to show me that he was anything but a child to be pitied. In fact, he wasn’t born without an arm – he was born WITH a short arm, one that ended just below the elbow, and he could do ANYTHING. I watched at church as Tony grew up, learned to play the trumpet and the guitar and developed a beautiful singing voice. He was an inspiration to me and provided me my first chance to discover that people who are physically different aren’t disabled – they’re just differently abled.

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sarah2

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Twenty(ish) years later I was married with two children, but my heart still longed for one more little someone to make our family complete. We adopted our daughter, Kailin, in China in 2006 and our son, Colby, in Taiwan in 2008. We did some research and felt very led to the China Special Needs Program.

In fall of 2010 we found an agency we wanted to work with and set to work completing our checklist in hopes we would soon be matched with our child. In large part because of my experience with Tony, “limb differences” was at the top of our list. We had quite a few other needs checked off the list as well, but we let our agency know that a child with limb differences was really where we felt called.

Just a few short months after we submitted our checklist, I awoke to find an email asking if we’d like to consider a little boy who was born with a short left arm who had just turned two that very day. He had the tiniest lips and the biggest cheeks and my heart was lost forever when I opened that first picture.

His file didn’t contain anything we felt was alarming and within the day we sent our Letter of Intent.

It was clear to us when we met Carter in China, just a few weeks before his third birthday, that even though his foster mom loved him very much, his short arm was a point of shame for him. He didn’t want it uncovered and did whatever he could to hide it as soon as he could. I waited patiently for the right moment and then I gently took Carter’s short arm in my hand and kissed it. He never hid his arm again.

We did have a bit of a surprise when we got Carter home. We took him to see an orthopedic surgeon to get a baseline x-ray of his short arm. It ends just above the elbow and we knew that bone overgrowth could be an issue. While there, I casually mentioned that we’d noticed that he was unable to rotate his right wrist and I wasn’t sure if it would be an orthopedic or a muscular issue. Several x-rays later, we learned that Carter has radial-ulnar synostosis in his right arm. It’s a fancy way of saying that the two bones of his lower arm are fused together near his elbow.

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sarah3

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Separating the bones was too risky given that he doesn’t have a backup plan if nerve damage cost him the use of his hand, so we went a more conservative route. The bones were cut and rotated to alter his “resting position” so that he can simulate rotating his wrist by rotating his whole arm in or out at his shoulder. It’s pretty much another non-issue because it’s all he’s ever known and he just figures out a way to do something when he needs to.

If I’m being totally honest, if his right arm condition had been listed in his file we likely would have said no. Now, having parented a child with limb differences, we wouldn’t hesitate to say yes to that or a whole host of other more significant limb differences.

Carter really is just like any other kid. He uses his short arm for all kinds of things. He’ll pull it out through the neck hole of his shirt and use it to steady a tower he’s building and he can also use it to control a Nintendo DS. He’ll also pull it out and wave it around if someone asks him about it. If he can’t get his little arm to do what he needs, he usually whips off a shoe and sock and uses a foot to get the job done. There are a few things we need to watch out for like bone overgrowth and injury to the end of his little arm. Other than that, he’s just like any of our other kids. He runs and jumps and climbs and pretty much inspires anyone he meets with his joyful smile, his “never say can’t” attitude, and his tenacity.

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sarah

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The hardest part about parenting him is letting go and letting him try. He usually succeeds. I know this, but my mama heart is in my throat every time I have to watch him struggle to figure something out. It about killed me this summer when he wanted to swing higher than he ever had before. I took a deep breath and let him. He did great! He’s not afraid to ask for help when he needs it, but he usually doesn’t need any help. He’s going to go far in life. There is no question about that!

— guest post by Sarah G.



3 responses to “not disabled. differently abled.”

  1. Megan says:

    The doctor we showed our daughter’s file to said that one of the hardest things would be getting our big kids to not “help” so much and let her do it on her own!

  2. Jen says:

    Great perspective. You may be interested, however, in another angle I recently read on the term “differently abled”:

    http://www.cdrnys.org/index.php?option=com_content&view=article&id=808:tdd-4-disability-euphemisms&catid=17:blogs-recent

    • Sarah says:

      Thanks! It was a good read. I guess I was using the term to mean “able in a different way” not simply to indicate different abilities, but I can see the author’s point. I beg to differ, however, that I should just call Carter “disabled”. I have yet to see anything at all that he’s not able to do. Eventually, of course, we’ll ask him what term he might prefer much the same way we’ll ask his sister, who is a Little Person, what she prefers. Mostly, though, we don’t need to use any term at all – his little arm doesn’t really define him.

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