Ectrodactyly

Christopher has ectrodactyly, which is a condition marked by missing fingers and toes on his hands and feet.

I was surprised to notice that I have only briefly mentioned this on my blog.  I think I tend to forget about it because it is not the first thing I think about when I think about my son,  Also, it seems like no big deal to me. It doesn't interfere with our day-to-day life. But I wasn't always so comfortable with it.

When John and I first got the referral for Christopher, we had never heard of Ectrodactyly.  The diagnosis seemed very scary.  Christopher has what is also know as "cleft feet":  there is an almost V-like divide down the center of his feet.  We had never seen anything like this, and wondered if he would ever walk.

There is not a lot of information out there on this condition, as it is pretty rare.  However, I found two great resources:  a private Facebook group which is SO informative and supportive.  And a blog, written by a fellow adoptive mother who happens to have a daughter with Ectro.

Through these sources, I found out that Christopher will indeed walk.  He will be able to hold a pencil and write, he will be able to feed himself, and do almost everything that people who don't have this condition can do.

My biggest concern about adopting him was that my heart would be broken by the discrimination and cruelty of others.  We all know how just the slightest difference causes others to be uncomfortable.  We also know how the "mother bear" can come out when others are mean to our kids.  I didn't want to go there.

In fact, even when I talked about his condition before he came home, one friend expressed her concern and made it clear she were "very concerned" about how this would affect our family.  "Sam," one friend said over dinner, with a frown on her face, "that is a big deal.  Are you really up for that?" I know she meant well, but I just don't think she got it:  I was not deciding to give my son this condition; he already had it.  The question was:  should he have this condition in a Chinese orphanage, or with us?  The answer seemed obvious, and I would just have to learn to deal with my "mother bear" feelings.

Look how it has affected us!  We all love him so much.  He is nothing but pure joy.

I am sure our hearts will be broken by others' insensitivity.  But we are talking a lot in our family about how most of the stares and comments will be out of curiosity and ignorance, not cruelty.   I think this is teaching our kids at a gut level about tolerance and acceptance and love.

I've already seen a couple of people do double-takes when they notice his missing toes or fingers, but, so far, no cruelty.  

I am so glad we moved past our comfort zone when we accepted Christopher's referral.