Friday, October 18, 2013


October is Spina Bifida awareness month. I've been tossing around different ideas of what I would say about that. Or if I really needed to say anything at all. In fact I've had three or four drafted posts started, but I just didn't know where exactly to go with it. Well, last night I had an encounter that changed my mind and I realized, yes, I should say at least a little something to help increase awareness here in my little spot on the internet.

Last night at horseback riding another parent or family member was sitting nearby when I was getting Ryleigh ready to ride. She started chatting with us, commenting about how cute Ryleigh is. And she asked about her feet, "does she have in-toeing? My son's feet kind of turn in too," she said pointing at a baby in a stroller. "Yeah," I answered, "she has Spina Bifida, she's pretty much paralyzed below her knees." It was a perfectly fine conversation. I really don't mind if people ask questions, and I'm happy to answer. But then she said, "oh, well I didn't know what was wrong with her." My heart sank a little. Wrong.
"Well, there isn't anything wrong with her," I answered. She asked another question or two and commented again how cute Ryleigh is. And that was the end of our conversation. But not the end of me thinking about it.

I know it was just a poor choice of words. And I know it is not the last time that someone will ask me (or Ryleigh) what is 'wrong' with her. In fact, I have had my answer prepared in my head for that exact scenario quite a long time. But it still stings a little. I didn't expect to be asked that at a therapy session where there are kids with all different kinds of challenges. Don't we all have different challenges?

I recently read this wonderful blog post about talking to kids about people with disabilities. I think she has some really great tips. Kids are curious. And most parents don't really know how to react to blunt questions about a kid in a wheelchair. And that's okay, we're all doing the best we can. It's Ron and my job to make sure Ryleigh knows there is nothing 'wrong' with her and to teach her how to answer the questions. But I think we'll all be better off if we can be a little more aware and understanding of each others' differences.

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