Wednesday, July 21, 2010

So, what's wrong with her legs?

We are a very active family and are on the go a lot. I take pride in the fact that I've heard more than a couple of times from one of Emma's therapists that I bring her in too tired because we were out late the night before or up having a dance party and the like. We like to participate in our community and enjoy life. What can I say? I'm not about to compromise a childhood for a well-rested therapy session the next day!

Last week I had the girls at the Delaware Children's Museum. It's a fantastic new museum, very accessible and fun and we have a season pass so we go quite often. This week we went without meeting up with a bunch of friends and it was mostly just the three of us hanging out having fun. A boy came up to us and grabbed Emma's leg and tapped it and moved it a bit. Emma just looked at him and so did I since he wasn't doing anything in a mean way and I was giving him a bit of room before I demanded he take his hands off my daughter. Then he looked at me and asked me - "So, what's wrong with her legs anyway?"

I was a bit dumbfounded by this. I mean, Emma is in a wheelchair but I haven't really had people ask about it much. All our friends have pretty much known Emma all her life and this is just the way she is, so I haven't really developed a script to tell people when they ask. (Oh I have had people make comments in a not so nice way and I just ignore them.) This little guy was just quite curious and looking expectantly at me for an answer.

I thought a second or two and told him that there is nothing wrong with her legs, that this is just the way God made her. Then he said well there must be something wrong since she is in a wheelchair. And I said no, not wrong, this is just the way she was made. He thought about that a minute and said "Oh!" and sort of tapped her leg and gave her a hug and off he went. Later in the day a little girl about Emma's age asked me if she was a baby. I said, no, she's not a baby she is almost 3 years old. And then she asked me why she is in that (pointing to the wheelchair) and I told her that she needs to move around and this gets her around since she's not walking yet. Again, I was caught off guard so it took me a few moments to think of this response.

Her mom was nearby and told me her little girl didn't mean anything by calling Emma a baby and that she was sorry if I was offended. I told her I wasn't the least bit offended and she could ask whatever questions she wants. The mom and I proceeded to talk until the girls were done their art projects.

Since we will continue to be out and about, I'm sure we'll get many more of these questions so maybe it's about time I started to think up some good responses.

2 Comments from readers:

The Henrys said...

I think you handled that just fine! It is always hard to think of the right thing to say when you are caught off guard, but you did it!

I also tell kids that Gracie is just the way that she is, that there is nothing wrong with her. I then encourage them to say hi to her and ask her to wave hello back to them. So far, this works.

Unknown said...


I came across your Blog through the Kidz site and have truly enjoyed following your updates. I was drawn in closer when I saw that your sweet Emma is cared for by the wonderful folks at AI duPont.

It is clear from your postings and the smiles on Emma's face that you are forging an awesome path for her. After reading today's post I wanted to share the 'response' that after some fine tuning worked for us. You see my Angel Tyra also had Cerebral Palsy and made her way through this world with some obvious accessories (wheelchairs, braces, etc).

"Her muscles don't always listen to her brain"
- This makes it clear that her brain works, she thinks, feels, and desires just as they do
- Her muscles they work too. Our kids have to be some of the STRONGest around
- They just don't always cooperate with eachother. Kids understand at a very early age what it means not to listen. This also helps them empathize (without realizing) some of the frustration our kids might face.

I'm confident you'll fine tune what works for you.

Continued blessing along this journey!