May 16, 2010

What's Wrong With Her?

One of my daughters wears a leg brace. She's had low muscle tone since birth and hyper-extends one of her legs. The brace stops the hyper-extending and has helped her figure out balance and coordination. We don't treat her any differently than we treat her sisters. She's expected to do the same things they do. Sure, sometimes we have to make modifications, but most of the time I forget she's "different"... mainly because she's not. She's smart as a whip and has an adult-like grasp of humor. The jokes that go over her sisters' heads are things she immediately laughs at. She's friendly and outgoing.
Warmer weather always stresses me out when it comes to her. In the fall and winter her brace is hidden under her pants. But once the warm weather rolls around, people want to know "What's wrong with her?" I never know what to say. Is it polite to say "None of your business"? Just yesterday, while at the park, someone said to her "Oh no, what did you do?" Since we tend to forget she even wears the brace, I thought the concerned party was talking about a scrape on her knee. "Oh, she fell," I said. "Oh my goodness... did she break her leg?" WHAT??? Then I realized she was inquiring about the brace. "No, she's always worn that" I said, and left it at that.
She's getting to an age where she knows people are talking about her. In our house, it has never been a big deal. She wears the brace because it helps her walk better. Her sisters have never questioned it. She has never really questioned it. But these days when others, adults and children, question it, I see something flash in her eyes... yet I can't put my finger on it... shame? disappointment? confusion?
The good news is she may be out of the brace by the end of the summer. She's sooooo close to not needing it. When people question why she wears the brace, I would want to give them a long list of reasons of why she won't be wearing the brace much longer... She has worked hard to get where she is. Some day, when she has a better understanding of life, I want to be able to tell her how proud I am that she never gives up, that she tries things over and over, that she may have to do things in different ways than her sisters, but that she still fights to do things by herself. What's wrong with her? Not a damn thing.

10 comments:

Sadia said...

Oh, Quadmama, I hear you. We used to get that all time with Melly, both for her nose, and for her eye patch. The patch was easier to deal with, probably because it was temporary. I'd just explain what ambylopia was and that patching helped Melly's brain register the image from her weak eye. Part of my reason for talking about it was to raise awareness; so many kids spend years patching or need surgery when early diagnosis could have result in an easier fix.

The nose is more of an issue. I think she's beautiful. Melly knows she's beautiful. There's nothing "wrong"; it's just unusual. Other people want to see symmetry. The only "fix" is plastic surgery, and we're leaning away from that. I wonder if it won't be MORE of an issue because she has an identical twin. I worry that she (and the people making the comments) look at Jess as see how Mel "should" have looked. I wonder whether I made a mistake by letting them know that they're identical.

The comments don't come as often now, as Melly's face has matured and her nose has become less noticeable, but I still haven't found an elegant response. My boilerplate response to children is "Her nose is different to make it easier to tell her apart from her sister," but that won't last forever AND emphasizes the twin thing perhaps more than we should.

I'm sorry that people are insensitive. I'm glad that your nuclear family is not.

MaryAnne said...

I'm sorry. I've had a 12-inch scar from cancer surgery since before my second birthday, so I can identify on some level - and I can say that, while there was a time when it made me first ashamed and then angry for being different, I've come to see it as something that taught me to embrace the many ups and downs of life. It took a couple decades to get there, though...

Quadmama said...

I know at this point the comments bother me more than her. I'm glad she's such a friendly, outgoing girl...most of the time she could really care less. If it were one of her "shy sisters" I think it would be a more traumatic event. I know for the most part people don't mean to come across as insensitive. Sadia, I have to tell you I like your "boilerplate response"... it has to really make people think about what they've just asked you.

Stephanie Barr said...

Not a damn thing sounds like a fine answer to me. You tell them.

Quadmama said...

I may actually start saying that.

Angela said...

I'm crying over here! I'm proud of how you handle this with your DD. She'll find her own way and voice about it, but it does hurt us as parents to watch them deal with it. Our Makena just had an xray to see why she's walking stiff, sometimes leading with one hip or just not walking "right". The xray was normal. Great. But as far as the doc goes that was all. I told the MA that I wanted to know what the next step for us is. That her walking has not improved. Maybe I'm paranoid over it, but I feel like I need to trust my gut and get her help now. I should've gotten more done sooner. I've taken her to the chiropractor 2 times, the first time she was pretty stiff after the adjustment, but the second time she walked much better. Since then she won't relax enough for us to do another adjustment, so I'm out of ideas there. Our doc called back to say she's sending us to a Sports Medicine Doc and physical therapy. I hope we're on the right track! So I hear you and feel your Mommy's heart. Thanks for sharing!

Sarah said...

Both of my twins have low muscle tone. Keira also has her right foot turn in when she walks. Our PT is thinking of some sort of brace for her. The only reason that bothers me is because I know how other people can be. People already comment - or at least stare - at her hemangioma on her forehead, which I hate as well.

I think you are handling it wonderfully.

Quadmama said...

One of my girls has a hemangioma. It's near her ear. For the longest time people either stared or told me horror stories about babies who had them. Now that she's almost five, it has faded A LOT... and since it's near her hair line and her hair has FINALLY grown it's not noticeable.

reanbean said...

I agree with Stephanie. Not a damn thing sounds like a pretty good response for any adult who feels the need to question or comment on a child's leg brace. Who are these people?

I'm so sorry to hear that others have had similar experiences themselves or with their children. I hope to do a better job of teaching my kids to be respectful.

Kim said...

Some people can be so clueless, it's mindboggling. I'd want to shout back, "What's wrong with YOU?"

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