Today was another first for Evan...first time using his walker in the grocery store (he's always had a ride in the cart or stroller before). I think he is quickly getting used to his new-found independence--he has discovered he can go right up and touch things on the lower shelves, and he doesn't necessarily have to go the same direction that mom or dad want him too...
Evan--or more correctly, his walker--attracted a lot of attention. It's ironic too, because when he is just sitting in the shopping cart or stroller nobody notices his differences. But now that he's trying to behave more like a typical 2 1/2 year old, now it's more obvious.
Most people just watched him, or did a not-so-subtle double-take. One man came right up to us and said "I know you probably get asked this all the time, but what's wrong with him?" Jeremy tried to briefly explain CHARGE syndrome and why Evan needed a walker. I realize this man was just curious, and didn't ask in a mean-spirited way. But my first thought was that it doesn't matter how many times you've been asked the "What's wrong?" question, it doesn't lessen the sting and it doesn't change the fact that it's still rude. It's sad, but those kinds of comments make me almost glad Evan is Deaf, so that we can prolong the phase he's in right now--walking along proudly, oblivous to anything anyone might say.
Oh, and Evan is challenging Max and Burke to a walker race next time we all get together...
What is CHARGE???
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
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1 comment:
If anyone asks me what is "wrong" with Kennedy, I usually preface my answer by saying, "Well, we don't consider anything 'wrong' but she does happen to have CHARGE syndrome..." and then go on to explain as little or as much as I like about it.
And, if you do get the race going between those three, take a video, I want to see it!
Happy Belated Mother's Day!
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