Our annual Virginia Beach sandcrab picture. The scar pokes up about an inch or more above the suit.Philippe and I were stunned. I’ve asked a few times this summer if any of her camp friends asked about it and she said no. Turns out one friend asked and she refused to answer.
Later in the day, when Charlotte had calmed down and we were alone, I asked her why the question had upset her. It took her a few moments to articulate it, but she said, “Because I didn’t want R to think I was still sick.” And, I’m guessing, she didn’t feel she could adequately explain that she isn’t sick, that she is (as she so often says) “as healthy as she can be.”
Philippe and I were both dumbstruck. I still don’t know what to say.
Both R and Charlotte have probably forgotten about this conversation. I whispered to R that her dad could show her Charlotte’s website and she could read the answers to her questions. She’s an intelligent girl and meant well. She deserves an answer. Who knows? Charlotte’s story might inspire some of her life choices.
While the kids have likely moved on, my heart breaks for Charlotte’s broken heart and for her bruised spirit. This time the question was caring and considerate. Next time it might be cruel, teasing, or exclusionary. And, I have idea how to help her deal with this. She wants so much to be a regular kid. And in so many ways she is about as regular (and extraordinary) as a kid can get. But, no matter how regular she is, she’ll always have a “zipper” down her chest and she’ll always be a heart patient. Even if congenital heart defects are the number one birth defect, there ain’t nothing regular about that.
Charlotte's Journey Home 
HI-My son came home form camp with a worksheet where he had to complete the sentence "My family makes me feel". He ended it with normal. I cried.– not when he was looking. I asked him what he thought normal meant and he explained it acccurately. I asked him if he sometimes felt different and he said yes.there is no real way to shield them form this– but as a parent it is one of the most difficult things.Take care– you are in my heart-M
It was so fun to see Charlotte (and Bubba) this weekend. It makes me laugh that her bear is named Bubba. My son thinks that's his name, too.It was also fun to see Charlotte's parents. Someday come back and sing, okay? You're missed!
Wow! I'm reading your entire blog from 2005 to present. I am up at 1 am because I can't sleep. My baby is having her first truncus surgery in the morning. As I was reading your story when Charlotte was a newborn, I feel like you are telling mine! Charlotte is beautiful. Please pray for my baby Sydney tomorrow! I am going to pray for Charlotte everyday. She is an inspiration to all children with this condition and I am amazed with the time and dedication that you two have put into this blog. I would love to be added as a follower!
Michelle,We'll be thinking of Sydney. Where are you doing the surgery? BTW< I think you need to add yourself as a follower.Best of luck tomorrow.Ilene