A Perfectly Innocent Question, or more ruminations of Charlotte as a "regular kid"

Our annual Virginia Beach sandcrab picture. The scar pokes up about an inch or more above the suit.

Charlotte has a couple of bathing suits and sundresses that expose her heart surgery scar. She even has one tankini that shows off her heart scar as well as her g-tube stoma. Every now and then when she chooses one of these outfits (and these are her favorite bathing suits), I’ll ask if she minds that the scar or scars show. Her standard response is, “Not at all.” Just recently she has begun saying, “No, of course not. I love my scars.”

Charlotte knows how she got her scars. She pours over her baby photo albums. She has asked me to explain her heart defect and how it was repaired (the book It’s My Heart is an indispensable resource.) And, she was recently among the honored child-guests at the Saving Tiny Hearts Society gala. We’ve rehearsed what she might say if someone asked how she got the scar.

We both really thought that she was as comfortable as a five-year old might be with her body and its difference.

Until Saturday.

This weekend a lovely, charming, intelligent, and curious eight-year old friend asked Charlotte what her scar was. I didn’t hear the exchange or how she phrased it, but I imagine it was innocent and nonjudgmental. Suddenly, Charlotte came running into the house, angry, telling me that she didn’t want anyone to talk about it. She was stomping her feet, very insistent that she would not talk about it.

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.

4 thoughts on “A Perfectly Innocent Question, or more ruminations of Charlotte as a "regular kid"

  1. 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

  2. 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!

  3. 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!

  4. 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

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