Sometimes I forget that Charlotte is not a regular kid. Yes, every morning and evening as I help her dress for school or get ready for bed, the scars remind me. In between those moments, it is easy to forget a lot of our struggles and take for granted that she is a healthy kid who happens to also be medically complex.
Philippe is reminded (haunted?) by her past struggles at mealtime. Those days when she gobbles up everything in sight do cause us glee and gratitude that probably is a bit exaggerated. The days when she behaves like a regular 4-year old and refuses to eat make us crazy because we are wired to force-feed. We work really hard on our mantra “just a regular kid,” but it can be hard.
What most slaps me across the face, however, are the regular-kid moments that are just a little bit not-so-regular. Let me try to draw the picture for you:
Charlotte loves to play doctor and she loves to pretend that she is the mommy taking her child to the doctor. One day last week the scene went something like this:
“Mommy, I’m going to take my baby to the doctor.”
“Okay, sweetie. What is the appointment for?”
“Well, she was just born* and now she needs to go for her surgery.”
“Her heart surgery.”
“Charlotte, sweetie, you know that not every baby has to have surgery when it is born, right?”
“Yes. My baby has to have her surgery because she is very little.”
“What kind of surgery?”
“Heart surgery, just like me. Her heart was broken when she was born, so I’m taking her to the doctor for surgery to fix it, like me.”
Charlotte has an imaginary bear named Purple Bubba who figures regularly into her pretend play and creative scenarios. Usually he represents her aspirations and can easily do things that scare her or that she’s not quite ready for (like swimming, but that’s another story). Sometimes Purple Bubba makes my heart stop:
“Mommy, Purple Bubba is chewing all his big boy food!”
“Wow, that’s great. But, I am not surprised because you always tell me that he is a good eater.”
“Yes, but you know, when he was little he had a tummy tube. I had to feed him through his stomach.”
She’s a regular kid, alright, complete with giggle fits and temper tantrums, moments of wonder and profundity, and growth spurts that astound. But, she’s never going to be quite regular, is she?