Froggy: My friend at preschool has a car that's a Volcan-wagon.
While getting ready for bed the other night I was having a tough time with her g-tube. The adaptor wasn't fitting and it came apart and formula went everywhere. I put a towel down because I was too tired to change the sheets. An hour later I hear her calling and she is lying in bed in a pool of formula. After finding a new adaptor and taping the hell out of it, replacing the first towel with a second because now I was even more tired, Froggy says to me:
Froggy: I want a plain body.
FM: What do you mean a playing body?
Froggy: No a plaaaain body.
FM: What's a plain body?
Froggy: Without the mic-key. I just want a normal body. I want my normal body again.
I hugged her and told her I know and she fell asleep. Then I went into the livingroom and had a good cry.
I can't believe that at the age of five she is so aware of what 'normal' is. We were desperate to have her gain weight and so thrilled with her progress, I'd almost forgotten that she will have to live with this thing, this piece of plastic that pushes her shirt out and sets her apart. Her preschool friends love her and no one has said anything unkind. In fact her little friend A. jumped up and down and said, "I wanna see your mic-key!," when we got back from the hospital.
We made a decision for her body. We decided that she would have this hole in her belly. And even though I believe it was the best decision, it seems unfair to make a decision about someone else's body. She wanted a plain one and we give her this. I hope someday she'll understand.