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.
5 comments:
I wish my parents had done that for me. I was grossly underweight until about age 20. When I was little, in the 1970's, I'm not even sure a tube was an option. Sure the scar is going to suck later, but there is a direct correlation with BMI and PFTs. I don't ever remember a time when my FEV1 was over 67% (at age 18 when I started paying attention) That's just sad that I struggled with weight and lung function all my life because I was born two decades too soon. I'm 34 now and what you're doing is the best you can for you chronically ill daughter. Coming from a CF adult, I would have wanted this for myself if it was ever an option.
Tara, thank you so very much for your perspective. Even though I deal with CF everyday, I don't have it, I don't know what it really means. I'm so glad we have this wonderful community of CF adults and teens who give us the wisdom to take care of our little ones. Thank you and I wish you good health and lots of love. Elise
Even though I know you made the right choice - I can feel your pain. It's so hard when our babies are in emotional pain and there is nothing we can really do. We do what we can in their best interest...and we hope and pray we make the right choices.
Hugs to you, honey!
I feel your pain Elise. Sadly, this is just one of many more times to come when she'll say things that just send a pit in your stomach. But we're strong mamas and we'll get through the tough times. You're an awesome mom and I know you're doing the absolute best for your froggy. Love you mama! Susie
I can only kiss you and love you. And then kiss you and love you some more.
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