What is "normal" anyway?
Celia gave me a story she wrote, and I want to share it. She's so matter of fact:
Celia Rosemary Falciani is eight years old. When I was born I was a normal person. On my first birthday I had a vanilla cake with ladybug frosting. I ate it and the next morning I was sick so I had to go to the Emergency Room. They figured out what was wrong with me. They said I needed a tube. So they gave me medicine so I whould (sic) be sleepy. When I was sleeping they took a sharp knife and cut a hole in my belly and placed a tube in the hole. So I had a lot of allergies so they gave me a medical bracelet. They gave me a tube monkey with a tube.
That's how I got my tube.
Ok, it skips over a bunch of details, but that's about the gist of it. One of her friends wanted to know how she got her tube, so that was her story. Sure, there are days when she struggles, but she really is good -- she doesn't know any differently. A couple of years ago, we saw a child with a feeding tube backpack like hers, AND a trach. She was indignant that he had a tummy tubey AND a neck tubey -- unfair!
When Damien first got his ng tube two years ago, the first question the big kids asked was "When is he getting a 'real' tube?" ("Real" meaning g-tube...last I checked when I put it in, it wasn't imaginary...). When he eventually got a g-tube, Celia wanted to know when he was getting a "good" tube.
Today, the little boys and I went to Walmart to pick up some last minute supplies for our trip to Disney. A lady asked them their names. Jude said, "I'm Big Brother Jude." Damien grinned, hiked up his shirt, and said, "Tube!" I just shrugged and said, "It's new. Some kids show off new sneakers...he's showing off his new tube."
I'm thankful they don't see themselves as "different." Some kids drink with a straw in their mouth, they just drink with a straw right to their tummies. That's their "normal."
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