MADISON, Wisconsin (WOMENSENEWS)–When my grandmother was alive, one of my favorite things to do was make Christmas cookies with her. She’d do the making and baking and my sister and I would do the decorating. We had a lot of fun. After the cookies were ready to be cut, my sister and I got Christmas cookie cutters and cut them out. We made Santas, stars, trees, gingerbread men. It felt really good to be a part of family traditions. It is like an art, decorating cookies- like, edible art.
The only part I don’t have a memory of is how the cookies tasted. This isn’t because anything is wrong with my memory. I just can’t eat. I have CHARGE Syndrome, a congenital disorder that means I have hearing loss, vision loss, a swallowing disability, balance and mobility problems and breathing problems. Three times a day, I use a feeding tube. I recently learned how to hook up my feeding tube myself, but for the past 19 years, my family and helpers took care of it for me. The tube is a little plastic button with a plug on it, and I have a pump in a small backpack that can be connected to my stomach. When I was a baby, I had about 20 surgeries and procedures. One of them was to make a little hole in my abdomen so that I can eat. From the feeding tube into the hole in my abdomen goes things like water, prune juice and a special formula that ensures I get all of the necessary nutrients. It’s not about flavor – no donuts or pizza in the tube for me – just about nutrients.
I don’t really miss food because I don’t remember it. I still get to lead a cool life and go to restaurants and parties and other places where food is served, but I just don’t eat.
While writing this piece for Teen Voices’ Girl Fuse series I got the opportunity to meet another girl with a feeding tube. She was born without an esophagus so she’s been using a tube her whole life, like me. She has more issues with how her stomach looks than with the tube itself. After all, “The tube keeps me alive,” she said in an email to me. But her stomach doesn’t have any muscle and there are a lot of scars. And, of course, the tube is there. She has a good relationship with her tube but it has put a strain on some of her friendships. ”I affects me as a teenager,” she said. “People are unsure of how to handle the feeding tube, or any of my other medical issues. Simply ‘cause of the unknown. And I’ve lost many friends along the way.”
Nina’s the first girl I’ve met that has a feeding tube like I do, which is pretty cool. It was nice to compare our stories and feel connected to a larger community. Maybe that is the connection I crave when I sit in the kitchen while my family cooks.
Sometimes I make pancakes for my family with the help of my dad. I’ve spent my whole life not caring about food, yet sometimes I want to help make it. It makes me feel proud of myself. I’m not saying I want to be a chef, but being in the kitchen when my dad is cooking makes me feel closer to him. I can touch the food and see the food, but I can’t smell it. It doesn’t bother me, because I don’t know what it’s like. Sometimes I pretend that I can eat. I hold an invisible sandwich and bite.
