Not everyone gets to eat food in what most of us would consider the normal way. Some people eat through a feeding tube … young and old. To bring awareness to feeding tubes and the positive impact they have on a person’s quality of life, the Feeding Tube Awareness Foundation provides resources for those who want or need to learn more. Every year in February there is one week set aside to spread awareness on a large scale about feeding tubes. This year the 7th annual Feeding Tube Awareness Week is celebrated February 6-10.
This year I had my son help to spread awareness by sharing some of his thoughts on being on a feeding tube for the past three years. What he doesn’t share below is how much his quality of life has improved because of going on a special elemental formula and a feeding tube (he has a low profile g-tube) for his disease, Eosinophilic Esophagitis. Thanks to taking such a drastic step, we got our little boy back.
Here’s what my son has to say about his feeding tube:
The best part about a feeding tube is I am forced to slowly open up to foods I didn’t know about. Foods like tapioca, avocado, quinoa, pasta made from black beans, and so much more. It also makes my mom have to be super creative in how she cooks so I can enjoy food by mouth sometimes.
I say those are the best parts, but really, the absolute best part is grossing my mom out. I love to hold my syringe and make my formula go out of my stomach and back into the tube. Which gets me laughing, so even more comes up. One time I got to laughing so hard because I was grossing my mom out, that I caused my formula to come out the top and spill all over the table.
It’s also pretty cool that when I’m being fed with my pump, I eat and keep on playing or eat and sleep right through the feeding.
The worst part about having a feeding tube is not being able to eat a lot of foods. I’m allergic to almost all foods … top allergens, all meats, almost all grains, and so much more. Not being able to eat foods and having to rely on my formula causes me to get mad and sad a lot. I don’t like it when others are enjoying foods that I used to be able to eat. I get really mad when people eat pizza. I used to love pizza.
I’ve been fortunate since I got my feeding tube three years ago. I don’t feel like many people judge me or shy away from me because of my tube. Some people aren’t that blessed though. Some people are made fun of for their feeding tubes, but I think they are probably just wanting to be treated normal like everyone else. After all, I still do normal stuff that boys do like play Nerf Wars and video games; I’m a Boy Scout that loves camping; I have to do my homework and have to clean my room; I love to swim; and I still have to go to school unless I’m sick or seeing one of my many doctors.
Before I go, I want to let everyone know that the most important thing to remember about all of this is, “Don’t judge a book by its cover.” I may look like you, but I can’t eat like you. I may have special needs, but that doesn’t mean I don’t have feelings. If you are curious about what’s going on with me, just ask. Don’t stop, stare, and whisper behind my back.