Life With a Feeding Tube :: An 11-Year-Old’s Story

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Life With a Feeding Tube :: An 11-Year-Old's Story | Columbia SC Moms BlogNot 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. 

Life With a Feeding Tube :: An 11-Year-Old's Story | Columbia SC Moms Blog

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. 

Life With a Feeding Tube :: An 11-Year-Old's Story | Columbia SC Moms Blog

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. 

Life With a Feeding Tube :: An 11-Year-Old's Story | Columbia SC Moms Blog

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. 

Life With a Feeding Tube :: An 11-Year-Old's Story | Columbia SC Moms Blog
My teddy bear has a feeding tube, just like me!

Does your child or someone you know have a feeding tube? What are their thoughts on day-to-day life?

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Brandi Cade
Brandi Cade is a Christian, wife, mom, and Instructional Facilitator at a local elementary school. She is the youth coordinator and also teaches Sunday School for K-5th graders at her church. She married Mark in July 2004. Together they have 3 children: Bradley (10), Tori (8), and Aubrey (4). Bradley and Tori have taught her about parenting children with multiple medical needs. Fortunately their youngest is simply full of life and keeps Brandi and Mark on their toes that way. Brandi holds a BA in Early Childhood, an MA in Curriculum & Instruction, and two Certificates of Advanced Graduate Studies in Doctoral work in Instructional Leadership and Educational Leadership. As an Instructional Facilitator she works with teachers as well as students on best practices for learning in the classroom. Brandi loves the beach, music, reading, writing, blogging, sewing, and her new found interest: Bible journaling. Her newfound interest lead her to create the group Scripture Sketchers for local Bible Journaling fans. She hopes to turn this into a business within the next year or two. She is also a Beachbody Coach and works as an Independent Damsel Pro for Damsel in Defense.

2 COMMENTS

  1. Thanks to you and your son for sharing your story. My youngest had a feeding tube for a while. Before her experience, I had very limited knowledge of g tubes. There was a learning curve, for sure! She wears her scar proudly and often talks about her g tube.
    I loved the story about the food coming over the syringe and spilling on the table! We sure had many messes, too.
    <3

  2. I am a cancer survivor…yes, thank you God…have had feeding tube for 10 years now. I use Ensure for my main nourishment. I am able to I take by mouth soft consistency foods, like yogurt, ice cream, smoothies, etc. Because of being over radiated, my teeth are fried, my throat is closed and I suffer from IBS….but I’m still here, so I try not to complain….but, it sure brings to your knees just living with a feeding tube.
    I’m blessed to have daughter, sister, family and friends who keep booting me in the butt and active. Sorry about any child and their family. God Bless you all. PRAYERS

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