I was out of town and standing in a long line, sandwiched between two mothers with their children we all started a conversation. Talk was typical enough, but quickly changed when one of the mothers bent down to check her little one. It was subtle, but she felt her child’s belly in a spot I knew so well. When she spoke again she told me something I had already guessed: her daughter had a “button” and it has been leaking lately.
I knew exactly what she meant and simply replied that my daughter had a feeding tube for almost two years (a “button” is a type of feeding tube). I told her about our two-week stay at the Seattle Feeding Clinic, we griped about our medical teams’ focus on weight and laughed about how our tube-fed kids were never denied any kind of food they wanted to eat (especially fattening ones).
Reflecting back on that incident I was at first surprised at the odds that I would meet another tube-fed child so randomly when on vacation. But what perhaps shocked me more was the confused look on the third mother’s face. Was it horror? Pity? Or was it simply lack of awareness?
February 5-11th is the second annual Tube Feeding Awareness Week. The goal of this week is to raise positive awareness of tube feeding as a life saving, medical intervention in hundreds of thousands of tube-fed children and adults. And while I only have experience with feeding a child this way for two years, I can say that those years were some of the hardest I have ever faced. The daily vomiting, the constant doctor appointment, the threat of staph infections, the fear of aspirating, the accidental pulling the tube out, the extra equipment, the huge amount of time it took to prepare her food and feed her, the isolation, and the overall stress it put on our lives was tremendous. I dreamed of a day when we could finally wean her and am still unbelievably overjoyed that she is now fully eating. But… I digress into the negative…
There is one, undeniable, incredibility positive, aspect of Gia having a feeding tube: it allowed me to feed her when she could not feed herself. I was able to give her my expressed breast milk when she could not nurse and blend solid, healthy, food for her when she was not capable of eating. She needed time to develop her feeding skills and I am very thankful for the medical intervention. Without the tube, well, she certainly would not be the happy toddler she is today.
It’s been a year since Gia and I attended the Seattle Feeding Clinic intensive wean program and I am still quite emotional when I read my first Mamalode.com essay about it. I continue to have a love/have relationship with the feeding tube. I also realize how lucky we actually are; there are many kids and adults who will never be medically cleared to orally eat and being fed through a tube is just a part of regular life. As much as I might complain about the tube feeding, I know if Gia did not become an eater that would be OK too. Our family would adjust. The truth is, if tube-feeding was the worst medical issue she has in her life, I’d be pretty darn happy because it really isn’t such a big deal; just a quicker way to the stomach!
If you could do one thing, during Tube Feeding Awareness Week take the time to reflect on those kids and adults who need to eat via a feeding tube, explain it to your kids too. Realize that those are individuals who simply ‘eat’ a bit differently and don’t deserve to be stared at, mocked or shunned. If you’ve been meaning to do something extra for families with a tube-fed kiddo, now would be a great time. Help, a sympathetic ear, or a real hug is always appreciated. Living in an eating world when you or your child can’t is very difficult, understanding and sympathy can make all the difference.
And the next time I find myself in the middle of a conversation about feeding tubes I will do my part and tell our story because I believe compassion begins with awareness.
To find out more please visit: http://www.feedingtubeawareness.com/