I can still remember how it felt to have strangers stare at my newborn wondering what clearly medical thing was sticking out of his nose. “Is your baby OK? Shouldn’t he be in the hospital?” asked the woman behind the register at The Children’s Place. “He is fine, we just came from there,” was my response. I didn’t have it in me at that time to say more or educate about NG tubes, tube feeding or vomit, reflux and aspiration.
Then there were the people who stared at the backpack I clipped onto the park swing, or the people who thought he was on a leash when I followed my new walker carrying his backpack. Helpful relatives who clearly thought we needed new doctors or to try harder to feed him. None of these things in and of themselves was a major affront. However, the collective experience weighs hard on you. It is like each little thing pushes you closer to the edge. There is always that lingering fear that someone is going to say something inappropriate to you or think less of your ability to parent. And, much of this happens when you are at your most vulnerable—when your child may be undiagnosed or you are still in the thick of testing and hospital stays. It happens when you need support and understanding the most.
Now, I kind of wish someone would say something to me because I would give them an earful.
Awareness matters. It matters that people understand something about feeding tubes other than Terry Schiavo or that silly KE diet. It matters that they know there are well over 200 medical conditions and diseases that can lead children to need extra nutritional support through tube feeding. It matters that they realize that these conditions aren’t always visible, and that looking “normal” doesn’t mean there isn’t more going on inside. It matters that they know that the feeding tube can be thought of like any other medical device in that it helps you do what you can’t do on your own…for now. It matters that they understand that the benefit is that children get the nutrition and hydration they need to grow, develop and thrive.
Awareness would mean more support and understanding. People would know about tube feeding in children. It would mean being in public and being able to feed your child without comment. It would mean that strangers might ask questions, rather than make snide remarks. It would mean that when you are told your child needs a feeding tube, it doesn’t scare the poop out of you. It would mean that friends and family might spend their time trying to help you, or understand more about what your child is going through medically, rather than questioning your judgment or parenting skills.
Awareness is the key. How many of us ever heard of a baby or a child having a feeding tube before our kids? I know I hadn’t. And, when I first read about it, I wasn’t all too pleased about it. It was scary. If there had been a Feeding Tube Awareness Week then, I would have known I wasn’t alone. I would have known there were hundreds of thousands of people who are tube fed in the US. I would have known that there were resources to connect me to other parents. What if my friends and family had read an article about it in the newspaper or saw a family on TV talk about tube feeding? I wouldn’t have struggled in those early days with figuring things out on my own and dealing with my complex emotions, too.
One of the reasons I feel so strongly about sharing our stories and raising awareness is that it helps us all. It is cathartic to share our daily experiences and to be better understood. But more importantly, it builds knowledge among the general public. Awareness matters not only to us, but also to those who come after us.
For more information on Feeding Tube Awareness Week, please go to http://www.feedingtubeawarenessweek.org/