Still Miles to Go

[This is the fourth and final part of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Phew! Ladies and gentlemen, we’ve made it through the world of tubies! I gave you an update on my own situation, a small glossary of terms commonly used in the tubie world, and an overview on types of tubies (and the corresponding who, what, where, when, and why of each). And now I’m to the most important part: the impact. The “so what?” So how is life with a tubie different? Well, everything is different, but nothing has really changed. Confusing? Obviously, as a person, I haven’t changed, but how I interact with the world has. Some days that change seems insurmountable, but on other days, it doesn’t make a dent. Most days, however, it’s somewhere in between.

I know I’m not the only one who feels like this. And maybe it changes, becomes less (or possibly more?) difficult as the years pass. I don’t know. I’m not there yet. But I do know that the good that comes with it (at least in my case) far outweighs the bad.

Because this series has been full of my words (and I know listening to the same person drone on can get old), I wanted to share the words of my friends who have been so helpful with this process. I asked them what they want people to know about feeding tubes and the people who have them.  Here are some of the responses:

Tubes can help in many ways, they’re just not needed for feeding purposes. – Terry (Matthew’s dad; 6-year-old Matthew has a G-tube)

I think people should not be afraid of feeding tubes because they can be a huge help and blessing. At first they look kinda scary and … they do hurt at first but once you get used to it they help you out a lot and then you kinda forget that it is there. – Jaden (who has a G-tube)

In particular it is less common for “adults” (I’m 21) to have feeding tubes, so I get a lot of looks when people notice my tubie. I would want them to know, if they are so curious, they should just ask! I wouldn’t mind explaining, because knowledge is important. –Sarah (who has a J-tube)

While not being able to eat or drink has sometimes been difficult for her, she loves her “tubies” and understands how important they are. Though only 4 years old, she is happy to explain their purpose to any who ask. –Jessica (mom of Eithene who has a GJ-tube and a broviac central line)

If you ever see someone with a tube in their nose or someone feeding a child or adult with a tube, just know that it is saving their life. So please help spread awareness, ask questions instead of just staring. We will be happy to answer them. Feeding tubes are not catchy. –Nicky (Mom of Isaiah and Avery, who both have tubies)

Getting a tube and having a tube may not be an easy journey, but my journey came with the biggest blessing: I didn’t go through it alone. My “tubie sis” Sarah had her J-tube placed just a week before I had my GJ-placement. Having someone navigating this crazy journey by my side has made all the difference. We’ve become incredibly close and always have someone to call if we’re having a rough go. I guess it’s because of this blessing that I’m so willing and eager to share my story. I hope it helps others not feel so alone in their personal journeys through the tubie world. And I hope it helps the general public understand how amazing these little helpers can be.