I used to think that a feeding tube was a horrible thing, and the thought that we might be going down that road toward one scared me and made me cry. But the truth hit me hard when I realized that it's not about me, it's about what's best for Sadie and what Sadie needs. And Sadie needed to be fed.
I didn't understand.
One morning at a Foundation for Blind Children parent meeting I started to talking to another mom that I sort of knew. I asked if her daughter had a feeding tube. She said yes and proceeded to demystify the whole thing for me. She showed me how it works, talked about how easy it is to give her medicine, and explained to me how it just made their lives so much easier. By the time Sadie had her NG tube inserted (that was the tube she had in her nose that we had to tape to her face) and we realized what a good thing this was for our family, I was eager to take the next step and have the surgery. The fear had turned to excitement.
Now I am locked into this society of people with feeding tubes, or with children with feeding tubes. I never knew it was so common. I never realized all the different issues that can cause someone to need a feeding tube. And I don't think our society recognizes it well enough either. It's like the breastfeeding issue. Someone who is tube fed feels like they need to conceal themselves when they're being fed, because it's weird and might be offensive. We shouldn't be made to feel that way, after all, I don't ask the fat guy at Costco who's stuffing his face with over-processed chemical food to go eat in the car because it's offensive, right?
But just like when I was breastfeeding Sadie, when I tube feed her in public, I also choose a place that is not real obvious, and I try not to bring attention to what's going on.
I think if more people better understood that a feeding tube is a gift of life for a child with special needs, then it wouldn't be so awkward or embarrassing or weird. I hope that if you know someone who is tube fed, or even if you don't, you take some time to ask questions. Learn more about it, and support those who use it.
Feeding Tube Awareness Foundation has a website. Check it out. There's even a video to celebrate awareness week and you can celebrate along with so many the beauty of those who use a tube!!