Day 2: #GratitudeWritingChallenge

One of my sons has a MIC-KEY button (feeding tube). He’s had it for about 8 years now. Even though it’s hard to admit to myself, let alone everyone else, I’m going to be completely honest and tell you I love it and I absolutely hate it. Ultimately, I am undeniably grateful for it.

I’ve written previously about my son here. I haven’t shared much since because I feel I’ve written all I can without invading more of his privacy, but I can say we have used his feeding tube for administering life-saving medication that would have otherwise had to be administered via IM injections (We had those, too, but minimally compared to the frequency of using the tube.) and for supplemental feeds because he has so much trouble eating and maintaining a healthy weight. I hate to think of how bad things would be without that tube.

Most nights between 10-11:00, my husband or I begrudgingly make our way to the kitchen to prepare his nightly tube feed. His formula is $10 per serving so we have lots of feelings about that, too. But I’ve recently noticed how the feelings I have while preparing the feed in the kitchen transform during and after the task. While working quietly in the kitchen, I think about how I’d rather be sleeping and how this interruption is impacting my overall health. I think about the amount of supplies it generates which we have to wash and maintain and store and fight with insurance to provide. It doesn’t take long to do it; it’s the interruption, the timing and the obligation that suck so much. (Ugh, how’s that for honesty?) I think the resentment comes more easily when I’m tired. In our dark, sleeping house, I glide into his room and set up next to his bed while he sleeps. Then, while feeding his tube, I can’t help but think about the nutrients and calories I am administering, which he so desperately needs and what a blessing the tube is. And I give thanks for his GI specialist and all the support we’ve received over the years. And gratitude for how far he has come washes over me. I’ve started to see his tube feeds as the same as we do for an infant. Whether it’s nursing or bottle-feeding, it’s necessary and they are dependent on their caregivers to do their duty. Thoughts still come such as, “This is so unfair. I’m so tired of doing this. He’s not a baby anymore; I never expected to still be doing nighttime feedings for my 9 year old,” and the one I regret the most, “I’m so jealous of parents who just get to chill after their kids go to bed every night.” But these thoughts seem to pass more quickly lately in order to give way to the gratitude.

So while the goal is to eventually remove the tube, it’s a long-term goal. In the meantime, I am so grateful for such a wonderfully designed tool that allows us to provide so much health and life to our kiddo. There are a lot of people in the world who benefit from feeding tubes. We are not alone in this. I am sure we’re not the only ones who have such mixed feelings about them. For me, this is one of the things for which I am most grateful. A true life-saver, for sure.

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