There's the life you lead when you have healthy children, the life you lead when your children don't have special needs: you feed them stuff; you worry about general safety; you take them to routine appointments and weather the occasional blip on the screen. And there's the life you lead when you don't take health for granted, when part of daily maintenance is providing nourishment through your son's feeding tube. This week is Feeding Tube Awareness Week, and this post is in honor of my nephews and their mom and dad, who live their unexpected life with aplomb.
Perhaps you've thought about feeding tubes. Many of us did during the extensive media surrounding Terri Schiavo and the court's decision to support removal of her tube. The feeding tube played a prominent role in my grandmother's and mother-in-law's post-stroke condition and prognosis. We are more likely to associate feeding tubes with end-of-life narratives, less likely with beginning-of-life or daily-life scenarios of small children.
My nephews' tubes are hardly the most interesting things about them, but awareness week reminds us how important it is for questions to be answered and for curiosity to be satisfied, so those other belly "buttons" to the left of the ones they were born with don't distract too much from getting to know who the brothers truly are.
suspected mitochondrial disease. When mitochondria, the "powerhouses" of the cell, don't function properly, energy production to muscles and organs is affected. In Jack's case early on, this presented like reflux, but it's clear now that a neuromuscular issue is affecting the boys' gastrointestinal systems, making swallowing, digesting, and moving the bowels difficult to nearly impossible.
Normal eating and drinking poses the risk of aspiration and infection; hence the insertion of both boys' feeding tubes (the gastric tube is inserted into the stomach, and the jejunostomy into the intestines; Jack has a g-tube and Charlie has both g- and j-tubes). Charlie receives all nutrition through his tubes. Because of serious motility issues in his stomach and intestines, Charlie is on what is called a "continuous feed" (18-20 hours per day) to help his body manage volume and absorb nutrients comfortably. He carries a backpack with his feeding bag inside for much of the day. But he runs, jumps, and plays like the happy, active toddler he is.
My sister and her husband and sons have meals together as a family, because, as my sister explains, "meal time is about more than food; it is about being together." But mealtimes are challenging. Charlie can't eat more than the occasional "puffs," so he pretends, with his own plate and fork and spoon. Or he sucks on a lollipop. Sometimes he plays on an iPod to distract him from begging for crumbs. Because Charlie isn't not hungry; Charlie wants to put food in his mouth. Rather than pity him, though, my sister and her husband are matter-of-fact about his reality, and avoid restaurants.
Feeding tubes mean cleaning the stoma, or "button," daily to stave off infection. There's venting and leaking and flushing to manage as well, and fashioning jammies with a hole for the tube to feed through (my sister sews these for other children, too!). There are lots of appointments, and urgent care visits when a virus strikes. And suppositories. Also those.
But life, otherwise, is as normal as can be, with preschool and rambunctiousness and tricycles and tantrums. Taking one day at a time, there's no dwelling on what it will be like or feel like to be a grade-schooler, tween, and teen who doesn't drink juice boxes and have burgers with friends. But the boys will have role models, and reminders that, ultimately, we eat to do, and we eat to be...which is far more important than a plate of fries and milkshake.
Do my nephews a favor this week, though, and don't take that tall glass of water for granted.