Learning to eat was not about his health, it was about him meeting social norms. It was about me getting the approval of my peers. And in the end, my partner and I were not willing to risk inflicting emotional damage just to gain conformity.
I was recently in the grocery store with my son Bobby. A true charmer, I was not surprised when a bakery employee peered over her counter and offered him a cookie. He ignored her and I politely declined on his behalf.
“Oh,” said the clerk, pointedly looking up and down my body. I knew what she was thinking—what a hypocrite this fat mama is for denying her son a treat.
I didn’t explain. The truth is my son eats from a feeding tube that goes directly into his stomach. A variety of medical and developmental issues prevented him from ever learning to safely swallow food.
His journey to this point has been filled with harrowing medical interventions and frustrating developmental challenges. He is healthy now, in no small part thanks to the consistently ideal nutrition he gets from the medical formula he eats.
My role in his journey has been to make the best decisions for him that I can, blocking out a lot of the noise society feeds us about eating. And my goal has always been to prevent my own unhealthy relationship with food from negatively impacting him.
He received his first feeding tube at one month old. He was in congestive heart failure, breathing upward of 80 times a minute. He could not safely suck and swallow that way. I initially worried that Bobby would not bond with us if we didn’t feed him ourselves but that concern was misplaced.
My partner and I still held him constantly, both during tube feeds and in between meals. We talked to him, gave him baths, changed his diapers. One of us constantly stayed at his bedside through weeks-long hospital stays.
We bonded. The idea of bonding being tied to breastfeeding or, supposedly less desirably, bottle feeding didn’t play out for us. We kept him safe. He knew we were his people. This was a huge lesson that I clung to in the years that would follow—food is not love. Security and positive attention are love.
The fact that our society places so much emphasis on feeding as part of the mother-child bond in many ways avoids the tougher emotional places that parenting can take you to. Bobby’s feeding schedule has always been strict. He never gets hungry. So since he was one month old, he and I have worked through his unhappinesses without using food as a panacea. It has not been easy, but it’s made me a good emotional detective.
Unfortunately, what has been such a valuable lesson for me to learn on Bobby’s behalf has not translated into better habits for me. When he was in the hospital recovering from multiple open heart surgeries, I took comfort in eating McDonalds multiple times a day. Rather than dealing with the roller coaster of a long hospital stay, I used food to induce a stupor.
It didn’t work. The out of control eating just added physical discomfort to my high anxiety. But I didn’t stop eating. If anything I just ate more because for as much as I intellectually understood the fallacy of food as comfort, I emotionally didn’t have the resources to do things differently.
I have always relied on food to dull my emotions. As a kid, I was stuck in an abusive household with no reliable ally except food. I perfected a regimen of carbs, sugar, and caffeine that kept me alert enough to function but still created enough of a fog to obscure the reality of my environment. All my life, emotional upsets have triggered binge eating. Like any addict, I know my behavior doesn’t solve anything, but it makes the situation tolerable from moment to moment.
I have managed to lose weight in the past only to regain it. I know how to diet. I don’t know how to disconnect food from emotion. My son has the benefit of never having connected the two to begin with.
We originally expected Bobby’s feeding tube to be temporary, something to sustain him until his heart was repaired. When he was 3 and his heart was healthy we tried oral feeds. Unused to food in his mouth, he was hypersensitive to the texture and feel of food on his hands and face. He could not coordinate a swallow.
Most people think eating is an instinct, something our body automatically knows how to do. Sucking and swallowing are instinctual, but the rest we learn. The months of nursing allow us to strengthen the muscles we use to swallow. Babies learn to use their tongue to control the food in their mouth, to push solid food away from the airway.
Bobby did not have the strength or coordination to do any of those things. So when at age 3 we tried to feed him, he hysterically tossed his head back and forth to avoid the spoon. If I put a drop of food on his lips he screamed until I wiped it off.
We tried therapist after therapist. Methods differed but the central goal was always to convince him to eat food he didn’t want. When he spit out food he was reprimanded, sometimes being turned away from the table.
Many people in my circle assumed that I was the problem. That I needed to be firmer with him. “Quit feeding him through the tube and then he’ll eat,” they said. I felt like an inept mother.
I remember one horrible afternoon when I placed him in time out every time he tossed his head back and forth and refused the spoon. At the end we were both exhausted and no food had been consumed.
And I realized this was not about defiance. Bobby wasn’t refusing to eat because he was stubborn, he was refusing food because the thought of having even a drop of pureed food in his mouth was terrifying.
My partner and I agreed at that point that we were not going to push oral feeding at the cost of creating an eating disorder or some other emotional scar. Starving a child without the motor skills to eat orally is abuse. Reprimanding a child for not taking offered food is a prime way to create a long-term eating disorder.
Bobby can live a healthy life with a feeding tube. It does not restrict his activity level. His diet is specifically formulated to meet all of his nutritional requirements—it’s actually much healthier than what most of us eat on a daily basis.
Through years of invasive medical procedures, we vetoed Bobby’s protests. I have physically restrained him countless times, for interventions he needed to save his life. But learning to eat was not about his health, it was about him meeting social norms. It was about me getting the approval of my peers. And in the end, my partner and I were not willing to risk inflicting emotional damage just to gain conformity.
Food is not love and Bobby does not have to eat to make me feel better.
Now 7, Bobby participates in meals. He swallows small bites of smooth food, like mashed potatoes. He sucks the juice out of fruit. He bites Cheetos in half and spits out the pieces into a bowl. He gets none of his calories from this ritual, just some sensory enjoyment. He has fun.
I am still fat. I am fat and proud to be raising a son for whom eating is overwhelmingly about the intake of fuel for his body. I know some day he may care that he doesn’t eat orally, that it may become a point of self-consciousness. But I would rather deal with that than the knowledge that he has ever taken one bite just to make me feel better about my parenting abilities.
Feeding Tube Awareness week is February 7-February 13.
Anne Penniston Grunsted writes about parenting, disability, and family life from her perspective as a lesbian mama. She has been published in The Washington Post, Brain, Child Magazine, Mamamia, and won the 2014 Nonfiction prize from Beecher’s Magazine. She lives in Chicago with her partner and son.
Photo courtesy of the author
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