Sammi trailed a spoon through a bowl of hot cereal at the kitchen counter. At 5, she was eating oat bran with hemp milk, for the protein. She stared into the bowl, drawing lines in it as the cereal got colder and the hour grew later.
I kissed her duck-fluff hair and murmured, “have another bite, sweetie.” Then I returned to the stove to mix starches with bean flours, making something approximating bread for the lunch that I knew she would pick apart in a few hours.
A month earlier, after years of the catch-all label of “failure to thrive” — for her slow growth, slow eating and unrelenting gastrointestinal reflux — she’d been given a diagnosis of a rare esophageal disorder, eosinophilic esophagitis.
The treatment protocol from her team of experts at a major children’s hospital included food restrictions, eliminating dairy, soy, eggs, wheat and nuts. My whole life had become food: shopping and cooking, always searching for the perfect combination of proteins and gluten-free grains.
The disease was incurable, and my view of the long game was murky at best. Teary at my computer that afternoon, I arranged a phone call with a woman whose daughter had the same diagnosis. She told me not to count on keeping the limited diet I was painstakingly creating from the foods we had left. “Eventually, these kids all lose most foods,” she sighed.
Her daughter, after years of food trials and prescription nutrition drinks, had four actual foods in her diet: sweet potatoes, apples, bananas and, somewhat surprisingly, shrimp. Before she got those foods into her diet, the woman explained, her daughter just drank the prescription formula. “I ate a turkey sandwich over the sink every night,” she told me as I quietly wept.
Fearing that Sammi would also lose most foods, I started looking online for ideas for food-free family traditions. I found photos of cardboard birthday cakes and read about family holidays where people stole off one by one to gobble treats while someone else kept the food-free child company with video games and art projects. “That’ll be me,” I thought, steeling myself for life outside the mainstream.
For the next year, we added one forbidden food back into Sammi’s diet every six weeks, followed by biopsies of her esophagus.
During each procedure, her esophagus was filled with air so that the endoscope could pass through and gastroenterologists could take several biopsies of the esophageal walls, looking for eosinophils, the cells that give the disease its name.
Each time, I entered the operating room at her side, singing her to sleep as her eyes fluttered and her mouth frothed from the bitterness of the sevoflurane gas in the mask over her face. The anesthesiologist waited for her eyes to close completely before ushering me out of the room and starting an IV. When it was over, I kissed her flushed cheeks in the recovery suite and mentally planned the soft meal I’d feed her that night.
I punctuated everything I said to her that year with “take-a-sip-of-your-milk-sweetie.” “How was school? Take-a-sip-of-your-milk-sweetie.” “Do you need to go potty before we leave? Take-a-sip-of-your-milk-sweetie.” “Bedtime! Take-a-sip-of-your-milk-sweetie.” No day’s quality was measured with any barometer other than the milk left in her cup. An empty cup would find me falling asleep easily. A nearly full one would send me into an under-the-surface rage, cursing the diet as I tossed and turned.
Oddly, Sammi’s esophagus appeared healthy in biopsy after biopsy. I reveled in every food that passed the test. Still, the words of the mother on the phone haunted me; I had another child and a tradition of family dinners and a large extended family that ate together with gusto.
With every step closer to the end of these trials, I grew angrier that Sammi was still not eating well. The days of endless chopping, sifting, washing, mixing and running to the store for obscure ingredients, all in the service of keeping my tiny daughter from disappearing, were wrecking me.
After nearly a year, every banned food had been added back into Sammi’s diet and her esophagus looked inexplicably perfect. The doctors threw up their hands in surprise. No one understood it; no one tried, lost as they were in the celebration of this first child healed by diet alone. Given six months reprieve from diets and endoscopies, I sank into a seat at my kitchen counter and stared at my stove in disbelief.
Around me, my community celebrated. We were feted at restaurants, friends’ houses, and in our own home, where I pushed my labeled containers of arrowroot starch and dairy-free “milk” powder to the back of the cabinet. “She’s better!” people cheered, but I watched her, still worried. She didn’t seem “better” or even different from when we’d started.
She often said the food was coming back in her mouth, but we found no evidence of acid reflux.
What was all that gluten-free, dairy-free, soy-free, egg-free, nut-free love for? By the next summer, I was still anxiously waiting for her to move past “failure to thrive,” which I’d always heard as “failure to feed” despite my hundreds of hours logged at the stove. Hours she spent playing, learning and sleeping were hours I worried she could have spent eating. Nothing had changed.
And then, one winter day, my suspicion was validated. Almost by accident, we learned that the diagnosis Sammi had been given was wrong. She did not have an esophageal disorder at all, but a structural malformation of the anatomy in her chest, squeezing her esophagus nearly shut in several places. The air pumped into her esophagus for the biopsies had masked the problem.
What Sammi needed was not a special diet but a very specialized surgery. What I needed to do was not cook and feed, but sit and love at her side as she recovered from the single operation that made her better.
I had loved her with food for eight years. Now, the expression of my love needed to change.
When Sammi was well again — recovered from the surgery, growing and eating normally — I looked up from the stove to find our relationship steeped in my anxious need to feed her and my deep shame that I had struggled so to help her grow. When every day ended with “how was school?” without being followed by, “take-a-sip-of-your-milk-sweetie,” there was more space for knowing each other. Holding hands as we walked home, I began to see my daughter as more than a belly to fill. She was delightful, her bright smile and curious mind awake and, finally, fully fueled.
To friends, I marked a turning point for Sammi as the day, at age 9, when she first ate a sandwich. To myself, the secret turning point was the afternoon I held her hand while we lazily read poetry together on the couch. Until that day, I didn’t know she liked poetry at all. I suspected then that I was eight years behind in authentic love for her — the real me and the real her, meeting at last.
“Do you think I’m more empathetic because of all the medical stuff that happened to me?” she asked me recently. She’s now 13, and it’s been years since the operation that changed our life.
I told her yes, I do. The truth is, my own empathy stretched and made stronger by our strange journey to know each other, I see us both so much more fully now. We sit side-by-side at the kitchen counter, absent-mindedly sharing a bowl of popcorn, chatting. It is where I always wanted to be. Dinner, for now, can wait.
Debi Lewis is a writer from Evanston, Ill., at work on a memoir.
