Parents are tasked with feeding their children on a daily basis. It’s usually a mundane responsibility and just one of the many things they do throughout the day. They don’t have a second thought about it.
But what if a child is medically unable to eat? What does a parent do then? For Debi Lewis, she was consumed by the struggle to feed her daughter, Sammi, for the first nine years of her life. From birth, Sammi had problems with swallowing, and the label “failure to thrive” was placed on her medical charts.
Today, Lewis is the author of a new book, “Kitchen Medicine: How I Fed My Daughter Out of Failure to Thrive,” about her issues with trying to feed Sammi. Each chapter is named for a different type of food the author explores – like chickpea soup, matzo and fat-free cream cheese and pickles – and how it affected Sammi and Lewis’ entire family.
“I don’t know what it was during all those years that kept me from turning on food, from hating it and resenting it, but instead of never wanting to look at the stove again, I kept returning, curious and seeking joy and wonder.” – Debi Lewis
“There was medicine, of course, and there were surgeries and doctor’s appointments and therapies and consultations, but more than anything else, there was food — rules and structure and complicated diets, restrictions and extra calories, so many changes I can mark those years by food-related phases,” Lewis writes. “I don’t know what it was during all those years that kept me from turning on food, from hating it and resenting it, but instead of never wanting to look at the stove again, I kept returning, curious and seeking joy and wonder.”
From the time Sammi was born, she was in and out of doctors’ offices. According to Lewis, her daughter was diagnosed with laryngomalacia as a newborn, then gastro-esophageal reflux and a double aortic arch. At age four, she was diagnosed with eosinophilic esophagitis, a chronic, lifelong condition where the esophagus becomes inflamed and will not properly contract. It causes difficulty swallowing.
Sammi’s doctors suggested Lewis and her husband try different types of food to help their daughter. Throughout all this, Lewis felt alone.
“There is nothing for parents of children like Sammi, who are in a liminal, confusing medical purgatory of ‘failure to thrive’ with other confounding diagnoses,” she said. “There were parents with similar stories — a local friend whose daughter had celiac disease, a friend far away whose son had laryngomalacia — but there were no hospital support groups for us.”
Though Lewis was stressed out by the situation, there were many moments of triumph when she learned to love cooking and feeding her family. She writes how she never cooked until she got married. Then, she began making recipes from cookbooks for her first child as well as her husband, and continued exploring different food options for Sammi.
“I learned that our attitudes about food and feeding have to be grounded in some kind of deeper goal in order for them not to take over our inner life to a debilitating degree,” she said. “When I was able to step back and find joy and creativity in food, it made handling the constantly changing dietary restrictions much easier. It’s like what Mary Poppins says: ‘In every job that must be done, there is an element of fun. Find the fun and snap! The job’s a game!’”
While it wasn’t always so easy to channel her inner Mary Poppins, she was able to keep her ultimate goal in mind, which was to not destroy her daughter’s relationship with food. “Remembering that helped me find better language than ‘forbidden’ or ‘bad’ when it came to foods that she couldn’t eat, and helped me figure out how to course correct when I’d slipped in my own language,” she said.
Through various medications, therapies, surgeries and food, Sammi eventually learned how to eat. Today, she is 16 years old and loves the traditional Ashkenazi foods her mother makes, like matzo ball soup and challah. “When she was little, she claimed to like challah but didn’t actually eat much of it [because] I think it was hard for her to swallow,” said Lewis. “Now, when we make two loaves for Shabbos, she can finish almost a third of a loaf at Friday night dinner.”
Like other Jewish mothers, Lewis has a spiritual relationship with cooking, and that transforms her kitchen into a sanctuary. “I think this is true of many parents and grandparents who find the connection between feeding and love to be especially strong,” she said. “Treating food as a gift and taking into account the needs of the people around you makes cooking for them the real blessing that it is.”
Lewis hopes that when parents dealing with similar issues read her book, they’ll know that others went through the same thing. “For the parent of the next child whose pediatrician clucks his tongue and says ‘Still failure-to-thrive, dad, you’ve gotta get more calories in this kid,’ I want there to be a story they can hold in their hands that makes them feel less alone,” she said.
In “Kitchen Medicine,” she also strives to show how much of a miracle the food we eat is, and how we can have a positive experience with it.
“The sense of reverence I experienced when Sammi’s body healed was not terribly different from the reverence I feel when I pull a tomato off the vine from a plant I grew myself or the amazement I feel when my yeast proofs and the challah dough rises,” she said. “It’s amazing to be a human being whose body functions, and it’s incredible that the food we need just grows out of the dirt. Throughout every struggle, I always felt a sense of wonder at the things we could achieve with help or hard work. I hope that others who read this find some measure of appreciation for the sacred nature of everyday life.”
You can purchase “Kitchen Medicine” online at DebiLewis.com/kitchen-medicine.