Parents are responsible for feeding their children on a daily basis. It’s usually a mundane responsibility and one of 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? So what does a parent do? 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 swallowing problems and the label “stunting” was placed on her medical records.
Today, Lewis is the author of a new book, “Kitchen Medicine: How I Fed My Daughter Out of Failure to Thrive,” about his troubles trying to feed Sammi. Each chapter is named after a different type of food the author explores – such as chickpea soup, fat-free matzo and cream cheese, and pickles – and how it affected Sammi’s whole family. and Lewis.
“I don’t know what kept me all these years from lighting food, hating it and resenting it, but instead of never wanting to look at the stove again, I kept coming back, curious and searching. joy and wonder.” – Debi Lewis
“There were drugs, of course, and there were surgeries and doctor’s appointments, therapies and consultations, but more than anything else, there was food – rules and structure. and complicated diets, restrictions, and extra calories, so many changes that I can mark those years with diet-related phases,” Lewis writes. “I don’t know what’s been holding me back all those years. lighting the food, hating it and resenting it, but instead of never wanting to look at the stove again, I kept coming back, curious and seeking joy and wonder. .”
From the moment Sammi was born, she was in and out of doctors’ surgeries. According to Lewis, her daughter was diagnosed with laryngomalacia as a newborn, then gastroesophageal reflux disease and a double aortic arch. At the age of four, he was diagnosed with eosinophilic esophagitis, a chronic, lifelong condition in which the esophagus becomes inflamed and does not contract properly. It causes difficulty in swallowing.
Sammi’s doctors suggested that Lewis and her husband try different types of food to help their daughter. Throughout it all, Lewis felt alone.
“There is nothing for the parents of children like Sammi, who are in a liminal and confusing medical purgatory of ‘stunting’ along with other confusing diagnoses,” she said. “There were relatives with similar stories – a local friend whose daughter had celiac disease, a distant friend whose son had laryngomalacia – but there were no hospital support groups for us.”
Although Lewis was stressed by the situation, there were many moments of triumph as she learned to love cooking and feeding her family. She writes that she never cooked before getting married. Then she started making recipes from cookbooks for her first child as well as for her husband, and continued to explore different food options for Sammi.
“I learned that our attitudes towards food and eating need to be grounded in some kind of deeper purpose so that they don’t 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 it easier to manage ever-changing dietary restrictions. It’s like Mary Poppins says, ‘In every job that needs to be done, there is an element of fun. Find the fun and hang in there! Work is play!”
Although it wasn’t always so easy to channel her inner Mary Poppins, she was able to keep her ultimate goal in mind, which was not to destroy her daughter’s relationship with food. “Remembering that helped me find better language than ‘forbidden’ or ‘wrong’ when it came to foods she couldn’t eat, and helped me understand how to course correct when I had slipped in my own language,” she said. .
Through various medications, therapies, surgeries, and foods, Sammi finally learned how to eat. Today, she is 16 years old and loves traditional Ashkenazi dishes prepared by her mother, such as matzo dumpling soup and challah. “When she was little, she claimed to like challah but didn’t eat much of it. [because] I think it was hard for her to swallow,” Lewis said. “Now when we bake two loaves for Shabbat, 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 it turns her kitchen into a sanctuary. “I think that’s true for many parents and grandparents who find the connection between food and love to be particularly strong,” she said. “Treating food as a gift and considering the needs of those around you makes cooking for them a true blessing.”
Lewis hopes that when parents facing similar issues read his book, they’ll know others have gone through the same thing. “For the parent of the next child whose pediatrician clicks their tongue and says ‘Still stunted, Dad, you need to get this child more calories’, I want there to be a story they can hold on to. in their hands it makes them feel less alone,” she said.
In “Kitchen Medicine”, she also strives to show how the food we eat is a miracle and how we can have a positive experience of it.
“The feeling of reverence I felt when Sammi’s body healed was not much different from the reverence I feel when I pick a tomato from the vine of a plant that I grew myself or the amazement I feel when my yeast resists and the challah batter rises,” she says. “It’s amazing to be a human being with a functioning body, and it’s amazing that the food we need is just growing from the ground. Throughout every struggle, I always felt a feeling of wonder at the things we could accomplish with help or hard work. I hope others reading this will find some appreciation for the sacred nature of everyday life.