When Debi Lewis gave birth to her younger daughter, Sammi, she expected she would be as enthusiastic an eater as her older sister was. Soon, though, it became clear that her baby could barely eat—and no-one could figure out why. Over the first decade of her life, Sammi would be diagnosed with myriad conditions, all of which demanded her mother become a wizard in the kitchen, learning to whip up delicious eats that complied with every restriction under the sun.
In her new memoir, Kitchen Medicine: How I Fed My Daughter Out of Failure to Thrive, Lewis writes about her family’s medical travails. More than that, though, she writes with steadfast honesty about the challenges she faced as a caregiver, about being scared out of her wits, and about a journey of complex spiritual healing. I sat down with Lewis not long ago to talk about her debut memoir.
Kitchen Medicine opens with you and your new husband trying to figure out how to cook. What role did food play in your home when you were growing up? Have you always loved cooking?
I live in Illinois now, and my younger brother and I were raised nearby, in Wisconsin. Growing up, food was definitely a central part of our home. My mom, who’s retired now, was a full-time teacher for most of our childhood, but she always cooked dinner. We only went out for dinner two or three times a year. She was always trying to make food that fit within her definition of healthy, which changed over the years. She always cooked, and she grew a big garden in the summer months with all kinds of vegetables. I didn’t pay nearly as much attention to my mom’s skills in the kitchen as I wish I had, so when I was first married I really didn’t know what I was doing. And my husband really didn’t know what he was doing. So, I started to learn.
With my eldest, Ronni, it was easy. She was so much fun to feed, opening her mouth like a Pez dispenser when we went to feed her. And she was so excited; her little legs would kick under the table when she saw the bowls coming. I thought this is how babies were. Of course, we soon learned that things could, and would, be very different.
During the years of elimination diets and special foods, you had to care for two daughters’ relationships to food. How did you make sure you were keeping your youngest safe, while not stopping your oldest from enjoying meals?
I was always aware that the hyperawareness of food, while necessary, could really mess them up. Especially when we were doing the various elimination diets to test for food sensitivities when my daughter had an eosinophilic esophagitis diagnosis. I mean, how do you take all these foods out and put them back in and take them out again, without creating some feelings around food being forbidden?
One of the things I did was to be very deliberate about language choice. It’s pretty common for parents to refer to foods kids are allergic to as no-no foods or bad foods. We chose to say either ‘Safe for Sammi’ or ‘Not Safe for Sammi,’ because it was really about her and this particular body part. It was a really big science experiment to see which foods would give Sammi’s esophagus a rash and which wouldn’t. I only used the terms ‘Yes Foods’ and ‘No Foods’ privately, as a frame for understanding what to cook.
Of all the diets, the fat-free diet Sammi had to do after the last surgery was the hardest one. I was terrified the whole time that we were going to demonize fat. I remember the ‘80s, and I remember the fat free stuff. That food is gross. When we were doing it, we talked a lot about how this food was not tasty and we made sure they knew exactly why we were eating it. It wasn’t because foods with fat are bad for us, it was because there was a hole in one of Sammi’s thoracic ducts.
I’ve actually written about how Oreos really saved us after Sammi came off that diet and needed to put on some more weight. You know, my husband always tends to be concerned about how much junk we have in the house, but I’m more concerned about how much balance we have. Is there junk? Is there enough fruit? Are there enough vegetables? What’s the protein we’re gonna have in our dinner tonight—and then Oreos for dessert? I try to see all foods as good for different things.
I still love cooking with my daughters. Last Saturday, Ronni and I baked two cakes for our Purim fest. Sammi is a little less interested, but she makes her own cookies from scratch sometimes. And if I ask her for help, she’ll come and help. I love baking together.
Early in the book, you mention you didn’t know that you shouldn’t accept a doctor’s word as absolute truth. What have you learned during your time navigating the medical world?
I have a very interesting relationship with hospitals, in that I am not unhappy when my child is admitted to the hospital, because then I can stop trying to be a doctor myself. I can just be a parent. Initially, I had a very grateful view of doctors, and I still do. Many, many more medical practitioners we engaged with were thoughtful and made good calls than the doctors who didn’t.
What I have lost is any sense of awe or belief in the magic of doctors. They’re human beings, they’re just like me. I make mistakes in my job; doctors also make mistakes in their jobs. What I really wish was that, as a society, and as a culture, we were set up so doctors could admit their humanity without fear of losing their medical licenses and livelihoods. If a doctor who made a mistake had been able to say to us, ‘Wow, we really missed this, I’m so sorry,’ and, ‘I want to work with you and help you move forward,’ it would have meant so much. But they really can’t say that, because we have a very litigious system. Over time, I went from sort of this blind trust in awe in the magic of doctors to knowing I had to insert myself as part of the team. They may understand congenital heart disease, but I understand Sammi. They may understand how the heart works, but I can tell you whether she’s experiencing a symptom twice a day, six times a day, or once a week. I think what’s changed is that I feel compelled to become part of the team, whether they want me there or not.
What role has Jewish food and community specifically played in your journey to healing your family?
There’s no divorcing food and Jewish community. They’re wrapped up in each other. Through our synagogue (a really diverse, inclusive progressive synagogue in the suburbs in Evanston called the Jewish Reconstructionist Congregation) we have found very close friends who were extraordinarily supportive and helpful during the worst of these years.
Truly, there’s no better way to understand why it’s meaningful to be engaged in a Jewish community than to have a crisis. If you have a crisis, and you’re a member of a Jewish community, you are not going to have your crisis alone. You won’t be left without the support you need. In our case, we couldn’t get meals, although they would have been abundant if we could have gotten them. We did get bags of cut up fruit that showed up at our door. The rabbi visited us in the hospital. You cannot suffer alone if you’re an engaged member of a Jewish community.
When Sammi was really little, she claimed to like challah, but I didn’t really see her eat it very much. Of course, it turned out Sammi couldn’t really swallow, so she would take a half of a slice and try to eat it for an hour. I think what she liked was the meaning of having the challah on Friday. She loved the Shabbat candles, and the smell of the bread baking. One thing she’s always loved is matzah ball soup, which makes total sense. It is a great food for someone whose esophagus is constricted.
One thing I appreciated about the book was that it didn’t end after Sammi’s last surgery. You included some hard moments, and talked about how you overcame that emotionally. Why did you choose to include those vulnerable scenes?
I would have rather spent more time on that than anything else. Of course, there is some drama and interest in the process of the diagnosis and treatments, but the real reason I wrote this book was for the parents who have this diagnosis of ‘Failure to Thrive’ hanging over their heads. I always knew my daughter wasn’t doing anything wrong, but I felt I was failing to get her fed. It hurts a lot as a parent, and particularly as a Jewish parent, coming from within a culture that’s always trying to feed our kids. For me, it was true. I really was desperate to feed her. And it takes a toll.
I couldn’t find any stories being told by parents who were talking about failing. I don’t think I failed at feeding her, but I did sometimes fail to have compassion, in the moment. I was burnt out, overwhelmed, tired, lonely, and scared. I had no support from the medical system that had saddled me with whatever the newest diagnosis and treatment plan was.
Parents break sometimes, and we put ourselves back together. But if we never see any stories of other people doing it, it makes us feel like monsters. This is much less a book about Sammi and much more a book about my experience of parenting her. Being in this role is hard, and parents of kids who are struggling with health issues sometimes feel like we have to be super heroes, or perfect. I really wanted to write this for somebody who feels the same way, so they know they can talk about what makes them feel lost or scared.
Debi Lewis’ memoir is Kitchen Medicine: How I Fed My Daughter Out of a Failure to Thrive, published by Rowman and Littlefield. It’s available at all bookstores. To learn more about her work, visit www.debilewis.com.