Parenthood is a complicated, often chaotic, adventure for everyone. Raising up young people to be kind, empathetic, strong, inquisitive adults is a challenge that few can claim to be prepared for. Still, we all try to get ready for anything that comes our way. We hope that our babies will be born healthy.
When Debi Lewis became pregnant with her second daughter, Sammi, she had no reason to believe that her new little one would be anything but hale and hearty. She already had a toddler, Ronni, who was active and robust, and who loved to try any new foods her parents gave her. “I didn’t even know how over-exaggerated her excitement about eating was,” Lewis told me, “because she was our first kid. But she was so much fun to feed, and still is.”
Sammi, however, had trouble eating. Even as a baby, trying new foods, she couldn’t swallow. Doctors diagnosed her with a failure to thrive, a condition described by Johns Hopkins Medicine as occurring when a child’s “weight or rate of weight gain is significantly below that of other children of similar age and sex.” Sammi couldn’t eat, and she couldn’t grow, and nobody could figure out why.
“Parents whose children have this diagnosis really feel that it hangs over their heads,” says Lewis, “I never heard it as ‘failure to thrive,’ because it wasn’t that my daughter was doing anything wrong. It was that I was failing to get her fed.”
Over the course of the next ten years, Lewis and her husband would be in and out of hospitals, taking their tiny child to endoscopies and tests, blood draws, and CT scans. Sammi received myriad diagnoses and treatment plans but nothing stuck. She continued to struggle with swallowing, and couldn’t get enough calories. She continued to ‘fail to thrive.’
Debi Lewis’ new debut memoir is called Kitchen Medicine: How I Fed My Daughter Out of Failure to Thrive, and it is a brave and vulnerable account of these harrowing years. In it, the author takes us, step by step, through every moment of the family’s journey to get Sammi the help she needs. This isn’t just a medical memoir, though. It’s the story of a mother reckoning with what it means to be the protector of her children, whatever it takes.
“Caregiver narratives are really important,” says Lewis, “because being in this role is hard, and there’s an expectation that parents of kids who are struggling with any kind of health issue should be heroes. I think a lot of caregivers feel like they have to be perfect somehow, be strong and never break or feel lost and scared. I really wanted this book to be out there for the next person who feels the same way.”
There are a lot of elements of this book that I loved — the free-flowing storytelling that draws you in from the first page, the fact that all the chapter headings are foods, the cliff-hanger moments — but a major one was the fact that Lewis does not try to be perfect. She isn’t a superhero in this story, she’s just a human person trying to do her best in the face of a terrifying decade of uncertainty. She stumbles, and says things she regrets, and has to learn to be a staunch advocate who stands up to doctors and nurses. She has to learn how to make allergen-free everything for her family while being careful to maintain a positive attitude towards mealtime. None of this is easy. None of it is without pitfalls. Rather than shy away from the moments in which she stumbles, the author chooses to be completely open. This is true strength.
Throughout it all, the Lewis family leans heavily on the wisdom and comfort of their Jewish community and what the author refers to as her “ancestral food.” Frankly, just the idea of trying to make gluten-free, dairy-free, nut-free noodle kugel sounds too complicated for me to even imagine, but somehow it gets done. Making the aroma, flavor, and essence of Ashkenazi Jewish cuisine (and culture) a part of her daughters’ lives was too important to give up on.
“If you have a crisis, and you’re a member of a Jewish community, you are not going to have that crisis alone,” Lewis told me, “In my case, we couldn’t get meals, although they would have been abundant if we could have gotten them. But we did get bags of cut-up fruit that just showed up at our door. The rabbi visited us in the hospital and made sure we were on the ‘refuah shlema list.’ You cannot suffer alone if you’re an engaged member of a Jewish community.”
We need more books that speak clearly about the adversity — both emotional and physical — that parents of children with complex medical problems face. This book does exactly that and I, for one, am very glad that it’s on my bookshelf.
Debi Lewis’ debut memoir is available wherever you buy books. For more information about the author, and to read more of her work, visit www.debilewis.com.