Debi Lewis’ writing is poignant and dogged. So, too, is the journey to medically manage her daughter’s mysterious 9-year illness, which she expertly chronicles, an explorer without a map. Equal parts heartbreaking and triumphant, these glimpses into one mother’s attempt to feed her family in medical uncertainty remind us, as adults who love and care for children, of both the magnificent power of human resilience and the horrible illusion of control.
-Deborah Siegel, PhD, author of Only Child and Sisterhood, Interrupted
Debi Lewis spent eight years unraveling the great mystery of her daughter’s medical issues. Born with a confounding set of digestive and respiratory concerns, Lewis’ daughter Sammi became the subject of her research, writing, and of course, constant worrying. In the intervening nine years and through varying diagnoses, Lewis has learned to navigate hospitals, medical specialists, insurance, and a wide variety of special diets and medication regimens, always with the goal of nurturing both her daughter and their whole family, whatever it took. You can read her published essays in a variety of journals and magazines.
At various times, Sammi has been diagnosed and treated for:
- laryngomalacia
- gastroesophageal reflux (GERD)
- multiple ear infections/ear tubes
- double aortic arch, aka “vascular ring”
- pneumonia
- tonsillectomy/adenoidectomy
- eosinophilic esophagitis
- PPI-responsive esophageal eosinophilia
- idiopathic short stature
- esophageal dysmotility
More information on the purpose of this blog can be found here.
You can contact debi at debi@swallowmysunshine.com. She is represented by Sharon Bowers of Folio Literary Management and Miller Bowers Griffin Agency.
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[…] Lewis is the author of the blog Swallowmysunshine, written about unraveling the great mystery of her daughter’s medical issues. Born with a […]
why did you not give your great grandmother’s kugel recipe in your article about her long lost kugel recipe?
I have the recipe here on my web site, Wendy. Take a look at this post: How Have You Never Had Kugel?
Hello Debi,
I wanted to thank you for this blog! Over the past few days I’ve read the entire thing through. You share your experience beautifully. My (now three year old) daughter had many feeding challenges and “failed to thrive”/put on weight, and you put into words the stress and fear (and endless nagging at mealtimes) that that involves. My younger baby has eosinophils in her stool, so we did an 8 food elimination, and ended up with soy, diary and eggs as the culprits. Very different root causes and outcomes, and much less of the medical fear/interventions than you all had to go through with Sammi, but your story still resonated with me and put things into words that I hadn’t been able to express myself. Thank you!
Molly, I’m so sorry your children have struggled this way! It’s heartbreaking. I’m glad reading our story validated some of what you were/are feeling. No soy, dairy, and eggs is a lot to deal with! Have you tried the Daiya brand of products? Some great options there. Let me know if you need any additional ideas — feeding little ones with those restrictions is HARD!
Hello! I’m so glad I came across this blog. Unfortunately I can relate. And my 6 year old daughter was just diagnosed last week with a RAA with ALSA with a vascular ring and Kommerell Diverticulum. Where was your daughters surgery performed?
Hi Nicole! May I email you privately with the hospital name and location?
Perfect! chadandnicki@hotmail.com
We live in montana and have no specialist in our area.