Your Strange Diet, Day One

There are hundreds of articles on the internet and in parenting and health magazines about what it’s like to deal with food allergies. From the relatively minor challenges of mild lactose intolerance to the devastating effects of an anaphylactic reaction, there’s advice on avoidance and labeling, special medical alert bracelets and school safety plans. There are lists of substitutions for these newly dangerous foods, recipes for making things “(fill-in-the-blank) free,” and products popping up on shelves to replace the foods you used to love before they became a danger to you or someone you love.

kitchen cabinetIt’s easy to find those articles. What I felt was missing was an article to help families in those first few days. The day after a child is first raced to the emergency room with a swelling throat, or after the gastroenterologist hands over the celiac diagnosis, or after an oncologist tells someone to follow an anti-cancer diet, they stand in their kitchens and stare down their former life  — and their kitchen cabinets — without knowing what to do first.  Continue Reading…

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6 Things Not to Say to a Family on a Medically Restrictive Diet

talkingBetween my daughter Sammi’s birth and her ninth birthday, she spent nearly all of her life on some kind of medically-restrictive diet. Whether it was being forbidden to eat grains as a baby, following an acid-free diet as a refluxing toddler, using the six-food-elimination diet to uncover the cause of her (incorrectly-diagnosed) eosinophilic esophagitis as a little girl, or choking down the unpleasant fat-free food that kept her safe from chylothorax after her cardiac surgery, we often had to define what our whole family ate by the things that Sammi had to avoid.

During all those years, I heard a number of unhelpful comments about what I fed my child, ranging from the well-meaning but insensitive to the downright offensive. If someone in your world is eating a diet that their doctor has prescribed, the following comments should never, ever come out of your mouth. Continue Reading…

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Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. Continue Reading…

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Erased

samminecklaceBetween July 1, 2010 and April 10, 2011, I prepared over 800 meals that excluded some combination of dairy, egg, soy, nuts, and wheat.

Over 800 times, I checked and double-checked against the current list in my head. What is she allowed to have today?, I asked myself as the restrictions lifted, one by one. I paused as I used my mixing bowls, contaminating them with the newest addition, knowing I might have to throw it away if this food trial was a failure. I paused as I asked Sammi if she liked the newest recipe, worrying about the possibility of taking it away again later. I paused and paused again, rethinking each ingredient and each interaction around food.

When Sammi passed every food trial, her doctors could not explain it. They shrugged, confused, and sent us on our way. After more than 800 meals governed by rules and restrictions and embarked upon with my shoulders squared and my resolve set, the journey was over. We were at square one: all choices available to us, all foods a possibility, the road ahead open.

It was an unbelievable mindfuck. Continue Reading…

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Pink and Smooth

Surprises are foolish things. The pleasure is not enhanced, and the inconvenience is often considerable. -Jane Austen

In early June of 2011, my daughter Sammi had the final endoscopy in a series of eight, each one marking a phase of her six-food-elimination diet for eosinophilic esophagitis. Each scope after the first one — the one that provided the diagnosis — was to test for the effect that a food had on the surface of her esophagus. A negative reaction would look like eczema in that muscular tube running from her throat to her stomach — patches of white, clustered cells, sometimes so thoroughly irritated that long, deep ridges would form, as though the disease itself had run a fingernail down the tissues there. That was the state of things when she had been diagnosed in June of 2010. Continue Reading…

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