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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Checking In With You

snowDear Reader,

I am writing to you from the window of a coffeeshop. I sip from my hot mocha, listen to my headphones, and look out at the cars going by. Where I live, there has just been snowfall, and the pedestrians are like me on my walk here: bundled, hunched against the cold, hurrying. Inside, people surround me, but I’m trying not to engage with them.

I’m thinking about you. Who are you? Why have you come?

For years, I spent countless intent hours searching for information that would help me solve the mystery of my daughter’s health issues. Even when we thought we had a solid diagnosis — laryngomalacia when she was an infant, repaired double aortic arch when she was a baby, reflux when she was a toddler, eosinophilic esophagitis when she was a little girl — I wanted to know how to handle it. I wanted to know how other parents made their children’s lives easier despite the diagnoses. I wanted to know how other parents made their own lives easier despite the diagnosis.

I was hungry for connection and knowledge. I was desperate for validation, advice, and other parents to either assuage my fears or tell me how they made their peace with the same ones. Continue Reading…

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Handouts for Doctors

Have you read my chart?Over and over in my head, I dissect what went wrong with my advocacy for my daughter.

When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.

When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.

We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed. Continue Reading…

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Fragments and Money

fragmented winterBetween the December day when we received news of our daughter Sammi’s impending cardiac surgery and the surgery itself were nearly five fragmented, breath-holding months. During that time, life went on as usual: school, work, meals and concerts and the usual patterns of life with two children.

My days, already naturally broken into small chunks of varied activities, crumbled into bite-sized pieces of work and daily chores mixed with anxious Google searches and conversations over phone and email. In the autopilot that clicked on during repetitive activities like cooking or walking my children to school, I sometimes found myself unable to remember what had been happening in the previous ten minutes. How had I gotten to this corner? When did I add the onion to the pot?

Throughout, I was honest with friends and family about what was happening. Many had been with us for the Sammi’s entire medical journey. They had prayed and visualized a pink and smooth esophagus on each of her many endoscopy days. Some had arranged a spot in their pantry for a new, unused cutting board and disposable baking pans so that they could invite us for dinner during the hardest weeks of the six food elimination diet. These people were experiencing this with us, many of them nearly as deeply in love with Sammi as we were. They deserved to be in-the-know, and so I held very little back. We talked openly about the surgery and what it would entail; we shared whatever we knew and accepted their promises to hold us in their positive thoughts, whatever shape those took.

But some of them — more than a few of them — asked us the multimillion-dollar question: are you thinking about a lawsuit? Continue Reading…

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