The Gift of No Dessert

Swallow, My Sunshine: Blueberries in a bowl
My daughter pauses on her way to return the jar of honey to the cabinet, angles her body toward the counter, and reaches for her buzzing phone. Absentmindedly, one hand still holding the honey while the other wraps itself around the phone, her gaze travels down to the messages that have come in while we were eating dinner. I wait to see what happens next.

As I suspected, the honey drifts toward the counter, set down as the connection between my eleven-year-old and her new friends from middle school crackles back into existence again. She is absorbed, and I turn back to the sink to finish the dishes. Ten minutes later, I dry the last pot and announce, “Bedtime, kiddo. Up you go.”

“BUT!” she says, loudly, “I was gonna have DESSERT!”

“No time left,” I answer, squeezing her shoulders. “You chose to look at your phone for the last ten minutes. Put the honey away and let’s go upstairs.”

“BUT!” she repeats. “I’m HUNGRY!”

I look at the time and mentally inventory the fridge and pantry for the quickest thing. “There’s no time for regular dessert. You can eat one yogurt squeeze or a handful of blueberries. You have five minutes.”

And then, as she opens the fridge quickly and sighs, I take in her long legs, strong shoulders, and thick hair, and I am grateful for the three hundredth time that five minutes is plenty of time for whichever she chooses. Not so long ago, there would have been neither phone time, nor the choice of fruit, nor the option to begin eating anything with so little time to spare before bedtime.

Not so long ago, my daughter Sammi could barely eat anything in five minutes. Continue Reading…

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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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Summer and What to Do

summer chair at the lakeIt is summer here in the midwest, and like nearly every summer for the last nine years, I’m balancing conflicting impulses: to work as hard as I can in every moment my children’s schedules and propensity for all-day-tv-watching will allow, and to spend as much quality time as possible with my children while they still want to spend time with me.

We’ve had memorably difficult summers, of course, like the summer when Sammi, the sunshine of this blog’s title, began the first and most restrictive phase of her six-food-elimination-diet for eosinophilic esophagitis, and the summer after her aortopexy surgery, when I took her for feeding therapy every week. Those were sunny days with metaphorical thunderstorms always looming.

This summer, though, is as perfect a summer as I can imagine. Everyone is healthy. Both my daughters have just the right amount of independence and connection, and I am writing this from the window of a coffeeshop where Sammi left me on her way to day camp. She’ll pick me up later. I have a full slate of work, a hot latte, and not a single doctor appointment on our calendar for the foreseeable future. Continue Reading…

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Doctors Made Mistakes: Now What?

Please watch this, all 21 minutes of it:

This Ted Talk was produced in 2011. While Dr. Goldman was speaking eloquently and so bravely about his humanity as a physician, my daughter Sammi was in kindergarten. That is, she was in kindergarten when she wasn’t on an operating table or in the gastroenterology clinic at our local children’s hospital, being treated for eosinophilic esophagitis, a condition with which, we would learn three years later, she had been misdiagnosed.

Dr. Goldman’s talk gives me hope. My bitterness about the lost and wasted years we spent engaged in the fight against the wrong enemy has not resulted in a lawsuit, not because I am not furious and not because I am not heartbroken and not because I don’t believe we could win. We haven’t sued because Sammi’s doctors are human beings. Continue Reading…

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Unlearning the Body

chocoAfter six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.

The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.

Instead, she nibbled timidly and said, “I’m full for now.”

It was heartbreaking to realize that, as far as she’d come — years of false diagnosis with reflux, then eosinophilic esophagitis, then a revelation that her swallowing problems stemmed from a structural obstruction in her chest, culminating in major cardiac surgery — she still had more hurdles to jump. Of course we couldn’t undo eight years of her experience of eating in one day at the candy store. Why had I been so naive? Continue Reading…

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