Lemonade Out of Gluten-Free Lemons

grocery-cartSometimes, I just have to laugh at the way the universe answers the questions I haven’t even asked yet.

It’s half-way through the summer of 2017, and here I am, suddenly aware that I live with one foot in the summer of 2010. I spent that summer in a cloud of specialty flours: tapioca and arrowroot, garbanzo and white rice and coconut and and sorghum. I sprinkled xanthan gum like a gluten-free fairy into all the creative ideas I had for how to make food for my daughter, whose health challenges required that she cut out dairy, eggs, soy, nuts, meat, and gluten. During my deep-dive into specialty cooking for what I called the “joy-free” diet, I dreamed in recipes and grocery store trips. Along the way, I picked up several dozen grey hairs, but I also became an unwilling expert on food challenges.

Though my daughter’s health issues resolved without any need for her to continue with food restrictions, the knowledge I gained never went away. In some ways, it’s not unlike a spare tool in the garage; though we seldom need that particular odd-shaped wrench, the neighbors know we have it, and they can borrow it any time. Even though we may have bought that wrench to put together a hospice bed or to tighten bolts in a subfloor that collapsed beneath our feet — and seeing it brings back every memory of that awful time — we’re glad it’s going to use for someone else who needs it. That wrench — my reluctantly-gained knowledge — shouldn’t go to waste.

Because of this, my friends call me when they need to follow an unusual diet or avoid a common food. And because I want to make lemonade out of those gluten-free lemons, I always help. Always. Continue Reading…

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The Long Arms of Childhood Illness

Affordable care act calculator

If you saw my two daughters today, you would never know that some medical insurance companies would historically have considered them uninsurable.

My youngest daughter’s history of illness has been documented in my blog and detailed in articles in a variety of publications. From infant reflux to laryngomalacia to a congenital heart defect, from eosinophilic esophagitis to chylothorax, she has been under general anesthesia 17 times in her eleven years. Though the first nine were full of medical intervention, the last two following her final surgery have been nothing short of miraculous for her. She now eats well, has full energy, is growing, and leads a completely normal life. She has a pediatrician, a dentist, and an orthodontist — a far cry from the pit crew of specialists she used to see.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life. Continue Reading…

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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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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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