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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Three Days of Reckoning


When my now-eleven-year-old-daughter Sammi was still in my belly, I had a dream: a thin girl with straight, dirty blond hair and glasses, about nine or ten, was pushing a stroller at the zoo. I couldn’t see who was in the stroller, but something told me that pushing this stroller was very important for that young girl. Standing in place, her thin legs visible under short-shorts, she pushed her glasses above her eyes and wiped the bridge of her nose, then leaned forward, pressing her arms out and putting all her weight into the stroller. It rolled forward, and a gaggle of children I couldn’t quite make out ran and pranced around her as they moved toward the nearest animal exhibit.

That’s all the dream was — a girl I’d never seen pushing a stroller — and, at the time, I knew it was important but couldn’t quite figure out how. After all, I didn’t know I was having a second girl, and this baby in my belly had a round, dimpled older sister with a head full of huge dark curls.

But now, this week, I glimpsed a shadow of this image in real life. Sammi stood in a paper gown, waiting for the pediatrician. She had tried sitting on my lap in the chair, but her legs are now finally long and gangly enough that this is uncomfortable for both of us. I offered her the chair, but it was cold against her bare thighs, and she wanted to avoid the examining table until she had no other choice. So, she stood there: petite but solid, the plastic belt of the gown forcing the beginnings of a woman’s figure into my imagination, and I thought to myself: I really never pictured her at this age. Continue Reading…

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Soup Is My Legacy

souppotI hear my daughter Sammi’s steps on the stairs before her voice calls out to me. Still, I don’t run to unlock the door; she has keys, and my hands are covered in a sticky mass of egg and flakes of matzo meal. When I hear the key turn in the lock, I know what I’ll hear next and, still, it thrills me every time.

“Mommy!,” is the beginning and then, barely as that first word ends, the deep inhale begins, followed by, “Oooohhh! Really?!! Matzo ball soup!!! YES!!!”

This is my legacy, every bit of it, from the key in the door to the recognition of home to the smell of what’s cooking and what it means. This is how I want to be remembered.

Sammi has always loved soup. As a toddler, struggling to gain weight after her first cardiac surgery, she deigned to take tiny sips of a soup whose recipe I’d found in an old magazine and adapted. Chickpea soup became our savior, keeping her weight from dropping to the magically low number that would mean feeding tube. We spiked it with extra virgin coconut oil and kept a batch in the fridge at all times. It got so that I could not eat it myself, but never mind that — Sammi ate and did not wither, sipped and did not die.

When Sammi was only two, I brought a batch of that soup — a recipe I could make in my sleep and, half-crazed with insomnia in those years, often nearly did — to the home of parents who had just accepted two little boys as foster children. Sammi sat in her car seat as I hoisted the pot up the stairs and handed it over. There was, of course, another pot at home for her. These days, when I run into that other mother, she often mentions that soup, usually with the two words we use: “I made The Soup. Your soup. You know? The Soup.”

And I know. Of course I know. It’s powerful soup. Continue Reading…

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How Have You Never Had KUGEL?


My older daughter, Ronni, ran out of the door of the elementary school one day many years ago with her eyes wide and a story bubbling to the surface even as I crouched down to receive her in my arms.

“Mommy!,” she gasped, flinging her lunchbox into the basket under the stroller where her little sister sat, “I ate all the kugel in my lunch today — but no one at my table even knew what kugel was!

I hugged her and laughed. “Kugel isn’t a food most people have tried, sweetie, unless they’re Jewish or have lots of Jewish friends.”

She nodded. “I know, but MOMMY. How can they LIVE without trying KUGEL?!” Continue Reading…

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Sitting on Eggs: A Missed Diagnosis


On this day in 2010, my tiny, unbreakable five-year-old daughter got the world-changing news that she would be allowed to eat eggs.

For more than six weeks before this photo was taken, Sammi had been asked by her team of gastroenterologists to avoid contact with — and certainly ingestion of — any foods containing dairy, wheat, soy, nuts, fish, or eggs. She was already a vegetarian, and this diet was meant as a way to pinpoint the source of her new, puzzling diagnosis: eosinophilic esophagitis.

We waited both anxiously and in frenetic motion for the first phase of this diet to be over. I hadn’t been afraid of experimenting with my cooking, desperate to find foods that mimicked those we’d eaten in our prior life, but I discovered to my growing disappointment that cooking a vegan, gluten-free, nut-free menu for three meals a day would require nearly all my attention and still be met with regular catastrophe. When it was time to add the first forbidden food back in to her diet, she chose eggs. They were crucial to so many of the things she missed most: matzo balls, deviled eggs, and something resembling a cookie.

I’m writing about this again (I covered the excitement of the day in a previous post) because the single most popular page on my blog is the post called Practicalities of the Six Food Elimination Diet. It is a post written with the memories of the desperation I felt during the early days of this diet, working like a mad scientist, seeking ways to bind starches and proteins, to flavor the world my daughter inhabited. I was in it for the long haul, I thought. I’d heard horror stories about how likely it would be that my daughter would never eat a normal diet again, that the foods her body could tolerate now would eventually become foods her body would reject violently. I cooked and experimented and baked and threw away and started over many times a day.

Years later, with the knowledge that her diagnosis with eosinophilic esophagitis was wrong, I keep coming back to the words of a radiologist who saw Sammi in 2013. You can read the story of her “swallow study” here, but the most important part is his impression that eosinophilic esophagitis was becoming a trendy diagnosis.

It has taken me years to process that idea.

Could it be, I wonder, that medical professionals are susceptible to popular diagnostic trends in a way that blinds them to less-common possibilities? Continue Reading…

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