They Called Me Again

I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.

“Hello, is this the parent of Samara Lewis?” someone asked.

I walked several rooms away from my family and answered, “Yes, who is this?”

“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”

I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question. Continue Reading…

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The Teal Pumpkin Project: Because We Remember

teal-pumpkin-remember

When my daughter Sammi was five, Halloween could have been just horrible.

Just a few months earlier, Sammi had been diagnosed with a disease called eosinophilic esophagitis. An inflammatory condition of the esophagus — the tube that runs between the mouth and the stomach — it is poorly understood and responds to only a handful of imperfect treatments. The treatment we chose for her was called the Six Food Elimination Diet, a set of food restrictions that required her to avoid anything with dairy, soy, eggs, nuts, fish, or wheat. We were already vegetarians; this was a huge lifestyle change for our entire family.

Sammi had just started kindergarten, learning to read and write and follow instructions in a classroom that necessarily had been forced to eliminate Play-Doh (wheat) and to keep a small box with “Sammi-safe” snacks available for the days — most days — when she could not eat the shared snacks brought by her classmates. It was a rough start. And then, it was Halloween.

On this particular diet, the only kind of typical Halloween candy she could eat were Smarties and Dum-Dums. All other candies contained a forbidden item or were produced on equipment that might be shared with a forbidden item, and so I tried to figure out how to save Halloween. How would it be to walk from house to house and say, over and over again, “No, you can’t eat that one. No, you can’t eat that one either. No, no, no”?

Finally, I decided to solve our problem with a combination of money and magic. Continue Reading…

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Sitting on Eggs: A Missed Diagnosis

sammiegg

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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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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Let Me Take You There

doorA hundred lifetimes ago, in undergraduate and graduate writing workshops, I studied the ways that tense and perspective change the tone of a story. When it comes to my emotions and my words, I find that tense and perspective are the best tools I have for bringing readers into the story quickly. For example: What happens when I tell this in the past tense — “My daughter could barely breathe” — versus when I tell it in present tense: “My daughter can barely breathe”? What happens when I tell a story in first person (“I was frightened“) versus when I tell them the story in second person (“You will be far colder than one would expect“)?

For me, past tense offers distance. As I write in past tense, I feel separated from the events. I can write without getting too caught up in the moment as I experienced it in real time. I am calm, almost clinical in my descriptions. It reminds me of the unwavering steadiness I’ve been able to construct in moments of real trauma by simply breathing deeply, disassociating from my emotions, and behaving like a soldier on a mission. In past tense, I am a reporter, and even when I report on the raw and furious emotions in our family’s history, it is with a detached, analytical eye.

Present tense is where I get you invested. I am here, in the sun-filled living room, with the baby in my lap who is struggling to breathe. Or, I am lying on the floor of my basement in the cold dark, and I think, for a moment, that I can hear my screaming daughter two floors above me as I sink into the drugged sleep of a woman past the edge of exhaustion. You are watching me in real time. Neither of us knows what comes next. We are both — writer and reader — in my mystery. Continue Reading…

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