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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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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Bike Back

bikeIn 1989, when I was fifteen years old, I had a terrible bike accident. Following my friend and her father through a wide intersection in the final moments of our yellow light, I rode my bike directly into a car that began moving forward just as our light turned red. As I saw that the driver was speeding up and that I would almost certainly collide with her, I did what many people do, instinctively, when they’re frightened: I closed my eyes.

The last thing I remember from that crash was seeing that my front bike tire was about to hit the side of the moving car. The events that followed were a series of flashes: seeing my bike twenty feet away from where I lay on the street, the EMT’s face above me; answering the question of who our president was as the ambulance sped toward the hospital; my mother’s face in the emergency room. I had a concussion, stitches on my scalp, and a compression fracture in one of my vertebrae. The friend who had been behind me on the bike ride said she watched me collide with the car and fly high into the air, landing heavily on my back and the back of my head. It was the 80s; no one wore bike helmets.

I often think of this as I ride my current bicycle around town. I recall the crash from my childhood and even remember the aftermath in the hospital. My back still twinges from time to time, and hair never grew in again over the spot where I had stitches. Still, I love to ride my bike. I love the way a hot day turns cooler with the wind I create on two wheels. I love the freedom of choosing alleys instead of roads, of avoiding traffic, of parking anywhere I can safely lock my bike. I love my bright blue bicycle itself, and the quirky helmet that all my friends can identify from afar. I love the inner child who tugs at my shirt when I get on, proud to keep herself balanced on the pedals and thrilled to be moving faster than on foot but still using only the power of her own two legs.

In short, that bike accident — violent, frightening, memorable — has not ruined my love of bicycling. So, how can we know, as parents, which experiences will wreak havoc on a child’s future interactions and which will be unable to change what is fundamental? 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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Second Guessing and Seventeenth Procedure

Ibodiesn the years since my daughter’s medical mystery was solved, I’ve struggled to silence the what-if voices that whisper to me in quiet moments. What if we’d figured this all out when she was two? What if we’d figured it out when she was four? What if we’d figured it out at five? What if her care had been managed by a multi-disciplinary team from the very beginning?

These what-ifs serve no purpose. They don’t change anything about the moment I inhabit right now, a moment in which Sammi, my resilient, remarkable kid is currently riding an enormous horse with her best friend after gobbling pizza with her last night and sharing pancakes with her this morning. Her legs fill in her jeans, her cheeks are full and bright and sun-kissed, and I am truly, honestly, not worried about her. The what-ifs can’t touch that. They can’t touch her future.

Still. Continue Reading…

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