Sammi’s Restaurant

When Sammi was a feisty three year old and we were still unclear about why she ate so slowly and with such unusual habits, I tried to entice her to eat heartier foods by inviting her to cook alongside me. It was a method recommended anywhere I sought help with “picky eating,” even though she wasn’t picky in the way that most people described their picky-eating children. She tried a great many things — always willing, often surprisingly eager — but seldom more than a few bites. Cooking together — particularly baking together — was my attempt at imbuing food with a kind of positive energy. It was Jewish-mama-mojo, those afternoons when I plopped her on a stool next to me and held her little hand as it dropped flour in a bowl, stirred eggs, drizzled oil. Continue Reading…

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Mother Blessing

tostados

More than ten years ago, I attended a mother-blessing, also known sometimes as a blessingway, for one of my closest friends. Andrea was due shortly thereafter with her second child, a daughter. Surrounded by a small group of powerful, loving women, Andrea and her still-gestating daughter were touched by healing hands and given tokens of energy and affection in the form of beads to make a bracelet Andrea could use as a focus in labor.

Mid-way through the evening, we gathered in the kitchen of the host, Andrea’s friend, for food and drink. She bustled around in front of the stove and returned with a steaming ceramic bowl of refried black beans, smelling strongly of garlic, and a platter of corn tostados. We all slathered the crunchy, oversized tortilla chips with the savory beans, and I knew that, perhaps in small part due to the circumstances heavy with love and support, I’d fallen in love with a food. Continue Reading…

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Endless Meals

Sit down and finish your dinner.

Are you done or are you just distracted?

All the rest of us are done. Could you please eat your dinner?

Just FINISH. If you want that food, then EAT IT.

For CRYING OUT LOUD, Sammi, FINISH YOUR DINNER!

I can’t sit here with you anymore. Eat what you want and then bring your dish in.

My husband and I had decided early in our children’s lives that we would eat together as a family whenever possible. We had both grown up that way, largely, and especially given the research that showed how valuable a family meal is to raising connected families, we’ve maintained this policy even as our children have gotten older and busier. Seated at the end of the dining room table closest to the kitchen, the four of us have always used the time together in the traditional manner — catching up on our days, joking around, planning family events together.

But when we were done, there was Sammi. Still sitting there. Still eating.

Unlike other families I knew who struggled with a picky child at mealtime, Sammi’s issues were seldom that she was refusing to eat what was on the plate in front of her. In fact, if we suggested that she might be finished, she would often tell us that she was still eating. Then she would take a bite, chew it slowly, and begin a conversation. Five or six minutes later, we’d realize that she was not using the time when someone else was talking to take another bite — instead, she was watching, nodding, interacting, but not eating any more.

Pick up your fork and put some food on it, we’d say, rolling our eyes. You know how to eat. Just eat your dinner!

Thirty minutes would pass, and the other three people at the table would be long done with their meals. We’d linger, chatting. Maybe one of us would get up to switch a load of laundry, rifle through the mail, answer the phone. Those left at the table with Sammi would keep chatting, fussing with our dishes, maybe having another helping of something, just to pass the time.

An hour after sitting down, Sammi would still be spearing pieces of food, now long-cold. By now, her sister Ronni would be off and playing, or reading a book in a chair nearby. Either David or I would have lost the ability to sit at that table a moment more, and would be in the kitchen doing dishes or hanging out with Ronni. The parent left at the table might start reading to Sammi or to him or herself in an effort to stave off the frustration and boredom of still being at the dinner table.

After ninety minutes, it would be nearly bedtime. If Sammi was still sitting at the table with her food, we often began a countdown to the end of the meal.

In ten minutes you need to get ready for bed. Eat whatever you can finish by then.

Bedtime is coming in five minutes. Finish.

It’s almost time to go upstairs!

Dinner time edged right up to bedtime for years and years. There were never, ever any family board game nights. We seldom had dinners in front of a movie, lest the adults lose our focus or vigilance over the state of Sammi’s plate. A summer walk at sunset? Never — we were still at the dinner table.

It helped to know that Sammi’s slow eating was likely a symptom of eosinophilic esophagitis, or reflux, or both. It helped, but not enough. I kept feeling that nagging, nagging sensation in my own belly — something else was wrong. This was nearly her only symptom. Why did the problem of slowness persist even with drinking? She drank like a toddler even at age 8, puffing her cheeks out to fill them with water and letting it down a tiny bit at a time. It seemed wrong. It seemed strange. I sat there, night after night, staring at Sammi eating in slow motion, musing and, despite myself, fuming.

We watched her, the sound of doctors labeling her “failure to thrive” whispering through our heads as she delicately balanced four peas on her spoon. Feed her more calories, they told us. She needs more nutrition, they insisted.

Let THEM try, I thought, over and over, waiting for the end of another interminable meal.

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What Will It Be?

hourglassThe methodology of the six-food-elimination-diet to treat eosinophilic esophagitis is this: the top six most common food proteins are eliminated from the diet for six to eight weeks. That means no dairy, egg, soy, nut, wheat, or fish products could cross my five-year-old daughter’s lips during that time. After that point, she had an endoscopy to see if, after removing all those foods — even foods prepared on the same equipment with those foods — her esophagus would no longer be coated with eosinophils, the nasty white blood cells that had congregated there, ostensibly to fight against whichever protein or proteins they saw as poisonous to her body.

That was step one: all six foods. The endoscopy showed no visual sign of any eosinophils, and multiple biopsies gave us the same result. The verdict? Ah-ha! The culprit must be one of those foods! Or two. Or all of them. But this diet — it worked!

Step two was adding a food to her diet and repeating the six-to-eight week elimination of all the other foods, and then following it with another endoscopy. The methodology was simple: add a food, let her eat it for a while, check the esophagus. If the esophagus is clear, that food is not the culprit. Then you add another food and try again.

This process took nearly a year.

During all that time, Sammi’s reflux-like sounds came and went, tricking us into imagining that we’d found the culprit, over and over. When she started eating eggs — the first food she chose to add back —  she started making that sound again, that urpy, gurgly sound, and telling us “the food is coming up again.” Ah-ha! we thought. It’s eggs!

But then, the day of her third endoscopy (the first was diagnostic, the second was after the full six-food-elimination), the doctor came out of the operating room and showed us a picture of Sammi’s smooth, pink esophagus. “It looks great,” he said. And the biopsy confirmed it several days later.

This meant we hadn’t found the culprit, and we were mostly glad — eggs were a favorite protein in our vegetarian home, and we didn’t want to lose them forever. On the other hand, it meant at least six more weeks of not knowing the shape our lives would take.

Would the culprit be soy? That would be hard but not impossible. We’d lose tofu and soy milk (our “milk” of choice in normal circumstances), and eating out might be hard, but that was doable.

Would the culprit be nuts? That would be our first choice — always well-labeled due to all the people with nut allergies, they’d be easy to avoid. More importantly, Sammi didn’t like nuts at all — something we mused might be a sign.

Would the culprit be wheat? This was the worst possible option for us — mostly for me. A passionate baker and utter cookie-freak, I would deeply mourn the permanent loss of our weekly challah at Shabbat dinner.

Would it be dairy? That would be easy too, I mused. Severely lactose intolerant myself, I already knew where to find dairy free cheese, yogurt, ice cream, baked goods. Vegan restaurants are fairly easy to find in our area. Even Starbucks has dairy-free milk.

We waited, six to eight weeks at a time, to find out how we’d live our lives. We waited, followed the regimen, experimented in the kitchen, and had no choice but to let the sand pass through the hourglass and reveal the future.

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Chivalry

The stories I tell about my daughter — and about my experience as her mother — feel as if they belong mostly to me. For so many reasons, I’ve turned out to be the person who’s handled the majority of her health issues, a role that feels as anachronistic as it does unchangeable. I’ve written very little about Sammi’s sister, Ronni, and perhaps even less about her father, David, except in first-person-plural, the other party implied whenever I write that “we” worried.

When we found out that Sammi’s aorta was the problem, it was a total shock — so shocking, in fact, that David had not come with me to the hospital that day. He’d been visiting his grandmother, who had pneumonia, and as a precaution against spreading it, he’d stayed away from the children’s hospital. My friend Cathy came with me that day. It was Cathy who sat next to me in the consultation room as the doctor explained what a double aortic arch was, and Cathy who looked me in the eye and told me it would be ok. It was Cathy who held Sammi as I called David at work and told him to get out a pen and start taking notes. It was Cathy who stepped outside with me and my woozy baby into the bright, mocking sunlight and steered me toward lunch, breathing, and reason. She was irreplaceable — exactly the presence I needed.

I remember not wanting to tell David, wishing I could give him another day without knowing what was about to happen. Nearly four years later, he had the chance to do that for me, and he did.

***

Every summer since Sammi was two, I’ve gone away for one weekend to the Indiana Fiddlers’ Gathering, a musical festival for traditional string music in a park over the grounds of the Tippecanoe battleground. As an old-time fiddler myself, it’s an opportunity to be immersed in the music I love, to feel the air on my skin in a way that mothers don’t often feel with young children at home. It’s my get-out-of-parenting-free weekend, once a year.

A week before the Fiddlers’ Gathering in 2010, when Sammi was four, she had her first endoscopy. The brusque and busy doctor had emerged from the operating room after the procedure with a glossy page of photographs of Sammi’s esophagus.

“See here?,” she said, pointing to a shiny spot in the photo, “This is something I sent out for biopsy. It could be yeast — that sometimes happens when the kids take these reflux drugs for so long — but it could be something else. We’ll let you know when we get the results.”

David and I squinted at the photo, “What could it be?” I asked.

“Well,” she said, a step away already, “there’s a chance it could be this thing we’re seeing nowadays called allergic esophagitis. It’s a big deal. Let’s hope it’s not that.”

“What do you do about that?,” I asked as she walked another step or two away.

“There’s a complicated diet. Sometimes they can give you some drugs. We have a specialist for it in our practice. Hopefully it’s just yeast.” By the time she finished talking, she had already turned her back to us and was walking away. A nurse walked us to the recovery room to sit with Sammi as she woke up.

For days, I listened for the phone call. My hand was on my cell phone, my ears prickling with the vigilance. On Friday, when I left for the fiddle festival, I told David to get in touch with me if the doctor called with results.

I phoned him on Saturday from my tent, asking “Did the doctor call?”

There was a pause. “No,” he said. “Sorry. Not yet.”

The weekend was soul-enriching, as I knew it would be. I arrived home Sunday, dirty and happy, unloading tents and camping equipment and my fiddle from the car. His mother was there for the afternoon, playing with the kids. David asked me to come up to our room. He closed the door. He said we needed to talk.

“The doctor called on Friday,” he said. “I didn’t want to ruin your weekend.”

Sammi had been diagnosed with eosinophilic esophagitis. It is, we would come to learn, a black-and-white disease: you have it or you don’t. The diagnosis is lifestyle-altering, unclear, prognosis poor, and ambiguously treated.

It was the end of our little world as we were coming to know it. David delayed that end for me by 48 hours. In the days that followed — frantic, drowning days — I knew that he had sat with that knowledge alone, no one to talk to, for two nights.

That was the most gallant, valiant, and noble thing anyone will ever do for me.

If I mention him very little in our story, it is partially because in just that weekend, he did enough for me to treasure him for many years to come.

everything

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