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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Endoscopy Days

My daughter Sammi was four years old when she had her first endoscopy. Between that first one in June of 2010 and the most recent one in November of 2013, Sammi had more than a dozen endoscopies, each blending into the next, a routine and ritual that she has endured more times than she’s had annual physicals in her pediatrician’s office. She’s had more endoscopies than years on earth or last-days-of-school.

The day before an endoscopy, I always posted a request to my friends on social media to think positive thoughts and project smooth, pink esophageal walls, free from the eosinophils that represented disease. “Think pink” became one cousin’s regular response to my requests, and a local friend whose wardrobe tends toward black and grey regularly surprised me by wearing a pale pink top on endoscopy days, leaving me excusing myself to dry my tears in the bathroom.

Sometime in the afternoon that day-before, the hospital would call us to tell us when to arrive for the procedure. At a children’s hospital, the younger children’s procedures are always earlier in the day, since all children being put under general anesthesia have to fast for eight hours beforehand. As Sammi got older, the start-time for her endoscopies got later, a sign of how long she’d been going through this process.

Most often, we would have to be at the hospital early in the morning. Bleary-eyed but unexpectedly focused and efficient, my husband and I would pack everything we needed before waking Sammi and her sister Ronni. A friend would absorb Ronni into her home and morning routine long before school hours, and we’d drop her off on the way to the hospital. Often, Sammi’s grandmother would be waiting for us in the surgical waiting room, a new toy or fancy notepad in hand to distract Sammi as we filled in paperwork, collected a urine specimen cup for Sammi’s participation in a research study on eosinophilic esophagitis, and waited to be moved to a presurgical hospital room.

endoscopy dayIf Sammi was nervous during this time, she didn’t show it. By the fourth or fifth time, she had begun to remember the order of things, the friendly waiting-room concierge, and the forthcoming afternoon of movies on the couch at home when it was all done. She didn’t seem to dread it. Changing her into the gown and the awful paper underpants frustrated her, but we learned to do that at the last possible moment. Time alone with her grandmother, the TV in the room, and our steadfast cheeriness kept her from worrying.

None of that did a thing for me, on the inside, despite how collected I seemed on the outside.

According to a 2012 study by The Lancet, 34 people per million in the 1990s and 2000s died as a result of being administered general anesthesia. I assume that was 34 people per million surgeries. With every surgery, Sammi’s chance of dying rose ever-so-slightly, statistically-speaking. With every surgery, I became more and more concerned that this would be the one that killed her.

How many chances did she get?

How many chances did I get?

I walked her into the operating room every single time unsure of whether I would ever see her alive again, unsure of what the last words I would hear her say would be. That doesn’t mean that I thought she would die, but that I didn’t know for sure that she wouldn’t.

I sang her to sleep. I kissed her head. I told her I loved her, and I said goodbye.

Endoscopy days were hard. Really, really hard.

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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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