Holding Things

insideSammiBetween 2010 and 2013, between the ages of four and eight, my daughter Sammi had ten endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they inserted an IV with heavier anesthesia and fluids, took a blood sample, inserted a mouthpiece and fed a camera down into her esophagus. They took pictures and they took biopsies — tiny pieces of her esophagus to test for the presence of eosinophils, the white blood cells whose functions, according to Cincinnati Children’s Hospital, include

movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses. 

Ten times. They did that to her ten times in just over three years. They did that because she was still experiencing the symptoms of GERD — also known as “reflux” — past the age that a child would normally outgrow it. We took her to a major children’s hospital gastroenterology practice, a practice in the same hospital that had corrected her cardiac issue when she was a baby. Keeping everything in the same hospital made sense to us, at the time. All the records would be together, we thought. There would be less repeating ourselves, far fewer requirements of us to remember dates and test results — all the information would be stored with her chart.

We believed in the power of information sharing among professionals, which was a mistake. Continue Reading…

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Just Finish

pleasefinishIn the fall of 2013, Sammi’s mealtimes became the most tortuous they’d ever been. Eating enough food took every free moment of her day.

Like the endless meals of her earlier years, Sammi’s times of sitting at the table became a fight between my instinct to fill our relationship with more than just the constant nagging to eat and my growing worry over how obviously difficult it was for her to get enough calories in a day. I could feel my blood pressure rise every time I watched her sit, holding a spoonful of uneaten food, and talk to me about what she had seen on television or what was happening at school. No food was tasty enough to hold her attention. She would rather do anything other than eat.

“Just. Eat. That. Bite,” I’d say with my back to her, clenching my jaw.

Ten minutes. Twenty minutes. Thirty minutes. After half a cup of cereal and milk, it was time to leave for school. On a good day, she would eat half of a small quesadilla, a few crackers, and one Oreo for lunch. On a bad day, just a few bites of her quesadilla. At dinner, she stopped every five minutes or so to refill her water, go to the bathroom, or inexplicably stand up and bounce next to her seat. By 7:45 — usually more than 90 minutes after dinner began — we would have to stop her meal so that she could go to sleep.

Massive doses of Prevacid — a proton-pump inhibitor that kept her stomach from producing acid — took away her symptoms, but anything less than a crazy dose returned her to us as the sunken-eyed, chronically underfed child we’d struggle to help through a day.

To say that this process was maddening is to touch only the surface of the fury it brought up in me. Why couldn’t she eat like a normal kid? I spent much of each school day in a state of cognitive dissonance, trying not to think of how few calories she was taking in, how little fuel she had to get her through gym class, recess, and a day of learning.

Her gastroenterology team told me, whenever I worried to them, that these kids with eosinophilic esophagitis are notoriously poor eaters. They feel nauseated a lot of the time. They have bad associations with food. They don’t know any different, so they can’t describe the feelings to us. This is their normal, the doctors and nurses told me. Continue Reading…

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Something Missing

10qmoreThe ten days between the beginning of the Jewish new year (Rosh Hashanah) and the Jewish day of atonement (Yom Kippur) are sometimes known as the “Days of Awe.” Many Jews feel the pull of either ritual, tradition, or introspection during that time of year. My fairly typical Jewish familial history included new outfits for synagogue, time-consuming baking and cooking for the holidays, and, only peripherally, some discussion of what the year behind had meant and what the year to come would bring.

All of that changed with the birth of my children. I found myself looking for some pieces of meaning to take from the holiday beyond the trappings of fashion and coffee cakes. I listened to the rabbi’s sermons, started reading the commentary in my prayer books during services, and seriously observed tashlich — the ritual of throwing bread crumbs in the water to discard the previous years “sins.”

And then, in 2012, I discovered 10Q. Continue Reading…

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All the Fruit

raspberriesIn the winter of 2006, when our youngest daughter Sammi was just over a year old, our neighbors invited us to their Christmas Eve party. We knew they’d always had a huge gathering of friends and family, and so that afternoon, we arranged to have a huge and elaborate fruit bouquet delivered. Later that evening, when our host greeted us, he said his young grandson had been staring longingly at it all day.

“Fruit is his favorite thing,” he said. “We wouldn’t let him have any until the party started. When the first people rang the bell, he raced for the fruit!”

I remember very clearly thinking that this little boy had been raised right. If fruit was his favorite food, then he had chosen it over sweets, chips, and other junk. I secretly had always admired people like that — people who really preferred healthier food. Those people would have an uncomplicated relationship with their favorite foods; those people would be lucky.

In a few short months, however, I would learn what it meant when a child preferred fruit over everything else, and sometimes to the exclusion of everything else. Sammi’s love affair with blueberries wasn’t exclusive — it was part of a larger issue with swallowing anything that wasn’t wet and cold, even though we didn’t know it until she was much older. From her early years of eating blueberries soaked in cream or drenched in warmed coconut oil, to the infuriating meals where we made her eat some calorie-dense dessert before she was allowed to have her beloved bowl of raspberries, to the months of restricted diets during which I would be grateful that she saw fruit as a delicious treat, I would spend the next years wishing I’d never had a jealous thought about that neighbor’s grandson and his love of fruit.

Practically, there were benefits to this pickiness. Had she preferred candy or pork rinds or something generally considered to be “junk,” we would have let her have it anyway, desperate as we always were to get calories in her body however we could. On her last day of preschool — which coincided with the first week of her intensive elimination diet for eosinophilic esophagitis — I took her to pick out some treats to share with her friends. The only candies available at that time that had no dairy, egg, soy, nuts, or wheat — and were not prepared on the same equipment as those things — were DumDums and Smarties. I let her get a bag of each.

“All that sugar isn’t good for a girl her age,” an old lady spat at us as we walked past her toward the register.

I didn’t say anything. Anything I could say would be too long and too ugly to say in front of Sammi.

But fruit! Well, fruit was never questioned. When she brought raspberries for her kindergarten class for snack — fifteen dollars worth of raspberries because that’s how much it costs to feed raspberries to twenty kids — I received nothing but praise. When her snacks at camp were bowls of strawberries and grapes I had to prepare at home because I didn’t know what would be on the cutting boards and colanders of other people, I was hailed as brilliant for convincing my child to like fruit. When she ran squealing to the farmer’s market stand every week to choose anything she wanted, people smiled with approval.

A cup of raspberries is 65 calories.

A cup of Cheezit crackers is 312 calories.

When you are trying to grow a child — to grow her brain, to grow her skinny legs and her sunken eyes and her ribs you can see and the top of her sweet head, which is a foot below the heads of her friends, the choice of raspberries seems less saintly.

Picky eaters are usually the ones at which that the world points a judgmental finger and whispers, how can that child’s mom let her eat only chicken nuggets and sliced apples every night? or I can’t believe he will only eat bagels and cream cheese for lunch — isn’t this the fourth year of that? Picky eaters are sometimes fat, sometimes skinny, sometimes indulged, sometimes not — but no one noticed my picky eater’s choices as picky because they were so universally held up as healthy. Meanwhile, she was anemic, underweight, failing to thrive, and, as it turns out, struggling to swallow.

We all love fruit in this house: berries, grapes, melon, stone fruits, apples, pears, all of it. But now, after years of my mother teasing me in my youth about not liking fruit and calling it “the F word,” and then years of my daughter’s childhood using fruit as a bribe to eat one more cookie, one more bite of pizza, one more slice of cheese, my relationship with fruit is complicated.

And who ever says that?

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Limbo

Swallow, My Sunshine: Limbo

Eosinophilic esophagitis does not have a cure.

There is currently no end for this disease, and little is known about what triggers it. Most of the time, it’s a food protein, though some children seem triggered by things in their environment. The food triggers can change over the years, which is what informed the comment I heard soon after my daughter’s diagnosis from the mother of another child with this disease. When I told her that I hoped my daughter Sammi would be one of the kids who responds well to an elimination diet and finds just one or two food triggers, she said, “They lose more and more foods as they get older. Eventually they all end up on the [meal-replacement] formula.”

So, during the fifteen months between Sammi’s remission and the relapse of her symptoms, I always knew it wasn’t over. Continue Reading…

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