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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Erased

samminecklaceBetween July 1, 2010 and April 10, 2011, I prepared over 800 meals that excluded some combination of dairy, egg, soy, nuts, and wheat.

Over 800 times, I checked and double-checked against the current list in my head. What is she allowed to have today?, I asked myself as the restrictions lifted, one by one. I paused as I used my mixing bowls, contaminating them with the newest addition, knowing I might have to throw it away if this food trial was a failure. I paused as I asked Sammi if she liked the newest recipe, worrying about the possibility of taking it away again later. I paused and paused again, rethinking each ingredient and each interaction around food.

When Sammi passed every food trial, her doctors could not explain it. They shrugged, confused, and sent us on our way. After more than 800 meals governed by rules and restrictions and embarked upon with my shoulders squared and my resolve set, the journey was over. We were at square one: all choices available to us, all foods a possibility, the road ahead open.

It was an unbelievable mindfuck. Continue Reading…

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Happy Thoughts

My daughter Sammi, for all the challenges she’s faced in her life so far, has always been able to embrace tiny moments of happiness. In part, I think it is because of a practice we started with her older sister before Sammi was even born; we call it “your happy thoughts.”

Here’s how it started: each night before bed, Sammi’s older sister Ronni would worry about bad dreams and, as a result, have trouble falling asleep, missing us even if we were just downstairs. We did not want to sit in her room until she was asleep, so we began giving her three happy thoughts to think about as she lay in bed. These were small thoughts for her small age, and they came from the day we’d just had or the day that was coming: the picture we drew on the sidewalk, the phone call with her grandparents, the plan for a zoo visit the next day. Her job was to think about those things while she waited to fall asleep.

happythoughtsWhen Sammi was born and old enough to talk before bed, we did this with her, too. “Don’t forget my happy thoughts!” both girls have reminded us if we try to leave their rooms at night without discussing them. In the last few years, we’ve asked both girls to generate their own happy thoughts, and when things have been hard for them, we’ve sent them out into the world in the morning to find their happy thoughts. Even before “daily gratitude” was in vogue, we had our happy thoughts at the end of the day. During times of intense medical drama with Sammi, my husband David and I have sometimes discussed our own happy thoughts as we lay awake at night, worrying. Continue Reading…

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Waking Up to the Pill Cutter

pillcutterIt was the summer of 2011 when, with no swallowed steroids and a totally unrestricted diet, my daughter Sammi was declared to be “in remission” from eosinophilic esophagitis, the disease with which she had been diagnosed almost exactly a year prior. Though we had turned our lives upside down to follow the prescribed elimination diet — including replacing our cutting boards, pots and pans to avoid potential cross-contamination — we were suddenly thrust, untethered again, into “normal life.”

Except one thing. Continue Reading…

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