Fragments and Money

fragmented winterBetween the December day when we received news of our daughter Sammi’s impending cardiac surgery and the surgery itself were nearly five fragmented, breath-holding months. During that time, life went on as usual: school, work, meals and concerts and the usual patterns of life with two children.

My days, already naturally broken into small chunks of varied activities, crumbled into bite-sized pieces of work and daily chores mixed with anxious Google searches and conversations over phone and email. In the autopilot that clicked on during repetitive activities like cooking or walking my children to school, I sometimes found myself unable to remember what had been happening in the previous ten minutes. How had I gotten to this corner? When did I add the onion to the pot?

Throughout, I was honest with friends and family about what was happening. Many had been with us for the Sammi’s entire medical journey. They had prayed and visualized a pink and smooth esophagus on each of her many endoscopy days. Some had arranged a spot in their pantry for a new, unused cutting board and disposable baking pans so that they could invite us for dinner during the hardest weeks of the six food elimination diet. These people were experiencing this with us, many of them nearly as deeply in love with Sammi as we were. They deserved to be in-the-know, and so I held very little back. We talked openly about the surgery and what it would entail; we shared whatever we knew and accepted their promises to hold us in their positive thoughts, whatever shape those took.

But some of them — more than a few of them — asked us the multimillion-dollar question: are you thinking about a lawsuit? Continue Reading…

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Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. 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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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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