Unexpected Miracles in Unpleasant Places

gfchallahA through line — sometimes faint, and mostly cultural — in my journey of being a wife and mother has always been my identity as a Jewish woman. Like so many people in my generation, I was dropped unceremoniously at the door of the religious school three days a week, twice for Hebrew lessons that were little more than decoding an unfamiliar alphabet, and once for the study of Jewish laws and history. I sat through many Friday night Sabbath services enthralled with the voices of our choir and of our cantor, a deep bass whose lowest notes made me imagine the voice of G-d. I went to three days of services on the High Holy Days, had a Bat Mitzvah in which I chanted a Haftorah portion that I’d never seen translated into English. I knew which foods went with which holidays: challah with the sabbath, apples and honey and mandelbrot with Rosh Hashanah, matzo ball soup with Passover.

It was all a ritual and surface-level observance. What held me to it was my mother and father, and their parents, and the parents before them, the long tail of history and the other-ness that held us together. “In the end,” I was told over and over, “you’ll be seen as a Jew no matter what you do.” Of course, that was a reaction to the recent history of the Holocaust, but I took it at face value, as least as it applied to the wider world’s opinion.

As a young adult, I fell in love with and married a Jewish man whose connection to Judaism had been stronger than mine, but brutally interrupted when his father died far too young and far too suddenly. He believed in having a Jewish home, but neither of us paid particular attention to the particulars of that. Before we had children, it was still the faith of our parents.

Becoming a mother forced me to decide how to reconnect to this faith in a way that would mean more to my children than whatever the Hebrew lessons and matzo balls had come to mean to me. Rather than a religion of their parents, I wanted my children to see themselves as Jews of whatever type moved them.

And then Sammi, my younger daughter, was born with a host of medical issues that took years to unravel. For many holidays during the years when her health changed our entire family’s diet, the connection of faith and ritual to food became tenuous. How do we define the sabbath without a challah? For that matter, how do we define a challah? According to Jewish law, a challah to be used for religious purposes has to be made of wheat, barley, spelt, oat or rye. What, then, of my gluten-free challah during Sammi’s six-food-elimination diet?

Was that challah Jewish? As I grappled with why this was the path my little girl’s health had taken, was I more than a mother pantomiming faith for her children? Continue Reading…

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6 Things Not to Say to a Family on a Medically Restrictive Diet

talkingBetween my daughter Sammi’s birth and her ninth birthday, she spent nearly all of her life on some kind of medically-restrictive diet. Whether it was being forbidden to eat grains as a baby, following an acid-free diet as a refluxing toddler, using the six-food-elimination diet to uncover the cause of her (incorrectly-diagnosed) eosinophilic esophagitis as a little girl, or choking down the unpleasant fat-free food that kept her safe from chylothorax after her cardiac surgery, we often had to define what our whole family ate by the things that Sammi had to avoid.

During all those years, I heard a number of unhelpful comments about what I fed my child, ranging from the well-meaning but insensitive to the downright offensive. If someone in your world is eating a diet that their doctor has prescribed, the following comments should never, ever come out of your mouth. 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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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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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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