Something Louder

I’ve had an intensely difficult month.

To protect the privacy of my family, I have to be vague, for which I hope you will forgive me. I’ve always been very open about the heartache of my daughter Sammi’s first eight years: the confusion and the instinct I had to push through it, the fear I had about her breathing and eating, the confidence I somehow found inside me to urge all of us forward to a real resolution to her challenges. As much as was age-appropriate, I have always asked Sammi what she felt comfortable sharing through this blog and through other writing. She wants the world to gain something from her journey, as do I.

But this last month, the heartache and the excruciating journey have belonged to my parents, and it has been dramatic, painful, and frightening on a physical level for them and on an emotional and spiritual level for all of us. It kept me away from home for most of the month, away from my husband and daughters and a million miles outside my comfort zone. It did not and cannot end well, but that is all I can say about it without betraying their privacy. Continue Reading…

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However

I’ve barely written anything in the last week.

That’s not like me, and also, what IS like me anymore?

I’ve tried very, very hard to keep this whole thing afloat: my family, and my passion projects, and my work, and my faith in democracy and science and kindness and humans, but…

But. However.

My eleventh grade English teacher told me sentences cannot ever begin with the word “however,” so I put them in the middle of sentences, or maybe a third of the way into sentences, like this: There is not, however, a guarantee that working hard for years and years on a project will guarantee the outcome I want. And also, this: I believe in myself and my strength; however, lots of powerful and gifted people never get what they want most. Continue Reading…

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Going nowhere, slowly

I’m trying to teach my daughter to drive, but there’s nowhere to go. We order our groceries online for delivery, prescriptions come with a three-month supply, and school is taking place in our basement on a laptop. Where to drive?

Why, even?

But I’m doing it anyway, the same way I browsed grocery stores all gaggle-eyed and hopeful when our family followed the six-food-elimination diet for eosinophilic esophagitis ten years ago. My daughter was misdiagnosed, it turned out, but we didn’t know that as we ate food without dairy, soy, eggs, nuts and wheat. I pushed my cart around the store aimlessly, hoping for a surprise. Maybe, I thought, this brand will have discovered a secret combination of ingredients that tastes like what I remember, for once. 

Sometimes, that surprise DID come. I found that Fruity Pebbles, that horrible day-glo cereal my husband loved that made my throat hurt from the intensity of the sugar, fit the diet perfectly. I brought it home like a trophy, drizzled it with rice milk, ate it with a big fake smile on my face. Continue Reading…

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Accidentally Safe Six Food Elimination Diet Breakfasts I Accidentally Love

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In 2010, when my daughter Sammi was diagnosed with eosinophilic esophagitis (a misdiagnosis, it turns out, but that’s another story), I suddenly had to learn to cook without dairy, eggs, soy, nuts, and wheat. The restrictions were part of something called the “six food elimination diet,” a way to tease out if any of those major allergens (plus fish, which we’d never eaten before so didn’t need to eliminate) might be making her sick. To describe this as a lifestyle change is not so different from describing the stay-at-home orders of our current pandemic as “taking some time for myself.” It was a smackdown.

I felt like I had a handle on dinner, initially. I could do some things with beans and rice and gluten free pasta that seemed manageable. What really messed me up was breakfast. At the time, Sammi was about to turn five years old. Living, as we did, with a grown man whose favorite breakfast was highly processed simple carbohydrates flavored with chocolate or artificial colors, doused in soy milk, meant that most of the time, the ample supply of cereal was our go-to breakfast, especially for Sammi and her then-eight-year-old sister, Ronni. The first week of the diet, I spent a dejected half-hour in the “natural foods” section of the grocery store, returning with some very beige cereals that made both kids groan.

Eventually, we settled on a few things that worked for Sammi in the morning, not without a lot of trial and error. In the years that have followed — long past the end of the six food elimination diet — I’ve come to realize that a lot of what she and I both like for breakfast is still either safe for that diet’s restrictions or pretty darn close. Every summer, as reminders show up in my Facebook memories of what it was like to plunge face-first into cooking for that diet, I realize that it changed my palate, my cooking style, and my approach to feeding my family. Not all of it was bad. Some of it has made us — dare I say? — a little healthier. I thought I’d share a few accidentally safe breakfasts for the six food elimination diet here for anyone who’s searching for what the heck they’re going to eat in the strange new culinary world in which they find themselves. Continue Reading…

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This Is Not Normal

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Yesterday, my daughter Sammi went under general anesthesia for the nineteenth time.

The surgery was minor compared to some of the others she’s faced, and I wasn’t worried about it going poorly, but the moment I stepped off the elevator into the hospital corridor leading to the Pediatrics ward, I felt something in the air settle on me and seep in. It was familiar, heavy and soft and warm. It had a smell — cleansers covering up disease — and a visible quality like steam just moments before it evaporates completely. I walked through yellowish, dim light, floors and walls an indeterminate shade of grey or green or beige. There’s a haze to the air, and a weight. I felt something gently pushing on the top of my head and my shoulders. Gravity is more powerful on a hospital ward.

I’d forgotten that. Continue Reading…

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