It’s Here

wind

Several weeks ago, I promised to honor my own work by being honest about how proud I was of it. I’ll be honest: I’ve never been more proud of something in my life:

Friends, I was published by The New York Times.

And, more importantly, it’s having just the effect I wanted. I’ve received messages on Facebook and via email from parents who are grateful to see their own worries and emotions reflected in my story. They feel less alone, less crazy, less guilty, because they, too, struggled to get their children fed, to be heard by doctors, to be seen by the world as more than someone failing their family.

That’s the power of telling my story. That’s the power of pushing, as I did, through ten rejections from this publication, through years of honing and rewriting, through researching and re-reading old medical charts and trying to understand the trail markers along the walls of the hospitals and grocery stores and the crumbs on my kitchen floor.

I’ve been working on this story for years now. Every time it’s lifted by the wind, more people tell me they see themselves in it. Every time I tell them I’m writing a book about it, they ask me to tell them when it’s done.

I know this: You’re not alone. I’m not alone. My manuscript is finished. I’m querying agents today.

Tell your story. Tell it again.

With every step closer to the end of these trials, I grew angrier that Sammi was still not eating well. The days of endless chopping, sifting, washing, mixing and running to the store for obscure ingredients, all in the service of keeping my tiny daughter from disappearing, were wrecking me.

After nearly a year, every banned food had been added back into Sammi’s diet and her esophagus looked inexplicably perfect. The doctors threw up their hands in surprise. No one understood it; no one tried, lost as they were in the celebration of this first child healed by diet alone. Given six months reprieve from diets and endoscopies, I sank into a seat at my kitchen counter and stared at my stove in disbelief.

Around me, my community celebrated. We were feted at restaurants, friends’ houses, and in our own home, where I pushed my labeled containers of arrowroot starch and dairy-free “milk” powder to the back of the cabinet. “She’s better!” people cheered, but I watched her, still worried. She didn’t seem “better” or even different from when we’d started.

She often said the food was coming back in her mouth…

from Feeding My Daughter in The New York Times


This has been a Finish the Sentence Friday post hosted by Kristi of Finding Ninee, with the prompt “when it comes to waiting…”

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There Was Joy

rear-view-mirror

There are so many things I had to refuse her.

I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.

Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window a mystery.

The winter turned into years, isolated and treading water. Continue Reading…

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I Can Hold It

Photo by Matt Lingenfelter, Taken at The Moth

Photo by Matt Lingenfelter, Taken at The Moth Chicago

 

That’s me.

I was on stage at The Moth, a storytelling event that happens several times a month in Chicago. I was telling a story about mistakes, the story about how a host of people missed the right diagnosis for my daughter when she was a baby. I felt confident, telling this story. The lights on stage were so bright that I couldn’t see the crowd, and I didn’t feel anxious or wrong or awkward. I just told it, calmly, always always always hoping someone in the crowd will come to me afterward and say “your story compels me.”

Compels them to what, I’m not sure.

What surprises me about this photo is how my fists are clenched. They’re tight. I didn’t feel tight or clenched. Continue Reading…

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It Happens Every Year

in-just-spring

Every year, spring shows up like a surprise party. I spend the winter in a midwest funk of grey on grey on dirty brown, trudging through alley slush and tensing my muscles against hidden ice, head down, every slog a sigh.

And then one morning, I wake up and see the sun sliver its light through the curtain, and I go downstairs to find my children are in short sleeves, their bare arms the same beautiful smooth gift I treasured each spring when they were tiny. Now they’re sparkling teenagers, up before me, deep into videos and social media before I can stumble down the stairs each morning — but I still treasure those bare arms, the pieces of them I forgot over the long winter, more skin to marvel over.

They used to live inside me, those arms.

Outside, sun shines brightly, and a check of the weather forecast tells me those short sleeves are audacious choices still, but not so audacious as they would have been last week. And maybe, just maybe, today is the day for my first non-treadmill run of the year. Continue Reading…

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Contrast This

ct-scan

About six weeks ago, I tripped over a bolt jutting out of the floor of my garage and landed, head-first, on a spare car battery. It became clear within a few hours that I had a whopping concussion. In the impossibly bright lights of the emergency room, a friendly young resident told me she was considering whether or not to give me a CT scan.

“It’s just how tender your skull seems to be,” she said, puzzling it over. “I’m a little worried about whether you’ve fractured it, or whether there’s any bleeding in your brain.”

“What are the reasons for and against it?” my husband, ever the pragmatist, asked her.

“Well, if we did it and found out she has bleeding, we’d definitely keep her overnight, just to be able to check her regularly and get another scan in the morning.”

“So, why not do it?” I asked.

“Well, it’s a lot of radiation, is all…hang on a minute,” she mused, paging through my chart. “How old are you, again?”

“Forty-four, last week,” I told her.

She did what looked like some mental calculations in the air above her, then recommended that we do the CT scan. When pressed, she explained that the cancer risk comes about forty years after the exposure to radiation. By then, she calculated, I’d already be pretty old. It was a worthwhile risk, given the math. Continue Reading…

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