Trigger

triggering

 

She was sitting on the couch facing me when I opened the door to the apartment. In a deep-cut v-neck t-shirt, beaded necklaces dipping into her cleavage, my roommate asked me why I’d put the ironic knick-knack I loved back on top of the stereo speaker.

“Because I think it’s funny,” I said.

“But you know I hate it,” she answered, her fingernails pressing into her thighs.

“I know,” I answered her, clutching my backpack, “but you do a lot of things that I hate, too, and you don’t seem to care. Why should I?”

“So you put it up there for revenge?!” she asked, still sitting. I watched a patch of red begin to creep up from between her breasts into the v of her shirt.

“Basically, I guess?”

“You know,” she said, rubbing her hand along the knee of her jeans, “I sometimes come home at night when you’re sleeping, and I stand outside the door to your bedroom, and I have to force myself not to come in there and beat the shit out of you in your sleep.”

“You’re crazy,” I answered, staring at the french doors to my room, and then at her neck, which has grown crimson to match her chest. “That’s what a crazy person says.”

“I’m not crazy. I just hate you.” Continue Reading…

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This Is Not Normal

ftsf-jump

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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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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