All the Paths from Stuck to Motion

all-the-paths

1.

I put on clothes before I go downstairs every morning. It’s a new rule, in my head, a ward against a world in which so many have switched to sweatpants and pajamas all day and in which I know I would roll slowly down into deep sadness if I didn’t put on real clothes. Pants, top, bra. Deodorant. Brush hair and teeth. Deep, deep drags on the morning inhaler as my city fills with the bored smoke of too many fireworks celebrating nothing. The path from the bed to the closet to the bathroom is the first trip I take every day, moving from another-day-like-yesterday to maybe-this-shirt-will-make-me-feel-better.

2.

If the clothes I’ve put on are running clothes because the air quality has passed muster outside, the path down the stairs to the back foyer is next. Sneakers. Little stretchy pouch for my inhaler and my key and, now, for a mask I sometimes pull out and clutch in my hand as I trod past Lake Michigan, making ten-foot arcs around septuagenarians walking in pairs. Go too far north and the path is clogged with people, forcing my mask over my face, so I go west, past the shoe store and the shuttered bakery and the tiny nail spas that can’t be doing well. Past the rose garden, past the funny goose statue they dress in giant bows and rainbow capes. I come back to my yard, panting, and sit at the picnic table to upload photos of flowers and waves to Instagram. All my photos are of flowers and waves and food, all the miracles I pin there to remind myself that they exist, still, even among all of this. Continue Reading…

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Let Me Weep

I am a midnight writer
I am a sole survivor
I am chemicals colliding

Awake late in the night with a baby in my lap, I have turned the tv on low, the mist from the nebulizer clouding the screen. Though the steroid drugs wafting from the machine should amp my daughter up, she is limp across my thighs and sweating damply into the crook of my elbow. It takes twenty minutes to give her a full treatment, until the hissing starts breaking up and popping sounds come from the ampule of liquid feeding the machine. I run my finger down her velvety arm, feel my pulse quicken.

Years later, I find that an afternoon Diet Coke takes me past the edge of hyper over-exhaustion and into sleep. What should stimulate me — caffeine — sometimes helps me rest. I drink it in the bright sun streaming through my window and then lay on the couch, drifting. My daughter and I, it seems, have our own rules about sleep.

Continue Reading…

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Where To, Lady?

where-to-lady

Today, I could work on this web site or this other web site. 

Or I could spend some time writing that essay or commit to the next chapter of can I start calling this a novel?

There’s laundry piling up, and there are appointments to schedule.

Also, what am I making for dinner?

My life for the last seventeen-plus years has trained the focus right out of me. 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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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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