Breathing Fine

winterskyYesterday, I drove through salt-bleached, frozen streets on my way to retrieve my daughter and her friends from school. The temperatures here have been dangerously cold; I am regularly rescuing my children from the frigid walk home.

As I drove my empty car past the grey of filthy alley snow under a colorless sky, I half-listened to the music playing through my speakers. I believe in the Oracle of the Random Playlist, my name for the theory that whatever plays when I hit “random” is a coded message from the universe. Several fiddle tunes and a standup comedy bit from Ellen DeGenerous later, I heard the opening piano chords from John Legend’s song “All of Me.”

I’m not much of a pop music fan, as any of my friends can tell you, but parenting brings surprising gifts. Beginning with Owl City when my older daughter was in elementary school, I found myself reluctantly led back to paying attention to the radio when my daughters started singing it at home. In 2014, as my husband and I waited for months to tell our younger daughter Sammi that she would soon be facing a second cardiac surgery, she came home from her school’s chorus practice one day singing “All of Me.” I listened from the front seat as she hummed, then asked her what she was singing. She opened her mouth and sang,

What’s going on in that beautiful mind?
I’m on your magical mystery ride,
and I’m so dizzy,
don’t know what hit me,
but I’ll be all right…

“That’s so pretty, sweetheart!,” I said then. “What’s it called?”

Her big sister told me the name of the song, and I looked it up later. I remember sitting crosslegged on the floor of my kitchen, listening to the song online, and feeling the earth underneath me roll and undulate like waves. It felt personal. It felt cruelly perfect. Continue Reading…

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Three Days of Reckoning

stroller

When my now-eleven-year-old-daughter Sammi was still in my belly, I had a dream: a thin girl with straight, dirty blond hair and glasses, about nine or ten, was pushing a stroller at the zoo. I couldn’t see who was in the stroller, but something told me that pushing this stroller was very important for that young girl. Standing in place, her thin legs visible under short-shorts, she pushed her glasses above her eyes and wiped the bridge of her nose, then leaned forward, pressing her arms out and putting all her weight into the stroller. It rolled forward, and a gaggle of children I couldn’t quite make out ran and pranced around her as they moved toward the nearest animal exhibit.

That’s all the dream was — a girl I’d never seen pushing a stroller — and, at the time, I knew it was important but couldn’t quite figure out how. After all, I didn’t know I was having a second girl, and this baby in my belly had a round, dimpled older sister with a head full of huge dark curls.

But now, this week, I glimpsed a shadow of this image in real life. Sammi stood in a paper gown, waiting for the pediatrician. She had tried sitting on my lap in the chair, but her legs are now finally long and gangly enough that this is uncomfortable for both of us. I offered her the chair, but it was cold against her bare thighs, and she wanted to avoid the examining table until she had no other choice. So, she stood there: petite but solid, the plastic belt of the gown forcing the beginnings of a woman’s figure into my imagination, and I thought to myself: I really never pictured her at this age. Continue Reading…

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Let Me Take You There

doorA hundred lifetimes ago, in undergraduate and graduate writing workshops, I studied the ways that tense and perspective change the tone of a story. When it comes to my emotions and my words, I find that tense and perspective are the best tools I have for bringing readers into the story quickly. For example: What happens when I tell this in the past tense — “My daughter could barely breathe” — versus when I tell it in present tense: “My daughter can barely breathe”? What happens when I tell a story in first person (“I was frightened“) versus when I tell them the story in second person (“You will be far colder than one would expect“)?

For me, past tense offers distance. As I write in past tense, I feel separated from the events. I can write without getting too caught up in the moment as I experienced it in real time. I am calm, almost clinical in my descriptions. It reminds me of the unwavering steadiness I’ve been able to construct in moments of real trauma by simply breathing deeply, disassociating from my emotions, and behaving like a soldier on a mission. In past tense, I am a reporter, and even when I report on the raw and furious emotions in our family’s history, it is with a detached, analytical eye.

Present tense is where I get you invested. I am here, in the sun-filled living room, with the baby in my lap who is struggling to breathe. Or, I am lying on the floor of my basement in the cold dark, and I think, for a moment, that I can hear my screaming daughter two floors above me as I sink into the drugged sleep of a woman past the edge of exhaustion. You are watching me in real time. Neither of us knows what comes next. We are both — writer and reader — in my mystery. Continue Reading…

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Oversharing, Awareness, and the Muddled Middle

http://mamalode.com/story/detail/how-blood-dancesWhen my medically complicated daughter was only a few years old, a close family member said something that I’ve never been able to forget. I’ve thought about it often, especially as I’ve been writing about my daughter so publicly.

This family member was a new parent with a fussy, unhappy baby. He was complaining that nothing he and his wife were doing to soothe their baby was helping, and I asked if they’d asked any of the parents in their new baby group for ideas.

“No,” he said, “we’re just more private.”

“But maybe someone knows of something — a product or a position or something — that might help,” I countered.

“Look, that’s not how we are,” he answered. “That’s more you. You’d tell any random stranger in your kid’s kindermusic class all about her medical problems no matter what they’d think about you.”

At the time, I felt slapped. I felt hurt, and I felt judged. The tone with which this was delivered was so derisive, as though I was indiscriminately blurting out the story of Sammi’s first cardiac surgery to anyone who didn’t run away when I opened my mouth. It made me feel like an embarrassment.  Continue Reading…

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Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

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