Spinning the Story

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The first time I wrote about the NICU (other than in emails to family and friends), it was for the NICU Testimonial binder in the Alta Bates Family Lounge. I knew I was writing for other preemie parents and so I squeezed every silver lining out of our three-month NICU stay. The way I spun the story, you’d think we had spent that time in a hotel, not a hospital.

I emphasized the friendships we’d made with the nurses, doctors, social workers, security guards and parking attendants. When I talked about the birth of my micro-preemie twins, I gave just the facts: born at 25 weeks and four days, weighing just over a pound and a half apiece. I didn’t talk about how I tried to find strength through stoicism and its polar opposite, bad jokes.

The NICU staff had offered a lifeline of support to my husband and me, much more support than I’d received thee years earlier when my full-term daughter had been born, I insisted.

The more I wrote, the more I shared my words with others. I submitted my essays to online magazines and writing conferences. At my first writing workshop, I proudly presented an essay outlining how I coped with micro-preemie twins who needed around-the-clock care for their first months of life.

“We want to see you be emotionally vulnerable,” chorused the writers in my group. To them, my words were an essay that needed to be shaped and sculpted to fit and hit certain storytelling marks.

But for me, it was my life. I couldn’t admit that I was emotionally vulnerable. That would mean acknowledging how small and fragile my babies had been. It would mean facing the long list of ailments and disabilities that my babies could have had—or might still have. At a year-and-a-half old, my twins still had developmental delays. Just thinking about it felt like a pitch-black fist grabbing at my gut.

Listening to the comments of my colleagues brought me back to the NICU, the way I’d been 18 months earlier, standing over my twins’ isolettes, watching the numbers flicker on the monitors. Wondering if the boys would stabilize by themselves or if they’d trigger the alarm. Never sure what the long-term impact of their prematurity would be. Before I knew it, I was sobbing in front of twelve people, who, just a week earlier, had been total strangers.

“I’m sorry,” I sobbed, chewing on my lip. “I just realized that the NICU was really scary.”

“Of course it was,” said the workshop leader, a novelist who herself had had a baby in the NICU.

I spent the rest of the afternoon walking around in a daze. From time to time I would remember a certain detail—the cinnamon smell of the soap in the family lounge, the teddy bear magnets with all the babies’ names on them, the hum of the breast pump—and it would take me right back to the NICU.

And then a curious thing happened. I began to notice sounds around me. Birds chirping, crisp footsteps, the whistle of wind. It was as if to block out the gravity of the NICU, my brain had stopped listening to the world around me.

From then on, when I wrote about the NICU, I added what I saw to how I felt. Now, in addition to describing the nurses who had carefully arranged tubes and wires so I could hold my babies skin-to-skin, I also recalled my nervousness and my doubts. When I found just the right words to describe my memories, the fist in my gut would loosen. Being honest with my feeling and being authentic in my writing was actually a comfort, like those pastel blue scent dolls I used to put in the boys’ isolettes.

Seven years later I still bite my lip when I think about those early days. My stomach still flips to think about the texture of their skin, so thin and papery or their squawky cries when I had to put them back in their beds. But I also think about the moments before the cries—the warmth of their tummies, the smell of baby boy in the whorls of their hair, their tiny fingers clasping mine—and the images dance together to complete a picture of hope, fear, uncertainty, and love.

Forgotten Anniversaries

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These last two weeks I’ve had the nagging feeling that I’ve forgotten someone’s birthday, someone close to me. In other words, a date that should be committed to memory forever and always.

But when I go through the list: husband, children, parents, in-laws, nieces, nephews, siblings, and good friends, I come up with nothing. Nothing but the tug that I have missed celebrating a milestone.

Yesterday it dawned on me. Seven years ago, on March 30, 2010, after three months in the NICU, Wagner came home. Two days later, on April 1st, Michael followed.

Chiara was only three years old at the time, and we made a banner to hang in the dining room: “WELCOME HOME MICHAEL AND WAGNER!” We made thank-you cards for the doctors and nurses and everyone else who’d stood by our side during those three long months.

We took pictures to commemorate the day. Pictures of Michael’s nurse with her finger on the “off” button of Michael’s monitor. Pictures of Chiara’s artwork that we’d hung over the boys’ isolettes. Pictures of our locker in the family room. We brought home souvenirs: bottles, preemie diapers, thermometers, and even oxygen-saturation cuffs.

With each photo I knew I was committing our NICU stay to memory, finally allowing myself to exhale. We’d made it this far. Taking our three-month old babies (who were really newborns for all practical purposes) home.

It was a day I vowed I would never forget.

But then I did. This year March 30th and April 1st came and went without acknowledgement. When I did remember, the boys were swimming in Grandma’s Florida pool, splashing and shrieking, playing some kind of intricate game of tag with the pool noodles. You can still see the scar from their PDA surgery that traces the edge of their shoulder blade, but if you know what to look for. Other than that, you’d never guess.

You’d never guess that they were born three and a half months early. Or that they weighed about a pound and a half apiece. You’d never guess we had to do special exercises for their joints or that Michael didn’t breathe on his own until the week before he was discharged.

If you looked at them now, you’d see very little evidence that they had any challenges at all. No traces of what impacted their first two years of life. None of it has any bearing on their lives today.

But I don’t think that’s why I forgot our homecoming anniversary. I think I forgot because I’m not the same person I was seven years ago. I’m not the person who was so terrified to be vulnerable.

The irony is when I vowed forever and always to remember our NICU stay, I began writing about it. And writing. And writing. I was writing to remember but I was also writing to convince myself that I wasn’t affected by our experience, not negatively anyway.

The more I wrote, the deeper I had to dig. (I should point out that this was not by choice—the deep diggers were my writing partners, critique groups at writing conferences, and later, my developmental editors.) As I revised and dug and polished and repeated the cycle, truths emerged. Such as, yeah, that NICU stay was pretty awful. And, yeah, I’m not cut out to be a family advocate for parents of preemies.

As a ballet dancer, I spent a lifetime evading truth. You have to. If you acknowledged what you look like in a white leotard and tights, you might never have the nerve to get on stage. Embracing the truth as a writer meant that I had to get on stage anyway. Little by little, I changed. Until the one thing I vowed to remember became an event that I didn’t need to commemorate.