FULLY AWARE: PREMATURITY AWARENESS MONTH

November is Prematurity Awareness Month and Saturday, November 17 is Worldwide Prematurity Day.

Every year 380,000 premature babies are born in the U.S. alone. That’s nearly 1 in ten babies born too soon.

Every year I joke that I celebrate Prematurity Awareness Month early—in July, because that’s how early my twins were born.

Due in mid-April but born at the end of December, my micro preemies weighed little more than a pound and a half apiece at birth.

They spent three months in the NICU with heart monitors and breathing machines. For the first two-and-a-half years, we shuttled back and forth between early intervention specialists.

One for hearing, another for speech, a third for fine motor skills and a fourth specialist for gross motor skills.

Today they are nearly nine years old. They play chess, baseball, and Minecraft. Today they are “fine.”

While our boys were still in the hospital, I started writing. I wrote about what it was like for the NICU to feel like a home.

I wrote about trying to shield my then-three-year-old daughter from my uncertainty and fear. Mostly I wrote to reassure family and friends that as bad as it sounded, we were fine.

My occasional blogging turned into a memoir, Spinning: Choreography for Coming Home, portions of which also appeared in the first Multiples Illuminated anthology as well as in a collection of essay portraits published by our hospital.

We are fine, I repeated. We came, we conquered, we never looked back.

This year, I decided to honor Prematurity Awareness Month in November along with everybody else. I organized a book giveaway for my memoir.

I subscribed to the March of Dimes for updates and joined a Facebook support group for mothers of micro preemies.

Almost immediately I realized why I don’t participate in activities around Prematurity Awareness Month.

I am not “fine.”

Scrolling through the Facebook posts, I read questions from moms of micro preemies: When did your baby go off oxygen? Has anyone else here had a PDA surgery? Are daily apneas still normal at 32 weeks?

But these mothers don’t want answers; they want clues. Will my baby be OK? That’s what they are really trying to find out.

I know there are sights and smells that are tightly wired with our memories. When I smell a certain kind of vinyl, I am sixteen years old again, dancing in Jewett Studio at San Francisco Ballet.

When I hear the Gypsy Kings, I am transported to Iceland to the only pizzeria in Reykjavik.

When I see a photo of a micro preemie, I am sucked back to nearly nine years ago, standing over my sons’ isolettes.

My throat constricts. My stomach tightens. My eyes feel tired and swollen. My chest hurts. My heart shrinks inside itself.

I don’t remember what I know now: that many micro preemies—like my boys—grow healthy and strong. With enough time, they become indistinguishable from children born at term.

I only feel the dark, paralyzing fear and a fistful of grief for a future that hasn’t yet come to pass.

Meanwhile, my inbox fills with facts and tips. The United States has the highest incidence of premature babies of any developed nation. Last year, fifteen million babies were born prematurely worldwide.

Trying to participate in the activities around Prematurity Awareness Month are more of a trigger than a healing. I leave the Facebook group. I unsubscribe from the March of Dimes.

I see my boys as they were then: fragile and yet resilient at the same time. Their strengths were so hidden, so completely abstract.

To look at them you would have seen greenish, wrinkly babies with skin so pink it looked like a scorched sunburn. Somewhere in that baggy skin was resilience and grit. Determination and courage.

I see my boys as they are now: they tell jokes about butts and write songs about farts. They snuggle with me in the morning and play wall-ball with their buddies in the afternoons.

Maybe I’ll never be ready to celebrate Prematurity Awareness Month, but I’m fully aware of the joys I hold and the journey that took us here.

About the Author

Janine Kovac is the author of SPINNING: Choreography for Coming Home and Brain Changer: A Mother’s Guide to Cognitive Science. 

She is the co-founder of Moxie Road Productions, which helps writers put their words into the world and a founding member of Write on Mamas.