Prematurity

The Roller Coaster of Awareness

hand and foot print tiny

It seems like everything has an awareness month. I bet, if you look hard enough, you can find at least one that applies to you. I always joke that May is Awareness Awareness Month since it seems to be a popular choice. Just for me personally, there’s Mental Health Awareness Month, Asthma and Allergies Awareness Month, and Preeclampsia Awareness Month.

I never gave much thought to the downsides of awareness months until I was lying in the hospital in early May, 2015. Rowan was a few days old and we were just at the start of what would be an almost six-week NICU journey. There were so many Facebook posts and news stories about Preeclampsia. It felt like a weird kick in the stomach – ironic, since the person who should have been kicking me in the stomach was in an Isolette on a different floor of the hospital.

November is Prematurity Awareness Month.

For some reason, it is hitting me particularly hard, this year. To be fair, everything is hitting me hard right now, and I don’t know what is the chicken and what is the egg. I’m feeling all feelings with a sharper edge. What normally might be little bumps and dips in the road, suddenly feel like a nauseating roller coaster.  My nerves feel raw.

Even when I’m asleep, my head is beating me over itself with reminders. Last week, I had a dream that I had another baby. But the baby was Rowan again, born so easily that I barely knew I was in labor until he was out. I felt intense guilt that the first Rowan, my Rowan, would feel less loved, now that there was this new version who I had come by with such ease. I was semi-aware that I was dreaming, and knew this wasn’t a reality that I would get to keep, and there were so many conflicting emotions regarding getting the birth I wanted, but not the baby I have.

My brain is not very subtle.

A few nights ago, I dreamed I was back in the hospital. I don’t even know what I was there for, I just know they kept trying to place an IV and I kept blowing veins. The entire dream was just a lot of sticking me with needles. So, I guess it’s not just the Rowan part of the equation that lingers.

A night or two after that, I had a dream about Rachael, my friend who died from complications of eclampsia just a couple of months before Rowan was born. I don’t remember a lot of details, other than being at UNCA and talking to her husband about writing a book. I do remember that it was very intense.

My therapist says I keep coming back around to all of this, even years later, because my brain is trying so hard to make sense of something that will never make sense. I guess it’s working overtime. Long day’s night.

The other thing she keeps reminding me of is our ability to hold two conflicting feelings at the same time.

Sometimes it’s difficult to reconcile the part of me that is still in pain with the various ways I have benefitted.

The last two weeks have been example after example.

A few months ago someone in a writing group I’m in mentioned a breastfeeding anthology that was taking submissions. I immediately wrote the story of the first time I ever attempted to nurse Rowan. In an extremely rare moment of confidence, I thought, “Huh, this isn’t so bad. Maybe I should aim higher.” That’s when the whole “almost-Oprah” thing happened.

Backing up a bit — one of my favorite writing resources is the website Beyond Your Blog. In April, they asked some people who write things to name their publishing goals for the next year. I said Washington Post’s On Parenting column, Good Housekeeping (because they are a print magazine that takes personal essays, and print was my goal), Parents, and then I listed O or Martha as my “a girl can dream” outlets.

When O Magazine showed interest in the Rowan essay, I guess I thought I could jump to the front of the line. And I was devastated when it didn’t work out.

If I go read my words from that Beyond Your Blog piece, I see that I said that, “On Parenting is definitely a high bar to reach.”

I reached reaaaaally high, up on my tip toes, and grabbed that fucking bar.

I couldn’t give my premature son more time in utero, but I could nurture him

And then, of course, I bent around backward to discredit the achievement. They must have lowered the bar. I guess nobody else was reaching for the bar right then. I had to write that piece a zillion times with the help of a million people, so who was actually doing the grabbing of the bar, anyhow?

But hey, I got published by the Washington Post! I can forever say that.

So then, this month’s TODAY Parenting Team challenge is NICU Parenting.

For every submission to the challenge, Pampers is giving $5 to the March of Dimes. I went through my back catalogue and republished all of my general-audience (not blog specific) NICU and preemie essays (well, the ones I retain the rights to). That’s $60 donated to help other preemie babies. If you click through to the NICU Challenge website, you’ll see that one of my essays is the very first featured essay of the challenge. It’s also the first piece I ever had published, way back almost two years ago. There are tons of other great (though sometimes heart-wrenching) stories there, too. Some from parents I have come to know over the last two years of writing content about Rowan.

The editor for TODAY Parenting Team said she would feature as many as she could on the Facebook page. I was happy to see they used the Rowan-giving-the-finger photo as the Facebook share photo for the Open Letter to Preeclampsia piece.

 

I got an email the other day from a producer at the TODAY show, asking for me (and a couple of others who have written for this TODAY Parenting Team challenge) to send in some hi-res photos for them to use in a collage in the set background for a piece they are doing on prematurity. What young adult me would think about my premature son sharing airtime with Carson Daly and Al Roker?

daily show preemie

So that’s how four pictures of Rowan ended up on the TODAY show. And how my left boob (in a tank top, y’all… not my actual boob) ended up behind Savannah Guthrie’s head. Also, Elton John was the guest, and Steven pointed out that maybe he’s seen a picture of Rowan now. And my left boob.

rowan's close up

 

So it’s just a lot of being aware.

It feels like it’s of my own making. Not quite post-traumatic growth, but not quite avoidance, either. I’m doing what makes sense to me, but it is coming at a price. I guess ultimately, writing and reading and more writing is just another way my brain is trying to put all the pieces together. Unfortunately, the puzzle got wet and the pieces are all warped and sort of soggy and will never work correctly again.

I keep thinking of the parents for whom the puzzle was never complete. Those who never got to bring their babies home. And the moms who have died. Yeah, I’m struggling, but I’m also so fucking lucky.

I think of these families seeing all this prematurity awareness stuff and my heart aches for what they must be going through. I was reading a story yesterday about a baby who was born at 21 weeks and 6 days and survived. And then I cried for the women in the comments whose emotions were torn apart because they lost their babies of similar gestational ages.

The photos of these micro-preemies have to be nearly impossible to deal with if the memories of your baby is always frozen in time at that size.

Yet, here we are, Rowan and me; by all accounts pretty much unscathed. Some lingering questions, of course. Prematurity will follow him for many years.

My brain feels less unscathed. Searching, searching, always searching. It’s what it does. And this situation has been like fucking crack for the OCD parts. Let’s look at it from every angle all the time because maybe, just maybe, someday we will make sense.

It’ll never make sense.

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Rhiannon Giles

Rhiannon Giles is a freelance writer from Durham, North Carolina. She interweaves poignancy and humor to cover topics ranging from prematurity to parenting and mental health. Her work has been featured on sites such as The New York Times, Washington Post, Parents, Scary Mommy, McSweeney's, and HuffPost. You can find her being consistently inconsistent on her blog, Facebook, Twitter, or Instagram.

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