Hand to Hold's Official Blog: Written by Parents for Parents

To Belong as a Preemie Parent

“I don’t think I’ll ever identify as a preemie parent.”

I remember saying those words to my best friend upon the early arrival of my son. It was not a label I felt entitled to wear, or a phrase I thought I would ever use to describe myself. If you’re thinking it was because I had a late-term preemie who only barely qualified as “early” you’d be wrong — my son was born at 31 weeks, weighing 3 pounds 3 ounces. Very premature by any standards, and yet I felt as though I didn’t belong in the world of of isolettes and measurements in grams rather than ounces.

I’ve had a devastating number of friends give birth to babies on the edge of viability. Babies whose survival was never a given. Babies whose NICU stays were measured in months instead of days. Babies who didn’t come home. Moms who didn’t come home. By comparison my son defied anyone who would call him a wimpy white boy, breathing on his own from the start and with only minimal setbacks during his six-week NICU stay.

I hope it is obvious that I didn’t wish for worse — did not want to see my son struggle more than he did. I wanted to distance myself from the worse-case scenarios as self protection. If I refused to join this club I hoped I could change the circumstances, to make it mean it wasn’t a big deal. He was never in any real danger, right?

It isn’t until I share Rowan’s story with others and take the time to look at their expressions that I see the truth. There is a lot of room between catastrophic scenarios and healthy full-term baby, and plenty of space for grieving what loss there is. I was only hurting myself by not leaving room to ache for all that we missed out on in those last nine weeks. I was only postponing my sadness and fear. I felt the universe demanded gratefulness for all that we had, and failed to let myself feel all the complicated feelings of those long NICU days.

This is not a club anybody wants to join. We don’t send in registration forms and admission essays hoping to gain admittance to this elite institution. This a group we are thrown into blindfolded and without any road map, because each family’s journey is different. We don’t get to chose if we belong — we just do.

So if you are starting this odyssey and are reluctant to participate, know that you’re not alone. It is not a contest in either direction and it’s okay to feel simultaneously angry because babies are going home ahead of yours, and acutely sad for the ones left behind. You are a preemie mom. You’re paving the way for those who follow, whether you want to or not. Your struggle is real and it is painful and scary and overwhelming, and you have a right to be terrified. You have every reason to mourn the end of your pregnancy, the birth, and the newborn stage you had been promised.

It’s okay to belong.

Love,

A Preemie Mom

Belonging is not a choice

Rhiannon Giles About Rhiannon Giles

Rhiannon Giles is an overwhelmed mother who only occasionally considers giving her children to the circus. Her daughter, born in 2010, was a full term induction due to Cholestasis of Pregnancy. Because she likes a full range of experiences she went with partial abruption and severe Preeclampsia for her second pregnancy. Rowan was born in 2015 via an urgent c-section at 31 weeks and 5 days, and spent 40 days in the NICU. Rhiannon has a sarcasm problem and writes regularly at rhiyaya.com . To keep up with new posts and see some of her favorites, join her on Facebook. To read more about Rowan's story, head over to rowan.small.and.mighty.

Comments

  1. Susan Hundley Sullivan says:

    This was so special to read, and especially the last paragraph is so important to remember. When our twin 26 week preemies were immediately admitted to the NICU, I remember not even wanting to look at the Neonatal Intensive Care Unit over the doors to enter. Maybe, if I did not look and read the words, the babies were not really so fragile. Then, as each day went by, I stoically scrubbed in to race to their private room – definitely did not want to accidentally encounter a nurse walking the halls with a baby much bigger and able to be out of an incubator – those encounters always set me back. Then, it dawned on me. Those larger babies being walked by nurses were in the NICU also and required the same level of care as our babies. You are only in the NICU for one reason and that was our common bond. I started on my acceptance of being part of the preemie experience that day. Today, we have two perfect and healthy 29 month old miracles.

    • brigitte says:

      Susan that was well worth relaying the stage when you hadn’t yet arrived at coping with potentialy more well babies still worryingly with risks.
      My son had taken in how much harder it could be for parents in riskier smaller baby scenes despite his own fears for his 29 weeker.He actually asked me to be quieter when in my excirement about being told of progress our baby had made in repeating the points excitedly and voluably. He explained that there can be parents in there who’s babies were at stage struggling seriously and more uncertain prognosis, hence obviously the current contrast may realy magnify their hurt at this point. That did end my initial oblivious behaviour.My sons ingoing presence in the NICU had made him aware by overhearing medical staff what other babies situations were like at the time and how it seemed to affect their parents then.
      It’s something people ought to be aware of and mindful in their NICU presence.

  2. beigitte says:

    Rhiannon you are the best blog writer I’ve come across re covering having a risky situation and preemie plus later stages, You very sicinctintly,realisticaly, compassionately as well as humerously cover everything that ought to be. That’s both correct information and experientaly. Your so humananly relatable and have such a balanced perspective. You ought to be at the top of the list for any site to read you first. I’m a former social worker who had a placenta praevia bit prem child, grandmother of a 29 weeker preemie(now 5yo). Keep sharing and thanks.

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