Unexpected - World Prematurity Day 2013

I wasn't going to write today.  I had a kind of defeatist attitude about the whole thing.  My train of thought went something like this, "The only ones who will read what I write, already know.  Are aware.  As much as I love this community joined together by prematurity, they aren't who we NEED to reach.  We need to reach outside our community, outside our WORLD."  And then, unexpectedly, it hit me....what I want from a day like today, World Prematurity Day (11.17.13). 

Absolutely unexpected...Jack at birth (28 weeks).

Awareness

 

          Society sets expectant mothers up for a joyful, blessed pregnancy (with some discomfort at times) and an even more powerful (and still possibly painful) moment at birth when you finally meet (and hold) your little one.  Sure, there are short paragraphs in pregnancy books about things that could go wrong…but I’ve noticed that most end with “if you have good medical care” this won’t happen.  But what if you do everything “right” and have good, even great, medical care and your expectations are STILL turned upside down by prematurity.  I think some of the biggest trauma, for me, has been so much of the unexpected that has happened during this journey (from Jack’s early arrival, his NICU stay and even now).  I never expected  to have my baby turn blue and stop breathing while holding him.  I never expected to hold his arms down and put a tube into his nose so I could feed him.  I never expected my three year old to need three therapists, a nutritionist, a gasteroenterologist, a pulmonologist, and daily breathing treatments.  What’s even worse, is that the medical community often seems surprised by this as well.  The perception that prematurity ends once leaving the NICU is FALSE.  Yes, false.   When your child’s own pediatrician isn’t aware and doesn’t acknowledge the lasting impact…well, that’s another expectation overturned.  So, yes, it’s the unexpected that makes prematurity so darn difficult.  Not only has society set families up for a perfect pregnancy and birth, but childhood is also supposed to look that way too.  As the mom of a premature child, I often feel like I’m in a whole different world at times.  But, by continuing to acknowledge WORLD Prematurity Day…maybe someday my world won’t be so different, so unexpected.  Maybe some day, if prematurity is still upending expectations, a mom, like me, won’t be so traumatized or feel so isolated because of the unexpected.  As much as I love the prematurity “networks," friends, and FB groups that I have found, I would have loved it that much more if awareness were higher among the general public (and medical community).  So that I and other parents didn’t have to seek out a special place, a private place to talk about our experience, our fears, our worries.  I will continue to promote WORLD Prematurity Day in hopes that some day, sharing our story will be accepted.  Will not make others uncomfortable.  Will not scare, but inform other pregnant women.  Will not cause others to say, “but at least…”

To be fair, I never expected to be able to have a family photo like this, 3 years after our biggest expectations were overturned.  (Oct 2013)

Acknowledgement

 

          I have a voicemail that I save; I have been saving it since August 13, 2010, just three day into Jack's little life.  It's not the usual congratulatory message one receives when giving birth, but it's being saved anyway.  Don't get me wrong, many people offered up congratulations in a not so joyous time.  And I'm glad.  If they hadn't, I would have been hurt.  But this voicemail, from a friend, my best friend, was exactly what I needed to hear then and what I still need to hear, even 3 years later.  My friend called to check on me, to see how I was feeling and gave me the very thing I needed to hear.  Acknowledgement.  That this was not what we had planned and things did not go as they should have.  That acknowledgement still brings tears to my eyes now, as I'm writing, as it did the first day I've heard it.  Since that day, I've been wrestling with the lack of acknowledgement that is given to the very real, and very unpleasant, experiences that prematurity can dole out to any given family.  That friend, she said the most meaningful thing to me throughout this entire journey.  I can’t remember hearing it from anyone else, but it is what I hope other parents will hear often as long as we continue to promote days like this.  World Prematurity Day.  

She acknowledged our unexpected.

          I know I could have written about Jack today and how awesome he is.  Given other parents hope about what life looks like 3 years later.  I wanted to take a different approach.  Because, the more I thought about it, the more I realized how much prematurity has changed me.  Yes, it may impact his entire life, but he will always be my Jack.  I would never allow prematurity to define him.  But prematurity, it has changed me, changed my expectations.  As an adult, his mother, I can choose how prematurity affects me, changes me.  Jack, he doesn't know a thing about it, really.  In fact, if I had asked Jack if he wanted me to write about him on World Prematurity Day.  He'd probably just say his new favorite phrase, "No thanks, I'm good!"  It wasn't what I expected, but prematurity has changed me.  For good.

"No thanks.  I'm good!"