November 17th is Worldwide Prematurity Awareness Day. One in every eight babies is born prematurely. My Nora was 1 in 8.
November 17th, 2016 I celebrate Eleanor Francis Huffman, my survivor.
For 4 years now I have told our battle story countless times. If you know me or my family, you are aware we are preemie powerful. I want today to be as special and as important as any other time I have talked about my preemie parenting journey with Nora as the first time I spilled my soul. Our battle continues, with scars to be our reminders.
Often, I have found myself in the mirror obsessing over how different l look with my c-section scar, the imperfection that lays across the middle of my body, the way my shape has settled over 4 years. Sometimes it's the only thing I see... it's definently all I feel. Scar tissue has become a constant and painful needle thread through my body. Sometimes it overpowers what I know to be true and what the rest of the world compares perfection to be. It's often leaving me feeling short-handed. This is so unfair to Nora to see from me.
My husband hears the inner-most feelings I have about my postpartum preemie-mom body and he stops me... "You know what my favorite part about your scar is? Our 4 year old daughter"....aaand just like that I am pulled back in. It's a fact, it's my favorite part too.
I am always amazed at his awareness of what I often feel "alone" in my fight through preemie parenting. Because I guess, I carried her, I was on the one on bed rest, and it was my body that felt every scary second to the surprise early and bruised birth.
I have so easily left my completely supportive and responsive husband creditless to my experience as a preemie parent. This was his battle too, just as it was for Nora and myself. His scars are seen when I look in his eyes and see how he has given himself completely. He has carried us for the past 4 years.
Zack was the one holding my hand while speeding to the hospital as I was quickly diminishing, nearly hopeless to her beating heart. "She's still here, She's still here, don't give up...we are almost there".
I can remember hearing him on the phone with his dad after telling him I had gone into labor and we were at the hospital. His dad had said "I am so sorry...", because my father-in-law was fearing the same news our family got 3 weeks earlier at the still birth of his grandson (our Godson), that our family lost... another. Zack said, "...don't be sorry, she has a heartbeat!" That is what hope sounds like in real life.
While my husband was battling the impossible task of become a new father to his third child born 3 months early, his sister, Annie (my sister-in-law) and her husband Mike were somehow living through the seemingly impossible odds of just losing their first son three weeks earlier. They became our band of support. When I say band of support, I mean an unbreakable unity that was born over two babies, all in the beginning of two similar but completely different griefs.
Annie, arrived first that unbearable morning at the hospital. Hopeless yet hopeful and scared. She just lost her son and it was the early hours of the day of her son's funeral. And there she was, in a NICU, alone, grieving her sons loss, waiting on an ambulance to bring her hopefully breathing niece.
No longer than Annie arrived, Zack and their dad met together in the hospital that Nora soon arrived at. Nora did arrive, Nora pulled through her golden hour.
As soon as I woke up from my c-section, I signed myself out and headed to the hospital. For hours I sat next to a clear box lighting the most precious gift of hope I had ever witnessed thanking her angel for all this strength. My husband was with us until it was finally time to go to a funeral. I couldn't leave Nora, I just couldn't. Zack didn't feel he could leave Nora, but for his nephew Carpenter's funeral, he knew he couldn't miss saying goodbye. So he went and I stayed.
Our family made sacrifice after sacrifice to survive 2012.
Annie and Mike babysat days at a time in exchange for a babysitter during their hour long meetings at their new Support group with Heartstrings, a community for parents who have lost a baby to miscarriage or stillbirth, even children at older ages. It was how we lived for 77 days...one day at a time/ one hour to the next. After the first 77 days in the NICU, we took the next step home...still day to day, often being okay that just breathing was a win for the day.
Nora and I both have scars that a heartbeat of moments left us imperfectly connected. This battled warrior of a little girl has spread hope to our family. Without so much support from so much of our families, I am not sure how we would have made it through the darkest hours, the longest days and the mountains of obstacles Nora has had to overcome. It has brought us closer. It has spread to strangers who have become fiends. Even thought lost friends from over a decade came out to support us. Her strength has given so much hope.
I remember sitting in the NICU both of us stitched up and bruised, day after day fantasizing over the future. I would try to imagine our life 2 years, 3 years, 4 years and more down the road. Back then I was praying for a miracle, for healing. Here we sit 4 years later. I can tell you the remnants of the war are still within us, the battle scars here to remind us of the fight.
Today, Nora is sitting next to me on the couch trying to decide which shade of purple to wear today. "ALL the purple" I say to her, she looks at me wide eyed as we get dressed wearing purple from head to toe. This is a win for today! We are preemie powerful. #preemiepowerful #preemiepower
I hope this yearly letter to the world helps bring at least one more family awareness, the least it will do is offer my daughter a reminder of her true inner strength, her parents passion for her success and a documented account of what this annual day of awareness means to this family.
If you think of it, wear a purple ribbon today for all the babies born early. They fought like hell to get here. Today is a "Thank You for Fighting" to all the little babies battling for life.
This preemies mom