By Amanda Farr Knickerbocker, mom to handsome Caleb, 4 and beautiful Charlotte, once 19 ounces, now 2 years old.
There’s something about having a day to celebrate or honor your cause that feels right. It feels right to honor those who have been diagnosed with cancer; to support those who have lost loved ones, or buried children. It seems proper to celebrate the fighters, the ones who have overcome so much.
Charlotte, 10 days old
So when the idea of a Parents of Preemies Day was initially shared with me, I was a little taken aback. Who me? You want to honor us?
Our daughter, Charlotte Amalie, was born 17 weeks early, weighing 19 ounces and measuring 11 inches. She spent 7 months in the NICU, has endured 5 surgeries, countless therapy sessions and even more countless doctor appointments. She turned two last month and took her first steps. She bosses around her entire family and we’re all wrapped neatly around her pinky finger. Her older brother adores her, prays for her, and even picks out her clothes.
So celebrate me? I think you are mistaken. These children, surely, are the ones who must be celebrated. They are the ones who endure the needle sticks, the intubations, the horrific eye exams in the NICU. They are the ones who learn everything before their time: to regulate their body temperature, to eat, to breathe, to pee.
And then I saw the pictures, pouring in on the facebook page for the event.
Pictures of mothers holding their tiny miracles. Pictures of fathers, kangaroo caring with their sons. Pictures from the day these children were born, and pictures of them now. Pictures of survivors — men and women who walked into the NICU day in and day out, taking a deep breath, hiding their fears, and supporting their babies.
Parents of preemies spend hours, simply sitting by an isolette. We weren’t allowed to hold Charlotte for a month after she was born. My hours in the NICU involved staring at monitors and pumping breast milk. I couldn’t touch my baby, or sing her to sleep, or protect her from the cold, harsh lighting of the NICU. I couldn’t swaddle her and whisper in her ears.
But I went. Every day. I sat by that isolette, willing her to know that I was there. Willing her to feel my love, my presence, my faith in her.
Parents of Preemies hear horrific statistics. We were told that 90% of children born at Charlotte’s gestation who live long enough to leave the NICU do so with a major disability. We were given charts and studies, test results and tissues. We were told to fight, and we promised her we wouldn’t make her suffer. Our neonatologists and NICU nurses loved her, and still do. They fought for her, they fought for us. But it was an horrific battle.
Parents of Preemies face wounds many other special needs parents don’t. It’s not a competition, of course. We are ignorant of many of the challenges other special needs children face on a daily basis. But our battle is fought, in the beginning at least, on two fronts. My husband watched me rolled into the OR, and he experienced terror, not just for his child, but for his wife as well. He watched me as I went into organ failure, as I had a PICC line placed, as I hung the bags of IV fluids each night. He watched the calendar as we finally made it to that magical date of “viability.” He watched our daughter, tiny enough for my wedding band to slide up her arm, experience heart failure, aspiration, and sepsis. The horrors of prematurity are not limited to the child. Any mother of a premature child will share the irrational guilt they live with each day. Guilt for failing our children. Guilt for not being strong enough. Guilt for not being able to do the one thing a mother should do– carry a baby. It’s unnecessary guilt, and intellectually we know it’s misplaced. But we carry it in our hearts nevertheless.
Charlotte, 2 years old
These pictures, they tell a story that words cannot. A story of triumph and disability, of life and of death.
My daughter sleeps with a ventilator, eats with a feeding tube, and heals our once broken hearts with her smile.
And I love her for it.
Everyone in that story deserves to be celebrated.
Amanda Farr Knickerbocker is married to Peter Knickerbocker, a pediatrician in training, and mother to her two children, Caleb (4) and Charlotte (2). She blogs at understandingprematurity.com about day to day life with a premature child, and the emotions parents of preemies often face. She likes to call blogging “cheaper than therapy.” She and her family live in San Diego, where she stays at home with her children. In her “free” time, she enjoys running, stalking people on Facebook, and being confused by Twitter.
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