November is National Prematurity Awareness Month, but I am always aware of prematurity.
Every day, when I lift up my four year old son out of bed, and feel his warm love filled arms around my neck, I am reminded. At night, when he makes me lay in his arms, forehead to forehead, as he slips off to sleep, his beautiful lashes flickering across my face, I am reminded. In the evenings after work and school, when we practice sitting to stand and eating hand over hand, working on those fine mother skills, this Mommy, is reminded. My son’s premature birth is something I can never forget. The pictures of him just days old weighing only one pound covered in tiny translucent skin; the videos through his incubator, the hundreds of thousands of dollars in hospital bills from our hospital stay, are all reminders. The intense love I have for my miracle, and his daily challenges, remind me over and over again.
My greatest gift came with my greatest pain. Prematurity has both broken my entire heart and burst it open with immense happiness. It has brought me a river of tears and a mountain of gratitude. At 24 weeks I gave birth to an extremely ill, small and sick son. I did everything right and my body had betrayed me. He spent five months in the NICU and battled retinopathy of prematurity, grade four brain bleeds, necrotizing enterocolitis and various other preemie problems. Still four years later he wears the scars of the leads across his little tummy. He is my survivor.
I never imagined becoming a mother in the midst of such uncertainty, sadness and guilt. Every single preemie parent understands this. Whether our babies turn out perfectly healthy, face developmental delays, or pass away in the hospital, every single preemie parent is always aware.
We are always aware of the reality of premature birth and its impact on families across the world.
We have witnessed miracles in real life form. We have seen doctors and nurses save the smallest of the smallest. We have spent days, weeks, months and some of us years in the Neonatal Intensive Care Unit. We have begged relentlessly for a chance at life, and celebrated our baby’s chance at life, all in the same prayer. We have been angry; we have had some intense conversations with God. We’ve played the blame game. And we have persevered.
National prematurity awareness month is not for us. Granted, it is a time when we can all share our journey; we have the permission to tell the stories of our preemie’s births that everyone may be tired of hearing. However, the power in this month comes from prevention, challenging the misconceptions, and empowering parents who are just beginning their journey.
November 17th, World Prematurity Day, is an opportunity to shine a light on the leading cause of infant death, and the need to continue to study it, talk about it and heal from it. We can only fix what we can face. Just last month, the March of Dimes released a study that found that 2/3 of premature births in high incomes countries, including the United States, have no known cause. The key word is known. This means, that there is a lot more work to do.
My Jharid is four, and because of prematurity he cannot yet walk and talk. He is loved beyond earthly comprehension, prayed for more than the dictionary has words and has a spirit of resilience that does not exist in a single adult I know. I birthed Praying4MyPreemie, an online source of inspiration for preemie families, and have written poems to celebrate miracles across the globe, because it has changed me so much. This work requires the NICU to stay etched in my mind, just as it remains etched in my heart.
I am always aware of prematurity. But this month, I am asking the entire universe to pay attention too. Spread awareness, spread tolerance and send some love to a preemie family or NICU close to home. I promise you, if you do this, they will never forget.
Because honestly, they have never forgotten.
Thank you for your amazing story. I’m going through the same thing with one of my twins. I delivered them at 26 weeks. My baby boy suffered grade IV bleeds as well. I just feel a hole in my heart even though I am great full for these miracle babies.