Once a preemie, always a preemie?

Today is World Prematurity Day, our third since the girls were born ten weeks too soon.

I’ve been reflecting a lot on prematurity and its place in our story. I recently spoke on a Parent Panel to share our stories of prematurity and journeys home from the NICU. I caught the tail-end of a former preemie’s talk; that preemies are resilient. And, of course I couldn’t agree more.

Though, as I found myself telling our story, talking to our 80 Days, it was hard to speak some of those words, not because of the pain or the memories, more because of how it doesn’t feel like our truth as much anymore. You would never know looking at my girls now, 36 pounds and three feet tall that they were once so tiny, so terrifyingly small. You wouldn’t see the appointments, the surgeries, the early mornings and late nights. But, you would see the equipment, the AFOs, the difference in these identical girls.

Of course, Ella’s cerebral palsy is directly related to her prematurity, and a more resilient girl I doubt I’ll ever meet. But, our story has evolved.

I often wonder who wears the scars from prematurity the most; those tiny babies bear the physical scars, though they get smaller as the girls grow, but I’d say the parents truly carry those scars. Sometimes almost invisible, hidden behind the busy days, the normal life of families, sometimes a burning red, an overwhelming feeling.

Last night, I met with Ella’s teachers. One of her teachers said how hard it must be to see children with CP who are doing more than Ella can, who are able to successfully walk on their own. At that moment, my scar was burning and I felt as if she knew my parenting shame, the thoughts that make me feel like a terrible human; that yes, it kills me that Ella can’t walk, that she can’t have the surgeries, that my strong, sweet, amazing Ella may never know what it’s like to walk on her own. That she will find herself in a wheelchair soon. How unfair it seems that others can, but my Ella can’t.

My girls, those premature babies, born too soon, surviving so much. Yes, preemies are resilient, but god damn preemie parents are resilient too, after all, where else would they get it from?

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One thought on “Once a preemie, always a preemie?

  1. Thank you for speaking on a parent panel. 🙂 They are so important for the information and perspectives they share (and for how moving the personal stories are).

    Lucy and our family have been wildly fortunate, and even so, my preemie parent scar still hurts, sometimes. And I don’t really know what to do about that.

    As always, we are rooting for Amazing Ella. Thinking about the unfairness, of the things she wants to do but currently can’t; this definitely doesn’t make you a terrible human being. YOUR perseverance is as amazing as hers. I wish there were fewer things to poke at your scar.

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