Today is World Prematurity Day.
It’s just over 3 and a half years since we started our journey with prematurity and damn it I wish I knew back then just how much it would become a part of me. Of us. I don’t know why I thought it would be different. Maybe I thought it would be over once we left the hospital. Or once we got that tube out. Or once we managed to survive all of the firsts. Maybe I thought that the effects would decrease over time, that the memories would fade and be forgotten in all of the mayhem of life, family, work and fun. Maybe I just thought that time would heal, because that’s what everyone says. But I really wish I knew then that none of that is true. That it actually doesn’t matter how long it’s been, it’s still raw and terrifying and painful and you just have no idea when it will pop up and smack you in the face.
Prematurity – it isn’t just a word anymore. It’s me. It’s us. It runs in our veins now. It’s in the air that we breathe in our home, it’s in my cups of tea and it’s waiting to nestle close to me in bed each night.
Oliver was fed with a nasogastric tube up until he was 19 months old; the effect of Prematurity was taped to his face everyday. We have roughly 25,436 flannels in our house gathered from multiple family members over time to help us manage the years of vomit. We have syringes and medications in boxes. Casts of his brother’s feet are on our wall, and next to our bed.
Prematurity ripped our family apart and has also somehow become the glue that stuck it back together.
Oliver won’t be a ‘preemie’ forever, he has become a kid, and he will become a teenager and an adult. But his brother won’t. Our walls are covered in photos that are beautifully full of our miracle boy, but they are also glaringly empty of his partner in crime. So prematurity will travel with our family forever, because it is synonymous with parenthood for us. It became our journey and we will travel this road forever. We missed out on so much, but this is what we have.
But some days I really wish I knew how heavy that would feel. And I wish I knew that some days it would feel like a gift, a unique special journey that was just for us, and some days it would feel like a giant wall, cutting us off from everyone else while we try desperately to claw our way back through.
Written by Rebecca Clews.
Preemie Parent to twins
One here on Earth, One in Heaven.
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