Those numbers...they are prematurity*. They are two of the diagnosis codes assigned to Jack, at birth and even now. The first, for his extremely low birth weight (under 1000 grams) and for his level of prematurity. The second, for the weeks he lived inside my womb. Just 28 weeks.
It never occurred to me to care about these numbers until yesterday. I knew World Prematurity Day was coming and I was dreading it this year. I'm at a stage where I just wish I could get through a day without thinking of prematurity. A fellow blogger, Becca, wrote about it recently: "This Year’s Prematurity Awareness and Me" at Cheering on Charlie.
"I always think…that I would love to have just one day…just one
day, where prematurity doesn’t enter my mind in some way.
It hasn’t happened yet. 4 years later. I want everyone to know
about it and care about it and help make it go away.
But I also don’t want to think about it anymore.
Endless, vicious cycle."
There ARE days when it is just a passing thought. There are days when it affects all that I do. There are days, like right now, where I'm pretending prematurity doesn't affect Jack and I'm not asking/forcing him to wear his new braces on his little feet. They sit on the counter, adorable, but unused. What would happen if I kept pretending? Would I damage his muscles and tendons so that he couldn’t play soccer in 4th grade because his ankles are still weak? What if I stop doing the OT and PT homework with him? Will he have trouble writing his name? If I pretend that prematurity doesn't exist anymore, what kind of mother am I? If I pretend prematurity doesn’t exist, what kind of Jack would Jack be? The precarious balancing act between juggling prematurity and my awareness of how it might impact Jack…and living a typical life, so that those diagnosis codes are just that, numbers on a billing sheet and nothing more, is a daily struggle that today I’d rather do without.
So today, I begrudgingly write about prematurity, even though I am in denial mode. (Or what I learned yesterday at the Preemies Today conferences is "survivor hinder" mode, when everything is just "fine.") I talk all the time about how prematurity's effects are life-long, but I secretly want to be done with prematurity four years into this journey. I know better. Prematurity did not end when we left the NICU. It didn't end when Jack turned 2. It's not over, just because he is successful in pre-school. And it may ever end. For him. For me. For our family. Although, I am always hopeful that its impact will continue to lessen as the journey continues. But, until there is a day when other families DO NOT have to think about prematurity…DO NOT have to watch their babies struggle to survive…DO NOT have to think about prematurity daily...DO NOT have babies assigned diagnosis codes like 765.24…I will continue to share, make others aware. Especially on days like today.
WORLD PREMATURITY DAY 2014
|For all the awful things that prematurity has brought into our lives, none of that can overshadow the awesomeness that is our JACK RYAN!|