Eleven years ago, I knew nothing about Prematurity Awareness Day. Quite honestly, it hadn’t been instituted yet. I was just learning about prematurity. Ryley was about six weeks into his NICU stay. We were out of the critical stage but still in a world of the completely unknown and very scary. We knew of the March of Dimes, but we had no idea how the organization had helped save our precious baby.
Awareness by definition: the state or condition of being aware; having knowledge; consciousness. Yes, eleven years ago, we were becoming very aware of prematurity. There’s not a day that goes by since the day of Ryley’s birth I am not aware, do not have knowledge or consciousness of prematurity and its effects. For whatever reason – be it miracle, luck, or the fierce determination of a tiny boy, his doctor, his nurses, his pediatrician, home nurse and family – we are here, eleven years later. And yes, we have awareness, not only of prematurity but of all the March of Dimes has done for our son as well as millions of other babies like him. We are also aware that too many of those families do not have the happy ending we’ve had.
As sad, terrifying, and overwhelming as the NICU was, coming home with our fragile infant was almost worse. He was out, but now what? It was the beginning of Winter and we were pretty much under house arrest in order to keep him healthy. We were first-time parents, and we were alone. There weren’t any other parents around us we could talk to, who knew what we were going through much less understood and commiserate. We had no resources for support once we left the NICU. Looking back, those first five or six months at home were the most isolating of my life. I didn’t know what to do with this little boy….his beginning was so out of the norm. I was afraid of my own child. And I felt I had no one to turn to. It was a long, lonely road then. We survived, but not without struggle.
I could throw all kinds of stats out there now. They’re huge. And every time I hear of new parents with a baby born too soon and too small, I just want to reach out, hug them, and tell them they’re not alone. When I hear of parents who have finally, often after months and months, taken their baby home, the need to reach out is even greater. Preemies are not just small babies who need to grow. And coming home from the NICU is not the end of the story – it’s just a new path on the road of prematurity.
Solving the problem starts with awareness there is a problem. Honestly, I feel it’s my “job” to educate and spread awareness. It helps me make sense of what happened with Ryley, otherwise what was the point? So here I am, making you aware, giving you knowledge, spreading a consciousness that prematurity is here, it is a problem. Next up, solve the problem.