I may have mentioned Monday is World Prematurity Day, or that November is Prematurity Awareness Month. As I’ve been sitting here reading blogs taking me back to Big Man’s early days, watching the video of the dad singing to his 24-week son who later passed away, and have thought and thought about the overwhelming emotions from Sunday’s race in Berkeley, I found the irony in bringing awareness to premature birth. For while I would have you understand what it is to be the parent of a preemie, to live through the NICU, to watch and wait as your child grows to see what the long-term outcomes will be…while I would have you understand the urgency of the need for help so someday no other family will live what we’ve lived, I would that you would never, ever know this journey firsthand. And therein lies the irony.
On Sunday, Spouse and I will attend a March of Dimes fundraising event, the Signature Chefs Auction. We will mingle with the guests, and tell our family’s story. We hope it will help raise lots of money towards research to help bring babies into this world healthy. I’ve spoken to groups numerous times before, shared our story more times than I can count. Typically I go into it with the goal of making one person cry. If I can make someone cry, I know I’ve touched them. They won’t forget us, won’t forget what we stand for, and hopefully won’t forget to give to this organization. But in the back of my mind, I always pray they don’t know what it’s really like to stare at your child through the walls of a plastic box for months on end, to know what it is to see your child stop breathing and his heart rate plummet, to watch your child struggle to do the things you know his body and brain are just not ready to do, to know in your heart you’ve somehow failed him when your body couldn’t do what it was supposed to do.
Years ago, in the online community for NICU parents, many of us wrote our children’s stories in the form of an Imagine poem. Here is mine: Imagine It is a powerful thing to ask someone to place himself in your shoes, to imagine what it was like. But imagining and living are two different things. And while I may ask you to imagine what our journey has been like, I will pray you never have to do more than that imagining.
The irony of raising awareness is just this: wanting people to understand what it is you are working on raising awareness of, but hoping they never have firsthand knowledge.