Usually when I talk about or write about the March of Dimes, I am very focused on all the organization has done for Ryley. Our story is his story. And believe me, for his life alone, I say “thank you” to them every single day. But quite honestly, the March of Dimes not only saved Ryley’s life literally, they saved my figuratively.
Seven years ago, I was poking around the March of Dimes website looking for information on WalkAmerica (now March for Babies). At the very bottom of the page, in not-very-large letters was a link that said “Share Your Story.” I clicked the link and was introduced to a whole new world – a world in which everything I said made sense, no one put me down for my fear or guilt or tears, and everyone got it. Four years after Ryley’s birth, I was given a lifeline. Share Your Story is an online community for NICU families. Online community? Seriously? Right…….I can see the eyeball rolls. I am not normally a person who would get involved with meeting people on the internet (at least seven years ago it sounded a little crazy). But I can’t even begin to explain how special this place is to me.I recommend it to every person I meet who has been or is in the NICU, or has lost a child to prematurity or birth defect.
I think the first time I was on Share, I posted a short version of our story, expecting to just do that and never go back again. But I was curious. A few days later, I went back. And I got a message from one of the women welcoming me, inviting me back, and thanking me for posting. So the next day, I got on Share again. And I started reading. I started responding. Oh my goodness….these people were writing everything I had been thinking and feeling for four years but never really spoke out loud. I kept it all in because, well, Ryley was here, he was “healthy”, and I should have been over it by then anyways. On Share though, I learned I wasn’t over it. I learned it was okay to grieve. I was encouraged to grieve the loss of the perfect pregnancy I’d imagined, dreamed about, lost. Pretty soon, we started having Sunday evening online “chats”. These women were becoming my friends. I learned their stories, learned about their children. They shared, I shared. We laughed, we cried. Seven or eight months later, I was given the amazing opportunity to meet four of these women in person at a conference here in San Diego. I was nervous as heck – would the online relationships transfer to “real” life? We hit the ground running. The conversations picked up where they’d left off on the computer. Karri – my roommate that year – became one of my very best friends. Michele – the first “mom of Share”, with her southern accent and comforting words, is still one wise person I reach out to often. I turn to Julie when I need a really good story. When I find a good new crock pot recipe, I send it to Lauren. When Ethan goes sideways, or I want some super cute puppy pictures, I call Katie. When I’m feeling Southern-bellie-ish, I talk to Tracy. Any time I hear the word “Bingo!” I think of Angi. And the list goes on and on and on.
I’ve been blessed to go to the now-annual Share Union every year but one. I am blown away each and every time. These people in my life are there because we’ve all “been there.” We are all from different backgrounds, different places. Our lives all went sideways at some point when pregnancy and birth didn’t go the way we’d planned or dreamed of. I have friends across the country. I get texts with pictures of beautiful sunsets. I get virtual hugs when everything seems so dark. I have understanding. I have a place to now give back and help those moms (and dads) just starting this journey. And when Ethan was diagnosed on the spectrum, I had numerous resources and so much support. This community has gone well beyond allowing me to share Ryley’s story. I count so many people as friends that I would never have met but for this place provided by the March of Dimes. Each one of those friends is another reason I say thank you each and every day, and another reason why we continue to support the March of Dimes.