Eight years ago, I lit a tiny little spark. I started a Yahoo Group trying to find moms like me with kids like Liam – kids missing the right side of their hearts. I trolled Baby Center and other sites and found three women. I invited them to my Yahoo Group and on Aug. 15, 2003, ten days before Liam’s second open heart surgery, Hypoplastic Right Hearts was born.
Today As of 2013, there are more than 800 1000 members and thousands more who haven’t gone online to find us. I’ve met hundreds and hundreds of heart families in person and at least a thousand online over the years. My journey as an advocate inspired me to start the Colorado Chapter of the Children’s Heart Foundation and has taken me to Houston, Chicago, and Minnesota, and I’m just getting started. And then, there’s the book that I would have never had the confidence or the message to do right without the cause behind it.
My life as a mom has run parallel to my life as an advocate. While I wish my son, and all children who fight for their lives against any disease including CHD had a cure, had the same opportunities without the risk and pain that my daughter and 95/100 babies born healthy have – they don’t. Wishing doesn’t make it so.
Taking action and setting an example is our recourse. Rolling over and hiding and was never an option. I am not a victim of circumstance, and neither is Liam. We are agents of change. That is the model I wish to be for him and his sister, that is the silver lining I take from it all.
I celebrate the day that I decided not to give into my fear but to harness it. So to all the advocates out there, for any disease, issue, or cause whose mission is to improve life for those less fortunate, here’s to you! It’s worth it, every little step of the way. Celebrate your own advocacy and the friendships and accomplishments it’s given you.
Good luck on your journeys!