As I mentioned in a recent post (What I Need Now) a good half of my Facebook Friends are CHD survivors, parents, etc. and as predicted my Facebook feed is lit up with red awareness reminders. It’s a little overwhelming to see the same thing over and over and over again. I did repost this awesome story of a Heart Warrior’s role in the Super Bowl, but so did almost everyone in the Heartland.
I wish the people who know nothing about CHD knew, when they see this adorable boy Hunter, that he’s one in one hundred. He IS special and brave, but he’s not uncommon. I wish that, in addition to tugging at heart strings, stories like this planted little seeds of information in peoples’ brains about CHD, it’s prevalence, and how they can help. They can help.
So, while we’re reposting and reposting and turning our facebook feeds red with “awareness,” we are definitely all preaching to the choir, which is why (Hunter aside) I’ve not really posted much about CHD awareness on Facebook these first three days of Heart Month. It’s almost an echo chamber of the same information over and over again. I’ve decided instead to break out of the Facebook box and branch out.
What I have done so far is met with two legislators yesterday to talk about how important pulse ox screening is and while one was our partner last year and is all in. I converted the newly elected second. We’re working on a second resolution to keep pressure on the state to start screening when we have the right life-saving high-altitude techniques.
I wrote a proclamation that our mayor will read before the City Council meeting on Tuesday. I’m getting evangelical on CHD’s butt. I am working on a parade float so that people will see Heart Warriors strutting down the busiest street in our town for St. Patrick’s Day. I am working with a local business man to get more stores to sell “hearts” in May (not Heart Month) at their cash registers to support CHD research. I’m trying to get a more non-heart moms to our Craft Your Heart Out event next Saturday.
Within the Heartland I helped a mom in WA and a grandma here in CO by creating a flier and a website so they can educate their own family and friends about CHD this month. They wanted a light to spread awareness, and baby I’m on fire. I wish more non-heart families subscribed to my web site and would read my blogs, because that would help.
Also, I’m doing what I always swore I would and have been trying to do for years. This year at the Capitol, there will be no Liam, no pictures of Liam, nothing about Liam. Because this year, it’s about four other Heart Warriors. This year it’s not about the Adams, it’s about the Heartland and putting more stories forward. Just like Hunter, Liam IS special and brave, but he’s one in 100 and it’s time to share more stories outside of the Heartland in the Capitol, the hallways of the Children’s Hospital, and wherever anyone will take my pamphlets.
Last week as a prelude to heart month, I stood in a hallway at a swimming pool telling strangers about CHD to shocked and amazed faces – they never knew how prevalent it is. I deputized and adorable high school senior to stop people and share the gospel of CHD. My acolyte, Maggie, had no idea how significant CHD was until I ran down figures with her, but now she’s a convert. And she came to be by way of one of the BEST friends a person could want, Kristin, who joined our CHF board just be cause one of her friends had a daughter with a severe heart defect, and now Kristin is part of the heartland. Kristin and Maggie and our state representatives are exactly the people we need. They are the converted who understand JUST how important CHD is without living with it day after day. We need more Maggies and Kristins in our world. Their distance from the reality of CHD every day give credibility to the call for change. It’s not just a bunch of moms, we have friends in the community and in the Capitol.
We’re better than a cult, we just want your money (for research) and your heart in the game, but you can keep your will and your soul. When the whole world is the choir, then awareness is complete and we can spend more time getting the precious research dollars and funding better support channels for all impacted by CHD. In the mean time, for those of you in the choir, keep singing, keep trying, and share your own ideas. Someday, our song will be a break-through success when people like Kristin and Maggie hear it, and the whole world will know we’re 1 in 100 and be singing along. Don’t give up we’re all breaking through the ice, one story at a time.