Today is February First. If you’re reading this blog, then you most likely know that February is “Heart Month.” If you don’t know it’s Heart Month, you’re probably more concerned with Valentine’s cards for school or a gift for your sweetheart.
So, it’s Heart Month again, and I watch my Facebook feed explode with facts and statistics about Congenital Heart Defects, and I am weary. It’s not the sheer volume of people I know who are directly impacted by CHD, but the fact that I feel compelled to say something because it’s “Heart Month,” and I’m the heart mom. I know I’m not the only one, but it’s kind of what I’m known for, even more than being a writer.
I can’t complain because I picked up that coronet, and I will support my book and my work and continue my advocacy. My focus will remain on research and child health advocacy because those things require extraordinary persistence. If nothing else, I am persistent.
CHD will always be personal for me because of where we’ve been, but it’s about to get a whole lot less personal where Liam is concerned. I will always be a heart mom, and the territory of my own heart is mine to share, but boundaries are being formed in the second decade of my child’s life.
While I am trying to write a different book, literally and figuratively in my life, a landslide of CHD facts falls over me like rain. Facts I live everyday, facts that I pushed through like a bulldozer when they were new, facts that haunt me now when I look backward. So, I’m not the big CHD Awareness cheerleader that I’ve been for so long, and I’m passing my pom-poms to other heart moms because I have nothing to else to share about CHD that isn’t in my book or already written on this blog.
The world is so different now than it was eleven years ago. Then, there was no Facebook and very little detailed information on the Internet. I helped change the amount of information available. I helped make more people aware. I’ve done well, but that is old news.
And, it’s because I don’t have anything new to tell you about CHD awareness, that you don’t already know, I asked Liam what he would tell you if he wrote this blog post. His response is short and bittersweet, but thoughtful. What he has to say sums up how and why I’m circling my maternal wagons and moving on to other subject matter. Liam’s words inform on what is new with CHD in our home. This is what Liam wants you to know about CHD:
“It’s upsetting because sometimes you get a whole lot of attention and you don’t actually want it.”
So, there you go. Worry not, the irony of this statement in light of some of my most popular blog posts is not lost on me at all. Liam’s timing is sublime. With egg on my face, I defer to my child who never asked for his heart defects or my determination, yet both are his birthrights. While the CHD community struggles to be seen, my child wants to be invisible.
If you want to help spread CHD awareness this month, I applaud you and encourage you to start evangelizing to people who won’t read this blog. Those people need to know that there are two million (and growing) American’s fighting CHD and that 40,000 babies are born with it each year. People who haven’ had one of those babies in their lives yet need to know that at least 8,000 Americans die every year from CHD. The unaffected need to know, but they don’t need to hear it from me. Anyone can spread awareness. The rest of us, the Heartland, are heartily aware.
This is my CHD Awareness post, my only one. To the incredible friends who’ve supported us over these eleven years, I say, “Thank you, from the bottom of my own heart.” But when we go to the cardiologist later this month, Liam will lead the discussion, and the door will be closed.