I sometimes over-commit myself (ok, I always over-commit) myself to projects. Then I find myself, knee-deep in a garage sale or some such endeavor wondering, “Why do I bother?” This year I’ve done three awareness events, two education events, and one research activity and I’m tired. I’m sure people are tired of me too, always beating the Congenital Heart Disease drum.
I’m tired. I’m tired of asking you for money. I’m tired of the silent no. I’m tired of beating my head against a disease that is so much bigger than I am, but I can’t stop because as much as the worry recedes when things are going well, the truth is that there are no adults just like Liam. Yes, there are adults with half hearts, but the tissues sewn into Liam’s arteries didn’t exist back then. No one knows how long these things that keep my son alive will last.
The other night, I asked myself again. . . why did I volunteer to lead the first ever Congenital Heart Walk in CO? The answer called me on the phone. A mother of two-year-old Sebastian, another boy with half a heart, heard about me from a friend (I have a “reputation.”) I mostly listened and let her preach to the choir about all her fears for her son’s life and the odds against him. I’ve been there, I’ve lived that, I know what it means when people listen.
Then she said something about life expectancy, and I had to tell her that with Liam’s messed up arteries, the oldest child I knew like him died last year. Michael was nine years old, he went to fourth grade one day in April and he never came home. Liam is seven and a half. Ding, ding, ding! I remember why I do this. We might have another thirty years, we might not - and the best doctors on the planet refuse to tell us for sure; no one is taking that bet. Research is mandatory; ignorance is deadly.
As much as I would like to pretend I don’t have a karmic debt hanging over my head, or sleeping across the hall - I do. So, we’re walking again on Saturday. We’re walking for research, we’re walking for hope, we’re walking because if we stand still I might lose the chance to sit here and watch Liam do his math homework, and that’s just unacceptable. We’ve established that I’m tired of CHD, you’re tired of CHD and maybe a bit tired of me, but CHD isn’t tired of killing children, so with a million miles to go, I’ll ask again, will you help us on our walk?
And that's my Hail Mary!