A month ago tomorrow, the nation’s worst shooting happened in the town where we will have our third annual congenital heart walk next Saturday. We drove past the theater twice yesterday on our way to and from the walk-through activities. But now, the media has already all but forgotten about the shooting and moved on. We will have a moment of silence before we walk at the end of this week, but it seems there is so much silence without thought right now.
Four years ago this week, Liam had his twelfth surgery, right before he started kindergarten. He began his school years on Plavix for his new stent, and the recess duty adults had to watch to make sure he didn’t bonk his head, lest he suffer a stroke from a brain bleed. Nine years ago this Saturday, the day of the walk, we submitted Liam, at age three months, for his second open-heart surgery.
Our family and our state has known our fair share of drama over the years, and just over this summer. Ironically, there is a price of admission to a drama. The press covers drama and we see thousands of dollars in donations. This has been true with the shooting, with the fires, and with Liam’s surgeries. Now, we all rebuild our lives in private with or without the financial support driven by drama.
I sometimes wonder why many of my friends whose children had surgeries around the same time as Liam have faded further away from advocacy and fundraising, while I’ve only ramped up my efforts. Maybe it’s because we’ve been doing the pacemaker dance for so long, that the threat of new drama has never really faded. Regardless, I can’t help but notice that in 2006, when Liam almost died, people donated more than $8,000 to the heart walk we were in that year. The walk where I spoke and gave several interviews. The walk where, unknown to me, only $80 of what we raised went anywhere near to CHD.
Now, that our lives are rather undramatic, we’ve raised $230 for this year’s Congenital Heart Walk. I guess that’s an improvement over the $8000 I raised in 2006 because it all goes to CHD, so I actually raised almost three times more for CHD, ironically. Granted, I’m the walk chair and have done the work organizing a committee and planning the walk, so I’ve not worked as hard at getting donations as I did in past years. Still, it’s interesting how much attention drama brings to a cause, and how entirely not worth the price of admission it is for those of us who live through the drama.
This all makes me wonder, “Is it time for me to move on?” Is it time for me to hand over the reigns to the moms whose lives are consumed by the drama of all these surgeries we’ve already endured as a family? Part of me says, “Yes!!!” Let’s stop working so hard! Let’s stop spending every night and weekend trying to make a difference one scratch at a time. Let’s stop trying so hard for $230, I can just write a check for $230 and be done with it.
But, the louder part of me says, “No!” Even if it’s only $230, the people who gave that money cared. We moved them and it was worth the effort. Also, the walk I planned has brought in almost $11,000 with another $3000 in corporate donations, the $2500 was one I secured. So, even if I’m not full of drama, I’m making a difference. It’s just sprinkling pennies instead of raining dollars. Beggars can’t be choosers.
Regardless, pacemaker now, or pacemaker later, Liam is not done battling for his life. He never will finish fighting unless he loses that fight. And, he’s only one of two million people fighting CHD in the US. I can’t walk away, so I walk the walk. I’ll keep fighting with him, in drama and in dullards, until death do we part. I’m his mom. I’m a heart mom, and while the world will forget how hard Liam and his peers fought to be here, I never will.
We won’t forget the shooting victims, the fire victims, or those we’ve lost to CHD. We won’t forget the lasting heartache that follows drama or the force of will required to move past it. We walk on Saturday. We walk away from the drama of the past, and we walk forward with hope for a future of life and love for the people on this path.
Please walk with us or send us a few hundred penny sprinkles. We can use all the help we can get. Thank you!