Today was the annual heart walk. We don’t talk about Lydia’s back-to-back heart surgeries much at home—I don’t like to remind myself, let alone the kids. But on heart walk days, we remember. We remember so that we can appreciate our little living miracle & keep some perspective on this life journey. It’s funny to me how shockingly little the boys remember & the questions they ask me: “When did she have surgery? What was it like?” So I tell them; every year a little bit more. This year I told them about her tiny heart, the size of a strawberry, & its three holes that needed to be fixed. I told them about how I remember signing the papers to give permission for her surgery & reading a little paragraph at the end explaining that in 3-5% of cases, something could go wrong during the surgery resulting in complications. I remember thinking “3-5% is so small! That definitely won’t be us,” but still feeling the weight—the astronomical weight—of handing my child’s life over to the surgeon, & knowing that I had to; it was her best chance. Her only chance.
Then the surgeon came back after hours of intricate, life-saving work on that teeny little heart. The holes were closed! 🙏🏻 But there WERE complications. That 3-5%? That was us.
And I have never looked at numbers the same again. I never will.
Odds of having a baby with DS in the US: 1:700
Odds of a baby w/ DS having a congenital heart defect: 50%
Odds of any congenital heart defect being a critical heart defect requiring surgery before age 1: 25%
Odds of pediatric heart surgery complications: 3-5%
Percentage of pediatric pacemaker users out of total pacemaker population: 1%
✨Put all those criteria together, and we have one heck of a rare girl. 🥰✨
I especially wanted to do the walk this year because Lydia will be having her pacemaker replaced for the first time in a couple of months, so it all feels very close right now. As we watched her running along the path with her brothers, this child who came to us so weak she couldn’t cry or eat, now so full of life and joy, both Dan & I got choked up. This beautiful, surprising, crazy hard life where each moment is so precious.
