The Weight of Heart Month

Three days into heart month and I feel ready to tap out. Sound the bell in the wrestling ring to say I need to sit. I feel heavy. I feel scared. I feel lost in numbers and stories and a plea for more attention to be put here.

This is the first time “heart month” really has a meaning to me. Sure, I’ve heard of it and have participated in activities in the past, but it never stung in my core as it does now.

It was the end of May when I learned about her diagnosis. It was then that words fell on my ears like foreign phrases. It was then I learned phrases like “congenital heart defect” and “tetralogy of Fallot.” It was then I started picturing a tiny infant in an operating room with her chest opened. My privilege up until that day was that I didn’t really need to know much about how heart disease affects 40,000 babies a year in the U.S. But then it became my baby.

With all I’ve learned on this journey thus far, I feel a fire to make sure those around me know too. I don’t expect them to dive in as deep as I have, but I want to give them opportunities to be more aware of what CHDs are and the effect they have on families. I want to bring light to this issue as I feel my anger, frustration, and sadness knowing that the leading birth defect is still so underfunded and there are so many babies to be saved.

I want everyone to know, but raising awareness means talking about it. Talking about it means researching more. Researching more means flooding my mind with the statistics, facts, stories, and faces. Flooding my mind means I can’t go through the day without thinking about it — without thinking about how it is true for her — without thinking about what is to come and the fear that meets me often. It means telling our story and highlighting our pain over and over and over again.

There are days I don’t think about it. These days I get to focus on the laughter, the way she smiles at her brother, getting her bottles ready at the right time and changing diapers. But the days when I must sit in the awareness, those days bring heavier thoughts and pictures that I can’t shake. I often think about my child dying. I often see the bins of clothes in various sizes and wonder if she’ll ever have the chance to wear them. I often plead with any Gods, forces, scientists, and doctors to make sure everything goes well and that she outlives me. I often look her in the eyes and demand she be stronger than I’ll ever know how to be. I often kiss every inch of her and feel the contradiction of fear and hope.

Bringing awareness requires us to sit in the uncomfortable places. Sitting in those places is an emotional labor. When I set out to be apart of Heart Awareness Month, I didn’t realize how quickly and how deeply it would pull my energy, my mind, and my own tender heart. I didn’t realize how the stories and pictures and statistics would make me feel anxious. I didn’t realize that trying to spread the word would also spread me thin.

Raising awareness isn’t just for those of us sitting in the muddy waters. It isn’t just for the personal stories to be posted with pictures and words of experience. It isn’t just a count of which babies made it through and which didn’t. It isn’t just for the mommas and the daddies who already feel the sting regularly. It’s not ours to carry alone. This is where we find our truest friends. The ones who will pull the load with us. The ones who will speak up and speak out. The ones who will take the time to learn, to listen, to try their best to sit in this space with us and to be the voice when ours is weary. In this season, spread thin and anxious, it is these friends that I cling to. These friends I call back. These friends I trust my heart to.