As a mother to a child with a heart defect, I spend all of February celebrating this bittersweet and lovely community of heart families. I spread awareness by sharing our journey and highlighting Parker’s story with truncus arteriosus. Last week the Hopeful Hearts Foundation posted a series of memes regarding the pending Facebook posts of heart families all over the world. I flipped through each one with a laugh more vigorous than the last and then it struck me why these were funny; it’s because it implies that we are relentless, over-the-top awareness spreaders.
This realization was followed with slight embarrassment and guilt. I thought, “Am I being over-the-top and completely annoying to everyone on social media for the entire month?” I concluded that the answer might be “yes” for some people and “kind of” for others. Then I became angry. I was angry at myself for even considering myself annoying. I realized I might clog someone’s news feed and I may be the person that is silently “unfollowed”. These thoughts were paired with the grumblings of friends, co-workers, and family members who eye-rolled over my politically charged posts advocating for the needs of the medically complex. This all led me to my new-found strong belief and fresh perspective: I am tired of being sorry for the circumstances of our lives.
My husband would happily tell you I’m the least socially awkward socially anxious person he knows. I could carry on a conversation with a wall, but if I sense the conversation is ending, I will gracefully end the dialogue for fear of bothering the receiver of my discourse. Growing up, my mother made it abundantly clear we should never be in the way or inconvenient to others — mostly importantly, to her. I think this upbringing has led me to writing a Facebook post and deleting it, repeatedly. (@ high school self, where was this social anxiety then?!!) But the truth is, my life isn’t charming, and my social media reflects that reality.
Having your son’s heart stopped isn’t glamorous. Signing “consent to treat” forms over and over again isn’t charming, especially the one that put your child on a bypass machine. Being recognized by the local paramedics isn’t flattering; however, it is comforting. But somehow, I try to share our story with some semblance of hope, despite my sometimes dwindling faith. I could easily post happy-go-lucky photos of my adorable and seemingly healthy little guy, and I do — but that isn’t the full story. Behind his signature red Patagonia vest is a temporary scar that will be replaced by a larger one in the future. He is a medically fragile child all of the time.
I’ve never retreated away from an opportunity to tell our story, and I never will. Because I was once a brand-new mom, no longer able to hold her moments-old baby . . . only to have all the hopes and dreams of the last 40 weeks placed in a plastic box, with no answers, in a room full of fear. I had never known someone with a heart defect or heard of children having open heart surgery. I am a smart, well-educated, lifelong learner. I should have known this, but I didn’t.
I spread awareness to prevent others from being in my shoes. I also spread awareness to create a community of support for other parents who will face the same harrowing moments. For these wonderfully strong parents, my posts probably aren’t inconvenient. If anything, my posts are potentially painful for those who said goodbye to their heart warriors or face a far more complex heart defect than ours. Heart disease isn’t predictable and none of our stories are the same. Some of us who have been able to make it this far, are silently waiting behind a currently stable child or adult, anxiously awaiting another surgery. This is why we share our journey with everyone.
Our story, when we’re ready to tell it, isn’t convenient, but it must be heard. I’m proud of the work I’ve put in as a heart mom. I’m proud of the conversations I fought for at 11:00 p.m. with the hazy eyes of cardiologists, nurse practitioners, nurses, and pharmacists staring back at me. I’m proud to be headed to Washington, DC to lobby for the interests of our community because congenital heart defects are the leading cause of birth defect deaths. Those of us who have the privilege of leaving a hospital with a child speak up for those who will never have the chance to fight heart disease. Right now, there is no cure, and this is a lifelong disease that requires a great deal of attention, so buckle up social media, because this momma isn’t stopping anytime soon. #sorryImnotsorry