By: Maureen Snider
Those first stormy days are a blur. The discovery of the heart defect, the diagnosis, the worry, the guilt, the fear: they all blend together like paint on a watercolor landscape. Almost 14 years later, I can still summon that frightful feeling in the pit of my stomach as if it were yesterday. And frankly, yesterday is always a possibility for tomorrow, because a congenital heart defect never goes away.
Our sweet bundle of a son, Whelan, was born in a panicked, pre-eclamptic rush. From those first blissful newborn moments until today, as a teenager, he is a joy: mellow, easy going and self-motivated. Hindsight has gifted us with the knowledge that this is who Whelan was born to be, and this is the story that he owns.
Our CHD journey started when our pediatrician, listening to Whelans heart, stopped in his tracks and called a cardiologist. Without passing go, our miniature son was recumbent on a gurney for his first (of countless) echocardiograms. He was diagnosed with aortic stenosis due to a bicuspid aortic valve, and at that moment we began the after to the before of our life.
Whelan had a successful aortic valvuloplasty by our skilled pediatric cardiologist when he was five months old. Open heart surgery is a certainty. When? We have no idea. When his heart can no longer sustain his growth or activity? When he experiences shortness of breath or fainting spells? We just dont know.
This is where my story as a CHD parent begins, and these are my truths:
- The unknown offers a certain freedom that I have embraced. Id rather not know the future date and time of Whelans inevitable open heart surgery. It has afforded our family the luxury of moving forward in miraculous ways (we added another beloved son to the mix), and it has allowed us to dwell on the certainty of today, not the uncertainty of tomorrow. Blessings can often be found in the darkest corners if you just take the time to look for them.
- I am a heart mom and my son is a heart warrior. For years I doubted this because our son does not have a scar on his chest. But we have certainly earned these badges! Weve been to the cath lab for a valvuloplasty and we did not know whether this would buy us six months or six years. There have been countless visits to the cardiologist, numerous echocardiograms and EKGs, trips to CHLA and taxing stress tests. We are robustly aware, that as far as CHDs go, we are the lucky ones. However, that does not diminish my title as a heart mom or Whelans title as a heart warrior.
- It was an unspoken and resolute decision my husband and I made not to let Whelans CHD define his life. It does not sit with us at the dinner table or float on the ocean of our family vacations. While we are surrounded by a strong and loving network of friends and family, as well as an ever-present community of faith, Whelans heart is rarely a topic of conversation. He looks incredibly healthy and vibrant, so those closest to us often forget about his heart. When people look at Whelan they see a confident, intelligent, funny and kind boy, who always puts the needs of others ahead of his own. This is the greatest gift.
- The most magical words for our family are status quo. Every three months, when we head to the cardiologist for a check-up, my silent prayer is for Whelans heart function to remain unchanged. Knowing that improvement is not a possibility, I just love the status quo! Who would have thought?
- My heart kid amazes me daily. He suits up for PE class, knowing that he wont be able to keep up with his peers. However, he never complains or asks to be excused. In elementary school, he signed up for every sport, knowing hed be sitting on the bench. But he has always tried his best, and his effort almost always exceeds that of the heart healthy kids. My kid is a superstar, because in spite of his limitations, he always chooses to rise to the occasion.
There are alternate truths to this story. Yet, we are steadfast in our decision to focus on what has offered us the greatest return on our emotional investment. We were granted a unique lens into parenthood, one we never could have imagined or anticipated. We are unable to comprehend our beloved child in any other iteration. I know that the fierce love we have for our children will guide us through the darkest hours and surprise us in the brightest moments. We have found faith, understanding and friendship in places we never thought to look before, and for this we are infinitely blessed.
Wife & mom of two boys. Marathon runner, beach lover, gatherer of friends, and organizer extraordinaire.
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