More Than a Diagnosis
Despite our son’s prominent scar and the fact that he has faced death a dozen times, it’s surprisingly easy to forget how serious and perilous his condition truly is. Most days, we simply see him as our son—this beautiful, radiant boy exploring his world, growing, developing skills, and gaining strength with every step. We don’t think of him as a child with hypoplastic left heart syndrome. It’s not that we forget about it entirely, but sometimes, it fades quietly into the background as the rhythm of daily life takes center stage.
Of course, the reality of his condition never disappears—how could it? The scar across his chest is a constant reminder of what his little heart has endured. It’s there in the doctors’ appointments, the medications, and the subtle ways his body moves differently from others his age. And yet, we’ve become so accustomed to his strength, to his resilience, that we focus more on the joy he brings to our lives than on the fact that his heart works at half the capacity of a typical one.
Parenting him has taught me how to live in two realities at once. On one side, we constantly face the knowledge that his heart will always need extra care and vigilance. On the other, we are swept up in the wonder of his everyday moments—the way his laughter fills a room, or how his small hand slips into mine when he’s curious or afraid. Somehow, these two truths coexist, one never fully overshadowing the other.
Lately, with his upcoming cardiac catheterization, I find myself reflecting more on his health. I think back to the moments when his life seemed as fragile as glass, and I compare them to the sturdy, determined boy standing before me now. I remember those nights in the hospital, watching monitors with bated breath, waiting for any sign of improvement. I think of the uncertainty that hung over us in those early days—wondering how much time we’d have with him, or how long his heart would keep going.
And yet, here we are. He is not just surviving—he is thriving. Life has a way of lulling you into a sense of normalcy, even when a shadow of risk looms overhead. He has learned to walk, to run, to smile, and to laugh. He has formed bonds and friendships. He has learned to experience joy, and in turn, he has taught us to be fully present with him in each moment.
At times, I feel guilty for letting the worry slip into the background, for not being constantly vigilant about his condition. There are moments when I almost want to believe we’ve moved past the hardest part. But then I realize—maybe that’s the greatest gift we can give him: the freedom to be seen as just a child, not as a diagnosis, to live fully without the weight of fear always hanging over him.
Still, in the quiet moments, when the world slows and I contemplate his upcoming procedure, I am reminded of the delicate balance we walk. We are his protectors, his advocates, and yet, we are also his biggest cheerleaders, celebrating each milestone, each smile, each little triumph that proves he is so much more than his heart condition.
As the days tick down to his next procedure, I find myself in a familiar place—a blend of gratitude and fear. I am thankful for how far we’ve come, for the doctors, for the advances in medicine, and most of all, for him. But there’s always that quiet hum of anxiety, reminding me that his journey is not simple. It is complex, filled with uncertainty, fear, and hope—and that complexity is part of its beauty.
