My son was born with two holes in his heart. For years, we watched and waited, wondering what would happen to him. Then, at five years old, we scheduled his surgery. These essays tell our story — wrapped up in joy and grief and pain and hope.
The tell the story of us.
For anyone else on this journey, or if you know someone who is, please read and share these stories. Then, get in touch with me.
Here’s how our essay in the New York Times begins:
“Can I get it?”
His tiny hands are outstretched, his feet firmly planted in the Target toy aisle. He is holding up another Lego set.
Rowan is 6 years old, and his admiration for Lego building blocks is unending.
My fingers tap the red handle of the cart. He’s getting spoiled. Everyone knows it, but no one says it, and the reason is simple: He had heart surgery in April. He was born with two holes in his little heart. One closed, but the other one stayed open. We watched it. We waited. We hoped that it would close on its own.
But it didn’t. Instead, his heart became more and more enlarged. Over time, that can permanently scar his lungs’ blood vessels. It can lead to arrhythmias, shortness of breath and swelling. It can lead to valve damage. It can lead to death.
I grip the cart, feeling the tightness in my own chest, the ache and the pull of the stone that dropped down into my lungs the day we scheduled his surgery. For months, that stone has been stuck there, somewhere between my lungs and my throat, holding back the tears and the weight that grab me unexpectedly in the long hours of the night. That stone never disappears.
Now we’re standing in the Target aisle five weeks after his heart surgery. His hands are outstretched, and I’m thinking of all the Legos he’s gotten — four sets the week before. He keeps asking, and we keep saying yes. We’ll never stop.