Heartsong

You breathe it in, but you want to hold your breath. There’s always an edge to joy. It doesn’t last. He trips over the garden hose. The seatbelt digs into…

I sat down on the side of his bed. He was pale, no – white. The color completely drained from his face. Eyes shut; tube taped over his mouth. I…

The day before Rowan’s open-heart surgery, when they drew his blood, I held him on my lap. I talked him through the pain. I focused on the process, on what…

We can’t fix Rowan’s heart—that’s the surgeon’s job. It took me a long time to accept that. I wish I could be in control, or that I could make it…

These last few months, we thought we had a chance. While Rowan’s heart has been enlarging, tissue has also been gathering around the hole, increasing the possibility that it might…

There’s a reason we don’t talk directly about death. There’s a reason we codify our rituals and create a language of loss: Because when we stand in the face of…

You wait until Kindergarten. You hold out hope that his heart will heal until the hope is gone and one hole remains. The blood stretches out his heart, enlarging the…

These stories are easy, and they’re fun. Dancing, twirling—Spirit dusts every scene with unicorn sparkles, and Rowan listens with glossy eyes. Spirit makes sense to him because he loves magical…

I just want this to be over. I want it to be six months from now. I want my son playing with stickers that weren’t just ripped off his chest,…

This is where we are now—telling Rowan the stories that will help him make it to the other side of the hospital bed. These stories are not easy. This column,…