Joy is holding his hand as he leaves the wheelchair behind, and walks out of the hospital.
Joy is the moment the doctor tells you the fluid in his chest cavity is gone, and his heart is back to the normal size.
Joy is when the doctor says it’s not a blood clot—he won’t need the shots for the rest of his life. You can put those needles away.
Joy is running wild through the backyard as he squirts you with freezing cold water.
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 his incision. His heart rate is still too high. The joy spins away, torn from your fingers. Sometimes you don’t even notice it until it’s gone. Other times, you feel the height of it—the pure belly-jiggling elation. You want to live in that moment of joy—bury your face in it. You want every last syrupy-sliding bite. You want to hold onto it so much that you risk losing it altogether.
You hold on so tight because you know the hollowed out ache on the other side. You’ve felt the stickiness of the plastic waiting room chair. You know the weight of your eyelids, unwilling to close. You’ve heard the beep of the monitor. You know the crying, the regret, and the emptiness. You’ve seen that tiny fist balled up in pain. You know the loss and the catch in your throat. You remember the pain with your body, even if you can’t find the words for it.
When people ask you how you are, you fumble and stare, searching for the poetry, the song. You want to describe the joy, so you can push away the pain. You want people to see the light and the love, so their bodies don’t turn down the road that you’ve walked down alone, in the dark, armed only with a broken flashlight. You know what’s waiting down there.
I’m sure it’s not healthy, but for me, I’d rather pull at the threads of cotton candy joy then knit sweaters against the cold and the dark. I want to live in the light, twirling with the fairies in a field of caffeine and sugar-concocted euphoria.
I want a cookie.
But I’ve learned about coping and self-control; I’ve learned about expressing my feelings and not eating them up. So I only have one cookie, or maybe two. Then I reach to my husband for comfort. Love. The familiar.
Habits ground me in the everyday grind of parenting; habits make me a functioning adult. Sometimes, though, habit is a sassy comment, or a roll of my eyes. Sometimes habit hunches down over my phone, flipping through Facebook or retweeting.
I’m lucky he lets my sassiness slide, or throws it back at me when I’m too far gone, bringing me closer to the present, and closer to him. Together, we’ve mastered one-liners and elevated puns. This past year, we’ve worked so hard to live in the moment—to not fear what’s coming or dwell on what has passed.
For Bob, that’s meant playing LEGO bricks with Rowan in his hospital bed. It’s meant pushing together the pieces when Rowan didn’t have the strength, and ordering more food from the kitchen because Rowan didn’t like the biscuit, or the egg, or pretty much anything. It’s meant laughing when he finally ate the onion pastry, and raised eyebrows when he thought the blueberry one tasted like candles.
For me, it’s meant sitting on Rowan’s hospital bed and watching the movie Cars for the ninth time. It’s meant laying my upper body on his bed and my bottom in the chair because I want to hold him but I’m not supposed to fall asleep beside him. It’s meant waking for every blood pressure check, holding his hand through the shock and sting of every needle.
In so many ways, it’s meant letting go. Giving in.
It’s meant trusting that the doctors and nurses know what they’re doing.
It’s meant sitting back when they’ve messed it all up, and letting them fix it.
It’s meant pushing the call button and bringing them back. Being aware, being awake. Being here.
But I need to tell you—I’m sick of meaning. I’m tired of heavy moments and sharp inhales. I’m ready for a rest. And Rowan is, too.
Yesterday, we were lying on his bed, and he told me to listen to his heartsong. I laid my head down on the side of his chest, barely a whisper of weight against him.
“Is it different?” he asked. “What does it sound like?”
The music thumps its way into me.
“Bump-bump. Bump-bump. Bump-bump.”
That’s his new song.
“Do you like it?” he asked. “Does it sound like everybody else’s?”
I run my hand across his forehead. “Listen to mine.”
I point at my chest, and he listens. “What sound does it make?” I ask.
“Da-bump. Da-bump. Da bump.” He giggles and falls back onto the bed.
His heartsong is like the scar on his chest—it’s a deep red slash that ends in a dot. When he pulled off his shirt last week, wet from the spray of water, I told him it looked like an exclamation point.
“Yeah!” he yelled. “It’s like I’m saying, LET’S DO THIS!” Jumping up and down, spinning across the concrete, swirls of wet blond hair marking his path.
That’s his heartsong—an exclamation point, a spinning laugh. A whirl of joy. It’s the giggle in the moment, hand pointing to his chest, leaning forward into the sun.
As this is my last column for Literary Mama, I’d like to take a moment to thank you for your support, your Valentines, and most of all—for listening to me as I tried to understand Rowan’s song. You may not know it, but my editor Alissa McElreath rescued you from many long, meandering paths. She helped me find the story underneath, and for this, I cannot say thank you enough. But I will, over and over again. Thank you Alissa, for making my essays sing.
I can’t believe how lucky Rowan, Bob and I are. With everything we’ve been through, we’ve been able to find the joy and the possibility in each moment. That’s because we’ve had all of you, supporting us, listening to us, and loving us. At the end of it all, that’s what I see, and that’s what I want to keep seeing—hands holding tight, lifting each other up, and shining our light into the darkness with the power of unrelenting kindness.