“What have you been up to?”
She asks it innocently enough, her hand resting on her shopping cart. My mind flies to the real answer, and it makes me want to go home. To be with my son. To process, mend and hold. To not be staring at her fingers tapping the handle of the cart. She has somewhere else she needs to go, and so do I. All I wanted was to pick up a gallon of milk, hummus and a loaf of bread.
My mind runs through the possible responses.
I could brush her off: “Not too much. Just grabbing lunch before I head back to work.”
I could disarm her: “Not too much. Taco rebellion.”
I could flip it back to her. “Not too much. You?”
But those answers don’t make their way to my mouth. They aren’t right. They aren’t the heart of it. And the heart is all that matters.
I’m too emotional lately, and I don’t have the tools for this. I shouldn’t be out in public, talking to people. I say stupid stuff. And people act weird around me.
Last April we began planning for my son’s surgery. We’d known it was coming — he was born with two holes in his heart. Now, five years later, his heart, once so small, had become enlarged. This meant more blood was making its way into his lungs, which could lead to heart palpitations, shortness of breath and even death.
We had been waiting, hoping random tissue would gather around the hole to form a barrier. It didn’t. We scheduled surgery for July.
But when we went in for one last appointment in June, it looked like some tissue was gathering around the hole. It looked like it would close on its own.
We held our breath and pushed back the surgery. We did exactly what we know how to do — we waited, and we played. There were lots of Legos, soccer balls and books. We invented new games and told crazy stories. We lived for the moment — riding the carousel and piling up sand at the beach. It was wild and it was good and everything seemed possible.
That’s the power of waiting. You don’t know what’s coming and you don’t know what you’ll leave behind, so you put it all on the table. You play every card in the deck. You finally understand all those stupid inspirational posters, and you don’t have to read New Age books about being present because there is nothing else — just that little boy with his dirty blond hair and his Legos and his smiles and his heart beating a little too hard.
Summer came and went. We shuffled through fall, sickness dogging our heels. We sat in the cardiologist’s office in January.
“We can’t wait any more.”
The words were gentle and quiet, but clear. His Z-score — the size of his heart relative to his body — was shooting up. His heart was growing too big too fast. We scheduled his surgery for March.
We made our plans. We packed our bags. We told him everything he wanted to know, coded and made gentle enough for a 5-year-old.
“Is it going to hurt?”
“Yes, but if it hurts, you need to tell us, and we’ll give you medicine.”
“Why do I have to do it?”
“To patch up the hole in your heart. It will make you feel better. You’ll run even faster than you did before. You’ll run faster than Daddy.”
“I run faster than Daddy right now.” He doesn’t really. Daddy lets him win. We really should let him lose sometimes. But we want him to be happy.
“You’ll run faster.”
“I don’t want to have surgery.”
I’ve heard that sentence over and over. No nuance. No more questions. Just refusal: I don’t want it.
But it’s not a choice anymore, and waiting is not a choice. His body is slowly breaking down; his heart is too big for his chest. Who would have thought it would be bad to have too big of a heart?
We went to the hospital for pre-op tests. They drew his blood and did a chest X-ray, and we toured the ICU. He played with the buttons on the bed and asked the nurse every question he could think of, but when it came to talking to me, there was no question, only refusal.
“I don’t want to do it.”
And what I wanted to say was: “Oh honey, neither do I. Let’s go home. Let’s break out the Legos and lie on the floor and create a world where this doesn’t have to happen.”
But instead I tell him, “I know.”
After the pre-op, we go home. We have a snack and put another load of laundry into the washer. The thing that amazes me is how much laundry there is to do. First it was his clothes, then ours. Now, it’s the sheets for when we come back, the towels we don’t want to leave in the hamper. So much to do before the hospital bed.
And then the call from the nurse, about the blood work.
He failed the viral panel.
Somehow, after four weeks, he still had a bit of cold virus in his system, and they couldn’t put him on the heart bypass machine. If they did, after the surgery his immune system would blast into recovery, but the virus would also run rampant. His white blood cells would be so busy helping him recover that the virus would run free, destroying his lungs, prolonging his recovery. We’d have to wait.
Yep. We’re waiting again.
Now, we watch him, pale and tired, turning back to the nap he gave up two years ago. He sleeps the day away. We sanitize, we wash hands, we clean like crazy. We’re keeping him home from kindergarten. He’s missing three birthday parties, including his own.
But he’s getting healthy. He’ll be good. We will be good. Positive affirmations, reinforcement, begging the universe . . . something like that.
He’s having surgery soon.
So, when she asks me in the grocery store, “What have you been up to?,” the true answer would be waiting.
But then I’d have to tell her about my son, the surgery, his tiny hands, his Legos and his ridiculous cold. And, to be honest, I don’t want to. Because, you know what? He’s at home — and he’s waiting for me.
“Not too much,” I say, and smile that smile that says goodbye. “Not too much.”
Kate Ristau is a folklorist and the author of a young adult series, “Shadow Girl,” and a middle-grade series, “Clockbreakers.” She lives in Portland, Ore. Find her on Twitter @kateristau.
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