This isn’t what I wrote earlier. That was trashed. Things have changed.
We’ve been reading these books to Joey over the past months, The Chronicles of Ancient Darkness. They are adventure tales, probably aimed at pre-teen boys, about a character named Torak, who lives among the ancient tribes of Europe, has a wolf pal, and gets into and out of some harrowing trouble.
The books are probably for kids a little older than Joey, but he really loves hearing them, based on his reaction when we say, “do you want to hear a Torak story?” Sometimes while we read, he makes sounds, like he’s harmonizing with us.
Because Joey isn’t verbal and communication in general is a challenge, we’re not sure how much of the stories he understands, but a passage in the book we’re reading now really hit the mark: “Everything in the world has a spirit. Hunter, prey, river, tree. Not all of them can talk but all can hear and think.”
Joey isn’t a hunter, prey, river or tree, but he definitely can hear and think. He’s aware of what’s going on around him, even if he doesn’t always understand it. He overheard us yesterday talking about the procedure he was to undergo, heard the concern in our voice when the ridiculous doctor suggested performing a portion of it without any kind of sedative. Joey heard the words, “discomfort,” heard his parents say, “by discomfort, you mean pain,” and “Joey really doesn’t like hoses going through his nose.” The boy heard tones, pouted, cried a little. The look on his face plainly said, “Um, I don’t like this.”
He was hearing and thinking, and reacting in a way you might expect. Sometimes, though, his reactions don’t quite match the stimulus, in a way you wouldn’t expect. For example, if I cry, if tears well up, he knows it. And he laughs. Happens every time. It happened last night when sweet Rachel was dying.
She was 14, and staying in room 5, down the hall and around the corner from Joey’s room 14.
Rachel arrived here Wednesday night, around the same time as Joey. We tried to know her family a little bit. They had virtually commandeered the waiting room just outside the PICU ward, there were so many of them. We heard them praying a lot. They were not all born in this country. They had dark skin, eyes and hair, and looked as ragged as we did, as we still do, as most parents on this treadmill do.
Some of their prayers reminded me of when I was Catholic. They circled their wagons in that waiting room, girding themselves against the inevitable spin of the universe. They mainly stick to themselves, but my wife and I are nosy types and we insinuated ourselves as much as the family would let us.
“It’s important to have family around you in a place like this, huh,” I mumbled to the largest and seemingly most gregarious guy in the group. “Is she your child?”
“My niece,” he said. “Yes, thank God for family.”
In a corner of the room, a small woman said, “I’m her mother.”
“I’m sorry we haven’t introduced ourselves,” I said. “We’ve been seeing you here and we’re thinking about your little girl, sending good thoughts and prayers.”
“God bless you and your child,” the mother said.
“What’s going on with your son?” the large uncle asked.
I told him it was a respiratory mystery, probably something to do with his CP and the resulting funky development of his body, or lack thereof, and asked if they didn’t mind telling me about their little girl.
“She had a stroke while receiving chemotherapy,” the mother said.
Boom, I thought. There it is again. Everywhere you turn in this ward, this hospital, this world there are people worse off than you and me and everyone we know. Better off, too. We all are the mean. We all are exceptional and ordinary, and we all leave through the same door eventually. We all have heavy problems at some point, and hopefully they shape us and form us like hammers on hot metal, but sometimes they break our hearts.
Last night around 8 or 9, we got hungry, so I went to the family waiting area to heat up leftover Chinese food in the microwave. The place was mostly empty for the first time in two days. Weird. That’s when I met Rachel’s pastor, a round, dark woman.
“I heard your son is doing well after his procedure,” she said. “We’re so glad. We’ve been praying for him.” I’d not met her before, nor had Jane. The grapevine. This PICU place is a small community in a very large building.
“Thank you,” I said. “We really appreciate it. We’ve been thinking about Rachel, too, sending every good vibe we know of. How is she doing?”
She shook her head. “The family is saying goodbye to her now.” There had been hope a day before, but that was gone and so was time. She used a kind euphemism for ‘pulling the plug’ that I don’t remember.
“They don’t want to let Rachel go,” she said. “But she’ll be fine. She’ll be with God.”
I admired her assurance, her faith in something bigger and benevolent, and the apparent strength it gave her.
“Don’t let me stop you from getting dinner,” she said, excusing herself.
I shoved the food back in the fridge and did a zombie walk back to Joey’s room. You have to walk past room 5 to get to room 14, and there was Rachel’s family. I caught the eyes of a few men gathered just outside her room, mutual recognition, we nodded, grim looks, and I kept walking. Back in the now-safe sanctuary of 14, the tears came in a quiet burst, sounding a lot like a smothered sneeze.
And here’s the thing. Joey’s reactions. Whenever Jane or I sneeze around Joey, he reacts. He hates it. He cries. The sound of it, even a stifled sneeze, really bothers him. We’re not sure why, though we have theories. But he knew this wasn’t a sneeze, even though he can’t see very well, even though it sounded — to me — like part of a sneeze. He knew this was his big strong Daddy crying like a baby, and he started to laugh. Still a little stoned from the post-procedural painkiller, he looked in my direction and laughed, inviting a kiss on his head.
“Thank you, son,” I said. “Thank you.”
Not for the first time I wondered: why does he laugh when I cry? Is this how Joey gives strength to his old man? I don’t know. Maybe it’s faith.