As a parent, dealing with my son’s bone cancer has been an expanding evolution. It’s been five and a half months since the diagnoses. He’s lost 40lbs. We set up an IV each night now because he can barely eat most of the time. There are mouth sores and nausea so everything that goes down tends to be a torment.
His mother is worn down. His brother seems angry. I have arrived at a place of resignation cloaked with a dutiful determination like a too heavy coat.
There are good days with his wry grin and jokes about my age. Sometimes he wants to go to eat mussels at Olive Garden. Last time he was cheerful when we left. When we exited the car at the restaurant he had gone pale. Head hanging he stood quietly leaning forward on his cane. He’ll touch his long thin index finger to his temple as if trying to recall something.
It’s like a “tell” saying, “I’ve gotten nauseous and I’m not sure what’s going to happen next.” I want to say calmly, “Let’s just go back. There’s plenty to eat at home.” but I don’t because in a way I know it would be admitting defeat … or even worse stealing a moment of joy from him.
He perseveres through the meal. I’m a little on edge and watchful. It’s way too loud and garish. We notice an alarming exposure of hairy “butt crack’ like a too fat plumber at the table beside us and it provides a cleansing laugh.
Home on a dreary weekend of no chemo he immerses himself in an Xbox game. When this all began I admonished him for playing it too much. Now I’m glad for anything that distracts him from this plodding and shrunken world.
His dog, Willow, continues to be a too large lap dog. Though he sits in a tiny game chair with his salvaged leg propped on an ottoman, she is splayed across his now alarmingly thin lap watching the game as if to give advice while he peers over her white bulldog head.
Sometimes when we have to “hook him up” to the IV we’ll look over after a few minutes. He’ll be flushed and thin lipped. At first I thought he was sick. Now we know. He’s angry. He’s angry at this hateful trial that rest heavily in his young heart.
The truth is we’re all angry but not with God or ourselves. We’re angry at the random insidiousness of this disease that wants to steal a boy’s youth. We’re angry at the hateful response the body has to the only protocol for cure.
Maybe the anger is a good thing. At least we all feel the same. We’re all fighting in the same battle.
His school class went to Disney this past weekend. One of them said, “You know we’ve missed Corson all year but we miss him even more on this trip. He’s always been with us when we went somewhere.” One of them brought him a leather bracelet that said “I win.”
Corson told us a while back that when all this was over he wanted to get a tattoo. For a moment I hesitated. Then he told me what he wanted it to say.
“I win, Dad. I want the tattoo to say, I win.”
I think I’ll get one too.