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.
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