I haven’t felt comfortable writing much about Jack’s cerebral palsy. We found out on my wife’s birthday last year, a devastating ‘can you come in’ phone call from a paediatrician on the eve of our son’s discharge from the Mercy’s Special Care Nursery.
Amidst the intermittent joy of having a new baby, it’s been a year full of uncertainty and fear. How severe will it be? What faculties will be affected? Will he walk? Talk? Go to school? Have friends? Leave home? Fall in love?
Will he be okay when we die?
Will he be okay?
The best advice any medical practitioner gave me over the twelve months was a GP at Clifton Hill Medical Centre. ‘Stop trying to imagine the future because you won’t get it right. Life’s too mercurial for any of us to imagine what’s going to happen.’
I have been almost entirely unsuccessful at following this advice.
Nevertheless, the sharp grief of twelve months ago has been worn smooth by simple effluxion of time. I had some sense of this on the weekend, when I presented prizes in my capacity as judge of the Children’s and Youth Writing sections of the Cancer Council Victoria Arts Awards.
It’s my fifth year in the job, and it’s always an emotional ceremony. The idea of the awards is that people who have been touched by cancer express their experience through art – whether it be film, photography, visual art, poetry or short stories. Recipients often cry as they explain their work, and pay tribute to their loved ones.
Last year, as I made my introductory remarks, I was full to the brim with my own sadness, and it overflowed into great show stopping sobs. I battled on, embarrassedly aware that everything had suddenly become about me, even when so many people in the audience had their own battles, their own dark clouds to worry about.
This year, I didn’t fall apart. I managed to acknowledge the entrants, relay the cancer struggles of some friends and family, and read the winning entries without the feeling of being squeezed by grief. I wondered afterward if that means that I’m feeling better, if the sadness for the loss of the dream of a perfect baby has been healed by time spent with the wonderful baby we do have.
This might be partly true, for Jack is wonderful, and the easiest parts of what has been a harrowing journey have been those spent with him in arms. But just as likely, it’s passage of time. Maintaining the grief is as exhausting as maintaining the rage, and although the sadness is no longer so fresh that I’m breaking down in public situations, I’m still looking at every alert, crawling, fully-sighted one year old and thinking ‘not my baby’, and I’m still looking at active, able bodied adults and thinking ‘will he ever?’.
How does it go again? ‘Stop trying to imagine the future because you won’t get it right.’
The other consistent advice we have been given by other parents of children with disabilities is to accept help, support each other, and enjoy the victories when and if they occur. A poem we’ve been forwarded several times is ‘Welcome to Holland’ by Emily Pearl Kingston. It’s right about the windmills – they are very nice – but it’s also right about the pain. We wanted to go to Italy.
Of course pain is inevitable. it’s impossible to reach middle age without facing one or all of death, illness, unemployment, estrangement, betrayal, rejection or failure. One of the privileges of judging the Cancer Council Arts Awards is that the entrants lay bare their pain in a way that takes a courage and openess that I, as a writer, rarely feel capable of. Indeed I’m only writing this blog because these (mostly) young artists inpsired me to do so. What I actually feel like writing about is the Olympic rowing, and how I’m hoping one of the coaches in the background will crash his bike into the river.
There were many great entries, all of which are profiled on the Arts Awards website. You can vote for a favourite as part of the People’s Choice award. Here are a few of my mine:
In the children’s visual art category, Lanya Johns painted this amazing piece ‘Three Faces Have We’. Her artist statement reads:
“I remember hearing my Mum talk about a quote once that goes something like, ‘Everybody has two faces – be careful of those with three’. I feel sometimes like cancer has given us three faces. There is the public smiley face, the private and terrified face – and then the face that we all try to protect each other from seeing. We are lucky we three. We have each other, and all our faces.”
In the adult’s visual art category, the commended entry was this one:
Vanessa MacCauley, the mother who took the photo, said that she didn’t want to say much, that the photo said everything, and then said a few words more and reduced the room to tears.
In the Indigenous Art category, Rex Murray painted this affecting piece about the feeling of helplessness he had dealing with the death of his brother, the strong, active kid that he used to jump into rivers with as a kid.
But maybe the piece that spoke to me more than any other was the one I awarded the top prize in the Youth Writing section. It’s a poem by Elle Richards, ‘What goes unsaid’ and it’s about the everyday ‘how are you’ gambit that opens so many of our social interactions.
What goes unsaid
A friend stops and waves,
“Hey! It’s good to see you, how are you?”
I was only twelve.
Cancer had lurked in my hallway; tapped on my window.
It had seeped through the cracks in my wall.
I had breathed it in, let it fill my lungs.
It never left me,
never stopped haunting me.
Good morning Cancer,
but never goodnight.
It had shadowed the dark,
followed me to school.
It had entwined itself in my thoughts,
left me sleeping with the light on,
afraid of its presence,
angry at its power.
I had sat by as chemotherapy claimed my mother’s hair,
turned her skin yellow and made her bones weak.
I had watched radiation therapy.
Seen my mother’s body burned by clunking machines.
The machines had no feelings, they burned scar upon scar.
But my mother had feelings, and she cried.
I had screamed.
Slammed doors, punched pillows.
I had felt anger claw at my stomach;
it had made me feel sick and alone.
I had let tears run to my mouth and soothe my cracked lips.
I cried until I felt no emotion at all. None.
I had seen my mother break down in the kitchen.
She had curled herself in a ball; hugged her knees and screamed.
I had sat next to her; I didn’t say anything.
I didn’t touch her. I just sat there.
Next to her.
Just as afraid.
I had been jealous of the gifts that landed at our front door.
Beautiful soaps and chocolates.
One after the other.
Not for me.
Not a single card or flower.
I had seen her with only one breast.
I had seen her, too sick and too tired to move.
I had seen my mother tangled in tubes.
Covered by white sheets,
And unnaturally white skin.
I had checked on her every morning.
I checked while she was sleeping,
hoping she was just sleeping.
I had slipped into her bed and wrapped myself in her blankets.
I had gently maneuvered myself between her warm arms and cuddled my head near
her chest. Gingerly. Carefully.
I had rested my chin near the scars that were her breast.
And laid there, warm and comfortable,
but still afraid.
But every scar on my mother’s chest,
every tube in her arm,
every tear on her face,
made me stronger.
And I believed if I gave all my strength to my mother, she would live.
So I blew it into a purple crystal and put it by her bed.
Now this man is smiling at me, asking how I am.
And it takes all my strength to reply simply;
“I’m good thanks, and you?”