FINE THANKS, AND YOU?
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 recently, when I presented prizes in my capacity as judge of the Children’s and Youth Writing sections of the Cancer Council Victoria Arts Awards.
Fighting away cancer cells with love – Expecto – love – e – o Harry Sebo
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.
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