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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24 Responses to this article
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Donna @ NappyDaze August 6, 2012
So powerfully written, especially that poem. Has made me reassess already the trivialities I was worried about today… Thank you for the eye opener x
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Janine Fitzpatrick August 6, 2012
So very, very moving.
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Bernadette Morley August 6, 2012
Wow. Just, wow.
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Me August 6, 2012
My sister died last year from breast cancer and my brother has a five year old daughter with severe cerebral palsy, so I am familiar with some of the emotions this article touches on. My sister taught us that in the end love is all that matters. Someone to hold your hand and say ‘I’m here with you.’ It also helps to know others share similar experiences – thanks Tony for writing this article. And yes, ‘I’m good thanks’.
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Joni August 6, 2012
A very compelling piece. Having a child with a disability & a grandfather who died from cancer, I can very much relate to the emotions of doubt & pain, faith & hope.
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Kelly Exeter August 6, 2012
This is wonderful writing
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Margy August 6, 2012
Thankyou: that poem is POWERFUL. Elle Richards that is a magnificent piece of writing. WOW! Thankyou Tony for sharing something so close to your heart.
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Trish August 6, 2012
The poem is chilling , I have recently been diagnosed with breast cancer my greatest fears are how much it will affect my six year boys (twins).
The picture of Ben too, amazing.I think I can see his portACath line reaching up over his collarbone. -
Trish August 6, 2012
I wish Jack and brightest of futures and I’m sure your love and tenacity will help him reach his fullest potential.
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Fee August 6, 2012
Note to self – do not read this whilst sitting at desk in open plan office…sniff…*gulp* – beautiful
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Lynnie August 6, 2012
Your son is just beautiful
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Tia August 6, 2012
Thank you
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Tia August 6, 2012
Trish – I was diagnosed with breast cancer three weeks ago, and start chemo Aug 20. I have two sons (5 and 2), too. I wish you well with your journey. I’ve found mindfulness meditation and Eckhart Tolle’s work to be very comforting and inspiring. Best wishes to you xx
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debra August 6, 2012
what a powerful and moving way to put some perspective into a Monday morning. Thank you so much.
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Suzy August 6, 2012
Elle Richards – what a powerfull poem – Iam still in tears
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foolio August 6, 2012
We thought we were going to Italy and ended up in Holland, with a son with Asperger’s. We too were given the “Holland” essay … with Aspies sometimes you’re almost talking another language — i.e. Dutch! After the initial grief of acknowledging that he wasn’t going to ‘grow out of it’, that this was it, this was life from now on, we’ve settled in to a different life — one that has its difficult moments, but with lots of special ones as well. The highs will be higher because of what it takes to get there, Tony, and you will meet some amazing people along the way… including your son.
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Tony August 6, 2012
Thank you for all your well wishes. It’s amazing to think there’s such a wonderful undercurrent of compassion and love in the community. Jack is nearly sitting up, and making some positive speech noises. We have considerable hope that he will walk and talk, and several CP readers have shared inspiring examples of the full lives able to be lived. And a special thanks to Elle, for allowing me to finish the piece with such an amazing piece of writing. I wish her and her Mum Mandy the best of luck. x
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Jennie August 6, 2012
I’m crying here. I’ve been coping with a different diagnosis for my son for nearly a year. When I first read that ‘Welcome to Holland’ poem I broke down – it was such a perfect description of how I felt.
Like Tony, I’m more ‘at peace’ with our diagnosis now. I can mention it to people in passing without getting upset. The self pity has almost completely faded – a few sessions with a psychologist was a great help there. Like the girl who wrote the poem, noting that no flowers were arriving for her, parents need to make sure that they are also getting care and attention, not just their special needs child.
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Kay August 6, 2012
Thank you Tony.
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Anna H August 6, 2012
Someone pass me the tissues. There is so much emotion in this post.
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Vanessa Macaulay August 7, 2012
Beautifully expressed Tony! Thank you for showing my photo of Our Ben. Soon this will be a distant memory for Ben- our hearts go out to you and so many others who will be concerned for their dear kids for a long time to come. I find it hard to use the right words because I know you have heard all of them, except to say Jack chose you because you are special and he knows he will be in the best hands as enjoys holland with you. Xxx
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Seana Smith August 7, 2012
What a splendid piece. We’ve also been sent that poem… we have a son with autism spectrum… I prefer the bleaker black humour of another called ‘Welcome to Beirut’ when I’m feeling a bit ferocious. Heike Fabig has a blog called Rollercoaster Parenting, two of her three kids have CP, her daughter is at school with one of my twins and is a cheeky girl, so very NOT disabled in so many ways.
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Elle Richards August 16, 2012
Thank you everyone for all the kind comments about my poem and the messages of support! And thank you also to Tony, your little boy is so cute and beautiful! – Elle Richards
