Michael Thornton Books

Monday, 7 February 2011.

My son died last week.

There. I’ve given you the ending. No twist here.

(Note: Do you have any idea what it's like, how hard it is to write and read 'My son died last week'? Another huge chunk of me dies within me every time I read those five words.)

Jamie was twenty-eight. A boy. Diagnosed with juvenile diabetes at twelve, everything imaginable went wrong for our second son. Failing eyesight at five; problems with feet at ten. By Year Seven, a daily regimen of testing, injecting, diet and exercise. Fortnightly sessions with a psychologist. Throughout, Jamie continued his school basketball, hockey and each summer the Murray Marathon kayaking.

Once on the Murray – Jamie was in Year Nine – his kayaking partner Jonno drank his water before they paddled, and within moments of starting became dehydrated and all but collapsed. Jamie paddled the 11 km leg single-handed. His teacher, paddling by in an adult division, saw Jamie’s effort and over dinner in front of seventy boys, parents and teachers Jamie was awarded ‘Effort-Of-The-Day’. For this dad it was tantamount to him winning a Nobel Prize.

Jamie was an enterprising teenager. At fourteen, he took a sheet of Masonite and made a quarter-sized table tennis table complete with cut-down bats and net. He painted the playing surface green and even put a white line around the edge. He called it Plong (play on ping pong). I took his effort to Taiwan – Jamie couldn’t get time off school – and brought back a sample. Jamie was so excited, yet was heartbroken when we found that while we could get the complete, packaged product through Customs and into stores for $60, executives at a major toy retailer said they couldn’t sell it for more than $69.95.

Jamie’s clever game of mini table tennis, ideal for small spaces, wasn’t viable.

‘Stabilisation’ was the term used for what became Jamie’s quarterly stays in the children’s ward in the Austin Hospital. They almost named a bed after him, he was there so often. When he turned eighteen he ‘progressed’ to the renal wing at Monash Medical Centre. And despite the wonderful care provided by dedicated doctors and nurses, we all, especially Jamie, soon began to dread the bland surroundings of Thirty-Four-South.

And so began a new pattern of regular stays – more stabilisation – which progressed to full-on, invasive interventions. A fistula was needed in Jamie’s wrist to facilitate dialysis, but his heart stopped while it was being inserted and the surgeons rushed to perform open heart surgery, removing the peritoneal sack surrounding the heart. It was full of glug.

Weeks of in-patient rehab at Ferntree Gully followed.

Thus began thrice-weekly visits to Forest Hill for dialysis. Fellow patients took to Jamie like he was their grandson, their partners providing cake for ‘family’ morning teas.

Toes and an in-step came off; more gut-wrenching events for parents and siblings and special friends who hang around when the going gets tough, and especially for Jamie himself.

Then early one summer’s day my wife and I were walking on the highway outside our farm in northern Victoria, when Jamie rang to say he’d just had a phone call from Monash: a kidney and pancreas were immediately available and he was to front by 11 a.m.

You don’t get told who to thank for life-saving organs: gifts which brought colour and confidence and a sense of normality to Jamie’s life.

And yet, however good the doctors were, and as well as the new kidney and pancreas seemed to be working, somehow, in unspoken language we knew as a family we were on a slow road to nowhere. We knew Jamie’s time was limited.

We think Jamie knew too.

For ages, I tried to block-out reality. Yet ever so slowly in my own way I too came to accept if not understand that Jamie would pre-decease me, to realise if not accept my boy would never see me in a nursing home bed.

Eventually, I too came to realise that our world, a world to which we clung so precariously, and for so long, would crumble.

Every parent’s worst nightmare.

The end came by way of infection – possibly cancer – and pressure on the brain stem.

Be prepared, the surgeons warned us after extensive surgery, ‘not to expect back the same Jamie you had before’: ten words I didn’t want to hear; ten words I refused to take in; ten words to make me howl. And to pray.

A week later the doctors returned. Jamie hadn’t woken up. Continuing was pointless, they advised.

Would we agree to remove life support?

What a question to ask a parent.

Afterwards, I sat quietly beside his bed and watched the fresh white blanket over his chest rise and fall with each gentle breath.

Sixty-five hours later, the white blanket stopped rising.

My boy was dead.

***

They say losing a child is one of life’s hardest things. They are so wrong. Losing a child is not one of life’s hardest things; it’s THE toughest thing a parent can ever bare, or not bare if truth be told. Our boy is dead. What can possibly be worse?

Our lives will never be the same. We will never be the same.

Bugger. Bugger. Bugger.

Part of me wants to go with him. But that would cause misery to others. Still, the thought lingers.

Part of me doesn’t—can’t—won’t accept he’s gone, and that any moment my mobile phone will ring and I’ll hear his voice, or an email will pop into my in-box. His mobile number is still in my phone. I want so much to ring it and hear his up-beat voice tell me to leave a message – that he’ll get back to me. But I daren’t – because he won’t.

I so wish Optus would cut off his phone, but they say they can’t until they see the death certificate, which takes a lifetime to arrive.

I daren’t send him an email for fear I’ll be told it’s undeliverable.

A friend who lost a child (extraordinarily, we know eight people who’ve lost a child), wrote yesterday from New South Wales. ‘You have and will have so many sad tasks to complete, tasks that parents never expect to face. Everyone is appalled with the enormity of your loss; they can’t begin to imagine how they would survive a similar experience,’ wrote Robyn.

‘Many people can’t put their feelings into words; they need to hug you instead. They don’t know if you want to talk about it, or not. They can’t comprehend that there is little room in your brain for anything else.

‘Some retreat to platitudes, as though someone else has better words. People who share the farewell process become more important to you as another link is forged between you.

‘And people will tell you it gets easier over time. It doesn’t. You just live another day with the pain. You live with the void.’

Void. That’s the word. An empty space. It’s as if a magician has waved his wand over our lives and our sick but essential child dressed in his white moleskins, sky blue shirt, dark sunglasses on his forehead, extravagant watch on his wrist, dog on his lap, has vanished into thin air. Leaving a massive hole for us to fill with our tears and pain.

Another friend rang. Jamie, he said, got dealt a rotten hand.

Yes he did, I cried down the line.

Smallest things in our daily routine, everyday things we take for granted, become a source of dread; they prompt more tears. Silly small things, like realising Jamie will never again eat mashed potato like we had last night. That he’ll never again watch a leaf rustle; see rain fall; take a photo; pat his Jack Russell; watch his adored Billy Elliott DVD, buy something he can’t afford.

I cry because Jamie will never again enjoy a schnitzel, which he used to leave on his plate until last, despite our urging over two decades for him to experience the joy of multiple flavours on his fork at once.

I cry because Jamie will never again take my wife out to a posh restaurant – and tell me that I can come too, but only if I sit at a separate table.

I cry when I think of him reading the piece at his brother’s wedding, and how later at the reception his sister ‘over-indulged’ and retired early. And the next morning she asked Jamie if she’d missed anything. To which, as quick as a flash, he quipped, ‘Only a wedding!’

I cry because no longer will I introduce Richard as my elder son, but as my only son.

I cry because I will never again stand at the foot of Jamie’s hospital bed – whether he be awake or asleep – and with tears rolling down my face say to my gorgeous boy, ‘Love you Pudda; always have, always will’.

I cry because of the void. I cry because a massive slice of my life has vanished.

I cry because I miss my son enormously. And always will.

I want him back. I so want him back.

Please, God, don’t ever let me stop crying for Jamie.

Love you, Pudda; always did, always will.

***

It’s three months on, and I’m crying.

Robyn is right. I live another day with the pain, with the void. It’s like a shark has bitten a huge hole in me, but it’s not a limb it took, but my heart.

I’ve developed a new thing I do. I hold my hands out and in their air, like I’m lifting a basket full of clothes over a gate on the way to the clothes line. Except there’s no basket, just my hands outstretched in the air, like I’m saying, I don’t know; I don’t know what’s happened; I can’t explain it.

I’m at a loss.

Normally a person who would talk his head off, I have no words; nothing. The void.

I can’t believe Jamie is no longer here, anywhere; that he won’t appear.

Oh, how I miss him.

I cry in the shower, I cry at men’s group. I cry in the supermarket; I cry secretly inside and people don’t know it’s happening. They can be inches from my face talking to me and they don’t know that tears are streaming up and down, through, and all over my body while they speak to me, probably thinking I’m over it, over Jamie dying.

Someone who should have known a lot better said, ‘But it’s some weeks now’. As if I should be back to normal. I wanted to smash his stupid head in. ‘SO,’ I challenged him, but politely for fear of causing a scene. I left.

People search for a right way to speak. They say, with a downward inflection in their voices, ‘And how are you, (dear)?’ Of course they want me to thank them for their concern and to assure them things are getting better, that I’m coping. Keep everything nice.

So they will feel okay.

Well, things are not getting any fucking better, and I’m not fucking coping.

If you really want to know, I want to be dead and be with my Jamie in heaven.

Then there’s the guilt, guilt that I didn’t spend more time with him while I could, be with him more, especially during his hospital bouts, even though more than once he said, ‘Go home, you loser’.

He didn’t mean it. He only meant it.

Guilt. It overwhelms me when I think of all those daytime hours he spent alone in the house; when I could have snatched time from whatever unimportant thing I was doing to be with him, to be close.

What could possibly have been more important?

‘You did all you could,’ urge family, trying to stifle my guilt. The truth prevails. I could have done more. I tried to take him on drives, but he wouldn’t go. Just weeks before the end, I pleaded with him via email to let me take him yet again to his specialists, saying we wouldn’t leave their rooms this time until they gave us answer as to what was causing the headaches. But he wouldn’t go.

Then there’s his bedroom. I confess how in the past weeks I’ve not been able to help clear it. I just couldn’t go there. I couldn’t be in the room and look at the hundred and one things that would just crush me and bring on more rivers of tears.

I just couldn’t do it.

Like, I had to ask someone to push the buttons to delete his number from my phone and his email address from my Gmail. Of course, I didn’t want them gone, but having them pop up in the speed dialling, or when composing an email to someone with a J, was becoming intolerable.

Along as someone else pushed the delete keys for me.

I couldn’t do it.

As Robyn wrote so surely, there is little room in my brain for anything else. I’m just a pair of open hands outstretched in the air. Wherever I stare, I see Jamie’s face. Whatever I try to focus on, I’m stuck with the void.

A void that will never go away, God willing.

(PS. If you have children, of any age, please give them an extra hug. Today. If they’re not within hugging reach, phone or email them and tell them you love them. While you can. Please.)