Big, Good, Strong Hands

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Big, Good, Strong Hands - The Nothing Moment

The Nothing Moment

 

"They look like big, good, strong hands don't they?" asked The Rockbiter. He's the immense, powerful creature from The Neverending Story who's diet consists of limestone and other rocks of vintage bouquet.

He's speaking despairingly to the story's hero, Atreyu, about his failure to protect his friends. "I couldn't hold onto them. The Nothing pulled them right out of my hands."

This scene was to play itself over many times in my head in the years following Jaden's birth. The complete helplessness captured in Rockbiter's voice reflected my own feelings of anguish. When Jaden was only a few weeks old, I'd held him as he took his first serious seizure, his face turning a horrible colour of blue, I'd sensed the spirit leaving his body.

Resuscitation proved useless as my breaths met with resistance. I later found out that during a seizure the larynx can close off preventing any intake of air or expression of sound. Thankfully, almost as soon as it had begun the seizure dissipated and his colour returned rapidly as oxygen flooded his lungs. However, it was an event that was to repeat itself during the early years.

Seizure. Ambulance. Hospital.

Just like Rockbiter, I felt powerless. I thought these were big strong hands, too. We men like to be able to fix things; use the drill on the gate to fix the latch or drain the oil from the sump to service the engine. I came to the realisation with Jaden's chromosomal diagnosis of 1p36 deletion syndrome, that this wasn't something I could fix. It was impossible to fathom that something so infinitesimally small as a sequence of missing genes could cause great problems such as global delay, low muscle tone and epilepsy. It was heart breaking and I felt totally disarmed. It was my Nothing moment.

All the while there was a latent furnace of rage simmering away inside me, fuelled by frustration, anger and heartache. Beneath the harsh beams of the fluorescent hospital lights self blame began to set in. I sought reasons in myself for why this had happened to him.

Night time is the worst in hospital. The monotony is only broken by the chuckling nurses down the corridor, their heightened tittering laughter pulls me up from sleep and into a state of drowsy wakefulness. Occasionally, a chopper pulses through the night air above, delivering another sick child to Westmead Children's emergency in Sydney.

Inside our ward of six, the tube feeding machines sound all night and premmie babies struggle for air, their little underdeveloped lungs working to capacity. Their wet gasping sounds haunt me still.

A strong sense of isolation takes hold. The world seems to have moved on. Friends and family get on with their lives, have children of their own. They don't understand your situation, they don't really know what to say or how to help. Their hospital visits become less frequent and trail away as the years roll on. We become the spacecraft explorer Voyager 2 out beyond the solar system, only occasionally receiving transmissions, to see if we're still there.

Friendships tend to gravitate toward other parents of sick kids, as we share a common theme. We're all in this together but there is only so much we can do to help each other. You find yourself increasingly in the company of strangers; nurses, doctors and care workers.

It does take a special friend or family member to commit to caring for the carer. I must thank Jaden's paternal Grandmother who would make the 80 km journey down from Gosford on the New South Wales Central Coast to Sydney to spend several days in the hospital with us, keeping vigil over Jaden while we worked or slept.

In The Neverending Story the Rockbiter's fatalism becomes infectious. The story's hero, Atreyu begins to blame himself and succumbs to self-doubt. The Nothing is really just that, though. It's a vanishing of self belief and a growing sense of failure. If you sit there long enough, it will take you away too.

I often hear people remark I don't know how you do it. Now, I'm no hero, there's millions of us carers out here. I don't really have much of a daily plan beyond lift, feed and change. In this, I like to reflect on one of my favourite authors, Terry Pratchett, who wrote, Things just happen, one after another.

Care becomes first nature. Spiritually, Jaden has become an extension of my own body. That's not to say he doesn't have his own individuality and own personality. What I mean by that is, the things I need to do for myself, need to be repeated for Jaden. When I feel hungry, I also know Jaden will be hungry. When it's time to clean my teeth, I need to make sure his teeth receive attention. I guess you kind of step up from there; things just happen, one after another.

Jaden has taught me to be humble and patient. I've learnt to slow down and enjoy the ride. I now focus on the things he can do rather what he can't. Improvise, adapt and overcome. This is the line spoken by Sergeant Gunny Highway, played by Clint Eastwood, in the movie Heartbreak Ridge, when his platoon begins to complain that things have become too difficult.

There are a growing number of services listed at this website under the Counselling section in our Resource Directory. I don't have all the answers but my best advice on this is that you have to go in ready to talk. There is little benefit going into a session and being a head-nodder.

Keep yourself healthy, fit and well. It's not easy to keep up your swimming program, gym, golf or whatever it is you do. (Perhaps a punching bag may be a good investment). It requires a bit more organisation than before and you're bound to have your schedule interrupted with hospital appointments and the like. The trick is to re-start the activity. Don't just slump like Rockbiter.

You'll find you do have strong hands but the true strength to them is through your mind.

Atreyu and RockbiterAtreyu and Rockbiter Scene From Neverending Story

Terry Pratchett Books

Website for Terry Pratchett



NASA Voyager MissionWebsite for NASA's Voyager Mission

 Heartbreak Ridge

The Heartbreak Ridge Scene (Warning: Strong Language)



 A List of Counselling Services

 Counselling



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