The club

by Irena Sprey

 

“Join the club,” said a voice from behind as I was lamenting to another bleary-eyed parent about a sleepless night. We were in the tea room of the Oncology ward of Westmead Children’s Hospital.

“How is the child supposed to get better if he is woken up every two hours to be poked and prodded with a bright light in his face? I am sure that’s against the Geneva Convention,” I protested further. No one responded. 

It was our second night in the ward. The rules of the club have not sunk in yet. This is a place for children with life-threatening illnesses; cancers, organ failures and other whimsical tricks of Mother Nature. Doctors are gods not to be questioned, lest they toss a coin and it falls the wrong way. It is a place where distressed parents are constantly bombarded with statistics. If we do one procedure there is a 50% chance of survival, if we do another, its 30%.

How can people who start out wanting to heal others reduce a human life to a bunch of numbers? To an engineer like me, any human safety statistic less than 90% makes no sense. Imagine if engineers walked around telling people that their house had a 50% chance of not falling on their heads. Ridiculous!

The ward is brightly decorated, toys and books abound. The nurses wear permanent, though not quite real, smiles. Clowns visit frequently, but end up terrifying more children than they entertain. There is a constant activity and a sense of busyness for which I am grateful, anything to distract the mind from the agonising wait for doctors, test results, news, good or otherwise.

For us, parents, this isn’t just another world. This is hell.

No parenting book or glossy baby magazine can adequately prepare you for the blow to your psyche. No amount of daily news depicting carnage somewhere in the Middle East and wailing mothers in Central Africa can either. These things happen to other people, the mind keeps insisting.

The question ‘WHERE HAVE I GONE WRONG?’ seems to appear in large capital letters everywhere I rest my eyes. I blink furiously to make it go away.

We are here because my son TJ’s kidneys have failed. His disease is rare; there is no known cure. He is the unlucky one in the 100,000. I rack my brain, desperately looking for what may have caused this calamity. There is no family history, he had a natural birth, was breast fed till he was two, raised at home, fed organic food, showered with as much love as we could muster. I’ve read all the new-age child-rearing literature; I’ve listened to all the experts. God damn it, I thought I’ve done everything right!

A few weeks before this, I was in a vastly different club, the Sydney North Shore mothers’ club, where much of the time talk never strayed far from pedicures, good coffee and what the decorator was doing. The rules were unwritten but somehow intuitively complied with; dress your kids in designer labels, wear a mask of a confident, relaxed, in-control mother and never mention how tough things really are; it makes others uncomfortable.

I loathed these gatherings as I had nothing in common with these mothers, apart from the fact that we had children at the same time. But for my boy, I, at least, wanted to appear normal, sociable, in-control. Who was I kidding?

In the Oncology ward the masks are well and truly off.

There is no friendly chatter between the mothers, no false smiles, no pretence. We shuffle up and down the corridor day and night, in a sleep-deprived daze, eyes downcast, starring into a hundredth cup of foul hospital tea. We seem to be walking an emotional tightrope which oscillates between the agony of love for the sick child, that feeling of hopelessness in being unable to make things better, and the rage at the unfairness of it all, a perfect family life shattered.

It’s hard to fight back the rage. The mind is fickle. If you stop loving, the pain will stop, it insists. It must be a self-protection mechanism, I reason, to keep me functioning.

Sometimes this rage boils over and some parents completely lose the plot, scream at the sick child, at each other and, in the worst cases, simply walk out and don’t return.

On the fifth day, TJ is sitting up playing video games. He has pulled through, though he is not cured and will relapse. My sense of joy at this change of fortune is overwhelming. My gratitude has no bounds. I hug the nurses. Momentarily I am blind to the suffering around me. Is this what winning a lottery feels like?

We walk out of the ward the next day, hoping never to return. I wow for the umpteenth time to be a better mother, to hold him tighter, to find a cure for this disease even if it takes the rest of my life. But, as we are leavin­g, I meet the eyes of the mothers who must remain.

 

© Irena Sprey