As regular readers of Work ‘n’ Care will know, this year has been my ‘annus horribilis’ - nursing my beloved son through cancer which ravaged his young body, ultimately taking his life on June 25, four days short of his 25th birthday.

Twenty five years of intense caring. Twenty five years of immeasurable joys and heartbreaking sorrows. Twenty five years of doing my very best in a situation that called for the super-human wisdom, endurance, strength, insight, compassion and love that I longed to have but which so often eluded me in the exhaustion and tunnel vision that is sometimes a carer’s life.

I wanted to be the best mum in the world for my children. I wanted them to know they were loved and respected for who they were - regardless of their abilities or their limitations. I wanted them to be happy, healthy and fulfilled - to have a full and interesting life and to have every opportunity to be the very best they could be. It was a simple dream - just like the one most mums and dads have. I didn’t think it would be too hard to achieve with enough love, common sense and vision. I could never have imagined how hard that simple dream would become.

When Joel was born with multiple disabilities, the very core of my being was challenged. It seemed the wheels fell off my very comfortable life and suddenly it was careering out of control. I thought I knew my rough destination and how I’d get there. I had a plan. Hah!

In those early days, I read a story written by another mum who had a disabled child, about how when you are pregnant you start out thinking you are going to, say, Rome, and you read all the guide books, you learn Italian and get excited about the coming trip ... and then you have a child who is different and you realise that you are not in Rome, but, let’s say, you have arrived in Madrid - and they are all eating paella, dancing Flamenco and speaking Spanish and you realise after a while that hey, Madrid is not so bad after all, even if you weren’t initially planning on going there. Madrid is fun and good - just different to where you thought you were heading.

But for me it wasn’t like that at all. I would have been happy to be in Madrid - a place of equal value and opportunity, but, like so many parents who have a child with profound disabilities, I found myself in a foreign universe - not just a foreign city.

And in this foreign universe life was a constant struggle, often a constant battle, to be seen and heard, to get any kind of help or assistance from any kind of government agency, or generally, even from family.

What I remember is years of fighting, begging, pleading, to get any services be they early intervention, respite care, home care, speech pathology,  physiotherapy, occupational therapy ... you name the help you needed and you can bet that it was a monumental struggle to get it. Mostly I just gave up and somehow learned to manage on my own.

I fought through the Human Rights and Equal Opportunity Commission for three years to win the right for my son to go to his local mainstream school, rather than be segregated in the ‘special’ school the experts thought was so right for him, where he could sit on a beanbag in the corner and watch TV and do finger-painting with the other kids who weren’t good enough or valued enough to be allowed into a regular classroom.  

We won that battle but it cost me my career and put tremendous strain on family relationships. My job for the next six years was going to high school every single day with my son as his teacher’s aide - because they could not find anyone else who could take on the role. It was a far cry from the high-flying career position I had built for myself as a talented journalist working for a major Sydney metropolitan newspaper.

After Joel finished his Higher School Certificate I needed to try and recoup the years of financial loss so I went back to my passion for writing and got a job back in the media. But being a working carer in a high-pressured job where long hours and tight deadlines are part and parcel of every single day took its toll on my health and enthusiasm for life.

School had presented one set of obstacles to overcome but for Joel and I, leaving school and making that transition to community life, was yet another chapter of struggle for services to help him build a meaningful and valued life, embedded in the fabric of his local community and not living a life on the periphery of society.

There were funding submissions and appeals and visits to members of parliament and letters and assessments and more letters and phone calls and more assessments and yet more appeals. I did not know from one three-month period to the next whether funding would be renewed so that I could continue working. It was unbelievably stressful and financially costly.

But through it all what sustained me was my love for my son, my passionate belief that it was his birthright to have the happiest, most normal life possible, with the same opportunities and challenges that he would have enjoyed had he not been born with disabilities.

Our relationship was one of ease and friendship. The unconditional love Joel showed to me throughout his life was my strength and saviour in many, many, dark hours. We had fun together and had almost telepathic communication. There was hardly a day in 25 years that we didn’t spend together or talk to one another. I truly learnt the meaning of unconditional love through my relationship with my son.

Now he is gone I am struggling with conflicting feelings - the sadness that I was not able to save his life and the incredulity and distress that modern medicine was not able to take away his physical pain during the last stages of his disease, are tempered with gladness that his suffering is over and that in spirit he is whole and happy and able to live the life he wants to live - whatever his dreams and aspirations they can be fulfilled in the spirit world.

There is the guilt (yet almost also relief) that I am now, for almost the first time in a quarter of a century, free to do as I please - go out, sleep in, have guests, work late, take a holiday. This freedom is utterly new to me and with each new thing I do for myself, I feel a twinge of regret and remorse that Joel is not there to share it with me.

I walk around the house, reminded of Joel at every turn - his fleecy-lined blue corduroy jacket that I have taken to wearing on chilly nights, his books on roller-coasters that we would read, planning out next theme park trip together, his paintings of bush tracks - the journey was always important to Joel. There is still his favourite ice-cream in the freezer. I can’t bear to either eat it or throw it out. The cat still sleeps on his bed, in the shadow of Joel’s ashes, now resting on the bookshelf. The music, the DVDs, the clothes in the cupboard. The wheelchairs, the medicines, the photographs. They all fill my life with memories of my precious son and yet my life often feels empty without him, even knowing he lives on in spirit and is but a thought away.

My other beautiful child has grown up and lives an independent life far away. There is little contact and I feel her loss the more keenly since her brother’s passing, as I love her dearly and miss her so much. Something at the core of my being very much needs to be a loving, involved mother and it is painful to have lost the two most precious beings in my life. I have loved them both so profoundly, and mothering and caring have been the primary focus of my life for so long, it is hard to know just what I want to do with my life now that no-one needs me to be their mum anymore.

So in-between working, I am using this period as a time of reflection, trying to nurture myself more, seeking spiritual truth and knowledge and defining who I am and what more I need to learn before I, too, can take that ultimate journey back home.

I will finish by sharing this tribute I wrote for Joel and read at his funeral ceremony.

By Zoe Satherley

For Joel

For nine months we talked and laughed, sang and slept together. We breathed together. Our hearts beat together. This new life, so precious, so longed for, so anticipated, filled my every moment with happiness.

When he emerged, after an exhausting struggle, purple-red and wrinkled, I knew what love was. My heart leapt in my chest as if it would burst through my skin at the instant recognition of this divine spirit, now cradled in my arms.

I knew him as I knew myself. I felt a profound joy at being reunited with a spirit that seemed such an integral part of my very being. This sense of total completion, of inner peace, filled a yearning I didn’t know I had; it brought a happiness I didn’t know was missing. He washed me with a love that filled my soul and made me whole and joyful. I often wondered if we were twin souls because Joel was as much a part of me as I was of myself.

And every day of our life together I have been blessed with that sustaining, nourishing, nurturing love which has never waned but shone ever more brightly. And now as I say goodbye to my beloved son, I can tell you that his spirit lives in me still.

He is in the air that I breathe, in the light that falls on my eyes; in the shiver of the wind and the song of the sea. He is in the warmth of the sun that falls on my skin, in the shimmer of the moonlight, in the glow of the stars.

There will never be any part of my life where I am not reminded of the great and wonderful spirit that was my beloved son, my Joel.

I have been blessed beyond measure to have had this angel in my life for nearly 25 years. Death cannot separate those who love each other and Joel’s immaculate spirit lives on not only in my heart but also in the hearts of all those he loved and those who loved him and whose lives he touched.

See you soon, my beautiful young man. Yay Joel. Yay Yay Joel. Forever Young