I'd like to tell you a story, a story which has been a journey for me; at times a very painful and dark journey and at times a very exciting and exhilarating ride. The journey has led me to believe with all my heart that all we need to succeed, to overcome, and to shine in our caring endeavours, is attitude.
Let me tell you how I have discovered that attitude is altitude, and how my loving and working with this philosophy has enhanced my life. It has enriched my life and helped me to cope with the challenges beyond my expectations.
This story really started five and a half years ago. I was financially secure, having spent 30 years as an investor, then as a life agent and financial planner with Lend Lease. I was 49, living alone with my children grown, married and settled. I was reasonably satisfied with my life and achievements. My child-raising responsibilities were largely behind me.
Then my whole world changed. November 27, 1993, dawned like any other warm Sydney day. But, at 9 a.m., my daughter, Sonya, and her husband, Michael, came to tell me that my eldest daughter, Amanda, had been killed in a car accident. Amanda, her husband, Jay, and their three preschool aged children, were driving north for their annual holiday. Eighty kilometres north of Sydney their journey ended.
We collected ourselves and drove to the hospital. Whilst we were travelling, Jay, my son-in-law died. We learned at the hospital that five-year-old Matthew and three-year-old David had wandered on to the highway from their stricken car. However, their three-month-old brother, Jackson, was thrown 10 metres from the car; his tiny distressed cries alerting rescuers of his very existence.
We soon discovered that Jackson had suffered serious head and spinal injuries. The doctor told us he would certainly die and really we should let him go and be with his parents. Only a miracle could save him. I said to this treating doctor, You look after the medical and I'll look after the miracle. I didn't know how, but I prayed, I prayed and I prayed.
Six months later, two hospitals followed, with five brain surgeries, a hip operation and in time physiotherapy and occupational therapy. We moved very slowly. I learned to understand that Jackson would heal in his time, not in mine. I spoke to Jackson's doctor and he said to me, I don't know how he'll wake up or if he ever will, so I wrote in Jackson's little diary, I will, I will, I will be well. I bathed him daily, tickled his little feet. He would cough but he never cried. Those months at the hospital passed in a fog. There were many very supportive people. I also learned that there are some people who will try to steal your dream, and others who actively endorse it. You need to be able to sort out the special people with whom you want to align yourself and take care to avoid the foxy folks who pretend to assist but really have another agenda. Jackson and I were keeping our dream.
Our Governor General, Sir William Deane, said, Carers must not be driven to depression and despair. One in three carers find their family relationships are very strained. He spoke with great sensitivity and encouragement about the invisible army of half a million carers in Australia. Our population is 18 million.
The next five months we all worked very hard through ups and downs. I didnt falter in my commitment to Jackson. Sadly, we buried my closest friend from childhood who succumbed to cancer. Elaine and I had shared great friendship through our childhood, the caring of her dear mother and more recently Jackson. When she was unwell she came to the hospital to be with Jackson and her tender, loving hands, and pure heart were very much a part of his healing process. I wondered how I would manage without my finest friend, her wonderful friendship and commitment to Jackson.
Late in December 1993 Jackson's doctor advised that 75 per cent of his brain was fluid and it has no working function. So, our first task was to diligently teach Jackson how to suck. We always concentrate on his abilities, never on his inabilities. It was the Christmas of 1993 when I brought Jackson home on a four-day pass and we spent Christmas in his old family home. I slept beside him on the floor as we said our goodbyes to the life that had been stolen from Jackson and his brothers.
My positive attitude to life has helped me to focus on Jackson's hidden abilities and celebration! On Friday, May 13 1994, Jackson came home. We have moved very slowly from strength to strength. Originally, Jackson was deaf, blind and a quadriplegic. When he came home we needed to modify our residence to consider access, correct bathing procedures, standing frames, crawlers, special chairs, car seats, etc. I soon discovered our family home was obsolete.
Initially, when Jackson came home I spent the first three years looking after him 24 hours a day with some assistance from professional carers 30 hours a week and one weekend a month. Then, on Friday 1 November 1996, I was unable to continue providing the 24-hour on-call care that Jackson needed. I sustained a back injury and suffered from absolute exhaustion. Since then, I have recovered and Jackson now has personal attendants.
The rehabilitation is slow. Jackson's home based medical and rehabilitation program provides him with the opportunity for recovery and, of course, his professional carers and myself are always at hand to provide his daily program. We keep daily notes of his achievements, closely watch his medical condition, and encourage a positive personal attitude. Jackson requires assistance with most activities, turning and adjusting, many times through the night. Jackson requires a standing frame, a walker, and a wheelchair. He has high physical support needs at all times.
Jackson's hearing has fully returned. Gradually, the baby they said would not live became a loving, good-natured little boy, with a cute sense of humour. He loves playing pirates, enjoys a tumble on the floor. Not everyone believes the enormous amount of time and effort put into communication, play and rehabilitation is worth the effort. For me, my focus and belief is: I see Jackson healed, complete, and lacking in nothing.
I don't know where I read this but it is a saying that gives me great strength:
'Failure will never overtake me if my determination to succeed is strong enough.'
And according to the great philosopher, Benedetto Croce:
'True happiness is to be won by learning to love with such elevation of spirit as to attain the power to stand up to grief...surpass the old love with an even greater new love.'
As we lead our life we all make our decisions of what we will do in our personal and professional worlds - we need to assume responsibility for the decisions we make. Blaming others for our misfortune is not the way. It is not really what happens to us in our life, it is how we handle it that makes the difference. Each day I awake and tell myself, 'If you think you can, you can. If you think you can't, you're right.'
Thank you Calvin Coolidge for this:
'Nothing in the world can take the place of persistence. Talent will not. Nothing is more common than unsuccessful men with talent. Genius will not. Unrewarded genius is almost a proverb. Education alone will not. The world is full of educated derelicts. Persistence and determination alone are omnipotent.'
With this attitude under our belts we moved forward. Today, Jackson is almost five years old. He has understanding of conversation and is commencing to make his appropriate replies. He makes choices. He now walks in his specially designed walker. In fact, Jackson thinks he's superman! He laughs on train rides and curls up on plane rides, a very happy little chappie.
I have business associations with Lend Lease. We have spoken about balance within our Lend Lease philosophy. It is important that we balance family, spiritual, business, health and relaxation, and also take the time to contemplate who we are, where we have been and where we are going. It is great to plan and to have dreams but they are ahead of us. Where we are today is what really matters. We have the promise of this moment, the knowledge of the past and the great ability to change the future.
Perhaps in all our lives there is someone we may help, someone to whom we could reach out to and make a difference in their lives. Yes, carers do this every day and again I applaud all our carers in Australia.
The things that we have learned from our past experience enriches the fabric of our lives. When I look back at that 49-year-old woman, I see I wasn't free at all. Now with Jackson, I am immeasurably freer. I am fulfilled, comfortable and happy with me. I have a direction, choices, a heightened awareness and a heightened life. An attitude that won't quit! An attitude to life that makes every day a joy and every tiny achievement a milestone to cherish, and every hurdle just another challenge that I will overcome.
Jackson and his brothers, Matthew and David, love each other dearly. They holiday together and I encourage the three of them just to enjoy the pleasures of good times together as three little brothers, all with the opportunity of individually attaining their personal best.
Joan Hughes, the Executive Director of New South Wales Carers' Association, has met with me and offered much needed support and information. It is important that each of us have someone in our special circle of support that understands our chosen direction and challenges. Please embrace someone who can help you.
Let's make the impossible possible.
Let's have attitude to increase altitude.
Let's take the tough decisions and make them work.
Judie Stephens ~ June 1999