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Judie's Story - Page Two

Jackson was in hospital for 6 months. He soldiered 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 didn’t 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.

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