When Robbie was born in 1974 his immediate future was not very bright due to his Gross Hydrocephalus (fluid on the brain). He was deemed inoperable and his cranial fluid build-up resulted in his head growing a staggering 2 cm per day. He needed special nursing care and the experts gave him a very short life span and advised that he would be in a vegetative state. However, Robbie was a survivor and proved the experts wrong. He thrived. 

He remained in nursing home care for 4 years and won everyone over with his cheeky outgoing personality and spunk, surprising us all with some of the milestones he reached despite his large heavy head.

When Robbie was 4yrs old, thanks to a technological breakthrough and a top neurosurgeon, he had a series of long arduous operations including 6 cranial reductions, where at one stage we were close to losing him. Miraculously he came through and came home for good at Christmas 1978. By then we also had a 2yr old daughter Clare – so we were a family at last.

The next stage of our life involved intense therapy sessions and behaviour management programs. Living in the outside world was quite challenging. However, despite some irreparable brain damage and due to his determined nature, he eventually learned to walk (although wobbly), talk, read and write and even play the piano. He has a unique ability to be given a date and then mentally calculating the day of the week it falls on, even though he has no idea what today is. It never fails to impress as a ‘party trick’.

Robbie walked and was partly independent for the next 15 years. His name even went on a Government. waiting list for accommodation which he was really looking forward to – his own home.

Not long after our 3rd child, Joshua, was born in 1992, Robbie had a series of shunt blockages which had devastating effects on him.

He is now wheelchair bound, totally blind, has lost a lot of his speech, has no use of his right arm and his seizures have deteriorated. He had to leave his workshop environment with the Spastic Centre because he was no longer productive. (He attends Minimbah Challenge Inc). He is now totally dependant. We do everything for him: all his personal hygiene, dressing, feeding, organizing every aspect of his life etc. He will continue to physically deteriorate.

Sadly he still believes he will have his own “home” one day, like his sister who now lives in Melbourne. I just can’t bring myself to break the truth to him. How can I tell him it will never happen because that list just disappeared and the Government just doesn’t care about him? How can I prepare him for the day when his Dad and I aren’t able to look after him anymore and he will be passed from respite home to respite home (if he is lucky), with no stable carers or housemates and he will have absolutely no voice or choice of his own?

God, that reality is unbearable to think about!

In his early years we had hope. Now there is growing despair and time is running out. We both have chronic back problems and are getting very tired. There is no relief staff to fill in when we are sick. My husband Dick is now on the aged pension and I am on a part carer’s pension. Because we have always had to be on hand caring for Robbie we have not been able to prepare financially for his future.

Now we are begging the Government to provide accommodation to meet Robbie’s needs, but their silence is callously loud. I am beginning to feel we are being punished for caring for someone with a disability. I suppose we could have left Robbie in the nursing home back in 1978, but even if I knew then what I do now, I would still take the same path.

When Robbie was at preschool, another Mum gave him a poster which said “Determination wins in the end.” Maybe Robbie still has one more milestone to reach – his own accommodation. We vow to do everything we can to help him achieve that.