It was November in the year 1939 in Millburn, a northern regional town of New South Wales. Milburn was a delightful town with many beautiful trees, wide open spaces to run, jump, skip and play with the local children.
Baby Hope was due to be born in March 1940 to a family who lived in Milburn. It was freezing cold there in winter and boiling hot in summer. The town had amazing 1940 houses they were small, basic two-bedroom miner’s huts. If you were a manager, you lived in a large three-bedroom timber house and a worker with a basic job lived in a cute one- or two-bedroom home. The houses had granite open fireplaces to keep you warm in winter but in the hot summer there was no air conditioning to keep you cool, only a fan on the table.
Baby Hope was to be born into a family with one son, Benny. Her Dad Manny had served in the army and was now working for the Army Department in an office job. Manny was tall, quiet and slim build. He had blonde hair and dark skin with blue eyes a real diplomat. Manny worked really hard and was really funny. He was always joking around with everyone.
Mummy Betty had dark brown hair, fair skin and green eyes. She was short and very overcompensating. Betty, was very kind and caring and cooked, cleaned, washed and looked after her husband and son. Betty was so talkative she never stopped, always welcome you with a cuppa tea and biscuit.
Benny was four years old with brown hair, dark skin and brown eyes. He was a high achiever, serious puts himself first and sporty. He liked to play outdoors. He had good ball skills and was always kicking balls. He was looking forward to having a brother and starting big school in 1940.
Christmas 1939 was the family’s last Christmas together, just the three of them. Only a few more months before number four arrived. Betty was one of the many people who migrated to Australia from the UK and she liked to celebrate Christmas in her traditional way. That usually ate roast chicken and vegetables, dessert was plum pudding and custard, and Christmas cake for afternoon tea. In England, though, it was snowing and in Australia it was extremely hot, so it was not the best meal to have in Australia at Christmas time.
Soon, Christmas was over, and it was the holiday season.
Mother Betty, father Manny and son Benny were looking forward to the summer holidays. Nanny Maggie had a holiday house on the Sunshine Coast. Straight after Christmas they packed the car to meet up with their family on the coast for a week. It was a very long drive and took most of the day travelling.
The family arrived at dinnertime and were treated to a special meal of ham, turkey and salad; an Aussie favourite. Special pie and custard for dessert. The family enjoyed the week together – swimming, prawning and fishing in the beautiful cool lake. Unfortunately, they had no luck catching any fish or prawns.
Benny loved surfing, making sandcastles and relaxing at the beach. The week passed very quickly, and it wasn’t long before they were back at home in Millburn. A few weeks later it was Australia Day. Benny loved Australia Day. Time for fireworks, bonfires, barbecues and fun times with the neighbours.
Benny started school in February; he was so excited to go. He met many new friends and had fun playing with them. He was an only child and loved the fact that there were so many boys in his class. The boys played handball at recess and soccer at lunch. In class they learnt many new activities. Benny learned his ABCs and liked to read and sing new songs.
In March Benny enjoyed colouring eggs and decorating his Easter hat for the last day of school. Benny’s hat was bright blue with different coloured easter eggs on it. The Easter Parade was on and the parents came to watch. Soon it was Easter holidays and Benny was so excited waiting for a new baby brother to be born.
Betty told Benny there was going to be a surprise visit from Nanny Maggie. She was going to stay for a few weeks. Benny was excited, as he loved these visits. Benny helped clean and cook for Nanny’s arrival, and this time she was going to stay in his room.
The spare room was decorated for the new baby in lemon yellow. It had a wooden white cradle and a big green chair. A pretty picture of trees and the river. Betty let Benny know that she was going to hospital for a few days to collect the baby. The day after Nanny arrived, Betty already packed her bag and went to the hospital to collect the baby.
To everyone’s surprise, baby Hope was born soon after Betty arrived. The hospital called to let Nanny, Daddy and Benny know about baby Hope. She was only small for those days: five pounds, three ounces and 17 inches long. She had brown hair like Benny. So tidy, cute and cuddly.
Benny was expecting a baby brother. At first, he was sad, but Nanny explained that sisters could be great fun as well. It was Benny’s job to help look after the tiny baby when Nanny went home.
A few days later Betty and baby Hope arrived home. Baby Hope was placed in her bassinet in her room so she could sleep. She was so happy to meet daddy Manny, lovely Nanny and brother Benny. Benny had a cuddle with her, then Manny and Nanny. They could not get enough cuddles.
Benny was given a wooden train set to play with by baby Hope. It was not Benny’s birthday or Christmas and yet he was given a special gift! Benny thought he was so lucky.
Over time Benny and baby Hope grew closer and developed a special bond. Benny helped with the baby bathing and walks in the pram. Many birthdays, Easters and Christmases passed by and it was now 1942.
Baby Hope was sick. Betty took her to the local doctor. She had headaches, and she was irritable, lethargic and drowsy. The doctor thought it was teething at first. A week later baby Hope had a seizure and began vomiting.
Another trip to the doctor and then the hospital. It was clearly more serious and Millburn hospital advised that St Vincent’s Hospital in Sydney was the best place
for more tests. Before the appointment there were headaches, seizures, nausea, vomiting, irritability, lethargic and drowsiness. There was also a personality change.
St Vincent’s Hospital knew this was serious and marked the case extremely urgent. Tests revealed changes in her mental activities.
The paediatrician proved macrocephaly (enlarged head) in an infant. Baby Hope’s skull bones had not completely fused over and could cause death if not treated.
Next, a neurosurgeon and paediatric ophthalmologist was brought in to work with the family to develop the best plan. Then a paediatric and tumour specialist was contacted to work with the team. Baby Hope’s tumour was affecting her eyes and they discovered that she was blind. A radiation oncologist joined the team of advanced practitioners and still more tests were performed on Baby Hope to study her brain tumour.
All of the specialists needed to work together for an appropriate treatment plan for Baby Hope. There were no CT or MRI scans back then so the specialists did what they could to save her. The tumour was the most malignant (cancerous) type, called a glioblastoma multiforme grade 4. The tumour was growing rapidly and was causing pressure on her brain. After some research, the specialists learnt that only five people in the world had this tumour and only one had survived.
All of the specialists were keen to get involved to save Baby Hope and knew she needed a combination of treatments. The doctors decided to reduce the tumour by radiation therapy. Unfortunately, they did not have modern medical scanning equipment and she was given too much radiation. Even though it saved her life, she was still blind and sensitive to some fabrics. Her head remained oversized for a while and her deformity was obvious.
After Baby Hope’s ordeal and travelling back and forth to Sydney for check-ups, life settled down. She played with her brother Benny in Millburn and had lots of attention.
Now it was January 1945.
It was time for Hope go to school. Betty decided to hold Hope back a year so she could catch up with the other children her age. She sent her to preschool, but the other children could see, and Hope was all alone in her blindness. Betty needed to find a better plan going forward for Hope and looked at many options for blind children.
Unfortunately, there were not many choices back in the forties. Betty realised there was no school available in Queensland or in the northern suburbs of New South Wales. Only a school in Sydney. It was a boarding school for the blind. Hope could go to there during the week, spend the weekends with Nanny and come home for the school holidays.
Now it was January 1946.
Time to go to school. At first Hope was scared to leave her family and Millburn. She was only five years old, but they really had no choice.
Betty, Benny and Hope travelled to Sydney to meet Nanny. They all arrived at the blind school and were comforted by the fact that it was near Nanny’s house.
Hope was greeted by the teacher and then introduced her to other girls her age. One girl was called River and the other Summer. They were starting school that day as well.
Summer originally lived in Queensland and was blind. She was very confident and seemed older than her six years. Summer was shy, quiet and serious at first. She had blue eyes and blonde hair. An avid reader loved music and playing board games. She was the eldest in her family and had two brothers who could see.
River was an indigenous girl originally from Taree. She had brown curly hair and big brown beautiful eyes. River was always happy, grateful and loved lollies. Talkative with a great imagination and always in the moment. River was one of twelve children initially raised by her grandmother, mother and aunties and was handed over to officials by her mother as part of the stolen generation. River would be cared and educated by the officials as she was blind and very smart.
Hope made friends with the girls easily. Summer acted as the big sister, River the middle sister and Hope the baby sister. All were academic, confident and enjoyed being together. They sat together and slept in the same dormitory. They played together, learnt Braille together and read as a team. Summer, River and Hope all enjoyed scrabble, music and singing. The three girls spent many years together.
They shared all their problems and worked together as a team to solve them. All left the school on weekends to visit parents and grandparents except River. She had to stay back at school on weekends and school holidays. When River was twelve, Hope asked if she could come home with her one holiday. Benny had grown up and always seemed so busy and Hope missed River when they were apart.
The blind school gave permission for River to go to Nanny’s on weekends at first and later to go home with Hope on school holidays. They spent much of their teenage years together.
After school, it was time to go to work. Summer worked as a secretary/PA for Walton’s department store. River decided to study further. She later worked for the blind school as a teacher and afterwards at TAFE, teaching creative writing.
Hope worked for the Department of Health.
Thanks to the blind school in Sydney, all girls were great achievers. As the years passed the young women kept in touch by phone and occasionally visited each other.
Summer, River and Hope used a blind white walking stick to assist them to get around. They heard about guide dogs and all wanted one. It was hard be given a guide dog as it took years of training and there was no government funding. Ever hopeful, they put their name on the list. Guide dogs was their answer to freedom.
Many years passed. If only they could get a guide dog! River was the first one to receive one. The guide dog was black, and River chose it because she believed it was there just waiting for River to arrive. Most guide dogs are golden in colour only a few were black and so they were extra special just like River.
River and her guide dog Blacky completed all the training over the next few months. Then River took Blacky home and after years of being dependent on others, and not being able to go many places, River and Blacky could go together wherever she liked.
Hope was next to receive a call from the Guide Dog Association. Hope was introduced to Sunny, a golden Labrador. Hope loved the name Sunny, and he brought sunshine into Hope’s life. For the next two months she either trained at the Guide Dogs Association Centre to learn how to use buses and trains, and how to navigate shops and traffic. When they weren’t training, they stayed at Nanny’s house.
Hope was lucky because Puppy Pals NSW/ACT provided the funding for her to receive Sunny. Each guide dog cost $30,000 back then but now $50,000 and there’s never enough dogs for all the blind people in Australia to receive one.
After a few months Hope and Sunny went home. They caught the bus to work and back again. Hope continued to live with Betty and Manny for years, and they loved having her there. Benny was married with two children.
Hope and Sunny lived happily in Millburn with Betty and Manny, then they all moved further south to be closer to Nanny. Occasionally Sunny needed to go back for training without Hope, so Betty and Hope went overseas at those times. They loved warm destinations and went on a couple of trips. Life seemed to be normal for many years.
Hope worked, sang, read Braille books and lived a happy life. Later, Manny had a heart attack and passed away. Hope, Betty and Sunny lived together in their new home near Nanny. Then the following year, Nanny was rushed to hospital and passed away too.
As Betty was ageing, Hope helped to look after her. Eventually Betty become really sick and needed more care. So, she moved to a retirement home.
Sunny was due to retire as well, so he needed to go to the farm to live out his days.
Hope felt all alone. Betty asked if their retirement home would let her live there in another section. They agreed, so Hope moved in until Betty passed away.
When Betty passed, Hope found a little unit to buy in Millburn. She had her friends and family close to help her. She was nearly 60 years old.
Hope started having severe headaches. She went to a local doctor and he thought they would pass. But after a couple of weeks it was obvious it was more serious.
Hope was admitted into hospital for tests. It came back as polyps. They tried to remove them but soon realised that it was a tumour. The brain tumour from over 50 years prior, which had laid dormant, had returned.
Hope was admitted to RPA hospital this time for more tests. This was serious; it was an aggressive level four tumour. Her old records were referred to. At first, she was only given three months to live but thanks to the specialists and a new type of technology, they were able to operate. They were able to remove 90% of the tumour. It was a lot of back and forth to Sydney over the next six months and rounds of chemotherapy after surgery.
Hope made a full recovery again. Amazing! Hope and her doctors shared an incredible attitude not to give up, and she survived blindness, two brain tumours and a few other problems. Amazing is the human spirit.
After five years she became unwell again. After all the years of tests, operations and the ageing process, Hope was on borrowed time. She was 65 years old now. It was Hope’s time now to go to the retirement home to live out her days. She stayed with amazing nurses, doctors, and new friends until her passing.
Hope is like her name, the desire of a fulfillment to live a full life.
by Liz Shaw