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As soon as I arrived at the intensive-care ward, doctors started lots of medical tests. They attached me to machines to check my breathing and my heart rate. They poked and prodded my body to try to find out if all my internal organs were where they should be. Then they started trying to work out if I could see and hear, and if my brain was damaged.
One thing they rushed to discover was whether my deformities were blocking the flow of fluid that helps cushion the spine and brain. If that happened, my head would swell up like a balloon and I would die in a few days. There would be no way of fixing it.
Doctors at the hospital answered most of those questions quickly. There were no problems with my heart or lungs or other internal organs that they could see. All my mysteries were written on the outside of my body. Why did I have a massive tumor squished across my face? Why were my legs deformed? Would I be able to walk?
I was also the subject of a lot of questions people were asking my mother. Everyone wanted to know when she would come and see me. Every time she was asked if she wanted to leave the mothers’ ward to go see her baby in intensive care, her answer was the same: no.
“I wished he would go away or die or something,” Mom explained later, when she started writing some of her thoughts down.
Worse than that, Mom had decided she wanted to leave me in the hospital.
“I just wanted to be finished with it all,” she said. “I told the hospital staff I didn’t want my baby. I wouldn’t under any circumstances take it home.”
There were other normal kids at home to think about, after all—my brothers and sisters. Dad was at home looking after them. Michael was just four days away from turning ten when I was born, Gary was eight, Paula seven, and Catherine four.
Dad told them about me.
“The new baby is a boy,” he said. “But he has some health problems and may not live long.”
They asked what was wrong with me.
“He’s got problems with his face, and his legs are small and not properly formed,” Dad said.
“But he’s only a baby yet and they will grow,” Michael said.
“That’s not how it works, Michael,” Dad told him.
After I’d been in the intensive-care ward for about a week, one of the doctors visiting Mom sensed something different about the way she was feeling. The doctor asked my mother if she would finally like to see her baby.
Mom knew there was something terribly wrong with me. Until she saw me, though, the pain and grief only needed to exist in her mind. Her feelings were real enough, but with an unseen, distant cause. If she pretended I didn’t exist, maybe those bad feelings would just go away. But before she’d thought it through, Mom said yes, she’d go see me.
Together, she and the doctor walked to my ward. Mom slowed down as she got closer and closer, not knowing exactly what to expect. The doctors and my dad had described me to her, but she still hadn’t seen me with her own eyes. Not even a photograph. She walked into my ward and saw other normal-looking babies in their small cots. The doctor guided my mother over to where I was.
My mother looked down on me for the first time and saw the large tumor that had robbed her of a baby’s perfection. She saw my too widely spread eyes and my splayed nostrils. She saw my deformed legs and bent toes.
Mom looked at me again and decided she did not care about her son. About me.
“I didn’t feel anything for this baby,” she wrote in her diary. “I had shut off completely. I had made up my mind I was not taking him home.”
She packed her bags and left the hospital without me.
I had my first operation when I was five days old. Surgeon Leigh Atkinson operated to see what was behind the tumor that had caused so many problems with my face. Afterward he told my parents my brain seemed okay and I should have a normal life span.
Medical staff then began to tell Mom about advances in surgical procedures.
“There’s so much more that can be done these days,” a nurse told her.
“We can do a lot to help fix Robert,” another surgeon said.
They were not the words a mother who had just given birth wanted to hear. Mom began phoning anyone she thought might help her refuse to take me. She called her member of parliament and then her local doctor. The doctor’s advice was very clear.
“Put him into a home,” the doctor said. “You have four other children and it’s just not worth it.”
She asked whether he could make that sort of judgment without having even seen me.
“Yes,” he said. “No doubt he would be better off in a home. Don’t even consider bringing him home. Just forget him.”
My father figured Mom should be the one to decide, since she’d be looking after me most of the time.
“You’ll have my full support, whatever decision you make,” Dad said.
The hospital made an appointment for Mom to meet with a social worker and discuss the situation. Mom didn’t show up. I remained in the hospital, unwanted and unloved.
Mom started to visit more often, but she was still terribly unhappy and couldn’t bring herself to take me home. One day, after a visit, she cried and told her sister in a moment of desperation and honesty, “He is so ugly.”
Mom kept asking other people what she should do. No one gave her an answer. They all said the same thing: it was her decision and they would support her whatever she did.
Over the next few weeks, she realized she had to approach the situation more rationally. She had to think the issues through, address them, and then decide. It was a decision that would affect the whole family, every aspect of their lives, for a very long time.
Finally, Dad and Mom agreed they should explain to my brothers and sisters exactly what was wrong with me and give everyone a chance to have their say.
One Saturday morning my parents sat down with their four older children and had a family discussion. They explained the situation, describing what I looked like and what was wrong with my legs. They talked for a long time and when they finished the whole family was crying. Then came the big question.
Mom pointed at my eldest brother, Michael, and asked, “Should we bring Robert home?”
Michael paused, silent for a few seconds while everyone watched and waited.
“Yes,” he said.
“And you?” Mom asked, and pointed at Gary.
“Yes,” Gary said.
Then came Paula. “Yes,” she said.
Finally, Mom pointed at Catherine.
“Should we bring Robert home?” Mom asked.
Catherine paused.
“Yes,” Catherine said, but she was only four years old and mostly thought she should say “yes” because that’s what everyone else had said first.
A few days after that, the whole family came to visit me in the hospital and my brothers and sisters each had a turn holding me. Not one of them changed their mind about bringing me home. There was concern and curiosity on their young faces, but all of it was for me, not for themselves.
My sister Paula doesn’t remember the way I looked being a major issue for my siblings when I first came home. “You were a baby and it was just the way you were,” she said.
Mom started to understand that she had been focusing on what other people might think of her new baby.
“My worry and my concern were more a matter of pride than anything else,” Mom said.
She started thinking about how she might have reacted if my problems were on the inside rather than the outside.
“If Robert had serious medical problems within, I would never have hesitated to accept him, but because he looked different I found it so terribly hard,” she said later.
Mom realized it wouldn’t be the last tough decision she would have to make about my future. It was not going to be easy. She knew it would mean battles for her and for me, but she had made up her mind.
It was August 28, 1972—a month and five days after I had been born. I was finally going home.