Courage Project: 'Accept things as they are'

A father, who we’ll call Bruce, contacted us about sharing his story in our Courage Project series. To protect his child, we have changed some identifying details.

Bruce and his wife were shocked when their firstborn child, a son, was born blue, resuscitated and transferred to a different hospital.

A breathing issue was later diagnosed as a heart problem, then other life-threatening conditions emerged. During the first few weeks a doctor from genetics came by and, without explaining why, began measuring the boy’s eyes, ears and face. Later it was announced that their son was deaf and had global developmental delay.

“After he was born my wife said ’He’s not my child,’ and those words have resonated with me every day since,” Bruce says. “She just couldn’t accept a son who was different from a regular baby. I tried to convince her that it was workable, that she would accept him over time, but she never did.”

Bruce worked long hours and travelled often. He arranged for caregivers to support his wife almost 24 hours a day and, when he was home, did most of his son’s hands-on care.

When his son was eight, Bruce was diagnosed with cancer. After an operation he began to spend most days at home. “That’s when I first began to suspect something. My wife was out most of the time and often a caregiver was left looking after him. When my wife was home, I’d hear screaming. I’d run into the living room and she’d be holding a slipper up and ready to hit our son because he’d wet his pants or was not cooperating with her attempts to dress him. He had some deep bruises on his legs, but she said he’d fallen. She stopped putting his splints on because she said he didn’t like them. She was supposed to be going to my son’s school to volunteer for the day, and then I found out that she popped in and left right away. I later learned she’d found another boyfriend.”

When Bruce confronted his wife he says she threatened to kill him and their son. “I went to the police and they arrested her. It took a hell of a lot of courage to make that decision. I was crying in the police station thinking about how she had abandoned both of us. How was I going to cope alone with my son’s needs?”

Bruce retired from full-time work to spend more time with his son and “the two of us get along fantastic together.”

His son lives with him but has one overnight a week with his mother. “When my son comes home from school, I’m there, and I work with him. I’m amazed at the progress he’s made these last few years.”

Bruce says a number of things gave him courage during this period. “My son is my courage. In his 12 years he’s been through a lot more than I ever could imagine. All the operations, all the blood tests, all the conditions he’s trying to beat, the prodding and the probing. I get courage from him.”

When his son was first hospitalized as an infant, it was a cleaning lady on the hospital unit “who gave me courage,” he says. “We were two months into this new world and more issues had been found. ’Don’t worry,’ she said. ’I’ve seen people go through this before, and you’ll become accustomed to it as time goes on. You’re not alone.’ She told me to focus on one thing at a time, that I can’t face the whole problem at once.”

Bruce says it’s important for parents to work on acceptance. “You have to accept the fact that your child is who he is and love him for who he is and not for what you want him to be. You can’t keep looking for answers. Once you accept things as they are, you realize there’s a new path open to you. For example, after working with my son’s teachers at age 11, he no longer needed diapers. My son's hands may be twisted with arthritis, but he can hold a pen properly and  wrote his name for the first time at age 12. I have lots of examples of how  consistent hard work and good teacher-parent communications have made small, positive improvements in my son’s life.”

Bruce says a support system is also essential. He has two close friends that he can call on if he needs a short break from his son.

The other key support in Bruce’s life was a social worker he saw at a children’s rehab centre. “She listened to me, and she helped me get through it. It was important that it was someone who understood our situation of having a child with additional needs.”

Part of accepting his son’s special needs involves being grateful, he says. “Coming to Holland Bloorview and SickKids I’m often struck by how wonderful it is that my son doesn’t have more severe disabilities or illnesses.”