Wednesday, September 5, 2018

'The biggest thing is just... the joy'

We're excited to share our new A Family Like Mine video! This one features Joanne Downing and her husband Mark, and their children Katherine, Matthew and Andrew.

Matthew, 18, known as Mattie, has cerebral palsy.

“The greatest thing about Matthew is that he’s such a happy guy all the time,” Mark says. “He really lives life in the moment, you know, as you often hear people say you should. He enjoys most aspects of his life. He doesn’t worry about things. He doesn’t fuss about the future…He brings your spirits up.”

Matthew, who uses a communication device, is in high school, and attends arts and music programs at Holland Bloorview several times a week. He loves woodworking in our Spiral Garden arts camp, and has a fabulous sense of humour. “I’d say probably the biggest thing is just …the joy,” says Matthew’s brother Andrew, when describing their relationship. “Every time I come home, he’s the first voice I hear, yelling my name.”

Joanne says finding places that Matthew can get into in his wheelchair has been a big challenge. She worries about what life will be like when he ages out of school. “I fear that Matthew’s life will not be as meaningful if he’s not continuing to learn, or he’ll be isolated,” she says. “It will be hard for him. It will be hard for us, to be honest.” Joanne says she’s proud of the work she does to educate other parents as a family leader at Holland Bloorview.

A Family Like Mine is a BLOOM video series about diverse families raising children with disabilities. It's used to educate students in the University of Toronto's medical school. Check out the playlist of eight videos.