BEATING THE ODDS I FEATURE
Couple is an inspiration to others with cerebral palsy.
THE TODDLER TRIPS as she runs across the room to grab her toy. Crying, she climbs onto her father’s lap for comfort. “What’s the problem, honey?” asks Steven Hendry as he wraps his arms around his daughter, McKayla. “There is nothing better in the world than this,” Hendry tells a visitor as he hugs his two-year-old daughter. “She is such a special gift.” Born to parents who both have cerebral palsy, she is indeed a special gift. Both Steven and his wife, Tanya, were born several months prematurely. Steven weighed two pounds, 15 ounces and Tanya was smaller at one pound, 12 ounces.
Both sets of parents were told their newborns might not survive the night. And when they were diagnosed as toddlers with cerebral palsy, doctors said they would probably never walk. Today, the Kitchener couple not only walk, but they also drive, have jobs, own a house, are married and are raising a child. And they are volunteers at KidsAbility, an organization that once helped them. Asked if they see themselves as people with physical challenges, Steven answers promptly: “Not at all. The opposite.” “I even forget we have CP,” adds Tanya. Steven, who turns 42 in July, is philo- sophical about the way their lives have unfolded. “We believe that everybody has an opportunity to get the best out of life. It is the driving force for us,” he says.
Cerebral palsy is not hereditary. It is caused by an injury to parts of the brain that control muscles and occurs during pregnancy or childbirth. About half of all children with cerebral palsy are born prematurely. Children are usually diagnosed in the first few years of life as they are slow to reach milestones such as sitting or crawling. There is no cure, and most children with the condition live a normal life span. Tanya, 35, is more mobile than her husband. She walks without any mobility aids and works part time assisting a worker who provides respite care for families with disabled children. McKayla accompanies her to work. Steven, who has a business diploma from Conestoga College and works at a Kitchener call centre, walks with forearm crutches. At the time of the interview, he was using a walker as he recovers from a fall in February 2013. He broke his leg when he slipped on black ice on his driveway. The broken leg resulted in surgery, followed by a month in hospital and several more weeks recovering at home before he returned to work last August.
McKayla was just nine months at the time of her father’s fall, and Tanya says family helped with her care. Both sets of McKayla’s grandparents live in Waterloo Region and help the couple when needed.
For a long time, Steven’s friends wanted him to meet Tanya, and Tanya’s friends told her about Steven. The two sets of friends thought the pair would hit it off.
Eventually, in 2000, a mutual friend >>
>> arranged for the two to meet at a karaoke bar. At that first meeting, Steven recalls they talked for hours, finding they had a lot in common. Both say it was love at first sight.
A week later, they went on their first date, and in September 2003, they married. A large wedding photograph of the couple adorns their living room wall.
McKayla’s birth in 2012 added a joyous new dimension to that picture.
The couple had tried to have a child for several years, but with no success. Eventually, they turned to a fertility clinic, and McKayla was conceived by in vitro fertilization.
Steven says their doula – a labour coach – helped him work through any concerns about child care related to his mobility. For example, the doula helped them develop a system in which Steven used a stroller to carry McKayla from their van to their bungalow. He would also use the stroller to move the baby around within their home, reducing the need to lift her.
“I think we have done really, really well. We have always had a good understanding of each other’s strengths and weaknesses,” Steven says.
“We took a lot of steps as soon as possible to make sure we would be good parents.”
Linda Hendry, Steven’s mother, says McKayla seems to have a “built-in sense of her parents’ limitations” and because of that, does a lot more for herself than some children her age.
For instance, McKayla instinctively learned at an early age to lift her legs up over the crib’s bar to help her father when he puts her to bed. Steven sits in a chair by the side of the crib to assist in the lifting process.
McKayla also fetches the telephone for her parents when it rings, and she is starting to learn to climb into her car seat by herself.
Steven says because of his mobility issues, he plays differently with his daughter than his wife.
While mother and daughter have a more rough-and-tumble type of play, Steven says he engages in more gentle activities such as singing songs or watching videos. And when the family goes for a walk or to the park, McKayla stays beside her mother, but will wait for her father, who walks slower, to catch up to them. She is also very responsive to their directions.
“I am hoping that by the time she hits six or seven she will have an understanding that her parents are the way they are,” Steven says.
Both Steven and Tanya credit their own parents for their success.
Instead of dwelling on the negative aspects of cerebral palsy, they say their parents did everything possible to help ensure they led full lives.
John Hendry, Steven’s father, has written a book, Never Say Never, about his and his wife’s journey with Steven, the youngest of their three sons.
Despite his challenges, John Hendry says his son was “always so positive” and determined. He says Steven never wanted a “free pass” in life.
“He was probably the most positive influence in my life,” says John, a local public school board trustee.
John says any initial concerns he had about Steven and Tanya’s ability to care for a baby quickly vanished when he watched the pair interact with their daughter.
“They are truly amazing parents. They have done a great job,” John says.
“They have their own home and are raising a child. I have no worries about them at all,” he says.
Tanya’s mother, Lynda Petrozzi, says she and her husband, James, encouraged Tanya to learn to do things that other children do, such as dress herself, clean her room and cook meals.
“We really pushed her,” Lynda Petrozzi says. “Her disability was never allowed to be an excuse.”
Tanya participated in synchronized swimming and downhill skiing and took piano lessons. She also worked part time at the two Kitchener M&M Meat Shop stores owned by her parents.
The result, Petrozzi says, is her daughter is a very independent woman who can run a household and raise a child.
“I am really proud of Tanya and Steven.
They are wonderful parents and great people. “They are a very special couple. They are very dynamic and they complement each other.” As children, both Steven and Tanya attended KidsAbility, a Waterloo-based centre that helps children with physical and developmental challenges reach their full potential. At the centre, they attended junior kindergarten classes and participated in physiotherapy and occupational therapy. These days the pair are giving back to the centre that helped them so much by volunteering as mentors to youth attending the facility. “These kids have the same dreams as able-bodied people, but with their obstacles in front of them, they tend to lose their motivation,” Steven says. “We want to motivate them to see their dreams can come true.” Stephen Swatridge, who headed KidsAbility for 27 years until his retirement last year, says when he joined the agency – then called the Rotary Centre – in the mid1980s, the vast majority of children they served had physical disabilities such as cerebral palsy and spina bifida. Today, less than 20 per cent of the 5,500 children they see annually have physical challenges, with autism becoming the most common disability. Swatridge, who knew both Steven and Tanya since they were children attending the centre, says the pair are “shining stars” and are an inspiration to both children with disabilities and their parents. “They are a prime example of a young couple who have overcome challenges to create a pretty normal everyday life,” he says.
“They have a house. They have a job and they have a family,” he says. “These are things that a young person with a disability may think they may never have.” But the Hendrys are proof that it is possible, Swatridge says.
“They are a success story.”