Looking on the bright side of medical disorders

How does a family cope when they find out their child has been born with a medical disorder?

The Mazurkewich family was faced with this challenge when their daughter Kinley, now six, was born with Down syndrome.

“It was a surprise, and it took my breath away, then we felt absolutely every emotion possible,” said Janna Mazurkewich, Kinley’s mom. “We were overjoyed at having a little girl but were also worried about what the future held.”

In addition to being born with Down syndrome, Kinley was born with a hole in her heart, which required her to undergo open heart surgery on her first birthday. To cope with the overwhelming trials they were facing at that time, the Mazurkewich’s took advice offered to them by another mom who was experiencing a similar journey with her child at the time.

Mazurkewich said the woman told them to not look more than two years ahead of themselves in order to “help contain the uncertainty of life.”She said it was that uncertainty that helped her and her husband cherish life more.Janna Mazurkewich said that her daughter has taught her and her family about appreciating the small things in life.

Photo by Sydney Karg 

“The first year was all about Down syndrome, and now it’s all about Kinley,” Mazurkewich said. “Kinley comes first and we don’t really think about the Down syndrome–it’s just who she is.

“It’s about making sure she has every opportunity to enjoy life now, and when she’s an adult.”

Looking ahead

Despite that outlook, Mazurkewich acknowledged that anything unexpected still requires adjustments. Like most parents, they want Kinley to have every opportunity available.

Corrine Grieve, information co-ordinator of the Canadian Down Syndrome Society, said the treatment of those with Down syndrome has come a long way.

“It is important to remember that 20 years ago people were institutionalized, but now there is so much more acceptance, which leads to many opportunities for people with Down syndrome,” she said. “This acceptance and equal treatment is essential.”

The importance of acceptance

Mazurkewich said that Kinley being accepted by her peers is something they sometimes worry about, but their worries are also eased by the actions of those in her life.

“It is the genuine thoughtfulness, helpfulness and friendship of the other children who played with Kinley in playgroups, at playschool and now in Grade 1, that continue to reassure me regarding her acceptance in the community,” she said.

Many people who work with individuals who have Down syndrome stress the important role that inclusion plays in their development.

Barbara Tien is the founder and executive director of the PREP Program, which offers a variety of
services to kids with Down syndrome with the intent of helping them become contributing members of society. PREP stands for pride, respect, empowerment, and progress.

“Over the years I’ve gone from being wishy-washy or sitting on the fence about inclusion, to being a 150-per cent, full-blown advocate for inclusion,” Tien said. “I truly see the benefits of all the children being included together in the regular classroom.”

An environment for thriving

Kinley is enrolled in speech therapy sessions at the PREP Program, and Mazurkewich said that the sessions are allowing her to reach her full potential.

“Kinley needs to experience the life lessons that other children do in school and the community as she learns so much from every situation,” she said.

By enrolling Kinley in speech therapy sessions at the PREP Program, Mazurkewich said her daughter is being given the opportunity to reach her full potential.

Photo by Sydney karg“If you expect less, you will get less. Experiential learning and high expectations now will help prepare her for a fulfilled, happy life in the future with more opportunities to learn from.”

Mazurkewich said that having Kinley enrolled in these sessions in a community setting has been beneficial not only to her, but to her entire family as well.

“We’ve been able to experience life through the eyes of families who live with a child with a disability and to see that it’s not necessarily a negative thing,” Mazurkewich said. “It’s opened our eyes to what life is really meant to be.”

Seeing things differently

Mazurkewich said having Kinley as a daughter has changed her overall life perspective.

“She’s brought a sense that possibilities are endless and(given me) an appreciation for moments,” she said. She’s encouraged us to slow down and appreciate those moments and taught us that we shouldn’t take things for granted.”

Mazurkewich said raising Kinley has been a much more positive experience than she and her husband anticipated. She said it has caused them to pay closer attention to detail in certain aspects of life and has encouraged them to be more conscious of the attitudes with which they parent.

“Kinley has pushed me to think about how it’s important to celebrate the little successes the same as the big successes,” she said. “It’s not about achieving; it’s a matter of the perseverance and the process of getting there that we celebrate instead of the actual achievement.

“She has brought amazing opportunities to our family and that was something that never crossed our minds when she was born.”

skarg@cjournal.ca