Kylie saved me

How a daughter helped her father find himself: A family Christmas

The Newton family: Brenda and Ian

The Newton family: Brenda and Ian

by Angelika Dawson

Communications Manager

Communitas Supportive Care Society

Moms and dads are different.

That’s not news but it is reality and one that is, perhaps, amplified when you are the parent of a child with complex health care needs. What is clear is that all moms and dads love their children, they have good days and bad days and they experience challenges and celebrate joys.

Ian Newton’s eyes brim with tears as he recalls the day his world fell apart. It started as a trip to a specialist with his wife Brenda and their baby girl, Kylie, to see if she had hearing loss. In all of 45 minutes, their day turned into one of “would nots”. Kylie would not walk. Kylie would not talk. Kylie would not develop intellectually. Kylie would not develop like a normal child.

“I’ll never forget that day,” Ian said. “We were devastated.”

That initial visit turned into years of testing, trying to find an accurate diagnosis for their daughter. At the end of it all, Kylie is still without a concrete diagnosis and is simply described as living with Global Developmental Delay. And while Kylie is beginning to prove the doctors wrong – she is learning to walk – she lives with many complex health care issues: she uses a wheelchair, she is tube fed and she is non-verbal. They are working on toilet-training her but she is still diapered. It is no surprise that these challenges have meant a roller-coaster of emotions for Ian and Brenda.

“You never accept it but you do come to terms with it,” Ian says.

The hardest part for him as a dad was letting go of the dreams that he had for himself and his daughter – like walking her down the aisle at her wedding, something the Kylie will very likely not experience. But while Ian and Brenda continue to live with and adapt to the extreme challenges that their daughter faces each day, Ian is clear that Kylie has made an enormous difference in his life. In fact, Ian says, Kylie saved him.

Ian had always had a desire to teach and explored this career option after university. Instead, he chose to pursue a career in aeronautical engineering because the money was better. He landed a job that paid well but he wasn’t very happy. The job was highly stressful, unfulfilling and required him to travel a lot. He realized that his son Sam was growing up without him. Then Kylie was born.

“Kylie came a long and demanded a change,” Ian says, smiling.

The stresses at work and at home were proving to be too much for him. He remembers calling Brenda one Thursday afternoon, in complete despair, telling her that he just couldn’t do it anymore. Brenda encouraged him to pursue his original dream.

“She said ‘why don’t you look into teaching again’,” Ian said. “Brenda’s encouragement and Kylie’s needs changed our lives overnight.”

Their conversation motivated him to contact SFU and UFV and by the end of that afternoon, Ian was enrolled in classes for the following Monday and he walked away from his job. He received some criticism and there were some lean years while Ian was a student and they lived on Brenda’s salary. But it’s a decision he’s never regretted.

“Being a teacher is the best thing for me. I’m passionate about what I’m doing. I love my students,” he says and he credits it all to Kylie. “It’s not about the money any more. Kylie makes you stop and think about what you’ve got. She helped me find me. And it’s this self-realization that helps me connect with students and staff in a deep, meaningful way.”

Ian went on to get his master’s degree and currently teaches physics at Rick Hansen Secondary School in Abbotsford and will enter into district administration one day. He’s found that the one thing he loves most about teaching is also the thing he loves most about being a dad: watching kids discover. He beams as he talks about his son, Sam, who has an inquisitive mind and is constantly challenging himself to learn new things, whether it’s playing the saxophone or learning to speak French. He is proud of the way Sam and Kylie are growing and changing. The challenges of parenting and teaching are also similar.

“It’s hard to know when to push and when to jump in and help,” he says. “When do you let go and let your child discover for themselves?”

What he is sure of, is that his experience of being a dad to Sam and Kylie is a rich one, despite the depth of the challenges that he and Brenda face as parents of a child with complex health care needs. It has also deepened his love and respect for Brenda, to whom he has been married for 18 years.

“I know that we can survive anything,” he says. “My deepest wish for Brenda would be to see her really happy. She takes on so much herself. I’m so glad we have Matthew’s House here now. It gives us the space we need, just to have peace of mind so that we can rest.”

Ian is one of three fathers who are connected to Matthew’s House – a respite home in Abbotsford for families with children who have complex health care needs. Each dad has shared his unique story about parenting a child with complex health care needs. To read these compelling stories from Ryan Thom and Doug Froese, visit mattshouse.ca

Matthew’s House is a home away from home dedicated to caring for children who live with complex healthcare needs. Matthew’s House is facilitated by Communitas Supportive Care Society. Learn more at mattshouse.ca