TRENTON – Twelve-year-old Kylie MacKenzie gets her hockey gear out of the family van and heads into the rink.
She grabs a seat on the bench inside the dressing room and begins getting undressed while chatting and laughing with the other girls on her Pictou County Subway Selects PeeWee A team.
As she goes about her routine, removing an insulin pump attached to her body, putting it in a safe place, and continues about her business.
It’s goes unnoticed by her teammates. They might have glanced her way the first day they were together, but now her routine is as common as their warm-up drills.
Sure, she has to check her blood before, during and after a game and she might have to eat a snack between periods to help regulate her sugars, but the girls know she will be out on her next shift, charging to the net looking for a goal on the opposing team.
Living with Type 1 diabetes has been challenging for the Trenton girl and her family, but Kylie likes to keep things simple and not dwell on the negative.
“Just keep track of what you eat and don’t lose count,” she said. “And don’t make such a big deal out of it. Just go along for the day.”
Good advice from a 12-year-old, but her mother Tanya said there were a few bumps in the road to get them to this point.
Kylie was first diagnosed when she was three years old after having a difficult time getting over the flu.
“It was Christmas time and we had all caught the flu, but she didn’t get over it,” said Tanya. “I took her to the doctor and she was told to drink lots because we thought it was just the flu, but then she started drinking a lot and showing signs of having diabetes. My husband and I looked at each other and we said, ‘she has it.’”
Since Kylie’s father, Robert, was diagnosed with diabetes when he was 18, the family thought they had a pretty good idea of what they were in for.
Type 1 diabetes is an autoimmune disease in which the pancreas stops producing insulin, a hormone that is essential for food to be converted to energy. Living with T1D requires keeping a tight balance between insulin, food and exercise every day.
“I thought I knew diabetes, but with a child it is totally different,” Tanya said. “Everyone has an aunt or grandmother with diabetes, but that aunt or grandmother isn’t running around. They are not jumping on a trampoline for a half an hour. It’s hard to regulate children because of their activity.”
Because of this unpredictability the MacKenzies have gotten very good at mental math. Tanya said she is constantly adding up what Kylie eats in the run of day, paying close attention to her carbohydrate intake.
Luckily, she said, Kylie has adapted well to having juvenile diabetes.
“When she was first diagnosed, she was quite happy to be like daddy,” Tanya said. “She got up in the morning and got out the meter and checked her blood like her father. She was on five needles a day at first and they were very difficult to give, but I remember one day, when I was having a hard time, she looked at me and said, ‘Don’t worry mommy, I’ll get used to it.’ That’s all she knows now.”
Kylie received her first insulin pump when she was five and it allows her to sleep a little bit longer and eat a little bit off-schedule, but it’s not a cure.
Instead, it’s the old fashioned, hands-on planning and organizing that makes the biggest difference in Kylie’s life.
“I had to teach her everything I know,” she said. “I tell people that it’s similar to having a child with the flu because you are constantly thinking about how much she had to drink, eat or when she took her medication last. It’s like having a child with the flu every day, but at the same time you try to make it as normal for her as possible.”
Tanya said keeping life normal for a child with juvenile diabetes is one of the biggest struggles that parents face.
“It’s hard to let go,” she said. “I have to work hard on that, but I can’t hold her back.”
Tanya said the best course is to not only teach her everything she knows, but also teach those around her in case something happens.
“There are still some things I say no to,” she said, “but I feel I did more of this when she was younger. If there were dances, birthday parties or class trips, I would be the one going to keep an eye on her. It is fear because things can happen quick.”
She said most people realize that exceptions need to be made for her and, similar to her hockey team, it becomes the norm in many settings.
“She might eat a snack in class when other people are working or when she joined the cross country team she had to run with a juice box. It was very hard to let her run through the woods by herself.”
Tanya said they always carry juice in case of emergencies because it is a fast way to restore sugars when they run low.
Kylie also carries a small bag with her at all times with her meter, juice and snacks. There have been times when Kylie’s numbers have gotten low and she needed medical attention, but for the most part, Tanya says her daughter is living an active life.
“She does cross country, soccer and hockey and she will go all the time. It’s a lot of activity, but it’s great and I am glad she does it.”
On Sunday, Kylie will be meeting up with her Subway Selects teammates again at the Pictou County Wellness Centre, but they will be wearing running shoes instead of skates.
Kylie’s Selects will be participating in the JDFR Walk to Cure Diabetes along with other members of the community.
“When the team told me they wanted to do this, I had tears in my eyes,” Tanya said. “It’s a busy schedule for everybody and they are going to stop what they are doing and support her in a disease that we deal with every day. That means a lot to us.”
Diabetes walk an annual event
The Walk to Cure Diabetes is an annual event started by Crystal Murray of Pictou who has a son with Type 1 Diabetes and is supported by many area families and community members hoping that ongoing research will lead to improved treatment, prevention and a cure.
The event has been held in Pictou in the past, but this year it was moved to the Pictou County Wellness Centre. It includes a walk by family and friends as well as five and 10 km fun runs.
Registration for the walk and runs begins at 8 a.m. at the Wellness Centre. The route will be between the centre and the Pioneer Coal athletic track. Fun run kits will be provided to the first 100 people registered.
Pictou County events have the distinction of having been the most successful small city walks in Canada for the past few years. The top fundraiser receives the Green Sneaker Award: a mounted green high-top sneaker donated by country singer George Canyon who was diagnosed with Type 1 diabetes as a teenager.