Bath and bedtime
24 hours in London: 6 p.m.–8 p.m.
By Leia Smoudianis
Ian Cowderoy sits next to the stereo in his bedroom. He’s listening to his favourite album, the sound track from the children’s movie Princess and the Popstar.
“She’s my girlfriend,” says the 12-year-old, pointing to a movie character on the cover of the album. “She sings.”
Ian drums the air along to the beat of his favourite song, It’s My Everything, emphasizing the fast parts of the song with, “Oh yeah.”
While Ian jams in his room, his mother Rhonda and a support worker are taking care of his 16-year-old sister Katelynn. Every evening after dinner, Katelynn needs to be bathed and given her medication making it a hectic time of day for the Cowderoys. And for the fourth time today, her catheter needs to be changed.
Katelynn was diagnosed with cerebral palsy at birth. Ian was diagnosed with hydrocephalus, a buildup of fluid inside the skull that causes the brain to swell, while Cowderoy was still pregnant. Ian has since had 13 surgeries.
“The doctors told me there was zero per cent chance of survival. We’ve almost lost him a few times,” says Cowderoy, a single mother. “You don’t take any days for granted at all because you just don’t know. A simple cold can be enough to put them into the hospital.”
Courtesy of Rhonda Cowderoy Ian and Katelynn pose for a rare picture. Ian often has anxiety around cameras.
Cowderoy needs help taking care of both of her children, and government-funded support workers provide relief in the evenings when she is trying to get Ian and Katelynn ready for bed.
“Generally I choose nursing students because they are most interested in doing dressings, medical procedures, tube feeds and that kind of stuff, which is a lot of Katelynn’s day,” says Cowderoy.
This gives Cowderoy time to get Ian ready for bed too. While Ian can bathe himself, he still needs a bit of help.
“He has a great memory,” says Cowderoy. “But he needs someone to walk him through it.”
After Ian and Katelynn are bathed, it’s time for a snack and medications.
“It’s really routine here,” says Cowderoy. “It’s always like that.”
Cowderoy first got into this routine when her children were little. She says it’s what gets them through the day.
“The two of them really need the routine. I need it too in order to know what needs to be done right here, right now.”
Cowderoy’s routine is especially important for Ian, who is prone to having anxiety. It’s best for him to know what is coming up because he can prepare for it. This made her worried about telling her son about an upcoming dream trip to Alaska provided by the Sunshine Foundation of Canada.
“Normally if we were going somewhere, I wouldn’t have even said anything,” says Cowderoy.
“I think for him it will be good for the experience of the anticipation of something but I’m not sure how well it’s going to go when we get towards the date. I think it’s going to be very difficult for him waiting.”
Ian has wanted to go to Alaska for four years and first came up with the idea when the family received pamphlets advertising the state.
“There’s trains, horses, sled dogs and planes and boats,” says Ian.
Cowderoy is looking forward to the trip this summer but was hesitant at first.
“I kept thinking, ‘Is it the right thing to do?’ Katelynn got really sick when she was 13. She had a wish granted at 12 and she got really, really sick and we almost lost her at 13. But I thought, ‘Let’s put in for it and see,’ because you never know what’s coming around the corner.”
Katelynn won’t be able to go on the trip because of her medical requirements. She has to stay in Ontario where she’s close to a hospital that can meet her needs. Katelynn’s care is a time-consuming part of the Cowderoys’ day, and everyone pitches in.
“He’s a little brother who’s a big helper,” says Cowderoy. “Ian is very sensitive to other people’s needs.”
But the usual sibling rivalry is still there.
“It’s quite funny to watch because Katelynn is totally non-verbal, but there are times when she’ll just turn around and give him a back hand,” says Cowderoy.
Two years ago, through a combination of government funding, corporate donations and volunteers, the Cowderoy’s house was renovated to accommodate Katelynn’s physical disability. An elevator was put in and the downstairs was transformed into a bedroom and bathroom with all the necessary amenities. Before the renovation there wasn’t enough room to get Katelynn’s wheelchair around the corner from her bedroom to the bathroom.
“A phenomenal group of people came together and we had full renovations done in the house,” says Cowderoy. “It enables me to stay here, keeping them at home, and doing what I need to do in the house.”
When Katelynn takes the elevator back up to the main floor after her bath, Cowderoy reads to her children.
“We don’t have cable; we don’t have Internet; we don’t have any of that stuff,” says Cowderoy.
They read Ian’s favourite book, Dinotrux, before bedtime. If all goes well, Cowderoy makes sure Katelynn is in bed by 8 p.m. but keeps an audio monitor with her at all times. Every night, she has to run downstairs during “the witching hour” when Katelynn vomits or when she rolls over and knocks one of her tubes out. By 8:30 p.m. Ian is in bed too.
“You get one throwing up or one falls over. A lot of it is just go with the flow,” says Cowderoy.
“There are nights when I’m alone, it could be 10 o’clock before they get to bed. And you know what? The world is not going to stop spinning because we didn’t fit our little routine. But you’ve got to take whatever comes.”
When the children are in bed and Katelynn has received her final 11 p.m. medication, Cowderoy can relax until she has to start the routine again at 5:45 a.m.
“It’s a busy life. I wouldn’t trade it. They’re my kids, and I would do absolutely anything for them,” she says.
“But at the end of the day sometimes there is just not enough energy left for yourself.”