A loving goodbye

When Carl Skye Jr. was born it was a surprise to everybody.

His mother, the late Carleen Johnson, had no idea she was having twins, and she also didn’t know that one of those twins, Carl, would be born with Down Syndrome, a condition that would result in mental and physical developmental delays.

“I was always very protective of him,” said Carla Skye, Carl’s twin.

From the moment Carl was born, he was surrounded by family that would commit to caring for him for his whole life - despite the doctor advising Johnson to leave him at the hospital.

“They said, ‘Place him right away. He’ll never walk, he’ll never talk, he’ll die young,’ but my mother absolutely refused,” said another of Carl’s sisters, Lisa Skye. “They wanted her to just take the girl baby home and place the boy baby in an institution. He lived long because he had all the love and support that anybody could ever ask for.”

As he grew older and bigger, there were challenges. Carl was often frustrated when those around him couldn’t understand what he wanted, sometimes lashing out physically.

Thankfully, he spent time at a placement in Dorval as well as at Peter Hall School, where he received specialized care that helped him communicate with his family and community.

“He learned to do a lot of things there, to be independent, he was a fast learner when he had time one-on-one,” said Kathy, another of Carl’s sisters.

Carla, Lisa, and Kathy, along with their other sister Jodie, played a huge role in Carl’s care, especially after the passing of their mother 11 years ago.

At the time, Carl moved into the Kateri Memorial Hospital Centre (KMHC). What was initially a short-term placement became a permanent living situation.

“When she was on her deathbed, our mother was so worried about what was going to happen to him, and we all reassured her, ‘Ma, don’t worry, he’s going to be fine, we’re going to take care of him,’” Lisa said, adding that her mother was especially afraid of her son being sent to an inpatient facility outside of the community.

“I promised we would never, ever place him anywhere, and that she didn’t need to worry, so we let her go knowing that.”

Carl became loved by everyone at KMHC, including by Roseann Rice, who first started working with him in her capacity as a paramedic around five years ago, and later in the physiotherapy department.

“He was my little sidekick. Everywhere I went, he was there,” she said.

Carl connected more with Rice when he noticed that she could catch on to what he was signing - a skill she knows since her mother is hearing impaired. Even though Carl was non-verbal, Rice said that there’s no doubt he could communicate.

“He knew whether or not you were in a bad mood, and he would always try and make you happier. There were days when we were both in a bad mood, and he would just want to hold you,” she said.

Everyone, from the nurses that physically cared for Carl to the laundry workers who would bring him an extra slice of cake (his favourite food), considered him a part of the family.

“They’d all get a hug and a kiss from him, they’d sing a song to him, and he’d stand there and clap his hands and dance, and then they’d continue their jobs. People from all different departments,” Lisa said. “Once you built that rapport with him, you were his, and he let you into his world.”

Though Carl had wonderful support at KMHC throughout the past 11 years, his sisters say that his story is evidence of a gap that is in dire need of being filled.

“He had a very, very good life here, but there are lots of special needs kids who are not here,” Lisa said. “I would say there’s probably between 20 and 50 young people on the outside right now in group homes.”

While there are programs that provide support for special needs individuals and their families, Carl’s sisters say that what town really needs is a long-term care facility, where Kahnawa’kehró:non with special needs can get the care they need in the community.

“We were lucky because we had the hospital. The hospital wasn’t really the place for him, but it was the only place in Kahnawake for him,” Lisa said.

“He should have been placed in a home in Kahnawake where we could visit every day, where he’d be living with his peers, instead of at Kateri with people who are 40 or 50 years older than him.”

Carl’s sisters want to thank all the KMHC staff and beyond who supported their brother throughout the years. In particular, they want to acknowledge caregivers Jessica Thomas and Curtis Roach.

“For seven days they didn’t leave our side. They did 24/7 at the hospital and 24/7 at the funeral home with us,” Carla said. A third caregiver, Juan Niera, also rushed to Carl’s bedside in the final hours, as family and friends shared memories of Carl’s life throughout the years.

“It was very comforting with their presence.”

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