STORY BEHIND THE STORY: TORONTO.COM Reporter Andrew Palamarchuk reached out to a family with a medically fragile child to find out how they are dealing with the challenges created by the coronavirus pandemic.
The Tolenskys are used to physical distancing and self-isolating.
They’re usually home for much of the cold and flu season.
That’s because Jessica “Jess” Tolensky was born with intestinal failure due to short bowel syndrome. The four-year-old with flaming red hair spent her first five and a half months at SickKids hospital. She has a central line, through which she’s hooked up to an IV 13 hours per day, and any fever lands her in hospital for at least 48 hours.
“We actually started self-isolating a few days before everybody else because we saw things taking a turn for the worst,” Jessica’s mother, Heather, said of the early days of the coronavirus pandemic. “We’re instructed to be more cautious with her (Jessica).”
Jessica’s last hospital admission, in mid-March, was made more difficult because of the pandemic.
“It was only one parent per child,” Heather said. “There was no one to come play with Jess so I could grab a coffee.”
During those difficult days, the family was given a “lifeline” thanks to a North York-based organization that dropped off food at the Tolensky home (for Jessica’s sister, Hailey, and their father, Daniel) as well as toys for Jessica and Hailey. The group, Chai Lifeline Canada, has been by the family’s side throughout Jessica’s journey.
The organization provides support to families with children dealing with serious illness and has been combating social isolation during the pandemic.
Hailey, 9, said the organization recently came by with “fun arts and crafts and toys” for her and her sister.
“That was cool. I got an art set and Jess got a little play set,” she said. “My Chai Lifeline big sister and a whole bunch of the other big sisters and kids, … we’ll do a Zoom call and play games. We did Bingo and Pictionary, and we’re going to play Bingo again. It’s really fun.”
Hailey said it’s important to “still be able to see people,” even if it’s not in person but through online programs.
The Tolenskys have been strict about physical distancing during the pandemic to protect Jessica. “My kids don’t leave the house other than to go in the backyard or on our porch,” Heather said. “There’s no going for family walks, there’s no going for family drives.”
Heather said the game nights and interactive cooking sessions that Chai Lifeline offers “breaks up the day a bit.”
She suggested that physical distancing due to the pandemic has given the public “a little glimpse” into the lives of families with medically fragile children.
“Every cold and flu season, pretty much, we’re home for a few months,” she said, adding “it’s not just a one-time thing for us.”
Chai Lifeline Canada regional director Mordechai Rothman said the organization has put most of its programs and services online to conform with physical distancing directives.
In early April, the charity launched its “toy tank” initiative that delivers games, crafts and toys to children experiencing isolation as a result of physical distancing.
“We’ve created a community case manager (position) to connect and reach out to people in the community who need help applying for government subsidies, understanding how to help their children throughout the day,” Rothman said. “We recognize there’s a real need particularly right now for the general population, because I don’t even think that people realize how this is affecting the mental health of their children and themselves. Everybody thinks, ‘Oh, you’re just staying home and it’s not such a big deal.’ But I think that there are some ramifications to all of this and it is affecting people and it’s going to affect more people.”
Rothman said physical distancing has been particularly hard on young people and stressed that parents should ensure their children follow a formal schedule where “they get up at a certain time, they’re not staying in pyjamas” and have opportunities for physical activity and social interaction with friends through online playdates.
“Human beings are social beings, we’re designed that way, so (physical distancing) is extremely challenging,” he said.