It’s a statistic that causes pause. According to the Canadian Institute for Health Information, one in 100 children in the country have some form of medical complexity.
It might be the need to use a mobility device — such as a wheelchair or walker — the reliance on breathing supports, cerebral palsy or muscular dystrophy, or even developmental or medical issues you cannot see.
“Our goal is to have these kids belong in our community, just like you and I belong in our community,” said Susan Bisaillon, CEO, Safehaven. Founded more than 35 years ago, Safehaven offers respite, residential and transitional care, both from hospital to home and from childhood into adulthood.
With six locations across the GTA, it serves almost 200 families every year, helping to fill a support gap that exists in the health care system. Safehaven’s residential and respite care programs provide round-the-clock care, 365 days a year, to a wide range of young people living with medical complexities.
“You and I can go anywhere we want in this city, and we feel that our kids should have that same access and have the ability to be part of an inclusive society,” said Bisaillon. “It should not matter what your ability is, or your background.”
It is this belief, that its clients should lead full and meaningful lives not defined by their complex care needs, that is the inspiration behind Safehaven’s release of its new book One in 100. The illustrated book features well-known Toronto landmarks and streetscapes — like the St. Lawrence Market, ROM and Toronto City Hall — full of people. Readers are then asked to find the child hidden in the crowd who has a complex medical issue, depicted in a wheelchair or standing chair.
“It’s really, ‘Can you find me? Can you see me?’ We are really trying to provide a visual for people to increase their awareness that our kids are out there, are in the community,” Bisaillon said. The goal of the storybook, she said, is also to raise funds for the organization and awareness of its impact on the community.
One person who understands the important work Safehaven does is Kaila and her one-year-old son, Hunter. He was born three months early, weighing only 890 grams. His lungs were underdeveloped and he needed to be intubated to increase his oxygen levels. When he still wasn’t able to breath on his own, he underwent a tracheotomy so he could have a ventilator attached.
“Hunter was in the NICU for 310 days, and we knew, probably four or five months before he was discharged from the hospital, that his care was going to have to be 24-hours a day and eyes-on him at all times,” said Kaila. “As a single mother, that was not something I would be able to provide for him. I had to give up my home and community supports in order to get Hunter the care he needs, which has been very challenging.
She was introduced to Safehaven by the hospital that was caring for Hunter. The organization was able to provide the medical care Hunter needs, but in a home-like environment where the family could also feel part of the community and not like they were living in an institutional environment.
“The way that Safehaven works is it provides me with the opportunity to be with him as much as I want to be, as much as I can be. And if I can’t be, I know he is well taken care of and I don’t need to worry about him,” Kaila said.
“I honestly don’t know what life would be like for us if Safehaven wasn’t there. There would be a lot of unknowns. Because we did not have to go down those other roads, I am not sure where exactly he would have ended up. I am very grateful.”
She said the One in 100 storybook is important because it showcases the work that Safehaven does and also raises awareness about how common it can be to have a child who has medical complexities.
“When I was going through all this, I felt very alone, like I was the only person that had a baby who I couldn’t bring home on my own,” she said.
That, said Bisaillon, is why it is important to increase the awareness of the work Safehaven does and educate, through the illustrated pages of One in 100, how common it can be for a child to have a developmental or medical condition.
“We are trying to give a voice that speaks to the burdens and pressures that families face when they have a child with a medical complexity,” she said. “This book points to the fact that we are here, we are out there, but people don’t always see us.”
One in 100 is available for purchase at Another Story Bookshop, beginning today for a limited time. To learn more about Safehaven and support its work please visit safehaven.to.