Before delivering the bad news to his children, Matt Brown had to think hard about how to tell them he had a newly diagnosed disease that was progressing quickly, had no cure and would ultimately kill him.
Brown started having muscle twitches in his upper arms in the fall of 2019. On March 4, 2022, he and his wife Catherine learned he had ALS, or amyotrophic lateral sclerosis, which destroys nerve cells in the brain and spinal cord and eventually leads to paralysis.
That "awful day" ended with the couple telling 12-year-old Colin and 15-year-old Jayson that their dad had a terminal illness. The diagnosis was confirmed after three months of unsuccessful intravenous immunoglobulin treatment, which involves administering antibodies directly into a patient's bloodstream from plasma donated by thousands of blood donors.
"When we sat down to talk to them on that Friday night, I don't think they really knew what the gravity of ALS was," Brown said from London, Ont. "We kept it very simple."
Catherine Brown said she'd written a script to help the couple stick to their message.
"We were really scared," she said.
"We did say that ALS eventually attacks all the muscles in the body, including the lungs. And if your lungs don't work you can't breathe anymore. We did allude to all these things but when you're young and you're being told heavy stuff that might not sink in right away."
Experts say that while some well-meaning parents keep their serious or terminal illness a secret, kids should be told the truth in an age-appropriate way because even very young children are likely aware that something is not right and they could invent scenarios that are far worse than the reality.
Superstar Celine Dion, who announced in 2022 that she has a rare neurological condition called stiff person syndrome, has said in recent interviews that "panic buttons" are installed in her home in case of an emergency and that her twin boys, now 13, practise what to do if she needs help after a sudden full-body spasm. The unflinching portrayal of her illness in the new documentary 'I Am: Celine Dion" has prompted discussions about how families should discuss health crises.
Before a neurologist confirmed 55-year-old Brown's illness, he and his wife hired a counsellor who specializes in grief and "change-of-life diagnoses" because they wanted to be prepared for the worst outcome and share it with their kids, he said.
While their older son asked questions, the younger one was mostly silent and showed little emotion, he added.
"Then Cathy alone sat down with the boys and basically told them that this is a terminal disease: 'Your father's going to die of this. There's no cure.'"
Everyone in the family had individual counselling as well as joint sessions, and the boys were included in video calls when the couple told extended family members about the diagnosis.
"I told my mom and obviously she broke down crying, and the kids were part of all those conversations," Brown said.
It wasn't until two months later, when Brown and his 12-year-old were home alone, that the youngster asked how the illness would progress and affect his dad. The two of them cried together that day.
Brown's health deteriorated quickly after he was diagnosed with pneumonia in May 2023 and spent two weeks in hospital. He is no longer able to walk and uses a wheelchair.
His boys help feed him and brush his teeth when a personal support worker is not around. His older son also uses a lift to help put him to bed every night and both boys can place the mask of a cough assist machine on his face so he can take deep breaths to clear secretions from his lungs.
Andrea Warnick, a registered nurse and psychotherapist in private practice, said it's important to call an illness by its actual name, whether it's ALS or cancer or some other disease.
"Where I find a lot of people get stuck is that they'll think it's easier to tell my young child that daddy's sick. So the next time someone's sick in daycare kids have no way to differentiate," she said from Guelph, Ont.
"I always encourage families to prepare kids and say, 'I might cry as I'm having this conversation. That's OK. You might cry or you might not cry. That's OK too.'"
The Canadian Alliance for Children's Grief represents agencies, individual counsellors and grief organizations across the country to support families before they have tough conversations with children.
The alliance also hosts a national virtual grief symposium every November for those who work with children. It's held in line with Children's Grief Awareness Day, which has been observed in the United States since 2008 and is increasingly being recognized elsewhere.
Sharon O'Donnell, co-ordinator of support services for The Lighthouse for Grieving Children, a non-profit that offers bereavement care and counselling for families anticipating a death, said Canada lacks funding for such programs for both adults and kids.
Some professionals can also be uncomfortable talking to youngsters about a parent's serious illness or death but international literature shows they benefit from knowing what's happening, O'Donnell said from Oakville, Ont.
However, children are often the "forgotten mourners" as adults talk among themselves and exclude kids because they seem to be doing OK, she said.
"Children's grief doesn't always look like adults' grief. They do what we call puddle jumping — they move into their grief and their emotional moment and they're out of it five minutes later and asking for a cookie or to play a game."
O'Donnell encourages families to begin conversations with children early, when there's still hope that the sick person will get well, and to use concrete language instead of saying the person might be "going away" so youngsters are not confused if the person dies.
"When they don't have any information, children are very perceptive. They will know something is wrong, and so they will conjure up reasons and stories in their mind."
This report by The Canadian Press was first published June 28, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Camille Bains, The Canadian Press
