Special-needs families lose a rare advocate
McLeod was the driving force behind Facebook support and resource group
Ottawa lost a champion fighter with the death last week of Kim McLeod, who for years was indefatigable in her focused advocacy for children with complex medical conditions and their parents, touching, and indeed improving, easily thousands of lives.
The 56-year-old co-founder of One More Thing, the Facebook group named for the endless list of tasks and requirements demanded of those special-needs families, died Friday morning, only hours after spending time with her daughter, grandchildren and sister. A Labour Day weekend family reunion, the first such gathering since COVID -19, was planned. Instead, her family celebrated McLeod's life.
“The house is full of love and laughter and jokes, just as if she was with us,” said her daughter, Lana McLeod Merifield. “Her nieces, nephews and grandchildren are all playing together in the garden of her mother's house, which she loved to be in.
“If she was here, she would use the words, `Yummy family time!'”
And while they celebrated McLeod's life, they knew she was reunited with her adopted son Kevin, for whom she was a medical foster parent since he arrived in Ottawa from Nunavut, at the age of one, until his death, 17 years later, in 2016.
“Kevin was her son, in her heart, and in his heart they were mother and son,” said McLeod Merifield. “She loved him just like he was her biological child, and wanted him to succeed in every aspect of his life. She spent years and years and years advocating for him to be treated just like any other child.”
Born the eldest of four in 1965 in Newcastle, N.B., McLeod was largely raised in Cornwall and Ottawa.
McLeod Merifield was born when McLeod was 18, and although she was her only biological child, McLeod's foster family — some with medical needs — numbered a dozen over the years.
McLeod eventually completed her post-secondary education as a child and youth worker. She also became a parenting coach and mentor, hanging out her own shingle as Grandma K.
“Being a parent was the most important thing in the world to her,” said McLeod Merifield, “and since Kevin was gone, it was advocating for these special-needs families. That was her passion, her goal. She was full of life and loved everybody. She was clever and funny, joyful, creative and passionate, and very outgoing. I think radiant would be the best word.”
In 2012, while sharing experiences and hurdles over a cup of coffee with Kelli Tonner, a friend of McLeod's whose son, Kellen, has cerebral palsy, the dawning realization came that there must be lots of parents in Ottawa similarly overwhelmed by the various medical, social, educational and other systems they had to navigate. And so the pair, along with a few other mothers with special-needs children, got together and founded One More Thing, a Facebook support and resource group whose membership now numbers more than 1,000.
“We so clearly saw a need for a space where people could share not just their burden of the systems and the one more things, but also their wisdom and expertise,” Tonner said.
But it was McLeod, Tonner says, who really pushed for the Facebook group, reckoning that an online platform would be much more practical and useful to parents with special-needs children, rather than trying to get together in person.
“Kim truly was an unsung hero in our city. She didn't seek recognition or have a professional mandate to do the kinds of things she did. She simply existed in this world in a way that made it easier for other people.”
Tonner adds that McLeod often reached out to parents she felt were particularly struggling, asking what she could do to help, and rarely took no for an answer. On occasion, she would drive across the city to clean someone's bathroom or drop off some chocolate.
“In the past 10 years, she really did a remarkable job in growing the group, in nurturing it, and really walking the path with so many of these parents,” Tonner said. “She really wanted the world to be a better place, a little more accepting, a little more accessible.”
McLeod's advocacy wasn't solely directed toward parents and their children. She also pushed to address deficiencies within the systems that families faced.
Alex Munter, chief executive of CHEO, recalls first meeting McLeod soon after he joined the hospital a decade ago, when she introduced herself to him in the coffee shop one day, saying she had some feedback and ideas for improvements.
“She was forthright and clear, and I came to know and really appreciate her,” Munter said. “A lot of her advocacy and the work she did came from her experiences with Kevin. The learning she took from that, and the barriers she encountered and what could be done to fix them, made her a trusted adviser.
“She would be full of praise when things worked well, and very direct about how things could be improved when they weren't working well.”
It was only a few weeks ago, Munter says, that McLeod organized a meeting with him, other CHEO officials and parents about accessibility issues within the hospital's original, nearly 50-year-old core structure.
“That's typical of how I would hear from her. She'd say, `I've been talking with parents or caregivers with the One More Thing or other groups, and you need to hear this — this isn't working for folks, and here are our suggestions, and tell me what you're going to do,'” Munter said.
“Kim was a leader and a great source of strength and resolve. She had a big personality, and when I think back to the many, many calls and meetings and conversations with her, she made me laugh, she made me cry, she made me think, she made me act. She had a huge impact on me personally, but also on our organization.”
Additionally, McLeod loved to dance and bake, and was deeply involved in the Bayshore community where she lived. She connected with many people over social media, with TikTok, where she had thousands of followers, being a particular favourite. Her three grandchildren were dear to her, and she shared a uniquely close relationship with the oldest, Madison. She also played Minecraft almost every day over the phone with seven-year-old Morgan.
Throughout Kevin's life, McLeod Merifield recalls, he had a motto he repeated to celebrate milestones: “I made it.” After Kevin's death, Kim adopted “we made it” as her mantra. Today, McLeod Merifield would like her mother remembered with the phrase, “they made it.”
McLeod was predeceased by her father, Bruce McLeod. She is survived by her mother, Mary McLeod, daughter, Lana McLeod Merifield, grandchildren Madison, Morgan and Merrick, siblings Deanna, Allison and Robert and soul sister Josée.
Kim truly was an unsung hero in our city. She didn't seek recognition or have a professional mandate to do the kinds of things she did.