When you meet 12-year-old Kathleen McHardy, silent and slumped forward in her wheelchair, you can’t help but wonder what’s going on under that pretty auburn ponytail.
Want to find out? Play her a song.
Kathleen’s dad, Toronto jazz guitarist Chris McHardy, learned this when she was a fussing baby. He sang her the 1971 Bill Withers hit, Ain’t No Sunshine.
… when she’s gone.
It’s not warm when she’s away …
“That song really soothed her,” Chris tells me. “So, I played it to her for years. There’s something very melodic about Ain’t No Sunshine and she likes that. Anything melodic, with a bit of a groove.”
The other day, Chris brings a guitar, his Taylor acoustic made of Hawaiian koa wood, when he picks up his daughter at Variety Village.
Kathleen is effectively blind and makes sounds, not words. But two chords into Santa Claus is Coming to Town, she bursts into full bloom — huge smile, swaying and, in her way, singing along. When she gets excited, her feet stick straight out from her wheelchair.
Kathleen is in that chair because of a severe genetic disorder, KIF1A, affecting just 300 people in the world. Regular readers of my Sun Christmas Fund columns have met other kids with similarly rare glitches in their genes. Different genes — but for parents, the same touching, lonely, often frustrating struggle to reach inside their kid.
… and she’s always gone too long, any time she goes away.
Kathleen’s mom, Lisa Richardson, tells me, “As she got older, Chris would go into her room when he was writing music and strum on the guitar and after a while she’d hum along.
“She picks up melody very quickly. She seems to be able to anticipate where a song is going. I think if circumstances were different, she’d be singing and playing an instrument herself.
Kathleen’s dad started in bluegrass, but he now plays a bluesy sort of jazz and has gigged across Europe and in many of Toronto’s live venues, including around the family’s Danforth home. Sometimes, Kathleen tags along, though not much lately, with COVID lurking.
The pandemic has cost her much contact with the world, such as trips to the Science Centre or the AGO. Summer is better, with tenting trips to provincial parks and Variety Village’s famous day camps. Otherwise, she attends adaptive classes, then Variety’s after-school program.
“The big thing for Kathleen, and kids like Kathleen,” says her dad, “is the interaction and trying to keep things normal in their life. So, having Variety Village is huge.”
Chris breaks into a riff on the gleaming Taylor six-string and Kathleen beams anew. The rest of the after-school crowd has gone home.
Kathleen eventually outgrew Ain’t No Sunshine and graduated to Shania Twain, Taylor Swift and Adele.
Now, to everyone’s surprise, she’s a Spice Girls fan. Crank up Wannabe, and she’s gone.
Play a song she doesn’t like, though, even if it’s one of her dad’s, and she critiques it with a sound approaching “blecch.”
She loves birdsongs, though. Chris and Lisa take her to places like Point Pelee where she can hear thrushes and warblers make music.
“We think at some point Kathleen can learn some bird calls,” says her mom.
In winter, they take her out in an ATW — an all-terrain wheelchair, complete with ski runners — so the chickadees and cardinals can sing to her.
“It’s very difficult, when people first see her, to understand she has a lot more going on inside than she portrays,” says Chris. “You really see it come out when there’s music.
“It’s music that connects for her.”
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