“So, I leave for a moment to make my coffee and you hear an owl,” I laughingly said to Rachel. We were sitting in our backyard garden, enjoying what was left of the sunrise before it created the intense summer heat. It was the rare time of day when the birds are louder than the…
Rachel, Janneke and I spent the first day of summer at the Holland-Bloorview Research Institute, learning about Brain Computer Interface (BCI). An unconventional approach to communication, BCI can help people with disabilities connect with others and take part more fully in everyday life. The story starts here Rachel furrowed her brow and looked intently at…
How do you make decisions? Are you a pros-and-cons list maker, weighing each side like it’s a courtroom debate? Or maybe you like to test-drive your choices (my preference): Pretend you’ve picked one path for a few days just to see how it sits with you, then flip to the other and compare. Making medical…
It’s been a year since our Rachel became an adult and now qualifies as disabled with extensive needs, according to our province’s health care system. We celebrated her 19th birthday with a train trip to Toronto for the day. Visiting the big city offers a unique experience of inclusion, as a wheelchair is less of…
One of our favourite places is the Niagara Parks Butterfly Conservatory. It’s close to home and fairly accessible for wheelchairs. We love the outdoor gardens and the indoor greenhouse with all its greenery and colourful butterflies. It’s a great inspiration for our own home garden. Need to pause We have a routine: roll the wheels…
On a Monday afternoon in early March, my nurse and I took Rachel and Janneke to a doctor’s office in Hamilton. Most of the girls’ care over the years has taken place at McMaster Children’s Hospital, but now that Rachel is officially an adult, and Janneke is 16 years old, we are slowly transitioning to…
Over the winter months, with snow making it a challenge for the wheels, we’ve been taking our girls to a local indoor track. Built for the 2022 Canada Summer Games, the Walker Sports and Abilities Centre was designed to be accessible for parasport. There are two large accessible washrooms, one on each level, with adult-sized…
It was a cold morning back in January, as the nurse and I bundled up the girls for a trip to McMaster Children’s Hospital for a scheduled visit. When the appointment ended, we wheeled the girls from the clinic to the large accessible washroom that includes an adult-sized change table. The intentional design with the…
Last month, for the first time in five years, Ralph and I were able to take a trip together overnight. Our younger two kids were with loving and capable nurses in our home while we flew to Alberta with friends to spend three nights in Canmore. As we drove the highway from Calgary to Canmore,…
What do you want for Christmas? I remember this question from my childhood, part of recess-time chatter. In January, the question would shift: What did you get for Christmas? In my family, we’d make a big deal of writing our names on a piece of paper and then each choosing a name randomly, meaning we…
“The volcano room will be here.” The architect indicated the spot with his cursor on the shared screen and continued describing the blueprint for what will be a children’s hospice home in Dundas, Ontario. I was part of a Zoom call with others who were invited to offer feedback in the design stage. The children’s…
In 1998, I was teaching middle school students in Minnesota. I wasn’t aware that Australian sociologist Judy Singer and American journalist Harvey Blume were discussing the idea of individual differences in brain variation and neurodiversity. What I did know at that time was Parker Palmer’s book The Courage to Teach. His words, written then, echo…
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