When grief and gratitude are in the parenting mix

By Louise Kinross

Meet Lindsay and Mike from Ottawa, and their children Mya, 8, and Mason, 5, in our new A Family Like Mine film.

Mason has spinal muscular atrophy (SMA), a genetic condition that causes muscle weakening, and is doing six weeks of inpatient therapy at Holland Bloorview.

His mother Lindsay notes that he has a “big personality. This kid is just so full of joy, energy, excitement.” 

Mason’s favourite things include monster trucks, dinosaurs and caterpillar roller coasters.

“One hard thing five years in is he’s growing up in a world that’s not made for him,” Lindsay  says. “Accessibility, inclusion—we’ve come so far, but there’s so much farther to go. We can’t just be parents anymore. We’re caregivers. We’re advocates. We’re funding experts, writing all applications. And there are just so many more tasks that are on our plate when we just want to be mom and dad.”

Collaborative care works best for Mason, Lindsay says, so she and Mike don’t have to “explain the same story over and over again to different care providers… It’s really great that all the doctors, the specialists, the care team [at Holland Bloorview] work together. They communicate.”  

Finding other parents of children with SMA on social media helped after Mason’s diagnosis “from a medical perspective but also social [one], to just connect with other families who get it.”

Lindsay says she’s learned that grief and gratitude can be intertwined. “Two things can be true at once. You can be filled with immense joy and also grief at the same time… It’s okay to grieve the life that you might have thought that you had, but it’s also okay to be grateful that you now know what you’re dealing with, and you can figure out your next steps for treatment. Everybody’s journey is unique and just feel what you need to feel.”

Lindsay also talks in this film about how to cope with an inpatient stay, the benefits of child life therapy, the impact of SMA on siblings and caregiver burnout.

A Family Like Mine is a video series about diverse families raising children with disabilities, produced by BLOOM at Holland Bloorview. 

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