Jessica Janzen grew up on a grain farm west of Winnipeg. She traces the way she thinks about all of this back to an orange chair in a hospital room, watching her grandmother unwrap a piece of homemade pie for a husband who had just been told he was dying, and the two of them bowing their heads over it.
Years later she and her husband were given a diagnosis for their infant son that came with a life expectancy measured in months. What they decided to do with the time is what this conversation is about.
What's Inside
- The hospital room in her twenties that set the terms for everything after it
- Arriving in a new city at twenty with very little, and the work that followed
- How a boy in a Sunday school class introduced her to a rare disease years before it arrived in her own family
- The diagnosis, and the decision they made in the days after it about how the time would be spent
- Why she believes you do not choose the circumstances and you do choose the response
- The foundation they built, what it funds, and the families it reaches
- A four year campaign that changed newborn screening policy in one province, and why that means other families get a different answer
- What she tells rooms full of leaders about burnout, playing small, and scheduling joy on purpose
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