Embracing, learning from all of life’s experiences
Book offers universal truths as mother channelled her grief into positivity
Back in 2016 when her son was sick, Jessica Janzen Olstad kept a one-litre tub of hand sanitizer at the front door of her home.
She and her husband constantly wore face masks. She wouldn’t let anyone who exhibited even the slightest sign of illness into her house. A friend did all the family’s grocery shopping. Olstad was meticulous about handwashing and obsessed with germs. She and her husband rarely left the house.
“We were very much in our own isolation,” says Olstad. “If you want to talk about parallels in that to this time period, in one sense you could say it prepared us for this.”
When Olstad’s son Lewiston was three-and-a-half months old, he was diagnosed with a rare genetic disease called Spinal Muscular Atrophy (SMA). The disease affects the respiratory system, which means even a common cold can be fatal. Lewiston spent the final three months of his life at the hospital and passed away in his mother’s arms in November of 2016.
Those months in self-isolation may have more than prepared her for what her family and the rest of the world are experiencing during the COVID-19 pandemic. On the other hand, one might suspect the lockdown may have also brought back painful memories and waves of profound grief associated with losing a child. But over the years, Olstad has found ways to mitigate her grief and focus her energy on positivity and making a difference. Adopting the parlance of self-help, Olstad says she grew to recognize and respond to the “nudges” in her heart.
“In that time, we made a choice,” says Olstad. “We said we would bring the joy. Because the outcome didn’t look good. There was no hope, no cure. There was nothing we could really do to fix the problem. With all of the negative news around us with the terminal diagnosis and not knowing what it looked like. Would this be his last day? Would this be his last breath? We had a lot of touch-andgo moments. We chose to bring the joy and through that sparked this movement. I believe it is now my life’s work and my life’s purpose.”
In memory of her son, Olstad founded the Love for Lewiston Foundation. So far, it has raised more than $700,000 through annual fundraising events held each year on May 25, Lewiston’s birthday. She has also just written a book, Bring the Joy, will chronicles her tragic story but also offers a model for embracing and learning from all life’s experiences: the trivial, the joyful, the devastating.
So, while there may be surface similarities between Olstad’s life in isolation caring for a terminally ill child and the lockdown most of the world is only slowly emerging from now due to the pandemic, Olstad thinks her book will resonate beyond them.
It offers a roadmap to help people take control of their own mental well-being during difficult times. It has been said that the pandemic continues to have an impact on a large swath of the population’s mental health, ramping up anxiety and sinking many into depression. Even those who have not suffered direct losses from the pandemic may be feeling something akin to grief during the months of self-isolation. While obviously written long before COVID-19, Bring the Joy is dedicated to “anyone who is in or has been in the darkness.”
“I don’t rate grief on a scale,” she says. “I don’t say ‘Well, you lost your dad and he was 89 but I lost my son and he was still a baby so my grief is more significant than yours.’ There’s no such thing as rating grief on a scale. That’s something I really want to make abundantly clear. I believe loss is loss, no matter in what format it comes.”
The book offers tangible advice about handling grief, offering an often intimate glimpse of what worked and what didn’t for Olstad and her family.
“There is no word to describe grief because it’s constantly moving and changing,” she says. “It’s heavy on some days and lighter on others. But I wrote a shortlist of things that helped me. Everything from going to a counsellor, being honest with my feelings, working out, eating right, showering and simply making my bed. I also wrote about how to help people navigate grief and help families walk through that. We had stupid things and also helpful things. One of the examples was: leave the chili at home. I think we probably had 15 buckets of chili dropped off on my doorstep. It wasn’t that we weren’t thankful, but one human being can only consume so much chili.”
Olstad actually began writing the book prior to her becoming pregnant with Lewiston. It was initially going to be a love story about her and her husband, but the project took on more urgency after the family went through the loss of their son.
A former fitness instructor, Olstad now spends most of her time working for the foundation and as a speaker. In its third year, the annual fundraiser for SMA research and for the Alberta Children’s Hospital became a online affair due to the pandemic, but it still managed to raise $76,000 through a “virtual Instagram-a-thon.” Olstad and her husband have been self-isolating with their five-year-old daughter and one-year-old son, which has understandably not always been easy. As with everyone else, they are looking forward to getting some sort of normalcy back in their lives.
“When we are talking about COVID and real feelings and how people are grieving, is that it’s going to be different for each person,” she says. “There’s no judgment in that. I’m not walking in somebody’s shoes. I’m not aware of all the layers of what their loss is or what they are grieving or how this is personally impacting them. I think we need to be honest and real about that.”