David Mosher, our Vice-President of Sales, was recently appointed Board Chair of the Ontario Caregiver Organization. This organization, an agency of the government of Ontario, was created to support 3.3 million caregivers - ordinary people unpaid by the healthcare system - who provide physical and emotional support to a friend or loved one.
David is intimately familiar with caregivers. His 19-year-old daughter Victoria is autistic and living with mitochondrial disease; she has required constant supervision since her infancy and depends on a feeding tube to meet her nutritional needs. Today, David shares his story as his daughter’s caregiver.
David, can you tell us about Victoria’s condition?
When she was a year old, Victoria developed a fever that led her to be taken to the ER. Upon arrival, her condition deteriorated quickly. After beginning to hyperventilate, she fell into a coma. Unable to stabilize her, the medical team told us something no parent should ever have to hear: they couldn’t save her and we should prepare for the worst.
Despite her critical state, Victoria was quickly transferred to SickKids, and this is what saved her life. By diagnosing a metabolic issue, the doctors were able to determine an emergency treatment plan to stabilize her. She awoke from her coma a week later, but her illness caused a brain injury that would permanently affect her.
After 6 long weeks in hospital, the verdict fell: Victoria was living with mitochondrial disease. The perfect baby we had known for a year now needed a feeding tube, couldn’t control her movements or even smile, and would likely never talk. It was uncertain to what extent her brain would recover.
What are some of the challenges you experienced as a caregiver in the first few weeks?
We had to completely relearn to take care of our daughter because she required very complex care. Victoria didn’t sleep at night, so we reworked our schedules to stay by her side, and her mother left her job to take care of her full time. We alternated shifts: during the day, I went to work, and I took over late in the night before leaving again for work the next day. Her mother and I basically worked on 4 hours sleep a night for years.
Becoming a caregiver unfortunately doesn’t come with an instruction manual and every situation is unique. It is extremely demanding to understand the needs of a child who is unable to speak or write. You become an expert in reading body language.
Finding an adequate school for Victoria was also a monumental undertaking. Because she was also autistic, she was homeschooled initially; then she attended a school for autistic children before joining a regular high school in a specially adapted program.
What I didn’t know at the time was that there were tons of resources available to support caregivers in their daily lives and help them overcome these types of challenges. Whether they are caring for their own child, an aging parent or a person with mental health challenges, organisations like the Ontario Caregiver Organization are available to assist all caregivers.
How did your volunteer involvement start?
The weeks I spent by Victoria’s side in the hospital filled me with tremendous gratitude toward the healthcare system. When SickKids invited me to participate in an advisory panel, my answer was a given: how could I say no when they had saved my daughter’s life? This is how my volunteer experience came to be, in parallel with my career in healthcare IT. I felt a profound desire to help other parents who, like me, had seen their life turned upside down without notice, through MitoCanada and, more recently, at the Ontario Caregiver Organization.
Looking back, what sort of advice would you give new caregivers?
When you become a caregiver, the most important challenge is not forgetting to take care of yourself. It’s so easy to be overcome by guilt at the slightest moment of respite we give ourselves, but it is essential to do so.
Additionally, several programs exist to support natural caregivers, but few people know about them. The Ontario Caregiver Organization has made it its mission to raise awareness about these resources, to make them more easily accessible and to encourage people to use them. Having struggled on my own in the past, I feel it is important for me to get involved in this organization.
What have you learned from your experience with Victoria?
Victoria has taught me the true meaning of determination and perseverance. Day after day, she continues to defy prognoses. Around the age of 3, she started to regain some motor function and became able to sit unassisted, then to crawl. By age 4, she started wanting to walk. I was stunned! Her medical team had warned us that walking might be impossible for her, but things were different now! Within a few months, Victoria’s determination paid off, and today, she gets around without issue.
What inspires you the most about Victoria?
The first thing that comes to mind when I think about my daughter is how content she is. Despite everything she has been through and the fact that she is unable to speak or write, she is the happiest person I know.
Victoria is my greatest inspiration. She fuels my passion for healthcare. For the longest time, I wanted to cure her, but then I realized that as long as she was happy, I had succeeded as a parent. My greatest wish is for her to have adventures, travel the world and experience all the good things that life has to offer.