Home & Longterm Care – Challenges, rewards and revelations

Becoming a parent for the first time is a challenging experience, even in the best of scenarios. But for Fiona, motherhood was stacked with seemingly insurmountable odds. “I dropped out of high school at 16, flaked off for a few years and found myself pregnant with Jason. It was a surprise…and he was born 11 weeks early.” When Jason was four months old, Fiona’s world was turned even more upside down with Jason’s diagnosis of Cerebral Palsy.

“For the first two years I grieved for all the things he wasn’t going to do,” she says thoughtfully. It’s a period in her life Fiona refers to as “dark.” Though she had help from her mother in those early days, she now knows that she was living with depression and anxiety. Fiona took some mental health courses which helped her identify the emotions she was contending with. “Sometimes there’s anger, sometimes there is great sadness. I received various tools, learned what my triggers were and learned to combat the problem. I understand what I need to cope. You don’t get to suddenly ‘turn off’ the disability and have it go away for a little while so you can catch a break,” says Fiona.

As she emerged from the darkness, Fiona looked for new possibilities. She took a computer course through Ontario Works and then completed her high school education. She then handed in a resume to Oasis Clothing Bank—a charitable organization that helps people with addiction recovery—and got the job. Just as things were beginning to come together, Fiona received more devastating news: Fiona’s mother, who had been her “rock” of support, had Alzheimer’s disease.  For several years Fiona worked tirelessly to juggle care for both Jason and her ailing mother who eventually went into a long-term care facility and sadly passed away.

Even though she is heart-broken by her mom’s loss, she continues to persevere, juggling care for Jason with her job (which she’s now been at for eight years). Her determination and unwavering commitment to Jason were recently honoured with a VHA Home HealthCare Heart of Home Care Award. The award recognizes unpaid caregivers who go above and beyond to care for a loved one who has a disability or chronic illness.

“She is the living embodiment of service to others which I think we’re all kind of missing and lacking in our life today,” says childhood friend and nominator Madelynn Cooper.

While Fiona and Jason’s journey has had its share of challenges over the past 20 years, it’s clear it also has its rewards: “Jason is a charming little boy. He’s got a smile that lights up a room. He has a thrill for life. I’ve had people say to me when they find out he has a disability, ‘oh the poor thing.’ Don’t feel sorry for my kid. My kid is happy. He is full of life. He is such a teacher to so many other people.”

Watch Fiona and Jason’s video story at bit.ly/HeartFiona

Fiona’s Caregiving Tips:

Look to friends and family for comfort and support. “I have my tribe of people. My friends are my tribe. They are all aunts. It really does take a village to raise a child.”

Investigate support services and other parent groups. Fiona has received a lot of support from the Easter Seals Society and also participated in parent groups at Holland Bloorview Kids Rehabilitation Hospital which she found helpful.

Do your research. “I read and read about Jason’s condition,” says Fiona. Research can help you feel more confident about handling medical staff and in making more informed decisions.

Change questions of “why me” to “why not?” Re-framing this question helped Fiona better process challenges and view them as opportunities for growth and learning instead of as obstacles.

For more caregiver resources visit www.familycaregiving.ca