Maggy’s Story

MAGGY

Let me tell you about my sister, Maggy.

Maggy had Down Syndrome and, after losing her biological parents, had no family to support her. In September 1999, my mom made the decision to open our home to an adult with support needs, and Maggy moved in through the Home Share program with Community Living BC. From the moment she arrived, Maggy was part of our family. She felt safe with us right away, and we all fell in love. She became the heart of our home, uniting us during our tumultuous teenage years, keeping us calm, and reminding us of what truly mattered. No matter how difficult the day was, we always made time to kiss her goodnight.

I remember on one of her first days with us she came home from her day program in tears. During a baseball game some opposing team members had taunted her for “having no family.” The next game, my siblings and I showed up cheering as loud and as obnoxiously as we could, announcing to everyone that Maggy was not an orphan anymore. From that moment, everyone knew she had a family.

Maggy was a princess at heart. She loved big gowns, tiaras, curls in her hair, dolls, babies, and, above all, parties. She attended every family gathering, vacation, and celebration. She even served as a bridesmaid at all us sisters’ weddings. Being surrounded by people who loved her was everything, and being her family was one of the greatest joys of our lives.

Through loving Maggy, my sisters and I discovered our callings. We all entered jobs that work directly or indirectly to support people with disabilities. I loved being her sister so much that I knew I wanted my own children to have the same experience, so my husband and I adopted our daughter Sofie, who also has Down Syndrome. I wanted my children to grow up experiencing the same love, worldview and connection that Maggy gave us.

Being Maggy’s sister, and a sibling to someone with support needs, came with different expectations. It meant learning how to speak up, how to protect, and how to push back when systems didn’t see her value or hear her voice. Loving Maggy showed me, in very real ways, what it means to stand up for those whose voices aren’t always heard, and it laid the foundation for the advocate I would become.

Being Maggy’s voice became a responsibility I carried with pride.

Maggy had appointed me as her legal representative, trusting me to ensure her wishes were heard. I took that job very seriously, and spent many hours talking with doctors, banks and even support workers to help them to see her as capable, competent and worthy.

In March 2020, when she fell seriously ill just as the Covid-19 lockdown began, I had to quickly learn to navigate ever-changing protocols. I was her voice in those moments and they needed to listen to her.

Despite all the bureaucracy against us, and threats that if we left her side in the hospital we would not be let back in, I was able to ensure she was never alone, even on the Covid ward. One of us family members was allowed to always be with her so that we could speak for her. In the end, her little body could not fight off the illness, and she passed away. The emptiness left in our hearts was unimaginable.

My duty as her voice did not end with her passing. I was not prepared for the fight that came next.

When we sought to honour Maggy’s wishes of being cremated in her princess dress, with her beloved teddy bear and have her resting place be with our mom, we discovered that legally, us, her chosen family had no rights. Despite Maggy having named me to legally represent her in life, BC law did not recognize that once she had passed. The Cremation, Interment and Funeral Act defaulted authority to the Ministry and their procedures above a “kinship relationship”, ignoring the deep bonds that made her family whole.

I’ve never fought harder, or advocated as strongly as I did then.

I called in every favour and tapped every contact I had. All we wanted was to simply receive her ashes and lay her to rest with our mom. We had an army behind us that I am still eternally grateful for. Someone got our plea to the Minister and though he did relent and grant us her ashes, an unprecedented decision, it came too late to cremate her in her dress and with her teddy bear.

Through everything, Maggy taught me what unconditional love looks like and how vital it is to stand up for those who cannot always stand up for themselves. Being Maggy’s sister shaped who I am as a person, as a mother, and as a parent advocate. Today, I work to ensure that families are empowered, children are supported, and systems are held accountable because every individual deserves to be seen, heard, and valued.