Willa's Story

This year began with a major change for our family: a move.

We had started to realize that carrying Willa up and down two flights of stairs every day was becoming both physically difficult and a safety concern. Mike and I were the only ones who could carry her. Although Willa was eight years old, years of treatment had affected her growth, and she remained closer in size to a five-year-old, weighing around fifty pounds.

Selling our first home was far more emotional than we expected. It was the home we brought Willa home to after she was born. It was where we welcomed her little brother. Every room held memories of birthdays, milestones, laughter, and ordinary family moments that suddenly felt priceless. But we knew it was no longer the right home for Willa's needs.

We needed a bungalow where everything could be accessed on one level, where Willa could move more freely in her wheelchair, and where there was room for the growing amount of medical equipment that had become part of our daily lives. Eventually, we found the perfect home in St. Albert and began a new chapter.

The move also meant finding a new school.

Once again, I found myself sitting in meetings, advocating for Willa and explaining why attending school mattered so much. I often felt that people were nervous about having a medically complex child in their building. It was understandable, but it was also frustrating because all I saw was a little girl who deserved the same opportunities as every other child.

Then we found the right principal. Willa was also blessed with a teacher who felt like she was meant to be part of her story. From the very beginning, the school welcomed Willa with open arms. They weren't focused on what she couldn't do. They focused on finding ways to make sure she could participate. They were willing to make accommodations, solve problems, and create an environment where she truly belonged. Although she started a few months later than her classmates because of all the planning and meetings beforehand, this became one of Willa's best school years - this was the year she made true friends.

These were children who naturally included her in everything. They walked beside her wheelchair in the hallways. Hands shot into the air when volunteers were needed to read with Willa or work on projects with her. She wasn't viewed as different. She was simply their friend. School became one of Willa's happiest places.

As the year progressed, communication became more difficult for her. Tasks that had once been easier now required much more effort. We worked closely with an incredible speech-language pathologist who helped us adapt and find new ways for Willa to express herself. Even as communication became more challenging, Willa continued to find ways to connect with the people around her. Some days she only lasted a couple of hours at school before becoming exhausted. Whenever she was ready to come home, I was there within minutes to pick up both Willa and Joyce. We learned to follow Willa's lead and focus on quality over quantity.

With our new house came another reality. We began meeting with contractors and lift companies to explore installing an elevator so Willa could safely access the lower level of our home. We quickly learned that the cost would exceed $60,000 between the lift itself and the required renovations. There were no grants available to help cover the expense. Like so many families caring for children with complex medical needs, we found ourselves facing impossible choices. Equipment and home modifications that were essential for accessibility were often considered luxuries by funding programs.

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