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Willa's Story
Chapter 6
In total, we lived at the hospital for eight months.
Family visited whenever they could, but the person who brought Willa the most joy was her little brother. Every visit from him lit up her face and reminded us that there was still so much worth fighting for. I stayed at the hospital day and night. Mike would take over on weekends so I could briefly step away, regroup, and spend time with our son.
Eventually, after months of rehabilitation, medical setbacks, and small victories, discussions finally began about bringing Willa home. But getting her home would require far more than simply being discharged.
By this point, Willa's care needs were incredibly complex. She depended on a tracheostomy, specialized equipment, medications, feeding support, and constant monitoring
Being home was the best feeling. Having both of our children under one roof again was exactly what we needed. It felt like a fresh start, but it also came with a whole new set of challenges that we were still learning how to navigate.
Willa required constant care and supervision. Because she was dependent on a ventilator and was nonverbal, she could not tell us when something was wrong. We relied on the alarms from her breathing machine and an oximeter that continuously monitored her oxygen levels and heart rate. Every beep or notification immediately got our attention. The responsibility felt overwhelming at times, and there was rarely a moment when we were not watching, listening, or worrying.
To help care for Willa, an agency assigned nurses to our home. They worked ten-hour shifts, including overnight care and support during the day. Having medical professionals in our house around the clock was something we had never imagined. It was comforting to know Willa was receiving the care she needed, but it was also an adjustment. Suddenly, our home no longer felt completely private.
Weston was still so young, and the changes were not always easy for him either. Our home was now filled with nurses, therapists, equipment, and medical supplies. It was a very different childhood than we had imagined for him. But over time, he grew to love the people who became part of our daily lives. They were no longer just nurses and therapists—they became part of our extended family.
We also had to make many changes to our home to make it work for Willa's new needs. Mike built a wooden ramp in our attached garage so we could safely get Willa in and out of the van. Before leaving the hospital, we had traded in my small SUV and purchased a minivan using the remaining funds from the GoFundMe that had helped support us through such a difficult time. I was incredibly grateful for that van, and I still drive it today. Transporting Willa was a physically demanding task. Mike and I would lift her in and out of her wheelchair and into the van for every appointment and outing. Once she was safely secured, we then had to lift and load her nearly 70-pound wheelchair into the back of the van. It was not easy, and it quickly became part of our daily routine. We simply did whatever was needed to help Willa get where she needed to go.
We were also fortunate to receive a specialized car seat from a special family, which allowed Willa to travel safely and comfortably. At first, our trips were limited to medical
appointments, therapies, and hospital visits. Slowly, as our confidence grew, we began venturing out more and finding ways to enjoy life outside of medical care.
On the main floor of our home, we set up a daybed for Willa. I would carry Willa up and down two flights of stairs each day. If it wasn’t me, it was Mike. In those early months, she spent many days resting there as her body continued to recover. Eventually, she began spending more time in her wheelchair, allowing her to participate more fully in family life and daily activities.
Just as we were beginning to settle into our new routine, COVID-19 changed the world. It was an especially frightening time for our family - Willa was medically fragile, and we had healthcare workers coming in and out of our home every day. We worried constantly about keeping her safe. In order to stay out of the hospital during the pandemic, we missed spending time with family and friends - instead we chose to stay within a very small cohort.
Accessing rehabilitation services became incredibly difficult. Many therapists were unable to enter homes, and services were disrupted for months. Knowing how important therapy was for Willa's recovery made the uncertainty even harder. Eventually, I was able to assemble a team of professionals who could help assess her needs, provide equipment, and continue the rehabilitation she worked so hard for. It was another reminder that progress was rarely easy, but we would continue fighting for every opportunity to help Willa live the fullest life possible.
One of the most important parts of Willa's rehabilitation was finding a way for her to communicate. Although she was unable to speak, we worked closely with a Speech-Language Pathologist (SLP) who introduced us to an iPad-based communication program. Through the support of Kids with Cancer, we were able to access equipment that was not otherwise covered. Using her left hand, Willa learned to point to words, pictures, and choices on the screen, allowing her to communicate her wants, needs, and personality once again. She could give us thumbs up, tell us that she was 6, with one had and the best, she would blow us kisses.
Alongside the communication device, we also used simple yes and no cards. While they may have seemed basic, they became an important part of our daily lives. They gave Willa another way to express herself, answer questions, and participate in conversations. Whether she was using her cards or her communication app, every successful interaction felt like a small victory and helped us better understand what she was thinking and feeling. We were able to hear her thoughts in a new way. It wasn't through her voice, but it gave her a way to connect with us and the world around her.
Watching her learn and succeed with these communication tools was exciting and emotional, and it reminded us that although her path looked different now, she still had so much to say. As the months passed, Willa slowly began to get some of her light back. We filled our days with therapy, exercises, and finding creative ways to help her continue progressing. But we also made time for the things that made her happiest. Shopkins remained a favourite, and of course, there were countless Disney movies playing throughout our home. Between the hard work and the challenges, there were moments when we caught glimpses of the happy, determined little girl we knew so well, and those moments gave us hope for what was still to come.
Our first-year home was far from easy. It was filled with fear, adjustments, and challenges we never expected. But it was also filled with love and resilience. After everything we had been through, simply being together as a family under one roof was something we never took for granted.