A year ago today we finalized the purchase of Matthew’s house. We were so excited. We were so hopeful.
Matthew had experienced a protracted period of medical stability. He hadn’t been admitted to hospital in years. We hadn’t visited an emergency room. He hadn’t even had minor blips of the flu.
Matthew had settled into a comfortable routine of attending his adult day program, and spending evenings involved in a variety of activities. Attending the hockey games of our local OHL team was a particular favourite. We’re pretty sure he didn’t understand a thing about hockey, but he loved the noise, busyness, and particularly the pre-game laser show. The kid was busy!
In these more recent years I often joked that for a person considered “medically fragile” my son seemed pretty darn stable. Some days I even questioned whether the label was still warranted in light of his robust health.
I started to plan for Matthew’s adulthood. I joined a reading group of other mothers caring for complex care adults who were trying to forge meaningful, adult-based lives for their children. Our family had started exploring things like micro boards and lifetime networks to create a supportive team to care for an adult Matthew. We had established a home-based group of caregivers called “Matthew’s team”.
One of our goals was to establish a group of people to could step in and provide meaningful direction about Matthew’s care and quality of life if my husband and I could not. While predictions about Matthew’s life expectancy suggested it was unlikely he would live into his 30s, we were aware that young adults with disabilities routinely challenge medical estimates all the time. We figured Matthew would join that illustrious group, and that we had better plan for his care in the event that we pre-deceased our son.
I also knew that I could not, indeed didn’t want to, sustain Matthew’s complex care on my own, indefinitely. As a researcher in the field of caregiving ethics I knew how many of those stories played out, and it wasn’t pretty. With a system that rarely steps in and offers meaningful support to aging adults with disabilities, and their parents, I knew organizing Matthew’s adult care would be up to me. I was determined that we would defy the odds and that Matthew, and our family, would find a way to thrive. We were well on our way!
Along that vein we had trialled a shared care model with a group home from the ages of 18-20. The team there was wonderful and I learned so much during those two years. Mostly that I was never going to be okay completely letting go of Matthew’s care, and it made sense to explore other options.
Shortly after Matthew’s 20th birthday I began seriously considering a broad range of creative options for Matthew’s adult care. One day, while sipping coffee with a close friend who also parented a complex care young adult, I shared that in a perfect world an affordable bungalow would be listed for sale in our neighbourhood. Our kids could be roommates in a cool bachelor pad. I kid you not, less than three days later a two bedroom bungalow around the corner from us was listed for sale. We purchased it and started our journey of creating Matthew’s adult home.
In our dream Matthew would live with his best buddy. One of their caregivers would occupy the suite in the basement. A team of additional caregivers would work together to create a busy, fun-filled community life for our young men. We had plans to renovate the basement and contractors were poised to begin work this month. We had a budget, and had started establishing a team of caregivers who were excited to be part of a unique new model of community-based care. We were pretty excited about all these plans. COVID slowed things down somewhat, but we hoped to be hosting a huge open-house barbecue to show off the renovations in late summer.
In early December Matthew was admitted to the ICU and remained on a ventilator for two weeks. He was discharged just before Christmas and by February seemed to back to his old self. He was attending day program and hockey games. We were making plans for him to spend a stretch of several weeks at our family cottage this summer.
It’s weird how this medical fragility thing works. One of the best research articles I read described it like living with a time bomb. You don’t know when the bomb will detonate, or how bad the damage will be. Will there be a series of little explosions, or one big one? The bomb might remain dormant for protracted periods of time, leading those who live in its presence to let their guard down, and then wreak havoc with little warning.
The day our province began its COVID shutdown Matthew was happy and healthy. Matthew spent a sunny day watching Disney cartoons while I knit in the chair next to his wheelchair. We went out for a walk. I joked that I would likely continue with this schedule of Disney, knitting, and walks, for several few months. We knew with Matthew’s medical history we would be in COVID shutdown longer than most people in Ontario. I figured there were worse ways to spend a period of protracted isolation.
Two days later, with very little warning, Matthew’s breathing became laboured. He was ambulanced to hospital and back in the ICU by the end of the day. Initially we thought he might avoid intubation, but shortly after his transfer from the ER to the ICU it was decided he needed to be on a ventilator.
It wasn’t COVID, just plan old pneumonia in the end. Matthew died on March 29, 2020, less than a year after we bought his house and began this “Boys in the ‘Hood” journey.
Julie Keon, in her blog about parenting a medically fragile child, What I Would Tell You, talks about the ‘mind f*ck’ of life expectancy. Parents of complex care children make every effort to ensure their child leads a full life, all in the perpetual shadow of their expected death. We live with the knowledge that despite our best efforts, we cannot change the outcome. We know how our story will end, we’re just not sure when the final chapter will be ‘published’. It is difficult to live in such a space of constant tension, waffling between fear and hope. As much as we could, I like to think we chose hope.