Creating a parent-run, community-based home for my son with disabilities.
The novelty of COVID isolation is wearing thin. We’ve baked enough bread, watched enough Netflix, and we desperately want to return to our daily lives where we feel we have some measure of control. At the moment many of us are struggling with an utter loss of control in our daily lives. Our regular routines …
Continue reading “Riding the COVID wave: What extreme care taught me about control.”
On the wall behind my desktop computer hangs a small wooden door. The door is painted a robin’s egg blue and depicts a tiny fairy seemingly floating atop a garden of flowers. The idea of a fairy door is that when you are not looking fairies quietly visit your utilitarian space, perhaps leaving behind some …
Continue reading “Mothers Day Reflections 2020: Visiting fairies and finding rainbows.”
This past Monday I returned to the task of editing a journal article that I had started writing two months ago. The COVID pandemic, the province-wide shutdown followed by the frantic move to teaching university courses online, and my son’s hospitalization and death, meant that for several weeks I was in survival mode. I only …
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 …
Most mornings I read the Globe and Mail before tackling my day. Today’s headline outlined the spiralling death toll due to coronavirus in long term care facilities. Over the last several weeks there have been numerous articles discussing the impact of COVID-19 on people with disabilities and underlying health conditions, particularly those who rely extensively …
Continue reading “Caregiving, vulnerability, and COVID: What did you expect?”
Its hard to believe that just a little over a week ago I was writing about COVID-19, anxiety, and parenting a medically fragile child. It turns out COVID-19 was the least of our concerns. For my son, it was plain old pneumonia landed him back in the ICU. Eight days ago my son was ambulanced …
Matthew is sleeping in today. Why? Because he’s not going to his day program. Yesterday afternoon we received a message from one of Matthew’s caregivers. She and her partner have been advised to go into two weeks of self-isolation. She is well, however her partner’s colleague is a family member of a newly confirmed COVID-19 …
This morning I received an email from my husband. A member of his immediate team at work had stayed home sick. His colleague had a fever, sore throat, and was coughing. Were we concerned? Should we take precautions? As the parents of a medically fragile adult son these are conversations we’re having almost daily now …
Caregivers, paid and unpaid, often bear the brunt of outbreaks. Paid caregivers cannot work remotely and many front line care providers are poorly paid, have little job security, and have limited benefits or none at all. They are forced to work sick – both because financially they need to, but also because people need to …
Over the last few days I have found myself thinking a lot about COVID-19: Should I be concerned? Should I prepare? What is the risk to my family, particularly my medically fragile adult son? To the best of my understanding the coronavirus is currently believed to pose little risk if you’re relatively young, or even …
