My child was born with severe, chronic, multiple disabilities. Our path was not so much about fixing his problems as it was about ‘maximizing his potential’ and ‘harnessing his natural abilities’. A modern and enlightened approach certainly, especially when compared to the mindset of previous decades. But let’s be real: even with this generous perspective, … Read more
I spoke on ethics at this month’s Grand Rounds at Holland Bloorview. This had me spinning for days beforehand! Not so much in trying to figure out what to say, but rather how to fit everything into a one hour presentation. Carsten to the rescue again! Reminded me (on the phone from Namibia, no less) … Read more
Within months after Owen was born, I was told he was deaf. Inside, I shrugged. “Oh well,” I thought. He almost hadn’t been born. He almost hadn’t lived. He almost didn’t come home from the hospital at all. Deafness didn’t seem like a real problem to me. People are born deaf all the time, aren’t … Read more
Something’s been bugging me about that recent visit with the neurology team at Toronto Western. Bugging me enough that I have spent some time reflecting on exactly what it was.
We had our appointment yesterday to discuss deep brain stimulation with the neurologists at Toronto Western Hospital. DBS is the latest thing in the world of neurosurgery – an implant that can control impulses from certain areas of the brain.
As Owen gets bigger and more wiggly I can sense the forthcoming horrific decisions that are coming my way.
I have been thinking lately about my role as Owen’s primary caregiver and advocate and the process involved in making tough medical and care-related decisions.