Taking a Look Back at the Start of my Journey

March 16th, 2024, will mark the 30th anniversary of the day I moved out of the Children’s Hospital of Eastern Ontario and into my apartment.

Each week in March, I will write about my journey from 1975 to now.

I’ll be sharing my story from my perspective and remembering past conversations with my family and the nurses who cared for me at the time.

Some parts of my story are fuzzy, but I will try to remember as much as possible.

This is my story, and I hope you enjoy reading it.

I was born at the Grace Hospital on January 4th, 1975. Initially, I was supposed to be born on January 1st, but I was late. 

As far as I know, everything went well, and I was born healthy. Shortly after, I went home with my parents to live with my brother and sister. At some point, my mom took me to Toronto to get a muscle biopsy done.

I believe that the results of the biopsy showed that I had a rare neuromuscular condition called Nemaline Myopathy. The doctors told my parents that I would only live a year.

When I was six months old, I suddenly stopped breathing. My mom was holding me and noticed that my face was blue. Without hesitation, she rushed me to CHEO, where they did an emergency tracheotomy on me. 

Thanks to my mom’s quick thinking and the doctors and nurses at CHEO, I survived.

That was the day my fight began.

Once I was able to breathe and in stable condition, I was transferred to ICU, where I stayed for six years. Nobody was sure what to do with me or how long I would live. In the beginning, I was confined to a bed in the ICU while hooked up to a ventilator and a bunch of machines.

Back then, ventilators weren’t portable. Come to think of it, most medical technology wasn’t mobile either. After all, it was the 70s, a very different time.

For entertainment, I spent most of my time listening to records on my Mickey Mouse record player. I had a bunch of Disney records and various children’s records. 

It was often scary, though. There were days when I would have problems breathing and other issues. For the longest time, it was touch and go.

I was quite literally fighting for my life, and some days I still am.

As time passed, the CHEO doctors and nurses noticed that I was a fighter and in it for the long haul.

Eventually, I had a television and a radio in my room. I could watch TV and the fantastic Saturday morning cartoon line-up. I was thankful for that. 

Being in the ICU, I was surrounded by kids who were in rough shape. Most were stuck in beds, unable to communicate with anyone.

Despite my health issues and my surroundings, I was able to keep my mind occupied. My mom, sister, nanny, and grandparents visited often, plus I had a television, radio, records, books, and toys to keep me busy.

At some point, I got my first wheelchair and could at least get out of bed for a little bit. I wasn’t able to go far.

The other thing about the ICU was that there were no windows at the time, so to me, there was no outside world.

Fortunately, that would eventually change. As soon as I saw a small glimpse of the outside world, I knew I wanted more. I wanted to experience everything, even the little things.

Even at a young age, I was determined to experience as much of the world as possible.

Little did I know that this was the beginning of my journey.

I’ll continue my origin story next week.

In the meantime, stay safe and keep rolling.