Last week, I left off when I was approached by upper management at the Children’s Hospital Of Eastern Ontario about moving out.
I was seventeen at the time and was aging out of the system. CHEO gave me two options: I could either live in a group home or a long-term care facility.
Neither option appealed to me, so I added a third option. I wanted to live in my own home.
With that, my mom, one of my caregivers, Peter, and I started working together to make that happen.
We wrote a letter explaining my situation and how it would be cheaper to live alone rather than in any other place.
We mailed the letter to all levels of government, including the Ministry Of Long Term Care. In some cases, I hand-delivered the letter. Along with the letter, I was also interviewed by the media. I did my best to show that I could live independently and why it would cost less for the government to let me live independently.
As the weeks and months went by, we remained in contact with various government officials, care agencies, and medical supply companies, but nothing was concrete.
At some point in late 1993 or 1994, I was told that both the government and CHEO had reached an agreement and that they would pay for my care. So, for the first few years, CHEO continued to help me even though I was no longer living there.
As soon as I found out, packing became my main priority. I had accumulated nineteen years of toys, posters, music, clothes and personal belongings. In hindsight, I wish I had hung onto some of the things I had. I could’ve made much money selling them today or kept some.
But, alas, we all must grow up and move on at some point.
At that point in my life, my days consisted of attending high school, packing, and attending meetings. One day, I had enough of school and wanted to focus all my energy on moving out and starting my new life.
As part of the process, I began interviewing people to be my caregivers. Fortunately, the first three I met were amazing. They were all around my age and eager to be a part of the beginning of my independence.
There was still the matter of arranging various medical suppliers to ensure my care and health. Most of my medical supplies were and are related to my ventilator and my tracheostomy. Not only can they be hard to find, but they are also costly.
Once everything was in place, I was set to move out.
That date was March 16th, 1994.
CHEO threw me a going away party, and several media outlets were present to capture the moment.
Shortly after the party, packed with my bags, I went to the CHEO lobby to wait for my ride to my new home. Of course, my ride was a bit late.
SHOCKING!
Finally, I unpacked as much as possible and tried to relax when I finally arrived at my new home.
I couldn’t relax. I was experiencing a ton of mixed emotions.
I was happy, sad, scared, anxious, excited, and questioning if I made the right decision.
I was unable to sleep that night. Come to think of it, I didn’t really sleep for the first fifteen years. Most of the early years were spent partying either at home with friends or at various nightclubs.
I lived fast and hard. Let’s face it: I was a nineteen-year-old kid who had been given the keys to my freedom and independence. All I wanted to do was party and experience life.
Nobody told me about paying bills or how to be a responsible adult. If they did, I didn’t listen. Bills, including rent, started piling up.
My mom helped me for a while, but I eventually matured enough to know I had to start doing it myself.
My mom threatened to stop helping me, so I got my butt in gear.
One of the great things about my mom is she’s always treated me as her son instead of her son with a physical disability.
That difference has made me who I am today, and I’m grateful.
Next week, in the final chapter of my four-part series, I will discuss my life over the last fifteen years, my future, and my next big step.
In the meantime, stay safe and keep on rolling.
