This is a kid who was not going to move below the neck. I mean she just wasn't
going to move below the neck. This is what we were told by the doctors.
This child is not ever going to leave this hospital. This child is never going to breathe on
her own. This child is never going to ever be
able to use her even her upper body never mind her lower body.
Michelle has been the vanguard since she was little. "She's going to only live to
be one, she's only gonna live to be two. She's only gonna be live to be five."
You know? Couldn't possibly live on her own. Every single time we come up against
something we're stopped right Michelle? First we sit down and we say we're not
going away, and then we bang on the door then we
break and then we kick it in.
I know I have like a lower life expectancy
and I am the one of the oldest living people with a trach and a ventilator living on my own.
My mom pushed me a lot to be independent. I'm trained to take care of myself.
Independence has been really important to me.
I have a machine, I put a catheter down and it suctions literally the mucus
out of my lungs. You can put it down the left lung or the right. It helps me
I guess with my breathing. I have to change the catheters and then I have a
breathing device at night and the ventilator pumps air into my body.
I forget to breathe when I'm sleeping.
During the day I have to always be thinking about it and make sure that I'm
regulating my own breathing whereas it comes second nature to you. So I do go to
physio about once a month is what's covered. The left side my my body doesn't
grow or develop as much as my right side. I try to work for the left side of my
body to make sure that I have the muscle so it doesn't just get weaker.
Hope you weren't expecting Driving Miss Daisy
He's been great and helping me advance and helping me whenever I need anything.
Experiencing different things like the motorcycle. Raids, gay pride, and they can
get to the movies for free you don't have to pay. He's been more the comedic relief and
the fun side of life, and my mom has been more the advocate and the pusher and
it's good to have that balance. She looks very hard in this and it's costing her
a lot of money for everything. She tries to be on top of everything and like she
works more hours than I do when I work too many hours. Just to try to stay ahead.
So they put a lot of, it's ODSP - Ontario Disability Support Program. So they've
put in a lot of barriers to to retain employment. Like every month I have to
hand in my pay stubs like my earnings I have to show how much I make.
So I have to drive down to the ODSP office and hand it in. Bookkeeping for ODSP is like
a second job I think a lot of people with disabilities don't work because
it's a lot of work to maintain your employment status.
I get cut off a lot typically it said I made too much money or that there was
three pay periods in one month or something you have to find a way to
rectify it otherwise you just don't get the ODSP money. It also affects
wheelchair repairs, medical supplies things like that. A big concern for me
was that Michelle would do things like hoard her supply she would stop using
her gloves, or she'd stop using catheter, she reused and put herself in a position
of getting infections. It's hard watching your kids
struggle we're trying now for her to take over. What I've been doing for her
for the you know for the last 30 years. I feel proud for her I also feel very
scared for her because I'm 62 and I won't be able to do it for her forever.
Hopefully she lives longer than me which is something we never thought would be true.
She's my hero, she has a really keen mind, she has a really strong will.
She has all the that she needs to be able to navigate this except for one
thing and that is the amount of time it takes. So my goals are to I guess keep
moving up in my career, have ODSP the streamlined better so that it's not as stressful.
I think I'd want to get married and yeah and to keep progressing
in life I guess.