It has been a while since I was at the house. I have been switched from one Friday to another. I have been doing Friday nights with Tony for 4 years now and will now be working with another family volunteer.
I ended the night with the neatest conversation with a couple of the boys in the house. There is Jason who turned 19 in May and Brent who is seventeen. This was Jason's last weekend of respite care and then he officially graduates from the program. So what is next? That's when the talk got really neat. There is nothing like Canuck Place once you are an adult. There are few options...long term care (aka old folks home), full time nurse, or maintain status quo with your family. These guys would truly love a little independence and one of the ideas they had was to buy a house or large apartment and hire full time care. Of course they were pretty aware of the fact that it could cost as much as 2 -3 million to start a venture like this...but in their minds they had already formed a non-profit society (aligned with Canuck Place) and felt they could get the funds in place! They envision a place with 5 rooms, fully modified for chairs, hygiene and basic care. There would be 24hr care on hand. This would be their legacy to Canuck Place graduates and as a bed opens up in the house because somebody has moved onto bigger and better things...bang...the spot is filled!
When you have been in the care of your family for your whole life and you reach the age of majority a little independence is warranted. I also get the feeling that these guys realise how much effort their families have put into caring for them. Maybe their ideas tonight will never come to fruition. Perhaps the funds are too out of reach.
What I learnt tonight was that Jason and Brent will live their lives way beyond most people's expectations. Like all of us they make plans for their future. Being part of a hospice program doesn't phase them.
I said to Brent I can imagine the first purchase they would make is a case of beer. Not that they would drink it...just that it would seem the right thing to do. Brent replies that it wouldn't take much him being all of 20kg!
Guess what we did for the first 3 hours of the shift?
Rock Band! Jason had the best line of the night. He feels that X-Box 360 and RockBand should be covered under medical therapy. Jason has a reduced lung capacity because of muscular dystrophy. Part of his therapy has been to blow bubbles into a device; exercises to keep his diaphragm and intercostal muscles as active as possible. Singing does the same thing! Jason rocked out a few songs. Until you get out there and sing you don't realise how tiring it can be!
2 comments:
Hey malcolm,
Thanks very much for giving me this window into the lives and dreams of the kids/young people/adults that live and work at Canuck Place.
Have you ever thought of proposing an official blog for the facility. It would be a great way for the public to get a view inside - to see (or hear about) the visits from the canuck players, to see (or hear about) the Rock Band nights.
I think it could be pretty useful for the kids, workers, families, donors and everyone.... I am sure there might be a bit of red tape involved (privacy issues etc.) but if THOUSANDS of people read the type of thing you are putting out it would definitely have a huge positive impact - the way it has on me.
I'd love to help!
MJ
thanks meyrick,
i have thought about it, but thats as far as it gets!
what i might do is ask the admin people if they want to put a link to the blog. I will ask (and use your email as support!). What might be a good idea is to find another one or two volunteers who would want to write about their shifts as well...but then that might change the whole feel of the blog.
Thanks for your support.
are you racing this weekend?
malcolm
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