Summer loving

Summer loving

Thursday, January 21, 2010


I have missed a few days since I posted last. Do I have an excuse? Sure, I have 1000 of them, but so does everyone else. When I run, I actually blog in my head, and they turn out pretty good, but of course, by the time I get back from my run it is gone from my head. And I thought about recording it as I run, but that would take more energy and concentration than I have or could muster up.
So, I write down my thoughts in point form and hope that it all comes flooding back!

Ever since we received Maclain's diagnosis of CP, and my googling reached new levels, one of the key things that I have worried about, and have kept me awake at night is "where is all the money going to come from" to help.
Here is a rundown of our special costs of caring for Maclain to date.

Ability Camp x 2= over $11,000
CME therapy x 15 sessions = $1800
Bath Chair $1000
Special toys $1000
High Chairs and seating $1000
Shoes $400
Therapy Equipment $3000

Some of our future costs

Ability Camp- $5,300 per 5 week session as often as possible for best results
Therapeutic Riding-$35.00 per session, once per week
Seating System-$3,000
Communication Devices- $5,000
Conductive Education through March of Dimes $46.00 an hour
Walker $1000
....and so on and so on and so on

To quote the Barenaked Ladies " if I had a million dollars", this part of my stress would be a non-thing, but alas, my ship has not come in, or rather my lotto numbers have not come up.

Which bring me to the reason for my post. You know, pride is a funny thing, it causes war among men. And it makes it hard for proud, self sufficient, hard working parents, to accept help because that means that somehow we have failed, and we need to admit that we need help.

Some wonderful friends of ours, who didn't listen to our protests, thank god, put together a fantastic fundraiser in October called Raising the Roof for Big Mac. It was a tremendous effort from some incredible people, and we were fortunate to have raised enough money to come back to Ability Camp. To this day, my heart warms when I think of that awesome night.

Another fantastic act of charity that came our way, was as a result of someone who had heard about the event for Maclain. The dance troop that her daughter belongs to decide on a charity or fundraising drive for someone in the community at Christmas, and they chose to help Maclain. I don't think there was a dry eye in the house when I got up on stage to thank them for their generousity.

The only challenge with fundraising, is that typically it is not a one time gig, unless you have a specific goal in mind for a one time event.
For us to be able to help Maclain live an independent and functional life, we need to get help financially from other people because we simply cannot do it ourselves, and god knows the government does not help in any great way.

So as I think about the future and I research the next steps in his care and therapy, I have also come to think about planning another fundraiser. This time, I hope to be able to do alot of it on my own, so I don't have to burden other people who have busy lives themselves. I am also going to set up an area on my blog, where people may donate if they like, and I will keep a running tally of where the money is going, and how it is helping Maclain.
And in the meantime, stayed tuned, because the wheels are turning, and I hope to have another fundraiser come the spring or summer.


  1. Hi Brenda, I have a boy, 12 now. I do as much CE with him as I can manage. The only CE program I've seen out here is the one my boss allowed me to start at the non-profit where I work. We've organized 11 sessions in the last ten years. Sigh. Nothing happening now; but I'm not finished yet by any means. Your blog completely sucked me into it: like no other. Keep writing. Even if you feel like what you're saying is just blech. I am one person who is wearing your shoes, walking in 'em. Anything you think will ricochet and bounce in my world like Zaboomafoo in the forest.
    I love the reaction the well-dressed comment. Ha! That crap happens all the time to me. Just a pair of anecdotes. When Blue (my boy) was one and a half, a kindly woman asked me if he was walking yet. Well, at the time I wasn't particularly enthusiastic to discuss this with her, a total stranger; so I told her, "No. We're not letting him walk yet. We don't want him to get hurt." My friend nearby almost suffocated in his attempts to keep his laughter inaudible, and I might say it was no small joy watching all her facial muscles struggle for an expression like a mob of shoppers at a Tickle-Me-Elmo sale.
    The second thing I must tell you is this: when Blue and I are out in public and some well-meaning boob asks me what's wrong with him {the audacity!} I tell them that he has a rare disorder. He's the only perfect person in the world. It's impossible to know what to do with him; it's like living with Jesus! I'll leave you with that, I could blather on all day here. - Surrey, B.C.

  2. James, thanks so much for your comments, they made me howl!
    I have added your blog to my favourites list ( how popular you are now huh? ) and I get so much joy out of reading about you and Blue. I can't tell you how amazing it is that you were able to start up a CE program. I hope to be able to do the same thing in our area one of these days so that I can not only give Maclain constant access to CE, but also for others as well. We are planning to attend another session in the spring if my wallet can handle the stress, and now that we have the furniture at home, I hope to be able to start a mini program that we can do for at least a few hours a day.

    Anyways, so glad to hear that someone enjoyed my ramblings, and I will continue to take up the airways with more non-sense as I see fit!

    Take care!