Tuesday, August 28, 2012

Wheels for Evan

It is still August and that means that it is still SMA awareness month and this is going to be a post about that, although a bit more personal.  

Evan is such a sweet, beautiful, enchanting and happy kid.  Most people who meet him only see this and that is a good thing.  Of course there are some things about Spinal Muscular Atrophy that will challenge little Evan throughout his life.  For Evan, who has type 2, weight bearing is the way to delay many of the challenges that he will develop.  

Last year we were at the SMA camp out in Chilliwak, BC with a bunch of other kids who also have SMA and we were introduced to a different kind of electric wheelchair, a standing wheelchair.  This is a wheelchair that at the push of a button can get Evan from a sitting position to a standing position and he is even able to drive “standing up”.  One of the benefits of being in a standing wheelchair is the social benefit of being on the same height level as your peer.  Also, this chair is ideal for a child with SMA because when they sit all day in a wheelchair they develop scoliosis, which affects their lungs and other organs.  It can be seen in the following presentation that was given at a SMA conference a couple of years ago:

We try to get Evan into his manual stander as much as possible but he is limited to the areas he is able to use this device.  If he had a standing wheelchair he could be “standing” a lot more because his wheelchair would help him into that position.  The wheelchair won’t prevent Evan from getting scoliosis but it will delay it.

This is the wheelchair that we think would be perfect for our Evan:

This is where you come in.  This wheelchair costs approximately $40,000 and the government will not help with any of the costs.  They will pay for a normal electric wheelchair (like the one he has) but they will not pay for a specialized one like the Ranger.  We are throwing this golf tournament to raise the funds to help us buy this wheelchair for Evan.  The tickets to the tournament are $100 and we will get nine holes of golf at Silverwing golf course.  After the tournament we will enjoy some food in the clubhouse and participate in a small auction.

Not able to make it to the tournament and love to golf?  For $100 you can get two rounds of golf at either of these locations in the Calgary area,  Silverwing golf course, Boulder Creek golf course.  You can also buy a round of golf for $75 for either Elbow Springs golf course or the Wilderness Club in Eureka, Montana.

100% of all money given (whether by donation or ticket sales) goes towards Evan's chair.  

The tournament will be a best ball tournament and we will have prizes to compete for.  We have created a Facebook page with information about this tournament.  If you don't live in the area, or unable to attend this event for any reason but would like to help any way that you can, Evan has a paypal account attached to the Facebook page so that anyone is able to donate money that will go towards Evan's new wheels.

It is so important that we are able to get this chair as soon as possible so Evan is able to reap the benefits it will provide before it is too late to do so.  

“It takes a whole village to raise a child.” 
I know that together we can make this happen!  

this is Evan last year testing one of his friends chairs.

Friday, August 17, 2012


August is SMA awareness month and I wanted to write another little tid bit that I have been thinking about lately.  It is probably because we are (sadly) finishing up summer and I am hyper-aware of my children growing up.  I look at the two of them and am in complete awe at the little men they are becoming.  I can remember so clearly when my life wasn't so clear.  I will never forget the challenges of 2009, and as hard as it was I will forever be grateful of God's plan for that year because I learned how to be strong, and I ultimately learned how to lean on the strength of his Heavenly arm when I didn't have any.

I am much more secure in the family that Heavenly Father has blessed me with and I can't believe how lucky I am.  I don't know all things, I really don't know what events will play out in my families life .... but who really does?  All I know is that we are happy!

click here and always

Saturday, August 11, 2012

It's SMA awareness month

Did you know that August is SMA awareness month?  I stumbled on this video and it reminded me so much of our experience with Evan I had to share it.  Our road with Spinal Muscular Atrophy is not an easy road, but it is beautiful.

Happy Saturday everyone!!!

Friday, August 10, 2012

Birthday weekend.

I was hoping to get these posted before we all left for Waterton, but turns out I only had enough time to get the pictures downloaded before we loaded the vans and took off.  We have some of Justin's college buddies here visiting us right now and they all arrived the day before and the day of our sweet Landon's birthday.  Since I was already going to be playing host to 11 extra people (in addition to our own family) I decided that it would be a family party.  We had cousins and Grandparents come to celebrate the birth of our little tornado!  I CANNOT believe that he is 3!!!!  More on that when our company leaves but enjoy our sweet boys "animal" party.

And I was quite proud of my icing!!!!  Seriously going to be making that recipe again!!!!

Prep for 15 people for a week (food, bedding, towels)
2 successful birthday parties
(I'm feeling pretty good about myself ... and tired)

I made these oreo pops and they were sugary heaven on a stick!

such a brave boy now!!!  Jumps in with full gusto!!!

Joes birthday was the next day so we had a birthday brunch for him before we took off.

Wednesday, August 1, 2012

crazy summer

The weather here has been phenomenal!!!!  We have spent everyday outside.  Yesterday we were outside literally all day ... and then today I experienced one of the craziest shifts in weather that I have ever experienced.  It was HOT, and I mean really HOT and no joke it dropped about 40 degrees F' and we had a crazy hail storm.  The hail balls were a couple inches in diameter and man am I glad that I got out and covered my most sensitive plants.

Thank heavens it was nothing like this hailstorm in Cardston a week ago!!!!  60 million dollars in roof damage, and we aren't even talking about the totaled cars and shattered windows etc.  Lets hope I never have to experience baseball sized ice balls falling from the sky.

Evan-ism of the week so far.
Evan:"Mom, you need to pull me up faster ... like 3 kilometers"
(me laughing): "3 kilometers??"
Evan: "no ... 100 kilometers!"

It cracks me up how Canadian he is.  He is 5 and totally thinks in kilometers.  I've been here 4 years and still think in miles!!

This little boy is soooo brave now!  He is a fish.  He jumps in the water and won't take a break.  He always just says, "No break mom, I keep swimming!!!"

Who wouldn't love this man?