Running 500 Miles for SMA

There is an app out there called Timehop. I am not big on revisiting the past other than for purposes to mark achievement. I often speak to running/walking groups to talk about goal setting and maintaining motivation. I preach the basics of forgiving yourself, be kind to yourself and let the past go. Mistakes happen, move on. Except for measurement. I think TIME  is a marvellous tool for measuring progress. For example, 2010 I couldn’t walk up the stairs without major effort. Getting out of the bathtub was hard for me. As you all know, I started moving more and eating less. I am 117lbs further away from 2010. It amazes me.

I was flipping through TimeHop and came across a photo of my desk piled high in books and papers as I was writing my Capstone.

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This photo made me pause. I suddenly remembered all the steps that got me to this point.

I needed a project to work on for my final project. So I called my pal Joe because he often asks me the kind of questions that inspires me to think out of the box. We began talking about goals and future projects that would be huge or at the very least, take serious time and effort to complete. He disclosed that he would like to ‘one day’ run from the Walt Disney Family Museum in San Francisco to the esplanade in Disneyland Resort. I said, “Lets do it!” So we started planning and this became my Capstone project. Project Planning on an epic scale. I got an A+ but something else happened.

We started a foundation called Do Away with SMA. Part of this adventure was because if you are going to do something big, do it for a great cause. Joe’s family was personally affected by SMA so we decided to make this personal and choose that cause to work for. Why? Because other charities that you hear about are just that…charities that you hear about. They have a name and are doing well and meeting their goals. Apparently, Joe and I are two individuals that who like to go big or go home. Starting from scratch is a big deal for us. So, with the support of our families and friends, here we are. Co-Founders with the help of our friends in the foundation DAWS. All because we thought it might be fun to run 500 miles for charity.

Boom.

Its suddenly a reality.

This August is when it all happens. The way my life has turned really makes me blink with shock and awe. Whose life is this anyways? How did I get to this point? This is definitely not the old me. The new me is a very different person from 10 or even 5 years ago.

I invite you to follow our adventure on our blog at www.doawaywithsma.org. I will post adventures here and we will have a photo gallery on Facebook. Here is a link to our Crowdrise page that is raising money specifically to support this adventure. We hope to secure corporate support and raise money to help us fund this run as well as raise money to for our foundation. The Foundation support is found here .  That Cutie on the page is Claire. Claire has SMA. We met her Aunt through our Running Team and we heard amazing stories and saw adorable photos and suddenly SMA became REAL to the board. It was always real for Joe, his brothers died from SMA Type 1, but Claire is a typical kid living with an Atypical genetic disease. Now it is more important than ever that we raise money to support DAWS. We want to support kids like Claire in making every day tasks easier and to support researchers so they may find a cure. We want SMA to be eradicated. That is why Joe is running 500 miles. For kids like Claire.

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Here is what I hope to achieve by doing this grand adventure:

Raise money for our Foundation DAWS so we can help fund research and support parents and children who are living with SMA. 

Support Joe as he runs really far. Between you an me, he gets cranky when he is tired so this may be a challenge for me. See how I make it about me? Because I am awesome like that.

Share all kinds of daily adventures because you can’t run a marathon everyday and have nothing happen.

See the Coast of California. I haven’t been there since I was a kid. It should be a beautiful scenic adventure!

Meet amazing people along the way both on the road and in social media. 

I suspect this will be one of those life changing moments that teaches you about yourself and your friends. Joe’s Road Crew has 3 of us on board for support, food and fights   companionship. The off road support has many more….who may get calls from me as I will need to talk to people who don’t live in the car with me.

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There are 2 ways to support.

1. You can donate directly to 500 Miles for SMA. When your donation reaches different levels, there are gifts that coincide with the donation level.

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2. You can donate DIRECTLY to the Foundation. We have lofty goals for finding a cure and supporting families and their children. That gets expensive. The great news is, Do Away with SMA is a 501(c)(3) charitable foundation. That means I copy the legalese here for your reading pleasure:

The Do Away with SMA Foundation is a public charity and is tax exempt under Section 501 (c) (3) of the Internal Revenue Code. All donations made to the foundation may be deducted from your federaly taxable income to the extent permited by law. You should contact a tax professional to determine whether and to what extent donations are deductable under your particular circumstance.

 

This August is SMA Awarness Month. I invite you to come and cheer Joe on along the route. Here are our projected dates and places.

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I will be posting our location with video and photos and stories of our adventure. We hope you will join us.

We simply want to help as many people as we can, and play a part in defeating this disease. When I run, I always remember the faces of my younger brothers. ~Joseph R Kolinksy

Look for us here:

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The Art of Neon: CarsLand Radiator Springs

I have always been a fan of neon signs and art. Years ago, there was a child in my class whose dad was a neon sign creator. I was fascinated by the process and he invited to me to his shop to see the production of a new sign. He would also repair neon signs. I was amazed at the process! Not only must an artist be creative, they are glass blowers, chemists and electrical engineers. Here is a detailed About Page that goes through the process and the gases you combine with neon and mercury to create different colours.

This past week I made my way to Disneyland Resort in California to celebrate a friends birthday (her 40th – shhhh). Although I went under the pretence for her birthday, I was really interested in CarsLand, the Radiator Springs from Pixar’s Cars movie. It was like being in the movie. The detail was unbelievable! The purpose of my trip was to explore Radiator Springs at night time because the Imaginears used neon signage to make the place shine at night, just like in the movie. It truly became a different place.

John Lasseter sent his Imaginears across the United States to get a feel for how route 66 use to be. They came back armed with ideas from quirky to beautiful to down right amazing. Wondering down route 66 at night was akin to looking at Christmas lights. The colour and sparkle was a sight to behold! I spent 2 or my 3 nights exploring Radiator Springs and taking in the breath taking beauty of neon. Knowing the labor intensive methods and the craftmanship involved makes these signs into works of art. Stunning!

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There are no mosquitos in California and 10 other reasons I want to move there

Well I am back from a much needed diversion. I wouldn’t call it a holiday nor a vacation, but it was a fabulous diversion. I spent 5 fun filled glorious days in Southern California. Most of it at Disneyland with one hour of it watching Genetic Offspring’s concert ensemble play amazing numbers in Disneyland. IN DISNEYLAND PEOPLE!!! They came in second in the competition and will not get to go to Carnegie Hall  in New York, but they had a great time anyway. Quite frankly, so did I!

Yes I have been to Disneyland a bazillion times, and yes I see something  new every time I go. But this time I noticed cultural differences. Many people may not think there is a large difference between Americans and Canadians, but I think there really is. Of course I think there is a North American Culture as well, but I am talking about the distinct difference between Canucks and Yanks. For the record, I love Americans. Not every Canadian can say that. I think Americans can be their own worst enemy and the media doesn’t help the situation, but I have met and got to know many Americans and can say, your hockey knowledge sucks as a collective society but I really like you in spite of that.

Getting back to the culture aspect, it is defined as – The arts and other manifestations of human intellectual achievement regarded collectively.

Given that definition, I will lump food into the “other manifestations” because food can be a large part of culture. I think it is time for an Edmonton Tourist top 11 list.

The Edmonton Tourist’s Top 11 Cool Cultural Things About America

  1. I learned that Americans are okay with with clogged arteries but high blood pressure is not okay. Restaurants do not use salt. Weird, but good. I often find food too salty. I find it hilarious that every thing was loaded with fats, oils, mayonnaise, cheese – can I just say Americans have perfected melty cheese! Fats make food taste good. Sadly …it was too good.
  2. California has the best fresh fruit I have ever tasted. DAMN a California Orange is so freaking awesome! Being able to pick fruit off a tree is mind blowing to me. I would consider moving to California for this reason alone.
  3. American Birds are not scary. Again, weird… We all know how scared I get from birds. They terrify me. Remember the story of the baby bird who hopped up to me and wanted to peck my eye out? Well in  America, particularly Disneyland, birds make dresses and sing with English words – so they are not scary. This is awesome. I need to keep that in mind when the Swallows fly up here from Capistrano. They are American bird seamstresses…not Hitchcock killer birds. There is a big difference. I may now be over my fear of birds.
  4. Getting lost in America means you see cool things. In Canada it means you stop at a hockey rink or curling quonsit to ask for directions. In America you get lost and find the Jim Henson Company! This was the coolest find! It use to be the Charlie Chaplin Studios. Parts of the Muppet Movie was filmed here and I was in heaven. Some of the most creative people in the world were able to market their talents to showcase their fabulousness right in California. That was cool for me.
  5. Media has done a bang up job of self promoting their talents. We saw street signs like Sunset Blvd, Hollywood Blvd, or Vine. There were buildings I recognized like Capitol Records, Staples Center, Mann’s Chinese Theatre and In and Out Burger. I recognized brands and labels that are available only in America, that was cool for me. Growing up across the border and then seeing some of this stuff was awesome!
  6. American Candy has more variety. I ate M&Ms chocolate covered pretzels for the first time… I would move there just for those.
  7. The United States has their own Folk music! This is cool – except it has too much Banjo. Just say no to the Banjo people!
  8. You can actually see people get arrested! I felt like I was on an episode of COPS! This would have thrilled my brother, he should have come.
  9. Food labels are in English only. I am halfway to being french bilingual because of cereal boxes. I also cannot understand cab drivers in the States either. Some cultural aspects are unilateral, except French isn’t part of their culture.
  10. There are no mosquitos in LA. This is worth the price of admission. People can walk around without OFF or leave the window open and only worry about birds and rats… okay – I can handle a few mosquitos over birds and rats.
  11. The best thing about the cross-cutlural differences? I have NEVER been to California and seen or felt rain. Yet all the plants grow as if by magic. Intellectually I understand they use up the Colorado River water and buy water from Canada… but no rain and only sunshine is AWESOME for vacations! Heat and sunshine! 31C on Sunday…10C tomorrow here in Edmonton.

I’m packing my bags and immigrating.

I am DONE with Canadian weather. I can live with all that American stuff. I understand the language, they have hockey teams (GO RANGERS!), I could live on California fruit and M&M pretzles. Diet coke comes in tomato juice cans and food comes on handy sticks so your fingers don’t get messy. I am IN! I am starting the job hunt pronto.

I have become THAT Mom

We have been celebrating a bit LOT in the Tourist household this past week!  It seems that if you say YES more than you say NO, the possibilities become vast.

This time last year, my eldest kiddo GeneticOffspring (GO) registered for High School and said he was going to take bigger risks and try new things. I encouraged that frame of mind. It was working for me so why wouldn’t it work for everyone? GO is a was a very shy person who was afraid of what if’s. That seems to be an epidemic. The worry of What If. He entered High School with the intention of joining new clubs, speaking to new people and best of all trying new things.

How did that work out for him? Well, grade 10 was filled with new friends, higher marks, extra curricular activities, and laughter. All of these outcomes were a result of saying YES! Because his attitude and hard work became visible to teachers who run the extra curricular clubs, GO was invited to join the Grade 11 and 12 Concert Band and Improve Team to travel to California to represent Canada in a band competition. Since he was already on the Improve team, Band, Jazz Band and is a nice kid, the selection was made easier for the teachers. He was given a new instrument to learn (E flat alto clarinet, not that big of a change from B flat but big enough that we needed to google E flat alto clarinet fingering ) and new music to play. He had 3 days to learn before his first performance. Knowing him the way I do, this was a HUGE step of YES and I knew he was shaking inside.

The highlight of the trip for him is performing IN DISNEYLAND. We all know how I feel about Disneyland. Well, I passed that gene on to my kiddos. He says he can’t wrap his head around sitting in the Plaza Gardens beside the Castle, overlooking Walt and Mick (the Partners Statue in the center of the Hub). He has been practising for hours. He has learned that with practice and hard work you are better. Better at music, better at understanding the reasons behind hard work and most importantly, better at being an authentic self.

While he practices, we get to enjoy the musical stylings of the Alto Clarinet while it plays the Muppet Show Theme song, The Disneyland Medley and and a bunch of other fantastic musical numbers that have my toes tapping.

Alto clarinet
Image via Wikipedia

Occasionally I yell out “TEMPO” and the Tempo returns and the music is once again easily recognized.

This is SUCH a proud moment for our family, it was decided that we must pack up and fly to Disneyland to listen to MY Offspring play Disney music IN Disneyland! How could I not? I am going to film it. We booked the flights and the hotel. Plan to be there for just the weekend. We shared this wonderful news with GO and as you can imagine it went over like a led balloon…

The look of horror on his face said it all. The first thing out of my mouth was “you won’t know we are there. We are staying far from you. If you see us on Main Street, I won’t look at you. If you want to approach us then you must come to us”. He seems a little better about that. I understand, I really do. His first trip alone and his mommy is coming. First of all I WISH! They get to go to Disney Studios! I promised I would pay for the trip only if (he thought I was going to say only if he paid for half the ticket, but NO) took a lot of pictures of the studio! I WANNA GO! He was surprised and thankful to hear that!

The truth of the matter is, it didn’t occur to me that I should fly down that weekend to watch GO play, I was thinking how cheap it would be to travel without him! I could think of a million things we could do without him complaining. We wouldn’t have to go to the Lego Store! I asked ChatterBox where she wanted to go and she said to see the Stars on Hollywood Blvd. Cool! I’d love to do that! We could go to El Capitain Theatre, I have always wanted to do that and see the Chinese Theatre, then go eat at Disney’s Soda Shop!

So for all intense purposes I am THAT Mom, the one who can’t wait to get rid of her kid so I can go play. Only you and I know differently…and so will GO after we return home and he sees the stalker concert footage filmed by a proud mama.

The Land of Disney in Paris: Part II – Main Street

Here I was, Disneyland Paris. Park #3 on my bucket list.

Walking up to the hotel was very exciting. The Entrance to Disneyland in Paris looks nothing like it’s sister parks in the United States. The big reveal takes a while. Through the ticket booth, up to the turnstile and across an open walkway and finally you are at the tunnel. The Tunnel is in the sister parks too. The train travels over head. In the other parks I went to there is only two choices, left tunnel or right tunnel with a sign over hear that reads : Here you leave today and enter a world of Yesterday, Tomorrow and Fantasy. I looked for a similar sign and could find it. It must have one. That was the first thing I noticed was different, that and THREE tunnels to choose from.When we travel to the parks, we take turns deciding which tunnel to go through. I prefer entering the park on the right and leaving on the left. Here in Paris, we threw caution to the wind and went in the center tunnel! Crazy and shocking, I know! Thrilling none the same.

My fist glimpse of Main Street, There was a gazebo where the American Flag stands in the States. I understand why the flag was not there. The Gazebo was charming all dolled up for Halloween. I looked for the Fire Hall… To my extreme disappointment, there was a store in it’s place. There was no apartment overhead, no light in the window, no sign of Walt Disney. Maybe that is why the spark was not the same. I sent the muppets off to get photos with Characters before the rope drop (park opening), while I went to City Hall to make dinner reservations. By the time I found them, they were disheveled and flustered because here in Paris, guests do not queue up for pictures and autographs. They channel their inner hockey players, hoist their elbows up and force their way to the front. For a couple of Canadian muppets, this concept felt rude and unappealing. No autographs this trip. Secretly I was relieved, this meant more time for rides and details! YAY! Score one for the mom!

As we walked closer towards Main Street, I noticed the Castle drawing me in. She was beautiful and more spectacular than the other two castles I have loved before. It was hard for me to pull my eyes away and discover the details that surrounded me on Main Street. Windows on Main Street traditionally are painted with names of Disney builders, and imagineers, these windows did not disappoint. Except they are sparse in comparison. The street is wide and gives you that “walking down the red carpet” feeling Walt had wanted for the other two parks. By this time I was so excited to get to the castle I could barely contain myself! I wanted to see the Partners Statue and compare it to the others. We passed Casey’s Corner, and Gibson Girls Ice Cream Parlor, saw a shop that gave a nod to Lilly Disney – that thrilled me. All I could think was, I am walking right down Main Street in Paris with my family, Luck me!

Off we went to find the rope and join the masses for rope drop. We reached the “hub” and noticed no Partners Statue! WHAT THE…? It was later when I discovered it was at the Studios, a separate park – WRONG WRONG WRONG! But WHATEVER, it’s not my park, I understand you can put it wherever you like Michael Eisner, maybe that is why you don’t work there any more….poor decisions. The Castle up close and personal, amazed me with the scope and grandeur. I fell in love with my 3rd Castle. Although I think she is my favorite.

We had time to listen to the Main Street Loop music that is piped in. It really adds to the magical feeling in the park. Listening and singing while we waited in Frontierland for the rope to drop and our brand new Disney Adventure to begin!