Craig Kielburger

We Day Vancouver

October was a busy month for us. We got back from We Day Toronto and were behind in our coursework from school. Then I got sick. I’d had a bad cold the whole time we were in Toronto but it got a lot worse when I got home. I didn’t have any seizures but my doctor put me on bedrest for a week.

Luckily, I was all better by the time We Day Vancouver rolled around!

I’ve been to We Day Vancouver every year since Grade 8. I love it. This year was extra special because Dan and I were able to bring special guests with us AND we were invited to the Evening of Champions. Since we missed this night in Toronto we were even more excited.

We were also pretty excited to bring two younger YEP members to We Day. My little brother, Matt, and my cousin, Kenz, were totally stoked to come with us.

We stayed in the official We Day hotel, the Sheraton, in beautiful downtown Vancouver. The first night we had the Evening of Champions. This was such a great event. Craig Kielburger was there and so was Spencer West. Hannah Alper was there and spoke. And Neverest played unplugged. We had such a great time and got to see a lot of the people we’ve met through Me to We.

We Day Vancouver was so much fun. The performers were awesome. The speakers were inspiring (as always). But I think the best part was seeing the spark to BE THE CHANGE ignited in the younger kids we’d brought to the event. 🙂

Advertisements

We Day Toronto

In May of 2014, I was amazed to learn that I was a finalist for the Canadian Living Me to We Awards. I was even more surprised to discover in June that I’d won the Youth In Action category!! We had to keep quiet about the award until the October issue of Canadian Living came out (boy, was that a hard secret to keep) but over the summer I did interviews with the reporter from the magazine and had a professional photo shoot!

As soon as I discovered that I’d won the award, I knew that Dan had to come with me. There was no way I would have even had a chance to win it without his support. So on October 1st, we flew to Toronto for We Day!

It was an amazing experience. Canadian Living had sent a limo to the airport to pick us up! They put us up in a hotel downtown. The only downer was that our flight was delayed so we missed the Evening of Champions dinner. We landed and went straight to the rehearsal night at the Air Canada Centre. It was surreal. We were escorted to the Green Room where there was a private chef cooking up food for the performers. We got to meet the other winners. While we were in the Green Room performers like R5 circulated in and out of the room. Then we got to go watch the rehearsal and we had a surprise. Kendrick Lamar was the secret guest performer and we were there right in time to see his rehearsal. We had to keep it a secret and not take any photos but it was pretty cool.

Then I had to go with my fellow winners onto the stage to practice accepting our awards. After that we went back to our hotel and tried to sleep, which was pretty much impossible.

We had to be up super early the next morning because I had to get to the event early as I had to go on the red carpet with the other winners. Then we ended up in a private suite to watch the show. The rest of the day went by in a blur. Being on stage, receiving my award and the after party. It was so much fun!

Dan and I still had more exciting things planned for Toronto though (it was our first trip there!). The next day we went to Ripley’s Aquarium and then to the CN Tower. And on our last morning we toured the University of Toronto’s campus. It was an amazing, once-in-a-lifetime trip.

 

Updates from the EAS!

Dan and I did so many things in 2014! I haven’t been very good at updating our website though – we were just too busy.

I’m creating a series of photo-stories to share with you about all the great opportunities we had last year. From hosting our own gala to attending the Pipeline Conference to presenting at the Canadian Student Leadership Conferences to attending We Days Toronto & Vancouver to Epilepsy Awareness Day in Disneyland to doing my first TedX Talk, it was an amazing fall. And that fall just ended an amazing year in general!

It was also pretty tough juggling school work and all that travel (and I’ve been trying to catch up every since). But we had so many amazing opportunities to talk about epilepsy with so many different people. It was really inspiring to talk to others who are dealing with epilepsy in their lives.

We also got to see a lot of new places and learn how to travel together! Don’t worry we are still best friends. 😉

We also started a new initiative in September of 2014: the Youth Empowerment Project. The goal of that group is to help other young people use their passions to make positive change in the world! You can keep up-to-date on that project at http://yepnow.org.

I hope you enjoy seeing all the amazing things we did last year. 2015 is going to be just as awesome!

EAS Gala – February 2014

Penticton Markets – Spring 2014

Epilepsy Pipeline Conference – June 2014

Canadian Student Leadership Conference – Sept 2014

We Day Toronto – October 2014

We Day Vancouver – October 2014

Epilepsy Awareness Day at Disneyland – Nov 2014

TedX Kids BC 2014 – Nov 2014

When Do You Stop Counting?

10626280_10152282817996688_3324760883884889833_o

Yesterday I attended my first We Day with Caitie and Dan in Toronto. This was Caitie’s 4th We Day and Dan’s 3rd so I’d heard about how amazing this event was for years. And it absolutely was just as inspiring as everyone had told me it would be. But yesterday was amazing for another reason: yesterday marked Caitie’s 8th week of no seizures and that is a pretty big deal!

IMG_8584

Someone asked me when we stop counting? When does having no seizures just translate to a normal day? I don’t know. This is the longest seizure free streak Caitie’s had since she turned 10. And right now she is not taking any anti-seizure meds and she came off the Keto diet almost 2 months ago. So we are doing pretty good. No, we are doing AMAZING!

But when do we stop living with that worry that a seizure might come. As awesome as yesterday was, there were little reminders of Caitie’s epilepsy sprinkled throughout the event. I did have to tell one of the We Day producers at rehearsal that Caitie has seizures (although she is not photosensitive). I did worry when she barely slept the night before (due to excitement and a bad cold) that she would overtired on stage. Even she worried a little bit that she might have a seizure in front of 20,000 in the audience (her worst nightmare). Lightening the mood, Danny pointed out that it would be a good lesson in seizure safety if she did. And when I had to find her a seat and ask the hosts at the after party for a glass of water when we arrived because she was feeling off, we watched her closely to make sure she wasn’t going to have a seizure. After only 8 weeks, the memory of seizures is too close to ignore any of those things.

Last weekend after the kids presented at the Canadian Student Leadership Conference, Caitie burst into tears on the ride home. Worried I asked her what was wrong. She said, “I’m just so happy, Mum. Everything is so perfect right now.” Then she paused and took a deep breath before adding, “And I’m scared it will go back to how it was last year.”

And last year was bad. It truly amazes me what Caitie and Dan have done in the last 15 months given the rollercoaster ride we’ve been on with Caitie’s health. In the last year and a half she’s had 65 seizures (that we know of). And Caitie would say that’s not so much compared to some people. But trust me, it’s enough. I think their work with the Epilepsy Awareness Squad has really made all the ups and downs of this disorder a lot easier to handle. Taking the focus off oneself and shining it outward can make even the most miserable moments a bit brighter.

I hope that one day we will get to the place where we don’t need to count the number of days Caitie has been seizure free. But right now, I’m grateful for every one of those days that we do have. And for the positive attitude that makes the EA Squad so empowering!

IMG_8597