Camp and Family, 2014 Edition

As I was driving away from a week, and a place, I've come to call home, all I could think of was how I wished I didn't have to say goodbye. Goodbyes are often the hardest words to choke out, when all you want to do is pull others close.

Camping with a group of others affected by SMA I've called family for 15 years now feels like the most important, carefree week of my life. Each and every year, it is a place of freedom, a place of safety and of love.

I've never agreed with the Dictionary's definition of family as only those who share your DNA. No, family is truly so much more than that. Family are those you choose. The ones who stick by you through the thick, thin, and thickest yet of a messy life. They're the most imperfect people you could possibly come across, and you love them for all of it, never in spite of it.

We share so much of the good and the bad, the stuff that no one else could pretend to comprehend or understand despite the best of intentions.

For us, for that one week, we are inescapably whole and complete. Definitions which the world often forgets to bestow upon us. For that week, eyes do not longer over each other's struggles, other than to define each other's set of strengths. Because, for that one week, those strengths are not measured on a scale of weakness. For one week, we are not alone. We see that, in the glint of each set of eyes. From that short period of time, we carry in our hearts the strengths of each other throughout the year, until we meet again.

Reflection - Sometimes Life Takes Your Breathe Away

I couldn't post this post at the time it was first written. I cried writing it, and was so scared for the future. I just stumbled across it, tucked away in my computer from a scary time. Both of these incredible girls made it through this time, yet again, with strength and dignity. The sentiments written here still ring true. No matter what, I wouldn't wish my circumstances away, and am still grateful for every challenge I have to face, because here I am, and I wouldn't want to be any different.

I remember I was once asked if I had the chance, would I wish I had never been diagnosed with SMA? Not a cure, but simply to never have had it. I was young, and of course, the idea of walking, slow dancing with boys, and jumping on trampolines sounded like the best kind of birthday present a girl could have. 

But today, I would say no.

I have such an incredible support network with people I know from across the world, and I can't imagine going through life without that. I don't know of anyone unconnected to this disease, who can say they have that. This is clearly illustrated each time one of our little ones become ill, and so many wait with baited breathes, whether or not they've met each other once, simply through Facebook, or numerous times. We are still a family. A tree with arms grasping each other across provinces, countries and oceans. We are all connected, and when one branch falters, we all feel it.

That being said, that doesn't mean I love this disease. On the contrary, all I'm screaming within my head right now is "F YOU SMA" over and over. And I'm not going to lie. I'm terrified. When someone I know gets extremely sick, I get so scared and anxious. Baited breathe, eyes glued to Facebook for each and every improvement and update.

TWO of the sweetest, strongest, most courageous and happiest little girlies I know are fighting in hospitals right now, with some extremely tense and nail biting moments. And its terrifying. If most people end up in a hospital, its for a day, maybe two, to get back on their feet. But not if you have SMA, and certainly not type I. A hospital means a hit-the-floor-running fight to stay. To stay here. To stay with everyone who loves them so dearly, and have the opportunity to continue the lives they're only beginning. Beginning. They are not eighty. 

They are four and six. They should not be enduring this, so often, or at all. They are the epitome of beauty and grace. Though they may not be able to laugh as loud, or tell a story the way most little ones can, they adapt so gracefully they transcend the typical societal beliefs of strength, to illustrate how incredibly powerful they truly are. They inspire me to continue fighting, because we all need to. We need to get past this, keep going. One day little ones will no longer have to deal with all of this hurt. I just know it, and if I can see that day, it would mean the world to me.

We're all rooting for you beauties. Gwendolyn and Charlie, sending all our love, from across the world. 

Never give up. Cure SMA.

If you would like to learn more about two of my biggest heroes, please visit:

www.thegsf.org

www.sweetcharlieanneomine.blogspot.com

Welcome to University - A Recap of Life's New Journey

Safe to say my first semester of University was extremely busy, but nonetheless a resounding success. From classes to clubs to writing and friends, I was much busier than I thought could be possible, and ended up taking a bit of a break from this blog. But here I am, refreshed from my hectic 4 months, already in the thick of my second semester at this place I have come to call my home. Where I belong. On top of a mountain, overlooking the beautiful city I dreamt of moving to for so long.

My first semester was so much more than I could have expected. Right from the start when I moved into my apartment in August, I was busy every moment. Orientation started on move in day; 5 exciting days filled with workshops, campus events, and seemingly-endless icebreakers that by the end I began to actually appreciate. After that, school started. I took 3 classes; two intro Communications courses and a Linguistics. A great decision I also made was to step outside of my comfort zone and join Young Women in Business SFU. These women have become like a family to us, and the career advice, mentorship and support we’ve received in immeasurable. I will certainly be involved for years to come with this lovely club!

I also became much more involved with Muscular Dystrophy Canada, with Check Your Head, CANYAP, and became a blogger/Communications Assistant with OpenMedia.ca. A big dream of mine was also to write for a real newspaper, and this goal was accomplished when I had 1, 2, 3, now 6, pieces published in SFU's The Peak. This means, I’m a paid journalist!! Pretty neat, since that’s always been a life goal of mine. I truly have found my niche here in Vancouver, and I can’t wait for all that still lies ahead of me.

Over the semester I made some really amazing friends. I feel so blessed to attract such positive people in my life; of all ages, ethnicities, majors and careers.

I plan to keep up this blog much more this spring and summer, while also taking classes all year round, contributing to so many wonderful charities and non profits with my writing and my time, and making connections I can see already will last a lifetime.

I can’t possibly summarize all that has gone on so far this year with a few simple keystrokes, but know this: it has truly been the best year of my life.

See you sooner than later! For real this time. 

We Are Ready - Our School's Crest

This will be me one day, and I can't wait!

I have a pretty nice backyard, hey? 

I could definitely get used to this whole living-above-the clouds thing!

A Place Like No Other

Have you ever been to a summer camp? As a child, or as a teenager, summer camps provide the opportunity to make new friends, take on new adventures, and experience things you might never have done otherwise. I've never been to the kind of summer camp you first think of. I didn't pack up my things for a week away from mom and dad, room in a cabin with 6 or 10 strangers, rock climb and jump off a dock. But, that's because I've always had something better.

               
SMA Camp.

14 years ago I had a hospital appointment at Children's Hospital, one of the countless I would have over the years. Call it fate, call it luck, there was another family in the same waiting room as us. A girl a year younger than I, newly diagnosed with my same rare (but not really so) disease. We were both little, the size one still "ooohs" and "aaahs" over, especially when you add a power wheelchair into the mix. That chance meeting started something. Something that's lasted through the next 14 years.

               The closest of friendships.
That summer we decided to go camping for a few days; my family, hers, and another girls with SMA who was 4 years older than us. It was simply three families getting together, tents and lots of Barbies, for a few days of relaxation and bonding. The next year, we decided to do it again. That time joined by another girl 4 years older. We continued it again the next year, and the next.

Holli and I; Camp Year 1

Holli and I this year.

Somehow as the years progressed, it took on wings of its own. It was no longer a low key camping excursion, but rather a gathering known by SMA families around the world. We have had a family from France, and from Japan, though most are from North America. Families have attended from PEI, from all over BC and Alberta, from Saskatchewan, Ontario, Washington, Oregon, and Colorado this year. These families come, having heard through word of mouth or through newsletters, of the incredible times to be had at a place like no other.
A place where no matter your age, your abilities, your differences; for one week, none of that matters. We've gone from simply visiting with a small group, eating our own meals, and wandering to the beach when we feel like it, to organized activities, meals for a hundred or so people, and adapted activities and sports of every kind.

Camp 2012

We also have an amazing group CRIS (Community Recreation Initiative Society) from Kelowna, BC, that joins us on the weekends to assist us with biking, hiking, kayaking and ziplining. Can you even begin to understand how it would feel to go from your wheelchair most all day every day, to gliding across the smooth lake, or climbing up a mountain for a 5 hour hike? You may think you can picture this, but you truly can't comprehend the freedom these adventures give us. It may seem simple, but to a five year old who's never seen the view from the top of a mountain, or never been able to ride a two person bike before, it's quite impacting.

Kayaking this year with Holli

I've grown up with this group of people. We started off small, and have become a 100+ person family. Family is truly the only way to describe it. The kids find friends that share their challenges, peers that experience those same awkward or annoyingly pitying looks on a sometimes daily basis. The parents meet, perhaps for the first time, others who go through all they do as a 24/7 caregiver. They get the opportunity to share stories, tears and many laughs with people they can't help but bond with. Then there's us. The older kids. The ones who aren't necessarily "kids" anymore, but enjoy the camp just as much as we did 10, or 14 years ago. We may be looked up at by the little kids, but it's they who inspire me. Seeing a little 3 year old driving around camp like an old pro, seeing a five year old driving full speed while holding his baby brother (the cutest baby on the planet), and seeing three little girls playing out of their chairs as any other little girls would, are what reiterates that we have nothing to complain about. Not really, when there's so much to smile about. All around us.

I could keep writing and writing; describing all the funny stories, the scares, the tears and the laughter, but I fear I would never stop.  I can't even begin to describe how camp makes each and every one of us feel. The renewed awareness of our close knit group out there, the feeling that no matter what, there's always someone else out there going through similar times as us. Our disease does not weaken us, as it may appear to an outsider looking in. No, we are the strong ones.

Because we are SMA Strong.

Showing our Never Give Up and I Can & I Will attitudes in
our Gwendolyn Strong Foundation clothes!

Tears, Smiles, and Mickey Mouse Ears

        Even though I just started this blog, I really feel that I need to write about my trip to California that took place over a month ago. I've tossed the idea around in the air, and now decided to grab onto it to see if it could take shape across the screen in some juste way. The following is not about my adventures meeting Minnie Mouse or Goofy, but rather meeting some of the most incredible people I have ever in my life.
        Warning: It isn't all California sunshine, rainbows and Mickey Mouse ears.

        On June 11, 2013 I left the Vancouver airport and landing at the Santa Anna 3 short hours later with 11 members of my BC SMA family. We were there to spend an incredible week at the Disneyland Hotel, in Disneyland, and at the annual SMA Family and Researcher conference. 

        SMA is Spinal Muscular Atrophy, a type of Muscular Dystrophy that myself and many of my closest friends have. It is "a genetic neuromuscular disease characterized by the degeneration of motor neurons, resulting in the weakening of the muscles in the body," according to wikipedia. What Wikipedia doesn't tell you is that this disease cannot limit us. Not if you don't let it. It can't put us into boxes of "type 1," "type 2," and "type 3" and leave it at that. This is so far from a complete definition. This week with over 1000 people whose lives have been touched by this disease proved that so completely. SMA is very different from person to person, in how it affects people who are told they have the same type. What is often more similar is the way we live with it, the hope we carry, the moments we cherish, and the friends we hold close.

        This was the first year my family attended the conference. This was not for lack of hoping and wishing we could go, it had just never seemed like the right time. This year, it fell during my last week of school, before I had any exams. This seemed like the perfect timing, and when weighing the options, I truly couldn't imagine giving up the opportunity to simply spend my last week of high school sitting in classes. I want to always chose to live my life through every amazing experience possible. 

        Almost every year since before I can remember I've attended the SMA family camp my mom and best friend's mom started 14 years ago now. This is always a highlight, and I expected this conference to reiterate many of those positive feelings we get from our camp. However, it was so much more than I could have ever planned for. 

        We began the conference with a Meet and Greet on the Thursday night. This included all the conferences attendees, large amounts of food, a carnival for the kiddies, lots of photographers, and a relay race between the kids and the researchers. Not only is the Conference an incredible way for families to meet, but also for the hundreds of researchers around the world to meet many of the faces behind all their countless hours in a windowless lab. At the Meet and Greet I had the opportunity to get to know many of the Canadians I had only heard of, through friends and through Facebook. I also met up with many of my good friends I hadn't seen in quite a while - which is always great. 

        On Friday I started my morning with some conference sessions. For lunch we ate with all the Canadians, which number 8-0 this year! An all time high of Canadians crossing the border and representing at the conference. We are all quite close despite the large distances between us. Must just be the Canadian way, eh? After this, we spent the afternoon at California Adventure; I went on my first roller coaster (for the first of three times!), went on Soarin' over California, and many other awesome rides.

        After our busy afternoon/evening at the park, we raced back to the conference centre for the Researcher Poster Session. This was actually such a cool event! Every research company had designed an easy to read poster describing their treatment, therapy, or hopeful cure that they believe will one day help us. They were all very friendly, and really wanted to make a difference with their work. I stupidly took Biology 12 this past year, and by the end had no idea why I decided to take it. However, looking at the posters and listening to the researchers speak throughout the weekend made me actually thankful that I took that horrible class. Suddenly I found myself understanding much of their technical terms, the explanations and the pictures they were presenting. I never thought that class would come in handy, for anything, but now I'm ever so glad I took it! After the session the entire group of us were taken into Disneyland as a whole, over 1000 people, to watch the fireworks from Main Street USA. They roped off the entire middle of the street, and we sat and stood with family, and friends new and old to watch the amazing show as one incredible group. Once the show was over, we decided to stay to beat the lines at the Peter Pan ride, which turned out to be an hour long ordeal, waiting for them to ok the area after the fireworks - opps!

        Saturday was a full day of conference for my family. I began my day much, much to early, with a Zumba class at 6 am. However, I absolutely love Zumba, so it was more than worth it. My best friend Shailynn and I were the only ones who showed up until near the end, and the teacher had never taught it to people in wheelchairs, so it was an interesting experience for all of us. After breakfast we then began the morning with a session called "It's A Wonderful Life" which we had heard rave reviews on. It was a great session, with 5 or 6 adults with SMA simply talking about how wonderful their lives, and ours, truly are. One man had written a book, two of the ladies had children, and one lady was 55 with Type 1 SMA, the type doctors usually say will be terminal around the age of 2. That particular lady loved talking about her sex life, a l-o-t, throughout the day, which was..interesting. As a whole, the session was one of the highlights. These men and women had accomplished so much, and never let any society built boundaries stay in their way. After this, Shai and I attended a Yoga class, which was really interesting. The rest of the day consisted in this and that, the occasional class here and there. In the evening I chose to go with my friend Brooklyn (who has an awesome blog of her own you should check out - http://forthewhitecrayons.blogspot.ca) to the Adult Social. Here we visited with the "adults" ranging from 18 like us to their 50s and 60s. I really enjoyed this event, as it was so great hearing all that these people have done. 

        One of the most incredible parts of the weekend, to me, happened at this Social. It wasn't anything monumental, it didn't come accompanied by fireworks like other events had, but it was so humbling and awe inspiring. A man wheeled his 20 something son up to us to chat. His son was a weak type 1, laying down all the time and unable to talk like you or I would. At first, we thought we were talking only with his parents. But, his dad kept speaking as if his son were. Then, we noticed it. His son didn't have the strength to utter a single sound, yet, he was having full conversations with us, through his incredible father. His dad would ask him something, and the one finger he could move would twitch, "a, b, c, d..." His dad would do a guessing game, of letters, then words. Until his son completed a word, a sentence, and then a story from his day. In this way, we were communicating. And it was one of the best displays of human adaptation and strength I have ever witnessed. 

        Sunday was a hard day. It was the end of the event, and it started with a terrible reality that hit us all in the face, and the heart. We learned that at this very conference, we lost another Angel. We were here, on that day, about to learn about all the medical advances, the treatments in progress, the hope we all had buried deep inside us, but it was too late for someone, yet again. This was so real. Not one eye was left dry in the entire room. Many of us were not sure if we had met this little girl, but as of the day before she was enjoying Disneyland like the rest of us. She should have still been. 

        After this, we solemnly heard about the incredible research thats been going on this past decade, so much of which is so close many people can actually touch it. A few clinical trials were progressing, with results that looked promising. One in particular is something I hope to look into, although I truly don't know if I can volunteer myself for needles, as much as I wish I could use the opportunity to make a difference. The really amazing part of the researchers speaking was that this disease that brings all of us families together, also brings so many researchers with such different beliefs and ideas together. Unlike many diseases, the researchers don't feel the need to compete against each other (as much). They aren't all fighting to find that one drug that will miraculously fix all that is medically wrong with all of us. There's so many aspects to this one disease, that many different companies need to perfect their specific approach, so that it can be taken in conjunction with the other companies' for something to have a truly positive result. This is such a cool thing to witness. Very little fighting between the companies, because they all need each other to succeed. 

       Just like in life, we all need these people; the family related to us by blood, and the SMA families we've grown so close to from around the world, so that we may succeed in our daily lives as well. I wouldn't be half the person I am today if I hadn't grown up with my 50-100 person-big SMA family to lean on.

       I left California exhausted, but so inspired. It was a truly life changing week, in every sense of the word. I left that place in a completely different mindset than ever before. I had the opportunity to see so many people who had done the things I hope to do with my life, things so many shrug off as if it's some crazy dream I couldn't hope to reach. I had a new found yearning to push myself as hard as possible, to gain more and more strength back, because I am so incredibly lucky to still have so much, and to continue to push past all that I've been told I can't do, because I do know I can. 

VanCity Mishaps, Ellie, and the Moonshine Jungle

One of the most incredible nights, ever, was this past Saturday night. My best friend Melissa and I packed my van with too much luggage, and headed to the big city. VanCity. What should have been only a 5 or so hour drive turned into almost an 8 hour drive. With the help of street signs and parents who were reading google maps back at home, we managed to get lost a total of 6 times throughout the one afternoon/evening. For those people who know Vancouver, we were trying to get to Shaughnessy, and instead ended up all the way at MetroTown in Burnaby, and Chinatown, before finally finding our destination. 

But..all the mishaps, wrong turns, and funny stories were worth it, to make it to the gorgeous home I call Canuck Place. 

After hurriedly getting ready for our big night out, we headed to Rogers Arena for the Moonshine Jungle Tour, with Bruno Mars and Ellie Goulding! This was Melissa's grad present, and she was so sweet to include me on the road trip and incredible concert experience. We tried our best not to get lost on the way there, going as far as printing out "trustworthy" google map directions. However, they dropped us off at an overpass, which took us on a nice tour in rush hour traffic above the top windows of the Arena. 

Upon arrival at the parking lot, we thought we could finally relax. Instead, the machine to purchase your parking tickets would not take cash. Only MasterCards, which smart 18 year old girls do not readily apply for, and coins. So, we went on the hunt inside the Arena for $30 in toonies. Upon finally finding these, the machine wasn't accepting that many coins. By this point, you laugh, or you hysterically cry. We chose the first, and I burst out laughing in front of the security team who must have thought I was missing a bit of my sanity by that point..

After that, we finally got to relax, party, and act like carefree teenagers. 

Ellie Goulding started the concert. ELLIE GOULDING! We are both her biggest fans. She performed a lot of her biggest hits for the first 45 mins. At the beginning of the intermission a lady who worked at Rogers came up to us, almost as excited as we were, to take us under the stage, to meet Ellie Goulding! She took us in a private elevator to the level no one else usually sees. Then we went into a small backstage room, and waited.. Longest few minutes ever. We were giggling and shaking so badly. Then, the incredible Ellie, her manager, and her friend came in. We were surprisingly calm, cool and collected. Never once did we mention being her biggest fans, loving her show, or any fan girl stuff. She was the most down to earth person. We got talking about the kind of stuff we would talk about to any other friends. She brought small posters to sign, and joked about how much better she likes her blonde hair now without the extensions and it bleached white. She liked how long ours was, since hers was now permanently shorter. She seemed so in awe that there were people at this concert, apparently the first ever, who had actual "Ellie" signs held up. Then we told her we had travelled 8 hours to see her, and her manager mentioned people actually bought seats behind the stage. She couldn't wrap her head around the fact people like her so much, which is crazy since she's so amazing! Talking to her was incredible; it was so much better than a normal meet and greet with one picture and the typical "I love your music so much." She genuinely wanted to be in that room with us, and that meant so much to us! 

It was Ellie's idea to do funny face pictures too! 

We also gave her a little gift. Melissa gave her a handmade in Enderby that she was excited to hang in her tour bus to get rid of the bad dreams she has according to her manager. I gave her a Muscular Dystrophy Canada bracelet. Part of my email to her manager, along with the explanation that this was our grad present, and Melissa chose to take me and sit in the wheelchair section instead of somewhere else because she went with me, was about SMA and MD. It was so cool that she took the bracelet and put it on before even asking what it was about, and then I explained. Hopefully it'll remind her of us, and her last night in Canada! 

Bruno's part of the concert was incredible too! He's such an amazing performer. There were parts, many of them, where he was absolutely mesmerizing. You couldn't look away. His old school style, dance moves, and charisma are completely unrivalled. A great part of it was his teaching guys "how to pick up chicks when you have a band." Yes, it does work..when you're Bruno Mars! So great. The concert, the night as a whole, was amazing! I couldn't have asked for a better friend to go with either. She doesn't hesitate to help when needed, and knows that I more often than not don't need any. Simply a friend, to be just that. Her friendship is so valuable to me. We had such an amazing time, and I would do this trip together again in a heartbeat! 

Pretty safe to say... 

                      "Everybody's starry eyed, and everybody glows."

...And Here It Begins...

I've tossed around the idea of creating a blog for quite a long time now. A place to call my own, to script stories across the screen, and to lay my heart on my sleeve for people to stumble across.
This idea began to grow roots when I had the incredible opportunity to skype with my favourite blogger extraordinaire, Hannah Brencher (www.hannahbrencher.com) and she encouraged me to explore this particular way of writing. She encouraged me to write, in a way I hadn't thought of before.

People seem to think I have a unique viewpoint in life, and perhaps that may be true..
Through this blog I hope to show my journey through life from a seated position; where wheels are often seen before all else. In a time where people still have such trouble overlooking physical differences, and a time where these differences are so completely irrelevant.

         Welcome to my story.