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!