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

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!