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.
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:
