-- We can beat the odds, we're a miracle. --
Saturday, August 10 was SMA Candle Day. To honour those we lost, and to celebrate those still fighting Spinal Muscular Atrophy, we light a candle every year at 8pm wherever you are to reflect on our fight.
This year was my first candle day away from home. I was in Dublin, a beautiful Irish city around 100 miles south of my home. While my holiday blog is yet to come, I wanted to show you the candles that were lit for SMA and to show you another hug picture.
Jason Reeves is a fantastic, soulful musician. His song Infinity to One talks about finding that one true soulmate, and the odds of you knowing and surviving together.
For me, it talks about the odds of being 23 with SMA. It puts all our hopes, fears, dreams and nightmares into a song. But I've learnt to ignore the fears and nightmares, so all I hear now are the hopes and dreams.
I heard of a lady with the intermediate form of SMA living to be 53 last week. I'm aiming for beyond that. I have a family friend in his 60's. It can be done. I will try to do it.
Abbi Bennett is a beautiful young girl with Ullrich Muscular Dystrophy. A gust of wind can knock her over. I wanted to share this picture of her and her daddy, Gary. The candle we lit wasn't just for SMA, but everyone with muscle disease. I reflect on everyone. We are all in this together.
With that said, many people lit their candles right around the world. You can see these below. Each was lit in memory, or in honour of a special person. Eleri holds her own candle in strength with our community, just as I did with mine.
Look at these candles and know that even if we are destined to fight our whole lives, we fight together.
Another candle day has come and gone. Our fight continues.
No comments:
Post a Comment