Over the past several weeks the ice bucket challenge has flooded social media. It has proven to be a remarkable way to raise awareness for a difficult disease and in the process has raised a tremendous amount of money for research. When I first heard about it I must admit I thought it was kind of silly. What did pouring water over your head have anything to do with ALS? And why did I have to continue it by nominating 3 more people? When would this ever end? I did the challenge, of course, as did the rest of my family. We actually had fun doing it and sharing it with our friends on FB. We made a donation as well because after all ALS is a rare and devastating disease and deserves all the funding and support it can get.
About a week after I did the challenge and the excitement of dumping water on each other died down, I watched a video about how the challenge was started. It was an incredibly moving video about how this young man in his mid-twenties was suddenly struck down with ALS. His name was Pete Frates and he went from being a star baseball player to a young man confined to a wheel chair and a prisoner in his own body. In the video Pete said, “ Ok, here is what we are dealing with lets go to work.” Pete clearly made a choice and decided to make his fight matter. On March 2013, he went in front of the FDA. He said,” I ask of you lets speed up the process, lets work together, lets get this disease a thing of the past.”
What struck me most about this video was that here was a man who had every reason in the world to wallow in self-pity; to give up and give into this disease. He could have chosen to only think of himself and how the disease would affect him but instead he chose to turn this tragedy into something bigger than himself. His close friends and family clearly felt his spirit and his energy and began a movement so huge that it has spread like wild fire. Pete Frates turned his tragic luck into something so moving, so inspiring and quite simply so beautiful that people felt compelled to follow his lead.
It made me think about the Lotus Flower………
The day my daughter was diagnosed with Smith Magenis Syndrome was the worst day of my life. It still amazes me that I can remember every single detail of that day. I remember what I was wearing, the weather, what I ate, and even what my kids were doing that day. What I also remember was what I had said to my husband shortly after he delivered the horrific news to me. We were driving in the car and we really had no idea what to say to each other. We were both in total shock. I looked over to him and said, “Someone just dumped a bucket of shit all over our house. How in the world are we going to clean this up?” Of course, he had no answer other than we will do whatever it takes. (I would later come to realize that my analogy was actually wrong and that Sydney would ultimately give to us more than we could ever give to her).
For years I have thought about the statement I made and although it was crude it truly expressed my thoughts at the time. It was life changing and it carried with it a darkness that I feared. I thought I was never going to be able to “clean” my home because what happened to us was permanent but I knew I had to do something special; something that could bring beauty to our lives. A few years later I co-founded the Smith Magenis Research Foundation (SMSRF). The only organization that is 100% dedicated to raising money for research into this complex and extremely challenging syndrome. Our logo is the lotus flower. There are many different interpretations of the lotus flower; however they all share one common theme. In the simplest terms the lotus flower represents something beautiful growing out of something murky and dark; it is a rebirth. Every year I reach out to my friends and family to help my lotus flower grow☺ and to date we have raised over $350,000 and a tremendous amount of awareness. Check out our website at http://www.smsresearchfoundation.org
I never really gave a second thought to the lotus flower until I desperately needed to find beauty out of seemingly endless darkness. Peter Frates needed to find his lotus flower and his search was so powerful that it challenged strangers to take notice and get involved in funding and nurturing it.
How about a new challenge? Not one you necessarily need to share with others but one for yourself. When life spreads a darkenss on your house what will your lotus flower be?