This Sunday I will be running my first marathon in an effort to raise money for The Smith Magenis Research Foundation. SMSRF is a 501(c)(3) not for profit organization that I co-founded in June 2010. Our mission is to support research to improve the knowledge and understanding of SMS so that viable therapeutic options can be developed to improve the quality of life of those with SMS. For further details about the syndrome please check out my blog at www.strengthforsydney.org/what-is-sms/
I remember September 5, 2007 like it was yesterday. It was the day I discovered that my daughter has SMS. I felt paralyzed and overwhelmed by the severity of the disorder. But more than that I felt alone. Since no one I knew had ever heard of it, I felt stuck. My options were unclear and I began to feel trapped by the limitations this diagnosis had put on both Sydney and our family. I had no idea what to expect and as a result I lived in a state of fear.
For the next few months that feeling of paralysis controlled my life. Sure I moved everyday, but only because I had two other children that needed me, otherwise I remained preoccupied by my fears and exhausted by my despair. Slowly but surely my inertia was consuming me and I realized that I needed to start moving again or this diagnosis was going to destroy me. Pre-SMS I lived a very active lifestyle and exercise was a huge part of it so I thought if I could force myself to re-engage in some kind of activity everyday that slowly my life would begin to move in a forward direction. However, I simply did not have the emotional or physical strength to do it. I had lost a great deal of weight, my sleep cycle was off and I felt an overall weakness in my body and soul. I actually never appreciated how exhausting it was to feel sad.
I don’t remember exactly when but one morning I literally forced myself to step back into my old routine. The one I had before the diagnosis. I made a conscious effort to eat and then I drove myself to the gym. I continued with this routine for the next few years while simultaneously coming to terms with the new challenges in my life. I now viewed exercise as a stable force in my day and sure enough I began to heal.
As time passed too many obstacles and too many questions remained unanswered about SMS. I was at the mercy of a disorder that was so rare and offered me very little in the sense of a real direction or future. An organization dedicated to funding research for SMS did not exist. My fear of the unknown was stronger than my fear of failure and it was then that I knew we needed to create a foundation to advance our knowledge of this complicated syndrome. I understood that we were entering into unchartered territory and it would not be easy but I felt a strong need to take on the task. To learn more about the SMSRF please check out our website at: www.smsresearchfoundation.org
A pattern formed in my life. I found myself looking for challenges in order to either distract me from the pain or to help me to feel that forward momentum in my life. Either way it kept me from wallowing in my own self-pity. It led me away from doubt and hopelessness and into limitless possibilities and expectations. I no longer felt afraid of what I did not understand instead I found myself saying, “Bring it on, and let’s see if I can do this!” And it was this new attitude that led me to running.
I always admired runners and always wanted to be one. Many of my friends were runners and it was something that I always assumed I would never be able to do. I grew tired of accepting the limits I put on myself and one day I decided to try it. I ran to the end of my block and every ounce of my body hurt and I came home. The next day I ran a little further and so on… I was determined to be a “runner” and it quickly became something that I needed to do. I focused a great deal of time and energy on running and although I met many obstacles and limitations along the way I kept with it. Running offered me a chance to recover, a chance to focus on myself and my needs and a chance to rebuild my spirit. It was a challenge to face everyday and I looked forward to meeting it.
On Sunday November 17, which also happens to be global SMS awareness day, I will take my running to the next level and run a marathon. It is a perfect test of endurance and determination and a symbol for how I live my life. I will not be defeated by special needs and although everyday I face challenges, when the day is over I feel good that I persevered. The most important thing I have learned from being faced with something less than ideal in my life is that movement (of the body and mind) is the key to survival.
On Sunday, the one thing you can be sure of is that while I am running my 26.2 miles, I will without a doubt be running past my fears through my limitations and beyond my expectations.
Strength is a matter of the mind made up…