Today is August 26, 2013. Two years and two weeks ago (August 12, 2011) my daughter, Ella Sabine Casten, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2. A life changing event for our entire family.
While SMA ravishes the physical body, it leaves the mind untouched. And oh what a mind it is! Kids and adults with SMA are very bright; very intelligent. The ability to adapt to a disease that methodically deteriorates their muscles, leaving them weaker as time goes by, is highly admirable...to say the least.
As SMA challenges the individual to perform daily tasks, their tolerance for frustration remains high...they persevere and fight, struggling through what amounts to extremely demanding activities; and they always perform these activities with a determination unmatched.
Within the world of Spinal Muscular Atrophy, those afflicted would have just cause for viewing life in general as a cruel joke...; they do not. The captivating personalities of people with SMA is nothing short of miraculous. They naturally draw people in, bringing lightheartedness and a sense of peace to the relationships they form. They elicit the help they need not so much by the asking, but rather by the love that so freely flows from their souls.
Being a father of a child with SMA has shown me a part of life that I otherwise would have never known. Compassion for my child closely coupled with inevitable thought of her demise pulls my emotions in directions formerly unchartered. Desperation for a cure, even a treatment, coincides and clashes with the reality of SMA we face day in and night out; repeatedly.
Caring for my children has become an endeavor of not only love but also one of captivation by their very presence. I realize that the moment we have together is the only moment of its kind...it's precious and fleeting...as is life.
I created a video to honor the fathers who care so deeply for their own children who are afflicted by SMA. Some dads in the video have lost their child(ren) to SMA. Some dads are in the thick of the journey. Yet, still others have raised their children and helped them attain adulthood despite the odds against them. As I put together the tribute I saw the images that were sent to me several times over. I noticed that despite the fathers' experience with SMA, one aspect rang through as a common thread...
I invite you to find that thread...
