I knew better. Yet somehow I still allowed myself to become lost in the hopes that my silly romantic dreams would help me through another Labor Day weekend. I stood on my dock peering out to the water. The lake was quiet except for a few families of ducks that swam peacefully in front of me. Pearly white Water lilies danced at the ends of my dock giving the appearance of a floating flower garden. I wanted the calmness of this moment to absorb me, almost begged it to swallow me. Beads of sweat trickled down from the nape of my neck and an occasional breeze gave me a slight cooling sensation where I had pulled my hair back in a knot. I was beginning to feel a slight sting on my bare shoulders from where the sun had beaten down on me earlier, while I had pulled weeds along the shoreline in hopes to keep myself busy and not think about the the MDA and Labor Day . I turned and looked back at the yard feeling a sense of pride as I surveyed the land. I knew I had found a good place for my sons and I, and it pleased me. I had managed more than I had thought possible at one time. I alone had given us a home that we could feel proud of. A home that offered my physically challenged sons comfort and space. I had also achieved an Independence in many aspects that left me feeling at most times very self satisfied. Sighing I wondered though, would I ever get past the feelings that threatened me now, that left me aching for more. I was alone, fighting a flood of emotions that eagerly clawed at me. I wanted desperately to feel anything except this sorrow that I found my self slowly surrendering too.
I had made a futile attempt earlier in the day to workout. Until my arms ached and I felt callouses forming on my hands I vainly attempted pull ups on my new pull up bar, I had assembled and installed in my bedroom door way. With the suggestion of my masseuse and hoping to prove I could defy some effects of aging, aided also with the need to feel physical pain rather than mental anguish left from remembering Past labor Days and what it has come to mean to me- after waiting a half a century for a cure for Muscular Dustrophy, I worked my arms. With my music pounding I tried to get lost in building muscle. Muscle I had accepted long ago my two younger sons would never gain and some day lose completely. It was that very thought that broke my drive and sent me looking outdoors, with my dog at my side, in search of a diversion. Having broken a slight sweat and still needing something more intense to capture my mind I carried the music outdoors. Determined to drown my thoughts I tore at weeds that had crept along my fence. I ripped and pulled cursing under my breath each time a verse in a song would remind me of all the things I longed for. Several hours later I finally found myself standing on my dock looking back at what I had managed to clean up. I stood there, feeling pleased with the physical work I had accomplished and barely aware of the small beads of perspiration that was now decorating parts of my aching body. With my thoughts once again free it wasn't long before tears silently slid down my dirt stained cheeks. There I was, desperately wanting to get past the sadness I was now feeling. Tired of waiting and hoping, tired of feeling defeated and angry that all the strength inside of me was no match for the magnitude of what was ripping at me now. Feeling a bit angry that I had fallen victim to my own sorrow.
I cried. I simply gave in. I surrendered to tears in the hopes that letting go, would release me in some way. With nothing else to do I cried. I also wept because facing this alone simply did not matter to me any more. However this Holiday was not about me. This was a weekend that throughout my entire life has been about all the brave young men and women who like my sons face a devastating terminal disease, every single day. A disease that will slowly and painfully take their lives, but only after years of imprisoning them in an immobile body. This was a time of year, I had long ago accepted, would always be a reminder to me of the immense pain Duchenne brought and the loss these young men struggle with. And with that acceptance I will have to live with knowing that this pain will deepen, leaving me feeling broken and completely consumed with loss. Quite simply there is nothing I can do about it. As hard as it is for me to accept - I know now I am at the beginnings of surrendering to the next phase of seeing my sons lose in this battle. But I will as usual focus on today and rejoice, I have them here with me today.
So this Labor Day Please remember MDA and "A Show of Strength" and give, we need a cure now.