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Saturday, August 31, 2013

surrendering to Labor Day

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.

Saturday, August 3, 2013


So fast and swift the eagle swooped down, snatching the baby duckling with its hungry claws.  I stood frozen trying to comprehend what had just happened before my eyes.  The loud devastating cries from its mother tore at my heart.  In a blink of an eye with out warning  her precious offspring had been snatched from her.  I watched in sadness as she floated in circles flapping her wings and crying out to her duckling as he flew further further from our sight.  As helpless as she, I stood, only able to watch, as natures unrelenting cruelty of survival played out before me.

I turned to my new found friends,  who had delighted us by visiting my sons and I this afternoon at our home, as unexpected as I, they watched too, in almost disbelief.  With few words needed,  we shared in our sorrow.  Unable to turn away from the lake we watched as several other ducks  swam out to the grieving mother, encircling her as though offering comfort in the only way they could. 

Later that evening as I looked out from my deck overlooking our small lake my thoughts were brought back to the memories of what had happened earlier that day. Sadly,  I watched as a mother duck took a leisurely swim with ONE  baby trailing behind her.  My heart sank again,  as I recalled the events that most likely was the cause of what I was now seeing.

I stood feeling almost connected to the sense of loss, I imagined what that mother duck had endured, and the acceptance that she was now forced to face.  An unforeseen enemy had unjustly stole from her. Tearing  her world apart right before her eyes.  Helplessly she was forced to watch as the life she had brought into the world, cared for and loved was cruelly ripped from her with out mercy.  Leaving her broken, her dreams shattered, alone and grieving.  Now facing the arduous journey of moving past loss and devastation, picking up the pieces of her shattered world and moving forward.  Accepting, adapting and surviving tragedy.

I thought momentarily of the wonderful enlightening conversation I had shared with my new friend earlier that day about our sons living with Duchenne Muscular Dystrophy.  How blessed I felt having connected with other mothers who understood so well the sorrow and joy this life brought us daily.  The unrelenting helplessness we battled with in ourselves as we are forced to watch our boys be viciously attacked by a monster that  has no mercy.  The acceptance we have grown accustom too as the disease slowly ravishes every muscle with in our beautiful boys.  The hurt and sorrow that consumes us at times threatening our very own existence as we are forced to accept the inevitable.

Standing there  watching the mother duck swimming with her duckling I have to say she reminded me slightly in some ways of a  Duchenne Mother.  The courage she had to find to take the last of her brood out to swim.  The strength she undoubtedly had to find with in her self to overcome her grief and the acceptance that this event  was beyond her power to prevent.  That by no fault of her own this had happened to her baby and that somehow this was part of plan that she had no control over.  I still felt very troubled by the fact that  in order to make this world work- suffering and pain is so very significant, to this big divine plan.  A plan her nor I can fully  comprehend but have  learnt to accept, with courage and dignity.   I embraced  remembering  the circle of friends that was formed around this mother duck almost instantaneously as she cried for her baby.  The comfort her friends seemed desperately to want to  offer her.

As my thoughts slowly shifted back to my world I tried to focus more on the connections we have to each other in this world.  Alone in my thoughts I wanted to some how savor the gifts we are all surrounded with.   Most desperately wanting to grasp on to the blessings I have been overjoyed with myself amongst my sadness-if possible.    Clinging to the idea of joy in sorrow, once again-finding that to be my foundation of coping.    I was still feeling so very connected to the mother duck because of the strength she represented.  I also felt comfort knowing, I am  truly blessed to have found a few special friends  that even in the midst of their own anguish or sorrow, can still find time to extend support and love when I  need it most.