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Sunday, October 20, 2013

a shared event

I was surrounded by smiles and laughter.  Feeling especially happy to be  enjoying  a night out with two of my three sons and a few  friends, who also were able to attend the nights hilarious  performance of " Sideways Stories of Wayside School.   We were part of a small crowd with a rather intimate yet casual setting that made a full circle around the stage.  I could not remember the last time my sons  had been  seated in the very front row, with their wheelchairs, for any event.   With just an isle between us and the stage,  it almost  felt as though we  ourselves, were part of the  cast of characters.

 Occasionally soft laughter escaped from my sons, Josiah and  Cody along with their friends as they watched the play.   I peered down a few seats off to my side, to the row in front of me, where my middle son Cody sat in his wheelchair next to his friend, Kayla.  Feeling very  happy, he was able to enjoy a fun  night out with good friends.     Ever so sweetly I watched as Kayla reached over to place her hand in Cody's.  I was momentarily overwhelmed with my own  happiness as they sat with their hands locked, watching the play.  A  triumphant moment to me,  that they shared, unknowingly.  My heart filled with joy instantly to see Cody experience a simple pleasure of being a young adult, sharing a special moment  with a female friend. A quote as we might say "normal" moment, many of us in the DMD world dream of our sons having.

Not to far off  from where we were gathered  to my left, another family sat.  A young teenage boy in a wheel chair, accompanied by his mother and  a young girl most likely his sister.   It was not the sight of them that had drawn my attention, but rather the occasional sounds that escaped from the boy.  It was very apparent he too was enjoying the play as much as we were. His enthusiasm came out in little sounds that were discreetly attempted to be  quited by his mother. While still basking in my own joy of watching Cody and his beautiful friend I could not help but once or twice glance over at this other family. I was feeling some what  drawn to this mother, out alone with her two children.  Most likely just wanting to offer  them  a night of enjoyment out. Some family time spent  together away from home.  Each time her son would make a small chain of  snorts or chuckle I could almost feel her anxiety, as she  diligently tried to coax him into silence.   I could see his sister slowly shrink behind her mother, as if in someway perhaps attempting to hide in  embarrassment  as he would vocalize his emotion.   A part of me so desperately wanted to somehow let this  mother  know I understood the anxiety she might be feeling right now, as she  tried to shush her son.  So many times I too  had also been in similar situations, when my own sons did not exactly act in a way that would be socially acceptable.  Cody and Kayla both were  expressing their own enthusiasm for the play, in occasional burst of laughter and words of cheer. 

I looked around the theater to see if there were any people  who openly displayed discomfort in being in the presence of our special children,  after all this private performance was for HOPEKIDS and family and friends of the actors.  As I expected I saw none.  The wonderful cast  continued with their delightful performance unaffected by our jubilant attention.  In my heart  I still felt so deeply for this mother and the discomfort she seemed to feel.  Just like her, I was there wanting too spend time with  my sons in  an entertaining  activity.  I offered a smile from across where I sat.  Hoping that somehow if at all possible she could feel some comfort.  Like any parent with a special needs child it is not an easy task in taking them on an outing.  This mother undoubtedly had her own struggles in bringing  her son out and  she had my admiration for loving her son enough to share him with us.


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