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Monday, March 31, 2014


I listened in silence to the lyrics. Each note sung held me captive.  I was still so easily reminded of what no longer was, and, perhaps never was.   I was left a prisoner to my undying dreams and hope.  Unable to move, I  surrendered to the sweet melody, as waves of emotion consumed me. Almost overwhelmed with desire and conflicted with the harshness of reality,  I let my mind and heart replay the heartache I walked away from.   Lost in my bittersweet memories, images slowly flashed before me.  Images of a time not to long ago that once gave me hope.  Moments of time spent in another world.  Leaving me now wondering why  I was still brought so easily back to yesterday. 

I wanted to change what I now felt had wronged me.  I wanted to forget the pain I was in many ways  growing accustom to.  Mostly, I wanted to move on.  Move past the hurt and the sorrow that  these feelings I once felt,  had brought into my world.  I did not want the past back but, I wanted the hopes and dreams I had dared to believe in  to lead me, again, fearlessly on a new journey.  

I listened to the only song that could remind me of so much.  The only words that helped me understand why  I walked away, from my past.   In my mind I knew what I did was right.-  Right for me.  But still, something inside left me  hurting.  Left me feeling betrayed by my own emotions.   There was nothing left for me to say or do.  I needed to be true to myself, but the reality of it all meant, I had walked  this journey alone.  From the beginning, my desire  was all I ever had.  Now, here I was listening to the lyrics of a song that summed up everything I had ever meant to say and the emptiness I  heard back. " Say something I'm giving up on you."   

feeling empowered

Smiling he simply asked me to put him in his stander.  Out of the blue without hesitant my Cody asked to stand. I was thrilled and excited this was his own thought this time and not an act of diligent persuasion on my part.  After securely and comfortably  fitting him in his Easy Stand 5000 I began cranking  him up.  Stopping just past the 50 percent mark, hoping, I could raise him just a bit more. He looked down at the straps that I had been adjusting and as though he read my mind, "put me higher mom" he said with confidence.

 At almost 21 years Cody could still tolerate some body weight on his feet.  I was so over joyed  that Duchenne had not yet defeated us in getting Cody to stand. I stopped just shy of a 70 degree angle and looked at Cody's face for an indicator of how much stress he was feeling.  He looked up at me smiling telling me he was good.

Cody stayed in his stander for 2 hours that day.  Standing for several  brief intervals of  20 minute periods  and asking to be lowered for short rest in between.  Not once was a complaint uttered as he stayed engaged in his new Ps4 game.  A small price for  an investment that gave him pleasure during serious vital stretching therapy.   I felt proud and very happy for him,  for us.    More than that Cody had given back to me the feeling that determination could still give DMD a fight and today Cody had a triumph. His smile as he stood let me now he too understood just what he had truly accomplished.

Saturday, March 8, 2014

the art of dating

His hand reached out to hold mine as I spoke.  Soft and gently he covered my hand with his, while his warm smiling blue eyes gazed into mine.  Attentively in a thoughtful silence, he sat across from me, listening as though he wanted to savor every word that  I spoke.

I began telling  him a story  about my son Cody.  A story that happened almost 6 years ago that really challenged and changed me. It was a time in my life that I found demanding me to dig deep with in myself, for answers and strength.    Strength to help Cody over come the fear and sorrow that had attempted to claim him and begin controlling his emotions.  It was a time  when I struggled searching for answers that would help convince Cody and myself that even in sorrow there is joy and that every life has a purpose to fulfill.  For just a moment he let go of my hand to remove his glasses.  I watched as he wiped  the left corner of his eye, where I could not help, but notice, a  single tear had formed. With out a word he dabbed at it and just as quickly placed his hand back over mine with a gentle squeeze.

His glasses I noticed he left laying next to where he neatly held my hands. I paused momentarily and asked if he was okay.  His face only softened more as he smiled back at me with moist eyes.  "Please" he said "go on".    I finished telling him this was a  time shortly after Cody had stopped walking. It was a time in our world where we had to learn to accept the rest of Cody's  life would now be spent confide to a chair.  A chair with wheels and that was just the beginning of the muscle loss to come. As I continued on with my story  I noticed his  eyes stayed fixed on my face.  Occasionally he would ask a question and then fall back  to  listening to me  as I answered.  I finished telling him that the place that Cody had fallen into almost 6 years ago, was a place so deep in despair, he literally had said he had no reason to keep pushing himself.  Eventually he  said, he wanted to stop going to school.   As his mom my heart broke to see him  quit on himself, to give up.  As a realist I understood where he was coming from.  The reality and the harshness of the world that surrounded us then did nothing to help combat the devastation we were facing.  In reality my  two youngest children  had an expiration date that unlike most of us would come far to soon.  But, only after years of pain and suffering.  Only after spending years trapped in a chair,   and becoming totally dependent on assistance to do things as simple as scratching their chin

It was then, almost 6 years ago, that I decided it would be up to me to help Cody, and myself, see past the ugliness Duchenne had presented our world with.    I ended with telling my blue eyed date  that Cody not only stayed  in school, but, that Cody had graduated last year with honors.  Something I never would have imagined  my son, with a cognitive delay and terminal disease would achieve.  Squeezing my hand he asked how I could speak from the heart with so much passion and   so eloquently and not once  let go of my smile while speaking.  So very simply I told him" my smile" is my shield.

After his eyes had dried and we shared some more stories, with laughter, about our children he asked if I would kindly honor him with another  date. Smiling, I said one of us should bring tissues just in case. With that, he leaned into whisper in my ear, thank you. Then  he embraced me. As we separated I  stepped back to  look once more at his face to say goodnight,  and quickly noticed, where  I had seen tears forming earlier in his eyes there now was a little hint of sparkle.

As I drove home that night from my dinner date I realized it  had been quite sometime  since I had  been on a date that was  so genuinely  focused on learning about my life in the hopes to know me more. I am not sure I had ever been out with anyone who thanked me for sharing so much of my world with them.