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Friday, August 29, 2014


I drove around tears freely falling with only one thought.  I can run, I can hide but when the day is done  reality grabs me and captures the very essence of my being.  Challenged I take one step forward and face the world she has brought to me.  I can be as tough as nails as cold as ice and there is one thing in this world that breaks me down, dropping me to my knees.  DUCHENNE.  My enemy, my life mate, my fear above all fears. The one thing that has been  constant in my world, the one thing that controls my life.  It dictates my emotions, my thoughts, my hope, my dreams and the way I see the world.

Where ever I  go whatever I choose  to do it is  Duchenne that decides how its done, how long I have, what the outcome may have and the choices I need to make to make it all happen.  I am lucky I have strength and the belief in myself to use my  courage to face failure.

Saturday, August 23, 2014

Labor Day has a special meaning for me- as it approaches carry this thought

I watched you walk today.  So effortlessly your feet seem to move with every step. Your legs  so perfectly  shaped  moving as though they were weightless.  I watched as your knees bent slightly  as each  foot rose,  just above the floor, then straightened again.  Your legs defining the lean healthy strong muscles of your calves. So powerful as they supported the weight of your body.  I followed with my eyes  as you moved past me, almost as though you floated in the air.

Closing my eyes I tried  to envision how it felt to stand.  To have the use of my own  limbs back again.  Opening my eyes I looked down at my now almost useless limbs.  My legs motionless, locked in a semi-bent position.  I glanced at my feet slightly turned inward, motionless too, resting on the foot rest of my wheelchair. I imagined myself moving them.  Freely moving them, standing on them.  It did not matter how hard I  tried they hung lifeless, attached to me.

I watched as you bent down.  Your knees skimming the floor slightly  as you folded yourself almost in half.  Just as effortlessly you were standing erect  in front of me again. What did it feel like I wondered, to have your body fold and unfold. To engage in twisting and turning with out someone maneuvering you from position to position.  What  did it feel like to lift  your feet up and down as you moved form place to place.
What did it feel like to stand, to walk to just move your leg slightly without assistance.

I watched as you brushed a strand of hair from your face. I followed the motion of your arm that led up to your perfect hand. Your arm exposing the slight curves of  muscle moved as though it took no thought to perform this function.  I was in awe as you scratched your nose freely with slender straight fingers that moved with ease.

I lowered my head in an effort  to help my hand  reach my chin, to scratch it.  I was unable.   I had accepted the fact long ago  that my nose was out of reach, for my weakening arm . Now I would have to accept my chin was also no longer in range for my hand.  I marveled at the swing of each of your arms, as you raised them to reach and grasp at things.  I shut my eyes and tried to remember the last time I successfully reached for something, anything.  My mind was blank.

You smiled at me and slowly bent down to embrace me.  I felt my self bask in the warmth of your beautiful useful arms.  I wept silently inside.  Not because I  could no longer scratch  my nose or even stand.  But because I wanted to wrap my arms around you and  hug you back in return.

Friday, August 22, 2014

a moment to late

I simply did not make it to Cody, in time.  I sensed the disappointment, even be fore I  opened his door. He laid there with his head turned as far as he could, away from the deposits that now shared his bed.  He laid there, half on his side desperately trying to assure me he now felt fine.  Thankfully, after assessing him it seemed most likely to be a case of acid reflex.  My anxiety level lessened, slightly.

I had heard his call over the monitor, but I was slow in my  response.  I had moved like a snail  up the stairs, because I suffered from my own fatigue and personal weariness, of events from the prior night.  I felt a bit annoyed with myself,  that my haste in coming to his aide, had caused Cody  to lay in extracted composits from his stomach.  I needed  Cody to know  he was no more to blame for the mishap than I.   We simply were fighting something much bigger than the two of us, and all we could do was cope with each and every unfortunate situation as it arises.  What we were faced with now, was the task of getting him out of bed, with as much ease as possible and cleaning him and  his bedding up.

I repositioned him slightly, while trying gently to pull his pillow case and sheet from underneath him.  His big brown  eyes followed me as I worked.  Quietly he whispered to me "sorry mom."  I could hear the sadness  in his voice.  He needed  reassurance, that I was not  upset by the unpleasant start of our early morning. My heart ached for him.   I understood the sullenness the moment brought him.  He was trapped.  Imprisoned in a body that  left him helpless, especially  at moments like this.  He was living with a disease that showed no mercy and  that fought to strip  him of all pride, fraying any  shred of dignity he may have somehow managed to hang onto over the years.

I felt worry and exhaustion both grasping at me. Not to mention, anger.  I was happy Cody had not choked or inhaled any of the vomit. Yet,  I  felt my anger at this debilitating disease, that never ever  lets up, grow even deeper with in me.  This disease  continually stole from us, without hesitation.  As I worked to clean up Cody, a silence embarked on me.  It  was becoming all to real,  I was losing in this fight.  Right now,  I could not bare to have Cody  see my own surrendering, to the devastation Duchenne presented to our world.

For the last few weeks Cody had been questioning me regarding the use of drugs, depression  and suicide.  He had made several comments to me, letting me know he struggled himself with finding an inner peace.  He was also angry that his disease prevented him from having the opportunity to  act out his anguish, if that was what he so chose to do, in regards towards losing his Independence and accepting all the limits his world held.  Simply put, he was feeling a deep  sense of loss and was struggling  with his emotions.  His disease, he said was stopping him from acting out his hurt. I embraced the fact he was honest with me. But my heart broke, for the pain he carried with in.

  I had spent a good part of the night struggling with my own acceptance, of letting go of old hopes and dreams.  Feverishly, trying to make sense of this journey and the direction I was now choosing to follow.   Desperately, now as I attended to Cody's needs,  I wanted to help us both  feel some peace of mind.  But inside,  I had nothing.  I was worn and felt beaten down.  I smiled and did my best to comfort Cody. I did somehow manage to  help him to move past his battered pride and sadness, for the moment.

But, as the day wore on it  was my eldest son  Zach, with his strong embrace, understanding and his loving words that helped to  pull me up right, when I  needed it.   So for right now, in this life today,  when it comes down to living and thriving for me and my sons,  I  have no time to be anything other than strong.  Because, nothing is ever worth the cost of giving up.

Monday, August 11, 2014

in the presence of terror or not

A fear that I  had never known before swept over me.  My heart pounded wildly as panic swirled inside me, leaving me unable to think or move.  All rationale left me as the horror of what was now happening ripped through my mind.

The stench of his breath almost smothered me as he spoke in a low  deep hoarse whisper  in my ear. "Don't  move", he ordered me as his grip tightened around my throat.  He smelled a combination of stale tobacco and musty perspiration. His hands felt calloused and hard.  I clawed at his enormous fingers, desperately trying to pry them away.  He held me tight, quickly shoving me toward the wall as though I was weightless.  His huge body blocked my view to the street and formed a wall in front of me, almost keeping me from being  visible.  It  did not help that the dark corner of the shelter where he had now  backed me into, created a shield from the  traffic that I could hear off  in the distance  to the side of me.

  His thumb pressed harder into my slender throat as I tried frantically to fight his grip.  Quickly  he shuffled me even more into the corner of the semi enclosed cement bus shelter.   My  eyes darted at an open spot past him,  hoping and  searching for anyone to help me.  It was only half past  9 and yet the street  in front of me seemed void of any night  life.   I had waited so many nights before at this exact  bus stop, that usually bustled  with other riders.  This highly used  bus stop  was alive with human life on most any given night with the frequent stop of buses.  How could this place, with out so much as a moment of any kind of  threat before, now be a place that  posed  harm to me.  I  could see the slight shadows of human movement not to far from where I was imprisoned. Why was it that no one was seeing him, or entering the shelter, I thought in my panic.

A smile slowly crossed over his face as he looked in  my eyes, almost as if the terror  he could  now see building  in me pleased him.  I tried to raise my knee towards any vulnerable parts of him, in a failed attempt,  to help free myself.     I had not even been aware of  his prescience moving toward me, and with in seconds, before I  knew what was  happening, he  was holding me captive. He was unaffected by my pleading to let me go and seemed determined to hold me at his will.  I felt helpless and overwhelmed with terror.

  My heart raced as I became aware of  the faint sounds of voices not to far off.  I spotted a figure moving across the street as I  lowered my eyes to peer under his raised arm .  Some where from deep with in me I released  a shrill loud desperate cry for help. Hoping and praying some how I  would be heard by someone not to afraid to help me.    I fought to hold back the choking  sensation  from the pressure of his hand against my wind pipe, knowing that this may possibly be my one and only  chance to free myself of  the danger he presented.

His grip lessened momentarily as I  screamed.  He seemed somewhat startled by the sound of a voice answering back that appeared to now  be moving towards us.  A strong male voice, loudly calling out to me " are you okay"?  With  a force so determined at that exact moment I began pushing against my attacker, making enough headway to move slightly into the dim light that  the shelter offered, while still screaming for help.  My only thought was to get away from him. As the voice came nearer my captor slowly  dropped his hand from my neck, but just  before  he freed me he whispered softly in my ear "Next time be more careful honey, it might not be me stalking you".  With in seconds just like that he vanished.

The kind man who came to my rescue asked if I was fine.  As I  assured him even though I was  rather  shaken up and my neck ached I had  not been harmed.  He kindly  insisted he wait with me till I was safely put on my bus.  Still in shock and only vaguely aware of my emotions, we waited together in silence. As my bus pulled up I  thanked him.  He gently touched my shoulder and told me to  feel proud, I had did exactly what I was suppose to do.

I sat near the front of the bus blankly looking out the window. Trying to collectively calm myself and work through all that had just happened.  As we pulled to the next stop, I held my breath as I began to feel  myself tremble.  Looking out the window silent tears slowly rolled down my cheeks as I noticed a  large tall figure standing almost in front of me, just blocks away from where I  had been. With the same slight smile,   he raised his hand to wave to me as the bus began to pass him, then he turned as though he was waiting for someone coming towards him down the street.

Later that night as I laid in my  bed  I could not help but hear the words over and over in my head  from both men "I did exactly what I  was suppose to do" and "next time be more careful honey".  As I  anxiously waited for the rescue of sleep  I  struggled with one continuous  thought.   I could surrender to my fear or walk away with something more useful.