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Monday, December 14, 2015

chapter 3 the scrape


The smell was like nothing he had ever smelt before. He remembered back to his early college years. One summer while on a hiking trip, he joined volunteer forces to help dig out some lost souls that had fallen victim to a mud slide along the edges of Yellowstone National park in Wyoming.  It was right then when he decided he wanted to help save lives and that fall he switched his major to the medical field. It was also then that he first learned the poignant smell of rotting flesh.  He discovered first hand how it  could make even the strongest stomachs churn, and that was exactly what the smell reminded him of  now. He felt  nausea from inside rising upwards fast. Quickly he covered his mouth with his hand as he  looked around the open cell door. Swallowing hard he fought to keep the contents of his stomach intact. His heart racing as he took in the horrific sight. He felt motionless as he stood in dismay.  Blood splattered a small portion of the walls. His eyes traveled down to the the floor  to  pool of blood.  Next to that laid something that resembled some kind of carcass.  No, wait.  He focussed his unbeleiving eyes, it was a body, a human body.  He stepped closer, inside he trembled with gut wrenching terror.  His mind  fighting to accept the site before him  was in fact real. He wanted  desperately to have this all be a terrible dream, a nightmare that he would somehow be awaken from any moment. What he was seeing made  made no sense to him.  Someones body, lifeless, mangled,  with its abdomen ripped open laid sprawled on the hard cement floor. He looked around the tiny quarters, there seemed to be  no one else in sight.

He was not sure if he had actually heard the movement behind him or just sensed motion.  But then that smell like, he had never known before intensified. He turned in slow motion, gagging as he felt himself smothered in the putrid odor.  A gurgling sound filled his ears as a figure moved towards him. Teeth gnashing as the bloody disfigured body lunged at him.  In fear he backed away quickly.  Awkward clumsy  hands reached out  to claw and grab at him.  Zach kicked a  metal cart towards his intruder. He watched as this monster tripped, falling hard to the concrete floor, its gnarling growl growing as he struggled to grab at him again. Its limbs wildly thrashed around in an attempt to stand again.

He studied the figure momentarily.  He realized this was a young man and not a monsterous beast that was for some reason trying to violently attack him.   He wore a jumpsuit like the kind they had distributed to participants of the study. Only his was torn and caked with blood.  He resembled a young participant of the study Zach had met several days prior.  The young mans color was ashen and pale. His eyes were glazed and almost a glowing amber color. His face twisted without expression, drool and blood spilling from the sides of his deep purple almost black like  lips.

Zach turned his head looking  for an object, something  to hurdle at the hideous figure. Slowly it began to rise.   He placed his hand on a wooden chair lifting it quickly, he swung it at his attacker.  Knocking him down again. Zach watched as a gaping wound opened up on the side of this creatures  head. He stared at the wound for a moment.  There was no blood, just a mass of a deep brown matted tissue slightly exposed.   It tried again to rise slowly.  Zach swung again wildly, knocking  him -this thing, down once more, Then as if something inside Zach snapped he moved closer  to the mad man.  He lifted the chair and swung  again striking it in the head. He heard the skull  crack and the body fall once more.  Again he struck it in the head with the leg of the chair.  The head split and the thing stopped moving. Its teeth gnashed one last time and then nothing.  Zach stood motionless for a few moments. Looking at the human form now laying at his feet.  He trembled in his sweat soaked clothes.  Not sure what to do he turned to look back the other body, which now appeared to him to be a female.  She-what was left of her laid  near the small pool of blood, unmoved. He knelt down at her side to move the hair that covered his face.  He gasped as he realized it was Linda the night nurse.

Monday, November 16, 2015

The scrape
 chapter 2

Sheriff  Josiah  Barry hung up the phone. Cussing under his breath.  His side of Aitkin  county had always been quiet. But it seemed in the last six months  he had several calls of   disturbances, that left him with a feeling of unease and puzzlement.  He took another sip of the bitter coffee he had sitting on his desk.  Looking down at his mug he stared at the black sludge he had  been drinking  all morning.  He hated the stuff , yet, found himself  starting his mornings with his cup poured to the rim.   He rubbed his brow with his large strong hand. Feeling a dull ache starting at his temples.  Ever since Eve and her people showed, up along with the Center for disease Control there had been just a few to many unexplained calls of disturbances, he thought to himself.  His town folks, as well as the neighboring towns People were beginning to question what was happening, down at the old Hill City Youth Correctional Center .  He had so far, been successful at keeping them satisfied with his vague answers.  But, he too was beginning to need more answers to the evolving questions. Eve was the name of the contact he was given if he needed to speak to  someone on the inside.  He sensed from   Eves call  this might be more trouble than just a minor squabble with a complaint from a neighboring farmer.
.
The doors  to the old Correctional Center  in Hill City had been abandoned for over 30 years. Closed and boarded up it stood as a  lifeless landmark.  A new Facility  had been built  over in Blue Earth county  about  50 miles south.  For the 10 years he was in service at the Hill City Sheriffs department the abandoned building  had not been a concern to anyone.  Not so much as  a broken window  had been reported.  Even the Malone family had left the facility alone.  That is until the last 6 months.

  He had been told  the state health department Center for Disease and Control had temporarily chosen the site to conduct a new drug study.  He supported science and the medical profession.  He understood the urgent need for the research necessary to help find cures for diseases.  Since the premature death of his late wife from a rare form of cancer, he  had developed a deep respect for the volunteers who enrolled in  studies, at their own free will, to test new drugs.   But he also had a commitment  and concern for the community at large, if something were to go wrong.

This was a quiet remote place- a controlled place, to house the  volunteers,  while they were enrolled in  drug trials.  The approval had came all the way from the Governor's office.  That was all he was told and that was all anyone he knew  had been told. But what troubled Josiah was that the site was a correctional facility not a hospital.  It had bars and concrete floors.  Not comfortable beds and sterilized rooms.  It was a cold dwelling not a hospitable dwelling and certainly not a state of the art health center. Perhaps it had been redecorated inside  he thought for a moment.  After all drug companies made millions.  He stood up  stretched his long muscular  legs and grabbed his jacket as he  headed towards the door,  but, first stopping to let the front desk clerk know he was going on a call.   He walked to his squad car, half  mumbling to  himself, "he was  here to serve and protect his people, keep his eyes and ears open and his mouth shut until he had the facts". "All the facts".   Eve was his contact if there was any trouble or complaints from the citizens of that area.   It did not occur to him though until now he might be called out because she was in trouble.

 Josiah  was generally a quiet man who kept to himself.  After his wife passed away 3 years ago he just sort of  buried himself in his  work.  Between his career and working out at the gym he seemed to not have time for much else.  Yes, there had been a few young women from town who could not resist his deep  chocolate brown bedroom eyes  and approached Josiah with flirtatious attempts to attract his attention, but he just was not ready yet to start dating again and was not sure he would be  for quite sometime.   His late wife Victoria was the love of his life.  They met on the swim team  in High school. With his long arms and legs he took the team to victory several times during meets.  She was a small petite beauty with long brown hair who moved swift and fast in the water, her speed made her a valuable member of the team.   But now Josiah nearing his 30th Birthday  at six two and weighing a strong  200 pounds,  looked more like a fitness trainer than a member of the Aitkin county Hill City's Sheriffs department.

  He just knew deep down in side sooner or later the mysterious occurrences at the correctional center were  bound to mean trouble. He sensed this was not going to be good. He only hoped whatever happened was contained to the dwelling


Eve laid her head back down.  Her memory was starting to coming back and her head felt dizzy. Colorful pictures flashed through her mind.  "Oh My God" she cried " as she recalled why she had fled.  











Saturday, November 7, 2015

jogging

I quickly put on my running shoes, grabbed my favorite stocking hat and gave the mirror one last glance.  Would I ever feel satisfied I wondered as I stared at my reflection.   I  was trying something new, running.  Hoping this new attempt to do something for myself might help free my mind.  I was desperate to have something I did just for me, that would also be  good for me.  I wanted a conscious choice that would help me find a little satisfaction- just for me.

No I was not a seasoned runner. I was a rookie just discovering  the feeling of the pavement under my feet. I was a  soul desperately in search of something that could free me for minutes at a time from the journey that demanded daily, everything I had.

The air was a bit chilly as I breathed in.  My lungs filling with the cool air, and then slowly exhaling as I began to pace myself.  I concentrated on the impact my feet felt as they touched the ground.  I was in a jog, slow but steady.  My thoughts quickly changing to the obstacles in front of me and the goal markers I strived to reach before I slowed myself to a fast walk. Yes I  was the beginner, who jogged, walked and jogged some more. Each time pushing myself to make it farther and farther before I would slow my pace shortly,  for a slight break.

As I felt my self move I also felt my mind slowly letting go.  Freeing me from worry and concern from the constant care my job demands of me.  I was achieving what I  had set out to do and  It felt good. I passed by several other runners sharing in a friendly  nod.  I even received a high five as I  passed by another female jogger.  I was where I needed to be right now.  I was giving something to me that I had needed for a long time.  I was freeing me and allowing myself to exist without any perpous other than my own gratification.  Yes, I was feeling satisfied for the moment.


Monday, September 28, 2015

Belly dancing

Few know this about me,  but eleven  years ago I took belly dancing lessons. It was something I chose to do for me.  I enjoyed the class so much that I looked forward to it each week, and practiced secretly behind my closed bedroom doors. I actually wasn't too bad at it. Each movement brought me my own satisfaction. I worked hard, rolling  my shoulders, swaying my hips. In a room with 20 other women ranging in age from 20 to 60 years, I danced. As diverse as our age  was, so was our size.  I really had nothing to be insecure about,  my features were not altered with any marks that might some how make me stand out differently, and  my weight was at 105 pounds. I was simply put- fairly attractive and a perfect size 2.  I stood in line during class commanding my body to move to the rhythmic music. Demanding  my body  to follow the music, with motions that made me feel sexy and even a bit beautiful.

The day finally came when it was time to start preparing for our recital. I was frightened. The thought that a crowd of people would look at me and judge me filled me with anxiety. The thought that my fellow comm rads would all have  significant others in the audience,  applauding for them left me feeling awkward and lonely.   I felt vulnerable and could not imagine anything more frightening than being exposed openly to scrutiny and ridicule.  This was all at a very difficult time for me.  A time when I was going through my divorce and  reentering  the dating world. As  I was struggling to gain a new confidence, I was also working through old wounds.

I caved into the demons that haunted me that weekend. I let fear over whelm me and  did not perform in the  recital.  In fact I was so ridden with self doubt and anxiety, I  used my children as  an excuse to not be available the weekend of our performance. In truth it was  my child weekend off.  I know most people who know me today, cannot even imagine this very insecure, awkward and shy side of me. A side of me that only my sons and two sisters really have witnessed.

So this was  also a  time in my life when  my new availability sparked some interest with several men in the dating world. Unknowingly giving me more demons to contend with.  So with nothing else to do in my life, on my weekends when my sons visited their father, I  accepted  some  invitations out.  Always being very  cautious to not set my hopes up to high.  I remember one particular time when I was  out on a blind date.  The gentleman I was having dinner with asked me what I did for a living.  I watched the color slowly drain  from his face as I  spoke about my job, caring for my two younger sons. He quickly changed the subject to comment on the  vikings and said little through the rest of dinner. He walked me to my car without a word, other than  goodbye and good luck. It was shortly after that through a chain of gossip I learned exactly the kind of battle  that laid ahead for me.

I  was a single mother with two terminally ill children.  A mother who spent her days and nights caring  for the special needs of  her sons,  alone.   A  mother fighting for her children's acceptance and her own,  in a selfish world.  A world who  marketed strength and beauty as though they are the catalyst to success.   But I was also a mother who would find the  strength to go  against the odds to start a new life for her and her sons alone.

 I don't regret not performing in the recital.  In fact I embrace that I accepted - fear and insecurity, as part of who I am.  Eleven years ago I was in a very difficult place.  A place that brought me to such a low that I did not even believe in myself.  I let what I  heard from a handful of people fill me with self doubt.  I let hurtful words that had nothing to do with Belly dancing and everything to do with my sons leave me feeling as an outcast and unwanted.  I  knew better, but the insults that found their way back to me outweighed my inner strength.  I was stripped of hope and no match for the despair that threatened my world.


That was eleven long years ago and so much has changed.  Yes, Duchenne the  terminal disease that my two younger sons have, has progressed.  Their daily care is much more demanding. As my sons face more challenges  with their weakening muscles -Life has not become easier.  I am still their single mother, facing new fears as I watch them loose in their battle with Duchenne.
But I am not that same woman who once  lacked confidence in herself , and took to heart the negative thoughts of others.  I am not that same woman who lacked inner strength and struggled with finding hope.  I have found the strength I need to face each day and the hope I need to face the challenges ahead of us,    But more importantly I  have found my confidence in me- no matter what anyone else thinks.     Today I would not hesitate to perform in that recital. Because I know I am the best me I  can be and really no one ever expects anyone to ever be more.

Sunday, September 6, 2015

Labor of Love

There was no real reason for the single tear that rolled silently down my cheek.  It escaped as though it had a mission of great purpose. I bit down on my lower lip in an effort to stop the sob I felt building somewhere deep, deep, within me. Damn. What was this I cursed softly to my self, swallowing hard to keep whatever it was that was overcoming me contained. Ardently fighting sadness ,  to not alarm  Josiah, who played on his iPad only feet from where I stood at the kitchen sink. I sat the  dish I had been rinsing gently down on my drying rack.  I looked out my wall of windows that overlooked  our lake. My eyes followed  a trail of white Lilly pads to the  small island now over grown with nature. I did not have any  new crisis  or old for that matter -invading my world. In fact I had no drama  in my life, to even share, with anyone. I wiped at my moist cheek and looked over to where Josiah sat in his power chair.  His smile was so joyful. I studied his weakened posture as he busily tapped away at his screen. As if on cue another tear, crept slowly, out of the corner of my eye.

It was silly of me to even try to ignore the emotions that were rapidly advancing. I was simply no match to  the flood gates that  once again were opening the entry into my memories, lost dreams and  hopes. It was after all Labor Day weekend once more. I did not need a telethon on television to cling to. There would not be one this year helping  me ride out my waves of explosive fear and anguish. There really was nothing new for me to face. The reality was relentless, Duchenne the monster in my world, has been present since my earliest memory  and most  likely will be apart of my last thoughts. We are so connected I can only try to imagine life without its devastating effects and can only hope to know one  day a world with out  its existence. 

Wednesday, May 20, 2015

My own deep thoughts

As I tried desperately to put my thoughts into a contained place so I could unleash my  creativity and write  about love and romance for my  writers group meeting, parts of me wandered deeper into  another channel of my mind. So with that, I spent a good part of the end of my weekend wrestling with my very private rationalizing, regarding a very tender subject  to me.  Grief, Chronic Sorrow, life after loosing a loved one.

Over the weekend I  reunited with a dear friend from my younger years. I had accepted an invitation to my best friend from high school  daughter's graduation party. I was thrilled  to be able to join in the celebration for  her  youngest child.  Excited, to wish her well  as she takes the next steps to begin a new journey of another chapter in her young life. But more than that, it was a chance for my friend and I to  share joyous parts of our lives for a few moments,  after all these years.

As I  met with my friend,  I was delighted that I also was able to visit briefly with her mother. I was in awe,  that her mother remembered me and was only to happy to recapture  a few highlights from our younger days.  Days of big hair-dos and designer jeans. A time for us when life was just a bit simpler. A time when we were not the parents and eagerly beginning our very own journeys in life.

It was a great pleasure to reminisce the past years of our youth and then share in minor details of some current  events of our personal lives. With promises to have a girls night soon, I departed. 

Later that night lost in my reflection of the day's events I retired to my room thinking about how very differently our lives have been played out. Even though we were both mothers to three children, now single again - picking up the pieces from broken marriages and moving on from our own personal heart-aches, our lives had indeed differed.

  I could not help but wonder how it must feel to have a  mother  there to share in  the celebration of my children's high school graduations. How full her world must have been to have her parents there to to be part of her world  while she raised her children. While elated  to see her mother I was also touched with sorrow as I was reminded of the losses I had long ago learnt to accept into my world.  

My mother died 20 feet from where I stood while I was engaged in a passionate conversation with my younger sister regarding some current crisis of our own emotions.  With a long sigh  she breathed in one last time.  Silently  a single tear  rolled down her cheek as we watched her  through our own tears move from this world to another. Leaving behind my two sisters and I. The Three of us now, all  that remains  from my family of 8. 

Twenty two years later I am brought back to that time  when I held a life in my womb as my heart said good bye to another.  Only my eldest son Zach had the honor and privilege of meeting my parents. His time with them cut all to short as they became victims of cancer. I was in my first trimester with my second child when my mother passed away  following my fathers death nine months earlier.

So I found myself now thinking  about memories that I neatly had tucked away. Perhaps for a moment just like this, to now be let to resurface. Precious times I shared with the members of my family that I so ardently missed now. Emotions within me triggered, calling out to me, as I shared in celebration for those friends around me, while silently tending to my secret sorrow. Sorrow from a world filled with saying goodbye to loved ones far to soon. Heart ache from accepting that one day far to soon  my two youngest sons will  also join my parents and my three brothers in the after life.
So with love and courage I move on, carrying with me the chronic sorrow of living with loss as I accept all that  my two terminally ill  sons will never experience. Along with the pain of knowing, once again far to soon I will have to say goodbye and find the courage to look past all the sorrow to see my tomorrow.



  



Monday, May 4, 2015

the scrape


 The water trickled slowly.  Eve held her scratched and bleeding hands under the worn rusty sprocket.  Wincing at the pain the cool water brought.  She looked down at her knees that were now caked with mud and blood.  She was hurt,  but it  appeared to be only flesh wounds.  Wounds that would need to be cleaned and bandaged but that would hopefully not require any more medical attention.   She splashed the cool water first on one knee and then on the next.  Watching as the water, blood and mud trailed down each leg.   The sting increasing with each handful of water she brought to her  scraped knees.  Tears blurred her vision as she looked around the farm. Not to far off in the distance she noticed an old ranch house. Eve knew she needed help and she would have to somehow get herself to the house.

Slowly she rose to a standing position. Instantly a dizziness filled her aching head causing her to teeter backwards. Just as she began to feel herself slowly slip  to the ground she felt two very strong hands grab her shoulders to catch her. Then just as swiftly two strong arms lift her off the ground. She let herself surrender as she heard a deep soft voice in  a slight western drawl  say  "I have you  honey you will be fine". She laid her head against his welcomed chest,  listening to  his steady heart beat, as she watched the ranch house get  closer.  Very gently he carried her through the wooden screen door. She glanced around the rustic inside. It was neat with simple  wood furnishings, a definite mans home. He laid her carefully down on a wood framed over  sized couch. she looked up into his face as he leaned over her to adjust pillows under her hurting  head, which she now realized was also bleeding. His eyes stopped as they met hers. He smiled   as they locked gazes  momentarily, and asked if she was comfortable. His handsome face almost taking her breath away.   She just nodded yes while she felt her eyes fill again with tears and fatigue rip through her. As he rose  he told her softly to rest and that he would be right back with some soap, water and bandages.

The bright afternoon sun poured in through the large windows that were in front of her.  Eve tried to raise her head to take another look around but a sharp dull pain prevented her efforts. She collapsed back to the softness of the pillows and with in minutes her handsome hero was walking back to were she laid, carrying a tray of first-aide supplies.

He knelt down next to where she laid. She watched as he dipped a white finger towel into a bowl of sudsy water.  He carefully dabbed at her forehead,  his expression full of concern and kindness. "I am Cody". He told her as he dabbed at her head. Softly he apologized for the pain that his efforts caused.  Her eyes followed him silently as she watched him ring blood mixed with water from the cloth. 'Whats your name?" He asked while he worked at cleaning her wounds.  A hoarse whisper hardly sounding like herself at all, escaped from her parched lips.  "Eve." She answered.  "I am sorry" He offered again. "You are thirsty. Let me get you some cool water". She watched him head again  towards the same doorway and return shortly with a few water bottles. Without hesitation he opened a bottle and held it up to her dry chapped lips  while gently placing his other hand under her neck to help raise her head slightly.  Her eyes stayed fast on him with each movement.

The water glided down her throat with out much effort.  She had half the bottle finished before he spoke again. "I think we should get you some medical attention." He suggested as he  looked back at the wound on her head and then at her knees.  Watching her face closely he waited for a response.  "How bad is it?" She asked gesturing to her head and wondering when he was going to ask what happened.  "Well I am no doctor but, I am afraid it is going to need some stitching" he said.  Her face showed the sorrow his words gave her.  Almost immediately he responded with "honey don't worry, it is  a small slice, but it looks deep.  You will still be beautiful even with a slight alteration".    In spite of her pain she felt a slight smile cross her face.  This handsome stranger was flirting with her.

Tuesday, April 21, 2015

Discovering

My heart sank as  I read and reread the words I held in my trembling  hand. I suspected something but the news I had just discovered was not even a possibility that entered my mind. I stood looking around the room. Feeling cold and so alone.The reality of the situation almost choked me. I could not even comprehend how things came to this. I had suspicions but nothing prepared me for what I had just learnt. Hurt, sorrow  and fear overwhelmed me.  I was drained.  Let down and at the precise moment feeling extremely lost in the seriousness of all of it.  But  most importantly I was alone in the knowledge I had just gained. Left with  the facts from information that horrified me as to what else might  be  connected in to what seemed to be an ongoing problem. My heart sank as I felt the still air close in on me. How much more strength would be demanded of me.

I am not sure how long I stood staring off into nothing lost in my thoughts.  I felt numbness fill me and then just nothing. A nothingness so powerful I felt myself wishing to feel anything even   pain. Something that I could understand. Something I could grasp and  accept. But what was this I wondered to myself. I simply felt nothing a void where I once had emotion. Without feeling I had  nothing. I had no where to go from here. I simply felt all that I once hoped in believed in silently slip from me. I was a tiny peice floating in a sea of nothing. Just floating like a dust particle aimlessly drifting.  And then as I went in deeper into my own abyss a sadness overwhelmed me. AS I grasped at one deciding factor that flashed before me I realized it wasn't me who was lost.  I was more than this nothingness that I let threaten my existence. Even if I did not understand anything else I understood what mattered for the reality that invaded my world would  not have found it's way to  me if I did not.  And perhaps for just that purpose alone in the sea of darkness It was up to me to see that  change some how would make a difference even if sorrow hinged on the hems of her dress. I can't tell where the journey will end but  I can see the here and now and that may be all I ever have.

Monday, April 20, 2015

the afterwards

I stood unable to move, frozen in place.  My eyes traveled slowly following  the long tubes that were now connected to my youngest son.  Under neath the white starch sheets, tubes and bandages wound around his body.  Still   very heavily sedated he laid motionless, with his eyes  tightly shut.  I looked at the monitors that displayed his heart rate and the machine that monitored his breathing and then back to my sleeping son.  My heart ached for him as I felt tears forming in my eyes.  I wanted to scoop him in my arms, hold him, run with him away from this place.

Silent tears rolled down the sides of my face.  I moved closer to his bed, needing  desperately to touch him.  His face was swollen with tubes taped to the sides of his cheeks and running down his throat.  They had warned me he would look different and that it would be difficult to see him this way.  I felt the choke of tears building deep in my throat as I struggled with a flood of emotions. Slowly his eyes opened slightly as I gently caressed his hand. My heart broke as I  watched tears roll down his face, then felt his hand go limp and his eyes closed again.

 Surgery had went well for the most part I was told.  There had been some unexpected extra bleeding that caused concern, and surgery had taken a bit  longer  but, he was now appearing to slowly be progressing  to a stable condition.  The next several hours would tell us more as the medical night crew watched him closely.   I sat half  curled up next to my sister Marie who refused to leave my side, on a small couch at the foot of his bed that long first night and then eight more nights to follow alone with my Josiah.

Now four years later we continue to rejoice in celebration of Josiah and his recovery from spinal fusion surgery. Today though we celebrate so much more.  For although his disease has continued to progress in other areas taking more strength, he is  thriving. He is here with us living his life.

I am especially consumed with admiration for him as I  begin to pack us  for turkey hunting in  Iowa.  Happy to have  both my sons with Duchenne   participate in a sport that has given them even more opportunity to challenge their own limits and sore with strength and courage, as they defy the odds of  severely limited abilities with the help of a very supportive team that has gone beyond kindness. While I fold Josiah's camouflage clothing that he has been generously  outfitted with from this very giving organization, I  can not help but reflect on how far he has came and how far as a family we have grown.  I am filled with great joy as I prepare all three of my sons and myself to join  together to go beyond the world of DMD.  In closing I  want to share one beautiful thought from Josiah.  "Let your smile change the world but never let the world change your smile".



Thursday, April 16, 2015

prom with a promise

Instantly I saw Cody's face light up as he saw Kayla approaching.  He looked so mature and handsome in his black  tuxedo.  His charming smile dazzling almost as much as the  diamond stud earrings he wore. Completely captivated,  as he watched the young woman who had captured his heart 2 years ago  walk towards him.  Her beautiful purple beaded gown glistened as the setting sun surrounded her.  On top of her head  perfectly placed sat a sparkling tiara.  She was his princess, his Cinderella  and he her prince Charming , this was to be their night of nights.  She smiled shyly down at him as she reached his side.  Together they went inside to join the other young couples that were lining up for  the Grand March. 

 The night had finally come that would give Kayla and Cody their magical moment on the dance floor.  I stood off to the side snapping photos next to  Kayla's mother Linda, while her father Peter and my sister Marie captured shots from another angle.  All  of us  over joyed that our children were sharing this special  night together. It had broken all our hearts when almost a year ago to the day,  as fate would have it, the  High School Prom night had been traumatically altered for this very special couple. But today thanks to the Shriners Annual Prom Cody and Kayla were offered another chance to fulfill a dream.

 I stood looking down  the long corridor feeling extreme happiness. Something I had not felt in quite a while.  Young  ladies in beautiful gowns lined the hallway escorted by  handsome young men in tuxes.  My two sons in wheelchairs and their lovely dates were first in the line for the Grand March.  It seemed already magic  was at work to our advantage.  Having both my sons  in front of the line would help keep them from letting anticipation grow to much. With cameras in hand we snapped picture after picture of our children as they were introduced to the waiting crowd.  First my youngest son Josiah with my niece Kayla looking adorable in his white tuxedo coat and her in a  beautiful glittery  cream knee length dress.  Followed by his big brother Cody.  Linda and I  sharing in our emotions of pure joy as we listened to Kayla and Cody be announced. This was a chance that  allowed  them both  the experience to feel like every other Teenager .  A mile stone for them that was not limited or in anyway inhibited  by their physical challenges.  A night where they were presented just like all the other young  couples.  A night that would give them lasting memories. A night that would also to our surprise fill our hearts as parents with deep admiration for both Kayla and Cody.

It was a beautiful night, everything seemed to be going smoothly, we watched  Cody and Kayla shine as they danced together. While  Linda and I paraded around them like Paparazzi they handled the constant click of cameras with out complaint.  Towards the end of the night as we stood encircled around the two discussing a few other last  photo options that we should take of them together, Kayla and Cody took it upon themselves to create a magical moment.  A moment that caught us all in surprise. Seizing the opportunity perfectly  Kayla quickly assisted in handing Cody a ring with a sparkling stone. Without any hesitation Cody very carefully  placed the ring on her finger asking Kayla to marry him.  We stood surrounding them holding  our hearts and our tears of joy.  Kayla very gently bent down to Cody to seal the acceptance  with a kiss.

Every parent has hopes and dreams for their children, even special needs parents.  This is the stuff dreams are made of.  The magical  moments in life that can make hope a reality.  


Friday, February 27, 2015

Chocolate

I dipped my pretzel twists into the can of the chocolate frosting I held tightly in my left hand. I savored the flavor as I chewed  the piece of pretzel in my mouth.The chocolate flavor calming me, helping me to escape.  I clung to the taste of salt and sugar. As though it was a relief to the problems that danced around me I concentrated on each dip into the can. For that moment it did not seem to matter to me that my size 2 skinny jeans were fast becoming   a distant memory of the past. Why I wondered had this indulgence become a ritual to help me escape from my pressing present dilemmas. This simply had become my new fix. A solution to help aid in my acceptance of problems I had no control over. A form of comfort that eased my sorrow. But a comfort that kept me isolated and my problems unresolved. Yes chocolate in many ways is rewarding but in answer to help in solidifying a solution,  not in the least.

More thoughts worked their way through my unsettled mind. It did not seem to matter that even with age most of us still fought to find our place in this world.  Some of us still struggled to find a Comfy place that could carry us off, away from our current dilemmas. 

I was thrilled to have a few days to spend just with Josiah. A week away from the  city at my sister Marie's new lake home. Nestled in a small town up north. Not only did we hope to take Josiah out for a pontoon ride,  but he was excitedly hoping, to visit a casino or two, while away. Yes now 18, new adventure ideas danced through his beautiful mind. 

However I could not help but be pulled into the thrones of what this new milestone meant in another way. Age in the devastating world of DMD. A world where aging was not a friend or met kindly. It introduced more adaptions and machines for daily living. It represented  more loss of functions and less ability. More importantly it brought the realization of an end becoming nearer. I wanted ardently  for 18 to be the the turning point that  meant the beginning of a new chapter for Josiah. I wanted it to mean, graduating from high high school like his cousins. I wanted it to mean hanging with friends, asking me for my car keys. Getting a summer job, even dating. What I did not want it to mean was learning how to use a bi-pap machine, researching for an arm assist or having his power chair resized and fitted with new adaptions that would aid in his continual muscle loss. I most importantly did not want it to remind me how much little time might really be left. A reality that tore at my heart.

I chewed another pretzel smothered in frosting, fighting to suppress my feelings of sorrow and loss. I hated this disease with every fiber of my being. I was helpless in our fight against it. And despised the control it had in every aspect of  our world. My whole life was and has been consumed with surviving its viscous attacks, first with my brothers and now with my sons. Helping my sons to thrive was now my only ambition. 
I disliked the representation of aging and right now wanted nothing more than to ignore it. If only it could be that simple I thought to my self. But even packing my son now for a few days away meant packing machines that helped him thrive. Pre-Planning was essential to his stay anywhere, even for a few hours.

I felt anger encroaching in my thoughts of how hard life was quickly becoming for my 2 younger sons and all the boys like them.  I needed a deterrent and fast. I had long ago accepted this was our world. As hard as it was, pure and simple, fitting in to an ambulatory world really did not matter anymore to us. I was done trying. We had long ago moved past that stage.   I needed to concentrate all my efforts on the  special life  I had worked so hard to create for my sons. Because the reality of it was,  we were  indeed different. I embraced marveling at all that my nephews achieved turning 18. But right now I would  run with the wind to help Josiah live out his own coming of age. 

With my last bite of a frosting smothered pretzel I decided that Yes I did posses the power to  put my restless thougts to rest for now. I would help Josiah have his own amazing year of turning 18. 

Sunday, February 1, 2015

Heat

 My heart quickened. I felt a moisture begin to form on the surface of my palms.  He stepped closer, bending slightly towards me so that our eyes locked.   I could feel the heat from his body as he pulled me into him.  It was almost as though I was  powerless against the growing attraction we shared.  His strong  muscular arms enveloped me with a force full of hunger and desire.  With his moist lips slightly parted,  he covered mine, as though inviting me to surrender to the magic between us.  His pressed lips, growing firmer against my own as I accepted his kiss.   I breathed in deep, slowly drawing in his masculine scent. Almost dizzy from the alluring aroma,  I quivered, feeling parts of me awakening to the sensuality of the moment.  His  breath heavy and warm lingered on the nape of my neck as he explored with his lips. For the moment I was entranced by the intense pleasure I was feeling.  What was it about him that  I found so irresistible, I wondered to myself.
 
 On the surface he seemed no different than other man I had known.  Handsome, tall, with an athletic  physique that would fare well for a  man even ten years to his junior.  He was strong with a  casual rugged bad boy  appearance.    But Inside  he was deeply complex, sensitive, connected to his emotions.    A restless soul wandering in the after math of sordid affairs that had  left him unfulfilled. He  seem to posses  at times an untamed charm that made him appear almost child like.  His zest to explore the world intrigued me.  I felt challenged and quite enticed by the variation he brought to my contained world. Yes, he was indeed different from the men that had encircled me in the past.

I could not deny any longer the passion  that existed between us. My knees grew weak as his large hands began to caress me,  sending sensations running up and down my spine.  I felt his heart beating as he held me even tighter.  There was no place I wanted to be more than right where I was.  Behind him he  closed the door slowly with  his foot. I stretched out my hand towards the wall dimming the lights. The moment was ours.   He was capturing my heart and I no longer found myself wanting to resist.  



Friday, January 30, 2015

Deciding 911 or not

I cradled Cody's head in my arms.  Not sure just what to do next.  He did not appear to be seriously injured.  But I felt fear slowly surrounding me.  Closing in on  me as  though it was  desperately trying to swallow me.

My eyes darted up to my sister Marie and then back to my son, who laid dazed in my arms.  We needed no words to share in our  jumbled emotions, that challenged our rationale.  As if our minds were one, we both knew how serious the situation was.

My hand gently stroked through Cody's hair. Carefully I felt for any bumps, or worse bleeding.  Shock and fear absorbed him as he looked up into my face.  I fought hard to not let panic prevent me from addressing the immediate attention Cody needed.  He seemed to be in shock.  Almost immediately told me the room was spinning.  With my finger tips I could feel a bump already forming on the back of his head.  We knew we had to get him up from the floor, but how?  Moving him gently  was a rather large concern for us.  If he had injured his neck or back transporting  him might not be the best thing. If lifting him was not problem enough, the vomiting that had started heightened the seriousness of the situation.  We now had  to position Cody in such a way that he would not exasperate on his own stomach secretions.

We were two and a half hours from the city and the specialist who new Cody so well.  The nearest hospital was 40 minutes from us.  It was becoming dark, cold and raining.  The wet dirt drive way that lead to my parked van also added to the list of  elements  working against us.  I would have to push both chairs through mud  to get Cody and Josiah  inside my van.  If you have never had to push 150 pounds of flesh and another added 35 pounds (which was the weight of my sons wheel chair) through rough terrain, sand, or mud, you can not even begin to imagine the strength it takes for a 110 pound female.  To add to our anxiety and fear,  my sister was scheduled to fly out of the country in just 36 hours. If I  ever needed a clone it was now.

 On top of all that was happening, my sister was also recovering from a back strain, that prevented her from lifting either of my sons.  That made me  the only one that was capable to  safely lift Josiah, who needed neck support whenever being transported or lifted . I looked over to where Josiah sat, watching us from  his chair, and then back to Marie.  I just could not leave her alone to care for Josiah with things the way they were.   I looked at the clock and back to Cody, his head still cradled in my hands.  His color appeared to be coming back sightly and his eyes were now focused on me.  My throat felt dry as the tears I had been holding back, slowly dissolved.   Even if I  called for an ambulance now how could I ride  with Cody to  the hospital and still transport Josiah.  I had the only vehicle capable of  transporting either of my sons home.   There simply was no other choice, I had to bring Josiah with me to the hospital even if it meant we would be there overnight with Cody, I would worry about details  later.

With  strength from Angels we managed to safely get Cody from the floor to the bed.  Carefully, we laid him out and searched him from head to toe.  He appeared to not be hurt any where other than his head.  Which he complained was pounding and causing him to feel dizzy.  I got him from the bed to his wheelchair as carefully as possible.  Once he was comfortable and slightly reclined we loaded him into my van.  With determination and strength, from a force somewhere with in we pulled into the hospital in relatively good time, where Cody was treated for a concussion.  With the vomiting finally under control he was released for home care a few hours later.  I was drained but more than that happy  Cody was going to be home with us. It would be a long night with keeping my eyes on him but I would not have to be separated from Josiah.  Three  hours later we were back at home.  My sister Marie would make her flight on time.

Later that night after my boys were resting comfortably and safely in bed, I  looked at the transport chair, that had caused Cody to tip  over backwards. Fear and anguish overwhelmed me.  The very thing that had made life easier for us- for me in transporting him, could have killed my son today. In spite of every effort I take  to keep both my sons safe, just one slip,  can literally be catastrophic.  I could feel the warm tears that I  held back earlier that day slowly  began to roll down my cheeks.  I looked down at the  monitor I held in my hand, that allowed my sons to call for me should they need me.  A soft voice whispered to me   "Cody would be fine and that was  all that mattered".

Sunday, January 18, 2015

the argument

I poured the remains of the bottle in my stemmed glass.  Quietly I listened as the remaining ice crackled from the sweet cool liquid swirling in my goblet.  I swallowed hard as I  felt the chilled pink drink slowly slide down my throat.  Hoping  to feel the effects of my sweetened wine, soon.  Wanting desperately to feel  release from the tension that had been  tormenting me, I took another sip and waited.  Some how I  had to move past the the present.

If things had only somehow gone  different, I tried to reason to myself.  But what was done was done.  I could neither ignore nor excuse our apparent disrespect for each other.   My mind played over and over the conversation, as though the rewind button was stuck on constant replay in my head.   Easily this  could have been spared the ritual of rising auditory volume and the choice of language could have been  softened to  down play the extremity of our tempers.  I felt the annoyance of the evening grasping at me.  He had hit nerves that triggered a fiery level with in me.  He had came close to sending waves of explosive energy thrashing out of me.  Now I was left with the remains of bottled up emotions from a disastrous attempt to work things out.

My lips parted to accept another sip of the  fruity wine.  Oh yes, I was now beginning to feel the slight surrender to a state of relaxation.  Exhaling,  I felt a slight shift in weight from my shoulders. Ever so lightly I felt the deep anger that fought to control me earlier begin to disappear.

I sensed the Silence was almost choking him as he sat across from me.  I was though rather impressed he had the  courage to with stand my attempts to break him down.   I was also pleased he showed signs of remorse for his own verbal explosion. Most importantly though I saw he was not afraid to fight for what he wanted even if it meant exposing his heart.

Very tenderly he reached over towards me. His hand rested on mine as though waiting for a sign that I would accept this attempt to make  peace. Our eyes locked as I looked up from our hands to his face.  He seemed so sincere and desperate to end the hurt we had hurled between us. His deep brown eyes captivated me as I searched his handsome face for something more.  He looked so wounded.  It was senseless to let obstacles invade us and yet our worlds were bound to clash at times for reasons beyond our control.  I wanted  more than anything to move beyond the heightened moment.  I wanted to let go of my pride.  Collapse in his arms, that I had once found to give me comfort.  Leave everything I had learnt from my past behind.  Trust in myself again.  Most importantly trust in love again. But, I was determined to keep a small wall up.  A half wall, that would protect me from vulnerability.

I stepped towards him in hopes that we could simply escape words for now and just enjoy the presence of each other.   His embrace felt warm and solid. I felt him breath in deeply as he tightened his strong arms around me.  Why  did I still feel the need to resist his affection, I wondered in silence.  We embraced for quite sometime neither of us wanting to let go.  Escaping  the need to use words for the moment. Laying my head against his chest I listened to the slow steady beat of his heart.

  Quite simply put, we had somehow moved past our words.  Even with my wall still  partially en tacked, I was finding room to accept what he was offering  me now.  He had managed to use patience to help us shift our emotions.  His lips lightly grazed the top of my head.  With out  moving we had somehow entered a new level with in our relationship.  We had  found away to agree to share this peaceful silence and together  use it to help us take a step to move past the pain from our past relationships.

Sunday, January 4, 2015

On loving ......

I curled up on the recliner, pulling the covers over my lap, to enjoy what was left of the Hallmark Christmas show I had been watching.  My two youngest sons  were now resting comfortably in their beds for the night.  I was pleased to finally  have some quiet- me time.  I  glanced at the monitor I had placed off to my side, quiet filled the air.  The slight sound of somber breathing was like music to my ears.   I sipped my glass of wine and softly stroked my dog Bella who had just jumped up on my lap and was now nestling herself in a ball.    The house was filled with a comforting peace.  Other than the television there was  just the soft glow from the lit Christmas tree.  I  turned my attention to the television and watched as a young couple strolled along.  Under a starry  moonlit sky their  romance budded before my eyes.  Standing   in the middle of a small town  alone together they had discovered love between them.  Just as quickly the screen flashed to a Jolly old man dressed in red.    Known as Santa by most of us.

 I smiled to my self, Christmas and romance, how fitting they should be entwined in to at least a half dozen shows of the season. I love the sights and sounds of Christmas and the presence of romance adds even more to the magical belief in Christmas and the miracles brought to life by our hope and faith of the joy of the season.  But as  I watched the screen swiftly flash back to this couple in love, my mind drifted off.  How sweet I wondered, if Santa could actually bring us the one we were meant to fall madly and hopelessly in love with.  How tantalizing the thought was, that Santa could come strolling along and simply decide whether we  need  assistance to find our hearts desire.  Or better yet our hearts desire finds us. Off on another channel I watched as a man found the meaning of Christmas by giving from his heart.  The joy of Christmas had  been captured by Hallmark no doubt.  I sipped more of my sweet red wine and let my mind drift off to the present thoughts that were scrambling in my head.  

Love is a subject that moves me deeply.  Love comes to us in many forms and in many ways.  It is not just one kind of love we all need.  But the love we find between couples is the most misunderstood and most  searched for.  As a  modern day romantic  I am in  awe of romance and find it most captivating. Books and movies hindering with the beauty of romantic notions can lead me astray.  Sending me off fantasizing into another world.  Filling my soul with unsettling visions of the portrayal  of the most desired love.    But the realist in me insist that love in itself must indeed be so much  more than the fairy tale story books portray.  I struggle with its idea that once we find our hearts content  we will no doubt ride off together into the sunset happily ever after.  Coupled with the theory we will not be happy till we find THE ONE TRUE LOVE.  I surrender that yes most of us concede that somewhere in this world there is someone for us, but I also accept that perhaps it is just not ONE we have been destined to be adjoined with in a life time.  The beauty of the human  heart is that it was made to love many and it is capable of with standing and holding so much more than we often allow.  So as a "modern day romantic realist" I can embrace that perhaps in my life time I have allowed my heart to be open.  To feel, explore and express love.  Most importantly I have allowed myself to be loved. However, perhaps it is not yet been to the extent I am destined to have.

Rainbows and sunsets are wonderful for the imagination but  We deserve so much more.
Hallmark definitely covered finding love for Christmas. However, those of us who have not found love this season, well, Cupid will be appearing shortly on the screen.  I myself am eager to see  what the Hallmark channel will once again show us.  Oh my friends if love was only so simple.  I would embrace every broken heart I ever had.  The truth is love is scary and not always the way we think it should be.  It can hinge often on physical attractions and quite honestly not on the stuff souls are made of.  It search can be endless for some and then there are those who have written  it off long ago  Hugs though to all my  friends, who search for Love still continues. I wish for you to find whatever it is that your heart is desiring.  I have found myself once again intrigued with the trimmings of LOVE, lost in my own romance.  Perhaps my search ends here. I will embrace that thought and hold onto to it tightly.  For even us realist believe Love is after all a splendid thing, sometimes it can show up when you least expect it and absolutely, it is better to have loved and lost than never to have known love at all.

Peace and Love
Accepting the helping hand



There was not a trace of snow to be found, as I scanned the courtyard.  No matter, I thought to myself, as we watched a sleigh with two reindeer attached pull up in front of us. Eagerly, my two younger sons Josiah and Cody waited at my sides in their wheelchairs. Amazingly running along the sides of the sleds runners, were wheels.  I smiled as I explained to Josiah, that this was exactly how Santa's sleigh was made, so that he could visit warmer climates, that did not get snow.   Excited we approached the sled that harnessed Donner and Blitzen.  Cheerfully we were informed that the reindeer were a bit anxious themselves and on a ride earlier, had attempted to speed up there pace.  Warning us we could feel a bit of a jerk, should they decide to gain speed again.  However the men that guided the  reindeer would do their best to keep the sled grounded and not let us take off in flight.  Josiah's beautiful brown eyes widened as he smiled-  the mere thought of this undoubtedly sounded utterly fascinating. Naturally flying through the air would be in the reindeers blood-we joked together. 

I sized the sleigh up along with my brother in-law Bill,  who had  graciously agreed to accompany us today, along with his wife, my sister Marie. We are so blessed, with both of them always lovingly and eager to assist us, whenever possible. Lifting my sons high enough to place them inside the sleigh was one posing problem, but also with the lack of head support and seat belts or a harness I was faced with keeping Josiah’s neck supported during the ride.   As if on que, and not letting us fret for a moment, two men approached us offering to help load both of my sons.  Within seconds it seemed we were all comfortably seated covered with a blanket, my arm safely supporting Josiah’s neck and we were off on our journey.

Our ride through the court yard was wonderful, and it was the first time my sons had ever been in a real open winter sleigh. Having reindeer pull us made our experience even more festive, with the Holiday spirit seeming to be all around us.  It did not matter to us nor did it seem to the reindeer that there was no snow to be found anywhere. Holding Josiah in my arms during the ride I had decided it was a most pleasant joyous way to share with my sons the beginning of the 25 days of Christmas.

Christmas along with most Holidays as well as Birthdays often leaves me filled with mix emotions.  I have learnt to accept that Chronic Sorrow will always be part of my world.  As I rejoice for the present love and joy that surrounds us during these special times I am also privately consumed with the Sorrow that accompanies watching my two younger sons slowly lose in their battle with Duchenne Muscualr Dystrophy.
 
However it is in this magical season, where joyous events can occur and often brings out the warmest welcomes, filling us with the wonder and awe of the season.  At the end of the ride as I lifted my Josiah in my arms-(while still in the  open sleigh)- to lower  him into the waiting arms of a  kind stranger, I was filled  instantly  with the magic of the season.  As I stood holding Josiah, like Mary may have held Jesus on that first night, and welcomed strangers that came to adore her infant son,  I could not help but feel joy, that this was all made special for my sons.  This stranger carefully listened to my instructions, and with waiting arms embraced my youngest.  I watched as he carefully placed Josiah back in his waiting wheelchair.  Then swiftly, he turned around to offer me his hand to help assist me in getting down.

It is not always easy for me to ask for help on this arduous journey with my sons.  However, I try to not let my pride prevent me from accepting a helping hand when ever offered.  For I know, often I am giving back by allowing others to experience the joy in helping and giving of themselves.  In this Christmas season as I reflect on the good Blessings we have received by the generosity of so many, I give thanks to our Lord for allowing me to see and feel Joy even in Sorrow.


In my quest to give my sons the most of this world, my new acceptance of Duchenne and my courage to feel past my  Chronic Sorrow   has helped many new doors open for us.  We are so blessed and I am thankful to so many wonderful people and organizations that have played a significant role in helping me to achieve my goal of creating a world beyond the barriers for my sons.