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.

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. 

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.

  

the scrape - chapter one, continuation

     

  Eve knew seeking medical attention would mean questions. Questions would demand answers.  Answers, she just did not feel comfortable with giving just yet.  She needed more time.  More time to get her story right. 

She bit down on her lip as her handsome cowboy dabbed again at the open wound on her head.  The pain was stabbing and made her head ache even more. She looked into Cody's deep brown eyes again, they seemed so concerned. "Eve" he said  as leaned over her again to turn her head slightly so he could look at the wound from a different angle. "Honey I am afraid there is not much more I can do to help you at this point.  You are still bleeding.  You need to see a doctor.  I can take you right now to Bluegrass there is Doc there." He said patiently. "Its just 30 minutes out, from here."

Eve felt a slight  panic rise inside her.  Why did things always have to get complicated she wondered silently. "Can I see- a mirror".  She asked hesitantly. Cody stood up and said he would be right back.  She watched as he moved to the other room.  She had to think fast.  He was so distracting, it was driving her crazy.  It seemed ridiculous, she reasoned to her self, that she should be so intoxicated by his looks. Yes, he was handsome, but so were at least a half a dozen  other men she could name from her past. She was use to being surrounded by charming good looking men.  Well, that was all  in the past, in another life, she quickly thought to her self.    A life she know longer could speak of.  A life she hurriedly was forced to leave behind.

Cody came back holding a silver slightly tarnished antique hand mirror.  He gently placed it in her hand, and stood back to watch her expression. She turned the mirror over in her hand, studying the floral embossed pattern.  Then looked up to where Cody was standing.  He sensed her question and quickly told her it had belonged to his mother.  Her eyes widened as she looked down at her reflection.  Her beautiful long blond hair was matted and tangled.  Mud with specks of  blood framed the tresses that cascaded around  the sides of her once pretty delicate features.  Her nose was smeared with dust and dried blood.  Her left cheek was scraped and bruised.  Her red and puffy eyes searched upward and stopped just above her left brow.  Silently she studied the gaping wound on her forehead.

Eve knew Cody was right.  She needed stitches at the very least, it was obvious.

Cody lifted her as if she were a child gently placing her in his  big black pickup with enormous tires. There were so many questions he wanted to ask her but for now all he was concerned about was getting her medical help.  He wanted to assure her whatever she was running from could not hurt her now, as long as he held her in his arms.  Somehow he felt drawn to her and the mysteriousness of her appearance.   Her small figure fit perfectly in  his arms, and even though she was covered in mud and streaked with blood he could see an almost haunting beauty about her.  Eve let out a large sigh as he settled in next to her in the drivers seat, she could feel the dizziness  overwhelming her once again.  They drove in silence for several minutes before Cody asked her how she was feeling.  "I still feel a bit dazed" she admitted to him.  "Lean back and rest". Cody told her "we will be there shortly".  Eve let her eyes close only to happy to escape conversation and any questions he might have for her.   She wanted to tell him as little as possible.

It seemed she had just closed her eyes when she felt a gentle hand on her shoulders.  "Eve we are here" he whispered to her. Eve opened her tired eyes.  Only to see Cody's dazzling gaze in front of her. Swiftly he lifted her from his truck and carried her toward the clinics doors.

Cody sat eve into a chair in the waiting room and walked towards the front desk. The slightly elderly woman immediately looked up to where Cody stood with a warm smile. Eve sensed Cody must have known her from the way they addressed each other. 

Think Eve she thought  to herself. I need to explain -what should I tell the doctor. she wanted badly to tell him the truth but knew that would only make things more complicated. Cody sat down next to Eve. It shouldn't be long he told her. The doctor is going to need to know what happened he said gently. Eve looked down at the floor. Cody had been so helpful she owed him an explanation At the very least.

Mary studied the couple from her desk. She had known Cody a very long time. It didn't surprise her to see Cody with an attractive woman, but it did surprise her for him to be with a woman who was hurt. She could tell from the way Cody acted he did not seem to know her very well. she hoped for Cody sake it wasn't any trouble. It wasn't like Cody to attract trouble but clearly something was going on.. Cody was a looker and considered one of the few eligible  bachelors in  the area. Mary knew there were at least  a half dozen single females that came from good families that would die for a chance to attract Cody's heart. 

She knew Codys family from way back. She could not help but feel concern  for him now.  He had taken it very hard the break up he had 2 years ago with a beautiful young co-Ed from  California.  Since then she really had not seen or heard  much from him. He had mainly kept to himself. What was her  name Mary thought to herself.  Judy no Julie,  yes it was Julie. Tall blonde dazzling smile. Cody was hardly seen with out her. The town folks saw them as the perfect couple that was until  the night she took off with one of them Malone    brothers . Now there was trouble. The Malone  boys had no regard for the law and even less in respect towards folks. She had seen them come in for stitches more times than she cared to count. Bar brawls seemed to be a past time for them. And  that's when  the lights turned on. Maybe this new beauty had been rescued from the clutches of one of the Malone boys.  Yes she could clearly see trouble like this from that youngest one. Mean  as a rattle snake, but a charmer with the girls. Why she even had to admit to herself he was eye candy, that one and smooth . If she had a daughter she would have put up barbed wire to keep that one away. 

Doc Keller called for Eve to come in now. Mary's thoughts came quickly back to her work . She would know soon enough what was going on.  

Doc Keller was a kind man. He was short and  a bit stubby. Deep burrow lines across his forehead, no doubt from showing concern towards his patients . He held out his  and motioned  for her to sit on his exam table. Then gestured for Cody to wait outside. Eve relaxed a bit patient confidentiality would by her time.  Doc Keller first words were what happened. Eve felt the room spin and then go black.    

 Eve slowly opened her eyes and stared at the ceiling. Slowly her mind  cleared. She turned to see Doc Keller  smiling down  at  her. "How are you feeling?" He asked with concern  as he shined a flashlight at her right eye. Eve stared straight ahead. "You do have quite the bump on your head." He said looking into her left eye. "Is there anything you want to talk about." "Anything that might help me understand how to help you." 

Eve felt a panic start to rise in the deep pits of her stomachs. She knew she had to get help but she was just not sure  who to trust and just where to start. A tear rolled down her cheek as she  turned towards Doc Keller. The words flew out of her before she had time to draw them back. "I had an accident." She said slowly. Doc Keller waited patiently. Eve paused searching his face. He reminded  her of her own grandfather. A kind and generous, short man. She missed him  dearly  right now. She found herself wishing she was that little girl again who use to sit on his lap listening as he talked about the days of growing up on his dairy farm.  Eve refocused.  "What's the last thing you remember about the accident. Let's start there." He said gently.  She  relaxed  some. Okay that sounded easy enough. Okay she thought for a moment. She remembered walking towards the farm. Feeling pain, overwhelmed with fear. A face flashed  through her mind. A mans face. Rugged.Shadowed  with a few days growth of facial hair. Yes she remembered pushing him away. He was trying to make her go with him. But why her thought raced together.  Why was he forcing her. "There was a man." She began. "He was dragging me towards a building." She paused shaking her head. A gun. Yes she remembered  seeing a gun. "The story began to unfolded. She told him she just could not say anything more she just could not remember. But asked him to call the Maron County 

Police station. "Ask for Sheriff  Barry." She told him. Tell him you are calling for Eve Porter. " Doc Keller did as she asked . He handed her the phone as the voice on the other end instructed him.  Doc Keller stepped back to give her some privacy as she softly spoke into the phone.  The conversation was short  and Eve answered with a few Yeses then  handed the phone back to the Doctor.  

Sheriff Barry spoke calmly into the phone. "Keep her there till I get there." He said. "Don't let anyone else see her. Eve noticed the concern lines on the Doctors face deepened as he listened. Oh she so desperately wanted her old life back. She wished for the comfort of her own apartment. Her friends. Most of all her family. 

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.

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.

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".