someone once said to me: Never underestimate how your words can shift the atmosphere

It hurt to even open my eyes.  My head was  pounding and I could feel an ache run up my spine.  No, I was not feeling the symptoms of the flue or a virus, at least not in the physical sense. I was experiencing something much more complicated.  I peered out with lids that felt dry and weighted. Scanning the room I began to feel  a numbness rise from the pit of my stomach almost choking me.  I wanted to hide, or at the very least be told it would all be okay.  It was now morning and I realized I would have to at some point come out from under the hidden comfort of my covers.  But to what- another day fighting a battle I would eventually  lose to.  An explosive journey with my sons where the scars of dueling with the unseen enemy wears heavy on them and rips  at my heart, as though it is being pulled through a shredder.

I listened a bit longer to the somber breathing of my youngest son Josiah who lay across the room   from me sleeping.  Peaceful and rhythmically he inhales and exhales. I looked over to wear my son Cody laid,  a sense of relief filled me momentarily.  I had not heard a  cough for the last 5 hours.  I held my breath as I embraced my thoughts looking at the clock, hoping, that my thankfulness would not interject a force that would in some way disturb the tranquility I was embracing.  One battle after another flourished with in our world it seemed.  Just as we accepted  and surrendered to one loss we were forced to battle another.  I stretched out quietly on the fold out  bed I had spent the night on, in my sons room. I ached and yearned for something to help me to move  past my present flood of emotion. THERE WAS NOTHING.  In spite of all my efforts to maintain a healthy balance in our world it was no match for the despair that stalked me now.   The current Holiday season screamed at me with reminders of a hidden cruelness in  reality.

Watching the  progression of Duchenne  in someways is like falling slowly to the ground from a distance.  You can see the earth below.  As you are falling  you realize  you will not survive the landing.  The hands and obstacles that  reach out to you  along the way slip through your fingers, merely grasping at you, for what seems to be only seconds.  Even if someone can grab tight of your sleeve they can only hold on for  a short period of time. As you near the ground below your lungs and heart feel tremendous stress. As your descent continues you struggle to breathe.   Genetics- possible friend or foe, determines how long your fall will last and the hurdles you will  have to jump over  along the way.

I can feel our rate of falling increasing each day.  I only have to look in my Josiah's eyes and  I can see how frail and tired he has become.  I  look  at the machines that have slowly invaded our home, in hopes to help aid my sons in their fall to- Duchenne.  I am reminded of the harshness growing up has brought into their delicate world.  The loss they have to endure as the events that should accompany their teen years are stolen from them. I am consumed with emotion and with out words.  

It is a time of Thanksgiving, and yes I am indeed grateful we have out lasted  another Holiday together.  I am joyously blessed to have family to share the day with.  I am more than grateful to have my sons still with me  and that I can still manage caring for them.   We have also all survived yet another Thanksgiving mystery dinner.  As I fantasized while creating our characters I felt a moment of peace.  I was happily lost in my writing  a script for us because, it let me forget Duchenne for a short period.  It let me  create a world, though briefly, that we could escape to.   Dinner is over and  we solved the crime for that  story.   But I am now brought back to the present,  and behind my smile I am worn and tired.  More drained than I have  ever  felt, not because caring for my sons has increased but because showing the world  JOY IN SORROW, takes everything I have.   I feel a new sense of loss as I look around at my family, a deep sense few will  understand.  A loss I know many of my DMD families can share.  As my sons surrender to less muscle function and the presence of physical pain,  the  world around them soars.  I find myself struggling with accepting this and the disconnection they have come to know.    Knowing as each Holiday approaches we will lose more.  AND THAT MY FRIENDS IS THE WORLD   OF DUCHENNE.   

But as I move out of this Holiday and prepare for the next I turn to my sons for  strength and courage. I will still have those days  that make even getting out of bed difficult. But I will, not because I have to, but because I know my sons  are my everything.   It is  through them  that I have been truly blessed.  WITH THEM I HAVE LEARNED TO NOT DOWN GRADE MY DREAM TO FIT REALITY, BUT TO UPGRADE MY CONVICTION TO MATCH MY DESTINY.   

40 years and still counting....

Today is my older sisters 40th wedding anniversary.  While she is celebrating it in Puerto Vallarta Mexico, I am at home with my sons, caring for her two dogs.  As I reflect today about the 40 years ago when they united, I am overjoyed for them.  For they truly have a love story that has outlasted many.  I cant help but ponder in the awe of its beauty- to know a " one and only true love", that has not ended.  Although this is something I have not experienced, personally in a relationship, out side of the love I have for  my sisters and sons, I can  attest as a witness to the magnitude of  strength and power unconditional love contains.

As a romantic I find love fascinating.  Even captivating.  It entices me  as a beautiful sunset over the ocean.  Its alluring colors reaching out to me.   Calling to me as though it carries promises for tomorrow, shimmering  just as it settles over the naked horizon.  

I wanted  to  write a blog in honor of  their beautiful love story.  To talk to the world about true real love. A Love that last.  Love that has grown in time, love that has strengthen from loss.  Romance that has blossomed to a deep unity of togetherness.  Two beings bonded together by an undying commitment to fulfill  each other as friends, lovers and life partners in  Holy Matrimony.  Instead I will savor my memories for perhaps another time, I will stop for now at just congratulating my sister and her husband.  I am so blessed to have these two wonderful examples of love in my life.  They demonstrate the power of love in the most beautiful raw form.  Together they are Ying and Yang.  They are each others destiny.  They are yesterday, today and tomorrow.   They are husband and wife to have  and to hold for the past 40 years and the many more wonderful years to come.

I applaud my sister Marie and her husband Bill, for never ever giving up.  For always standing side by side.  For embracing together whatever life has thrown at them, for  loving each other past the hurt and sorrow. For holding on to honor, truth, and faith with  love. For their many many sacrifices.  Most importantly their belief in each other and the love they found and nurtured throughout  these years.

Marie and Bill:
 I am so very proud of you both for honoring your vows of love and commitment to each other for 40 years.  Together you are an example of the amazing power of real love.   May God bless you always.   Love you guys.

over the fence and beyond challenges

I once not to long ago wrote a blog about the grass being greener on the other side of the fence.  Bravely  I admitted that sometimes it is just that way, especially in the eyes of  a  parent with a child diagnosed with a life threatening disease or in my case two children that are terminally ill.  I was and still am ready to argue to my wits end with anyone who challenges  me with an opposing view.  Sometimes we will run across a  lawn that really is truly greener and our own just doesn't seem to measure up.  I also openly said, I was fine with that because I don't even think  I  like grass, and most of the time I won't even look over the fence.   I find myself preferring to look out onto the lake that surrounds the east end of my property.

With the new colors of Autumn bursting forth,  we see the signs  of summer fading fast.  I scantly recall the memory of my grass from this past spring as it shyly, and  hesitantly peered out at me from beneath  the layers of melting snow.  The white cool powder, that once appeared as a glistening blanket,  covering  my land and all that surrounds me.  I have to report that throughout the summer as I helped my grass mend,  I did see it flourish,  adorned with a deep lush green for a period.  But I also recall  weeks of summer where scattered shades of a yellowish brown hue littered my lawn. Brown soggy wet masses of something that resembled the texture of grass.   With this realization I did look out over  the  side of my fence one day, only  to see a yard that resembled  mine.   In noting that memory, I reflected silently that they too- my neighbors,   had dealt with a few trials of their own.  I have no desire to make any  comparison as to the level of grief we each experienced.   I am sure our emotions were both driven to new heights.  We both felt anxiety and fear invade our worlds. But, with one very grossly large difference, as my neighbor worked towards a recovery I  coped with accepting more loss into my world.

This past December I was faced with more challenges than I ever imagined I would at one time,  when my eldest  "healthy son" (being that he does not  suffer from a fatal disease) Zach became critically ill.   It was with out a doubt  the most frightening, intense, 2 weeks of my life.  As doctors worked on helping  Zach recover from a life threatening illness,  my son Cody  also became seriously ill  and was admitted to the same hospital.  While I struggled to be at the sides of both my sons I still had the special needs of my youngest Josiah to tend to at home.  With the help of  family,  and the refusal to give up, I managed.

  That December has passed and both my sons have recovered.  While we still have our daily battle with  Duchenne we are all  continuing to thrive.  But I have to say for me it is with more urgency.  Those two weeks that I  watched both my sons fight for life  I also found myself fighting.  Fighting for strength to be whatever it was that my sons needed.  Fighting for strength to face my greatest fear-losing my sons to " death".  I literally left the world I had hoped would give me the comfort I needed and failed to.  I turned inward and buried myself in the world of my sons.  Using every once of courage I had,  I chose to move on and not settle for less than complete love.  I  closed my eyes to a world that denied  pain and offered little compassion. I found  a new faith with in myself with the    sheer determination to be more and to give my sons more.

We have to accept the fact that there will be times when we will see grass that will  be just a bit greener than ours.  Its just grass- but it is at those moments in our life when we have to reach deep  inside ourselves to find the strength and courage to not  give up. There truly is more out there.

As  I unpack our duffel bags from my latest adventure with my two younger sons, deer hunting in Iowa, I can't help but smile knowing  how much I  have helped my sons  push past the boundaries being physically challenged presents. I also take pride in  myself for how much I have grown.  We did not harvest a deer on this last trip.  But, we did gain something  much more valuable.   We have once again been  blessed with connecting with  people who truly want to be a part of this charismatic journey in life and that have openly pulled us into their circle of strength and love.  As my, now, beautiful green lawn surrenders to the approaching fall, I also surrender, to an inner peace with myself, knowing that I have become the strength my world demands of me.

music for the heart

I was  sitting quietly with  my pink net- book, attempting to do some writing.  I had a special topic  I needed to address and I was  finding  myself to be a bit on edge, struggling to find  the exact words to convey my thoughts.  Across the room my son Josiah sat from me, busy  at his computer playing "Mind Craft".  As if on cue I heard him start to sing a Beatles tune.  Ever so sweetly he sang "When I  find myself in times of trouble Mother Mary come to me....whisper  words of wisdom....let it be ..... and in my hour of darkness she comforts me....Let it be ....let it be....... there will be an answer."    I stopped and listened half mesmerized by the  lyrics he recited.  Then slowly he turned his head slightly towards  me for a moment, as he continued singing on his own against the music. " There will be an answer mom.  In our need, wisdom will come to us and the light will shine."

I looked at him in a  state of awe as he sang - where had this come from I wondered to myself.....If that was not enough for me to think about he played yet another tune for me right after.  I sat thinking about those words too and how they were touching me in  the moment.   He continued to sing along to  the  ballad as he effortlessly went back to his 'mind craft game".    "You are the closest to heaven that I will ever be....I don't want the world to see me cuz I don't think they understand....I just want you to know who I am."
   
I smiled the smile that those of  us who are  parents know so well.  A smile that needs no words,  from a shared moment with  a beloved  child we hold so closely in our hearts.  My eyes moistened briefly.    The power he filled me with almost overwhelmed me for a moment.       What amazed me so much was his choice of songs that  he had chosen to sing, while  I  was at a loss for written words.  I did not even know Josiah  had an interest in the Beatles or the Googoo Dolls.  I was even more surprised that he was even aware that I was having a moment of trouble, as I silently sat in  my corner of the room.  Yet somehow I was hearing words from him as he sang along with Youtube in between playing his "Mind craft game."  Words that helped me break away from the tension that had absorbed me.  Tension that had a strong grasp at my thoughts and left me feeling numb and unable to focus.

As if he just knew -he helped to pull me  away to a place where I  needed to be, a place that  reminded  me of the things I did feel inside.  I was reminded that yes,  all that I needed at that moment was with me right now.  Let it be,  it really is  that simple. 

Inside

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.

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.

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.

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.

what is sleep

It was my fourth time climbing the stairs in the night.  The fourth time I had to pull myself out of bed in the cold wee hours of the night,  to answer  the calls of the small voices that called out to me from the dark.  While the world slept  I wandered through my house again and again, to the aid of my two youngest sons.  I was tired, cold and beginning to feel the weariness of my life pulling at me.  Almost mechanically I worked through the dark hallway toward Josiah and Cody's room.  Not even sure which son had now called me I went first to Josiah.  After turning and repositioning him to his other side comfortably,  I checked on  Cody. Whom, I had happily discovered was still soundly asleep.  Carefully I closed the door to the room they shared, and began to head back to my room, down stairs.  It was almost 5am.   It seemed if I did the math right, I had been woken up just about every 1.7 hours to assist my sons.  In another 1.5 hours I would be getting up once again, to begin to prepare us for another day.  Another day, in the world of fighting Duchenne.

I crawled back in bed pulling the covers up over my head, in the great hopes  to keep the thoughts that now were threatening to keep me awake, away.  Events and moments, all neatly tangled together, exposing compromise, fear, perseverance, and hope.  Thoughts that  charged at me, like the flames of a blazing fire.  Challenging me to feel beyond the surface of my own emotions.  Demanding me to strive for more than I have ever dared to dream.  Ever so slowly I felt myself falling.  Drifting off to a place of slumber but, very aware of all the conditions with  in my world.  One thought echoed as I  slowly surrendered.  I was Loosing in a battle that I was never intended to win.

Memories of events earlier in the week flashed before me, as I felt myself become even more drawn into a state of semi-consciousness.  Haunting  moments tinged with sorrow flashed through my mind. Laughing moments of pure joy danced along the walls of my semi-sleeping brain.   Bringing with it emotions that I fervently had hoped would not trouble me now, with so little time left for sleep.  I laid there with out moving.   Consumed with my feelings, that  this very moment as still as it was, served no purpose other than to remind me of the facts I already knew.

I was almost startled as the sounds of a melody filled my head.  It seemed I had only just closed my eyes and my day was now ready to bloom with full force.  I smiled to myself, as I rose to greet the morning and shut off my alarm clock.  I was Blessed with another day to love  my cherished sons.  The trouble of my sleepless night swiftly faded.  How could I let the loss of sleep even compare to the magnitude of what deep unconditional love brought to my very existence on a daily basis.  For deep inside my hidden wounds I knew all too well that one day far far to soon, the sorrow of silence will fill my halls.  It will then be sleep  I  cling too,  in the  hopes of finding comfort,  through my endless nights and days of longing to hear my sons call out to me.
 

the unintended date

I hurried toward the front door of the tavern while fumbling with my rain coat I had grabbed from the back seat of my car .  I slight chill ran over my bare shoulders.  The first date of the evening had gone very well. As he walked me to my car and gently turned to embrace me goodbye, I felt positive, that yes, I would  be interested in another date. It was refreshing to meet someone who did not make me question my taste in men. Also it was  encouraging to know I could  attract a man who was not clingy and needy like the last man whom I had dated for a short period.  It was a pleasant surprise that I had actually also found this new suitor to be humorous and charming.  So charming that I was almost late for my second date of the night. A date I had only agreed to meet in  the hopes of discouraging his interest and reaffirm to him that he was not my type, even though he found me captivating over the phone.

I glanced at my reflection in the large picture window as I approached the front door.  I was pleased that I had chosen a slimming sundress, that displayed the slight curve of my hips and a halter neckline that accented my feminine shoulders.  The evening air carried a  cool summer breeze, but I was determined to not hide under my coat. I felt confident as I tossed my hair that this look was working well for me tonight.  I slowed my pace as I neared  the door, feeling happy how the evening had gone so far.  A deep voice suddenly interrupted my thoughts.  Sitting off to the side just outside of the entry I noticed a man and a woman.  It appeared it was me this man had just directed a remark too. I smiled with a slight chuckle, as he stated that " I was to pretty not to be smiling".  Very quickly I said " My smile was dependent on  what was waiting for me inside."

There was a comfortable busy crowd inside. A crowd that hummed with laughter and the buzz of excitement from a typical Friday night. A swift glance around the room let me know my date was not yet present.  I quickly grabbed a pub table near the middle of the room that faced the doorway. A bit lost in my thoughts I was almost caught by surprise when I heard a slightly familiar voice speaking to me.  The man that I had just seen outside was now standing next to me. Smiling, and seeming very confident.  He told me with an almost teasing grin  that he was the person I was suppose to be meeting.  I scanned him quickly from head to toe.  Very much liking what I saw, while enjoying his boldness and the  humor in his approach to me.  Instantly I found myself a bit drawn to him.  Apart of me wished truly that he was the date I was suppose to be meeting.

Very politely and rather quickly he suggested he wait with me for my date. Before I even had time to consider objecting (which truthfully was not what I  intended to do) he was making himself comfortable while also extending an invitation to  me, to come join his party of family and friends, just across the room from me,  if I still felt so compelled to wait for my apparent no show. Indeed this tall handsome stranger was intriguing and if nothing more a sweet answer to the fact that I was being stood up.

After waiting for 15 minutes I did finally agree to  accept my  new friends invitation.  I felt a definite connection, as I learned we knew some of the same people and  were graduates of the  same high school, though from different years. He was a home boy, which made conversation easy and helped me to feel comfortable  with  the people in his party.

The evening ended with us exchanging numbers and me agreeing to a dinner date with him the next night.   We shared an attraction to each other and  it almost seemed too simple to be real.  He saw me, approached me, and took a chance.  I found myself now feeling very  pleased my second date did  not show up and  more importantly I was feeling excited about seeing him again the next night and any thoughts i had left  of my first date that evening were fading fast.  

For  the record:
 We have been happily dating  for almost 2 months  from that night we met-It never ceases to amaze me just how  somethings have a wonderful way of working out when you least expect it.

explaining a moment of sadness

There are  times I can find myself absorbed into emotions that clutch at me so strongly I am literally frozen with in its grasp. Unable to move past the murky underseas that fights to control my thoughts.    Emotions triggered only after exhaustion and fatigue have left me drained and feeling my very inner strength has been defeated.  I am at these times steadfast clinging to a desire to be any where but the current plateau that I have allowed to control me. Toremnted by fear that I have somehow failed with  all my attempts to somehow control the parts of me that manifest what I detest most, my inner fear and anguish -thoughts that I have somehow not lived up to my own expectations.

Alone in my thoughts and with words driven from a passion so deep with in  me I surrender.  I surrender in hopes to explore serenity.  A quality of  peacefulness that will carry me to a place drenched with hope and consumed by love.  But  only after accepting I cannot defy the human qualities I posses and will occasionally find myself overwhelmed with- stress from this world and the journey that I have been destined to travel.

In simpler words but more direct  I am a mom first and foremost.  A mother challenged daily with meeting the needs of her two terminally ill sons.  A woman challenged by a world that demands her to be resilient and beautiful all at the same time.  A special mom who knows accepting sorrow into her world is the only way to move past despair. A mother  consumed with   hopes and dreams but also the knowledge that death is a reality in her world far  to soon for her children.

For the few who have no idea what I am even talking about- the words behind my smile says it very clearly.  The adventures I have had with my sons shows that all though there are moments short of laughter at times, I have one ambition, to be the force my sons need, to prevail in a world full of barriers. I accept there are days that will cause my smile to fade, but only momentarily. Through the beauty of  being a special needs mother I have found great joy with in my sorrow.

breaking the wall

The smoothness of his hand almost alarmed me.  How was it possible I wondered, that my own feminine fingers were more calloused than his. Slowly, he gently began to caress  my feet, that laid across his lap.  I was drawn to the softness of his touch, as each stroke of his strong hand moved in a lingering pattern across the soles of my feet.  I glanced  down at my metalic toenails. Examining the shimmering pattern of color and feeling rather happy that I had spent the effort performing a mini  pedicure in prepping for our date.  It had been such a long time since I had even thought of going barefoot.  With the recent rise in in the outdoor temperature, I found myself  now, finally able to  dress for the season, with a very well broken- in pair of flip flops.   Without so much as a small shift in his attention he continued the conversation between us.  As though holding me close and touching me  now seemed  as natural   as  the feelings that were forming between us.  His voice carried a depth of its own, as he spoke about his grown sons and the things in life he now wanted for himself.  The friendship we shared and how he desired it to bloom.  His voice held such warmth as he spoke,  with a soothing comfort covering me like a southern breeze on a lazy summer day.  Enveloping me  like his embrace,  with each syllable.

I felt myself rather intrigued with his thoughts and opinions.  Slightly, he shifted his weight to reach over and grasp the bottle of sweet red wine we had been enjoying together and poured  me another glass.  I  nestled back down next to him, eager to share more details of our lives. Sipping the wine, leisurely, I drew myself back into the comfort of his company.  I knew the hour was late, but it was as though time held no significance.  I wanted to know more, the hows and whys that had brought him to where he was  now.   On occasion, I  noticed I  pondered momentarily on specific words he used.  Letting them linger with in my own thoughts.  He rejoiced so much in our meeting and openly shared his enthusiasm at what he was beginning to feel towards me, towards us.  I fought hard to not recoil back to the wall, that I had unknowingly  allowed  to attached itself to me. To run and hide behind it.  The wall, I had spent  several years  developing.  A wall created  from years of dating and finding myself lost in  relationships that had always left me in a savage hunger and thirst for something more. Friendships, that failed in satisfying a deep yearning with in me.  A deep seated yearning to know and feel a love that existed beyond conditions of the flesh .     Here I was now, sitting with a man who had only recently captured my attention.  Allowing him to gaze into my eyes as I looked back into his.  Sensing a stirring between us that called to us, to speak from our emotions and the restless parts of our souls.  Deep with in me, I could hear the echoes of my past, urging me to  remain guarded.   But, I also felt a  part  of  me screaming to be released.  Fragments of me hoping,  the  pieces of my heart still remaining intact would  allow me to feel  freely, without hesitations and  fear. 

The night ended with a warm embrace and the slight glaze of our lips, tenderly touching to share  a moment of closeness.  As we said our goodnight and I closed my door, I felt a sense of welcome towards  this new journey and ever so slightly a dent in my wall that drew me into taking once more a risk at love



 

    

Happy 17 years

It was a  simple choice.  One I had undoubtedly been destined  to make.  A choice that a power higher than myself believed I would and could somehow fulfill.  With an army of angels behind me how could I  fail.

I looked down at the face of the child I held tenderly in my arms.  The child that had been planted and nurtured in my womb.  The child God had entrusted in my care.   His beautiful brown eyes stared back at me, almost as though he could see into the depths of my soul. He cooed  at me as a small dribble of drool escaped from his pursing lips. He was mine and I  had already  fallen so deeply in love with him
and now I had just been informed our time together would be shortened.  I rocked him gently in  my arms as a single tear  slowly rolled down my cheek. I was drained and feverishly afraid.  Afraid of the true meaning of the devastating news that had  just been given to me. I had  just been informed my beloved child had an expiration date that would come far to early.

I wanted to scream, to run, I wanted to somehow stop the sorrow that now filled every corner of my heart. I had felt this same heartbreak almost 4 years prior, when my second son had been diagnosed with the same relentless terminal muscle disease.   Here I was now again.  Consumed with sadness desperately wishing it had all been somehow a horrific mistake.

I am not sure of the exact moment, ( and even though life was  not turning out how I had hoped or imagined), I knew this was all part of some big plan meant to be. My sons were a part of me and it was up to me to let the world see the beauty they possessed.  My sons were not some mistake of biology.  They were miraculously created just like each of us had been.  While physically  parts of  them may  indeed be more fragile than most of us, both of my terminally  ill sons are  a design of Gods creation.  Meant to be  a part of the world no less than the strongest athlete.  However it was me now,  being called to help make whatever Gods plan was, to be set in motion.  To ensure, that this very delicate life they had been chosen to live, would be fulfilled to the greatest capacity.

Now  17 years later I have the great honor and privilege to rejoice in my journey with all three of my sons. But especially today in my youngest.  In more ways than I  have ever dared to imagine, I have been blessed with joy beyond words,  since  that sorrowful day, years  ago.    It is with great pride and love  I  celebrate Josiah tuning 17 on May 21st.  Happy Birthday baby,  I love you.

the bear

I stood next to my son Cody as our friend spoke to the audience.  Listening quietly,  as he passionately spoke about his work with USSA.  An organization that grants hunting and fishing wish trips to children with terminal illnesses.  My son Cody just happened to be one of these very special youths who were granted a hunting trip in 2013.  This particular weekend we had been invited as guest to a  Taxidermist awards banquet.  The night  held a very special purpose for Cody.  He would be presented during this banquet with the bear he had harvested on his trip the past September.  Not only was Cody granted the opportunity to bear hunt, but also very generously a taxidermist had offered  to personally do a full mount of  the bear Cody had harvested. 

Off to the side of me I saw the dark tall figure slowly being  moved forward toward us.  I had been working on my own speech, silently in  in my head, should our dear friend invite me to say a few words on behalf Cody and myself.   I squeezed slightly Cody's hand, as the large animal drew closer. The emotions that filled me standing next to my son, left me  in complete  awe. I had never  seen Cody's face so illuminated, as our friend announced to  Cody and the dinner guest, that this was his bear. 

As a parent, this was one of those rare moments we all  hope and dream about for our children.  A moment when you celebrate exhilarating joy, in your child's life.  A moment when you share the unexpected triumph  of exceeding the unexpected.  I was for the first time in real life seeing the bear my physically challenged son had personally harvested, 6 months earlier.  Now standing  next to us, was a full mount chocolate brown black bear.

 I drifted back in thought to the weekend when Cody had departed on his hunting trip along with my sister and brother in law.  It was a difficult decision for me to have to choose to stay back home with Cody's younger brother who also battled the same horrific terminal illness. The week before I had accompanied him on his hunting wish trip.   After weighing the different needs between Josiah and Cody it was in the best interest for Josiah's care that I stay back and let my sister Marie and her husband Bill  assist Cody on his hunt. I momentarily recalled that  day  when my sister had text me from just outside the woods to say, Cody had gotten his bear.  After only being in the woods just under 2 hours, he had his first shot and manged to harvest his bear.  Cody's first words spoken over the phone to me were" I did it mom".  Tears immediately  filled my eyes as he spoke.   To Cody and I  those words meant so much more than him having a successful hunt.  He had proven to himself he was very capable of doing something other young men his age could do.  He had just experienced what it felt like to focus on his abilities rather  than his disabilities.  He had chosen to see past his limitations, accept a challenge and feel the triumphs of his own success.  Cody with his multiple challenges, using an adapted rifle had harvested a bear, deep in the woods of International Falls, MN.

His remarkable moment of that day in the woods, was now as we stood with the microphone in hand bringing tears to some eyes.   Cody's inspiring story was even  now reaching out and touching  more lives than I had thought.

 There has been many occasions where I  have been extremely proud of all of my sons for their achievements.  As a parent  I have to say, the joy is almost overwhelming  though, when you can share it with  people who understand the magnitude of courage, determination  and strength it takes to make something such as; harvesting a bear with severe physical limitations happen.  With sincere gratitude and thanks I have to say my journey with Cody and his younger brother only begins at home.  It  is through these wonderful people we have met along the way, who have  given so much of themselves, that help in making our dreams become reality.

a very special friendship

The hallway slowly began to fill up with couples. I felt my own surge of anticipation and nervousness from the excitement of the night to come.  This was an event I was not sure at one time, not to long ago, would have been a part of Codys world.  A night that held such deep meaning, not only to Cody  and his lovely friend Kayla, but also to us, the parents of these two remarkable young people.   Surrounding us were some of the most beautiful dresses adorning fellow female classmates of my son. I could hear the slight chatter of excitement  from the young girls as they exchanged greetings.  Prom night had finally come and nervously Cody was awaiting for the arrival of his special friend Kayla and another female friend Cheyenne whom he had the honor of escorting both,  tonight, in the Grand March.

We had spent the last part of the week preparing for this day and now it was with in moments of our grasp.
Cody sat in his chair shyly scanning occasionally, the groups that had begun to gather in the long  corridor just outside the auditorium. I looked over at my handsome son in his black  tux.  Emotions pushing to burst fourth.  I was almost over whelmed with pure joy at the sight of him.  My son was now a  young man, eagerly ready and waiting, to share a special night with a beautiful young lady, that he had formed a very special friendship with.

I spotted her coming towards us in the hallway with her  mother at her side.    Her beautiful purple and teal gown flowed with each step. The tiara she wore sparkled  on her head, as though she  had a halo of  diamonds illuminating from her.  I  turned Cody's chair in her direction so he could see her as she approached.  His face instantly lighting up, as his eyes sweetly  swept over her. Her shimmering lips parting as she smiled at him.

Cameras swiftly flashed as Kayla's mother and I  tried to capture every moment we could of their greeting. This was a moment that represented triumph in the lives of two very special young people, who diligently fought against  multiple challenges daily  in their delicate lives.  Without a word our eyes met, sharing in the admiration we held for our children.  For a split second it seemed nothing mattered except for the joy we could see  in the eyes of Kayla and Cody.

Ever so swiftly and without hesitation as if on cue,  Kayla bent her head slightly toward Cody and gently on his lips she  kissed him softly.  His face instinctively turned upward towards her as if the moment was destined.  Tears of heartflet joy  filled my eyes as I witnessed his first kiss from the girl who had captured his heart.

Kayla's Prom 2014

the call between prayers

I held the phone in my hand listening carefully to the voice on the other end.  She spoke slowly with a bit of a rasp.  Announcing my name as though it was a matter of importance to her, that I understood, she knew who she was calling.  Dropping the white sport socks, I had been trying to mate, to the bed, I now paused to give  her my full attention. She continued to tell me who she was and why she called.  Her words were spoken loud and almost with a happiness, that she had managed to reach me with ease.  Very deliberate, and genuine she chose the words that would touch my heart.

I had been battling earlier in the week, with sorrow and sadness.  My heart heavily fought back at the despair that taunted me inside.  I was struggling with another phase of Duchenne, as I accepted my middle son Cody was no longer able to get up from the floor himself and was beginning to lose the  ability to climb up and down stairs, independently.  Amongst the sadness, that was attempting to grasp at me from  another day in the Duchenne world, I was also, struggling with the deep demise of my marriage.  Heartache and loneliness screamed at me  from all sides. Fear of what was ahead for us echoed through my mind, as the  crashing of my world slowly  played out before me.

 I had awoken that morning determined to get through my daily duties of caring for my  three sons and running my house, without tears.  Zealously I wanted to be the strength that would carry my sons and I from the hurt were just beginning to accept into our lives.  It was summer the sun shined bright in the sky.  A warm breeze filled the upstairs room  where I had been  sorting laundry.  My children were happily busy building with Lego's one floor directly  below me. Through my open window their  laughter escaped up to me, from where they played.  I felt comfort knowing somehow amidst all the  madness that had entered in to our lives it was the sound  of joy that I was hearing  from my beautiful sons.

The image of the voice speaking to me on the phone flashed through my mind.  I could see her smiling warm friendly face as though she was in front of me now. Very sweetly she asked " How are the boys, this is Marlene".  I recognized her voice almost the instant she told me her name. I paused momentarily with question after question flooding my mind.    Marlene was a friend of my deceased mother.  The last time I had actually seen Marlene was at my wedding, 12 years ago.  The last time I had heard the mention of Marlene's name in my world was at my mothers funeral.  Marlene, one of my mothers dearest friends was unable to attend because she was recovering from a loss of  a limb in her battle with cancer. Here,  she was now  some 8 years later calling me, out of the blue.  I had moved since my mothers death.  How could she have my new  number I wondered .   She also used the word sons.  When my mother passed away years ago I had one son, and had just learned  myself that I  was expecting.  I had not announced it to anyone, other than my two sisters at that time.  I continued to  listen, as she gave me the words I needed to hear.

Almost as though she was reading  my thoughts she spoke to me. Shakily I answered her back.  "My boys are good" I replied.  Laughter from downstairs reached my ears just as I spoke into the phone. The sounds filled my heart with joy.  Without hesitating she said "your mom is with you now" and then continued. "She knows your pain and that you are scared."   "You will get through this, she is with you  at your side." She added.  I turned to look at the photo of my mother that sat next to my bed.  The photo  I  talked to daily, the photo that I cried to some nights.  In silence I  held the phone.  A single tear rolling down my cheek.  Taking a deep breath I started to ask her why she called.  "Your tears are from love not fear." She said so confident.  Almost as though she wanted to convince me.  She then told me she had been praying this morning with a priest at her home.  Very clearly she said, she   heard our Lords voice tell her to call me while praying.  I wiped at the stream of tears that now fell freely from my eyes.  Almost choking  on my sobs I managed to ask her why me.  Why would God tell her to call me,  I had to know.  So effortlessly she said, she was dying. She had only days left.  I stammered, I  was sorry. She  cut my words off, and  said.  " No sweetie, I am happy. I  will be with God very soon, do not be sorry for me.  This is why I am speaking to you now.  He hears your sorrow.  He loves you.  He believes in you".  " Marlene" I  said softly in the phone.  "I am not my mom I do not have her strength".  "Rita" she said softly to me "You have your mother, Jesus and me with you on this journey. " You will find strength from your unconditional love for  your sons."

Before Marlene hung up she told me she loved me and asked if she could have my number to call and check on me again.  I told her she must already have my  number because she was the one who  called me.  With laughter she said "no Jesus dialed the phone for me.".   I gave Marlene my number.  However I  never did hear back from her. A week later I was saddened and shocked to learn through a mutual  acquaintance that she had passed away.  The day after she spoke to me on the phone she slipped into full unconsciousness and died in her sleep. Marlene's phone call to me earned some attention. Through a chain of acquaintances I learnt her son was particularly interested in hearing about our call because on the day she called me, she was in a semi conscience state most of the day, accept for when her visiting Priest  came to pray with her.  It would had been impossible for her to call me I was told.  But there had a short period of time when she was left alone to rest after praying, It was believed to have been when her call was made.  I kept her her call on my caller ID for several years.  I would look at it from time to time when I needed a spiritual reminder.

On occasion when I am sad I still turn to my deceased mothers photo and talk to her.  I also try in those moments of despair to  recall my conversation with Marlene. Marlene never told me my sons would be healed from their terminal disease or that  my marriage would not fail. She did not tell me to not be angry or tell me I was a sinner and needed forgiveness.   What she did tell me was,  I was not ALONE and I  was loved.  She told me even though I was strong I would know heartbreak and I would cry. I would feel pain but she also said I would find  joy with in my sorrow.  Most importantly though she told me  God believed in me for this journey and loved me even though I was angry at him.  Those are simple things,- things we might be  taught God might say.  But what touches me the most -out of all the people who stayed  close to Marlene on her last few days on earth- I was was the last person Marlene  had a live conversation with. 

  So what  I took from all of this is, and what I hope to share is,  that a dying woman reached out to me  to give something of herself to  (someone not very connected to her) me, who was hurting. I believe my tears were heard and answered.  Not in a way I would have imagined and wanted.   I still will have doubts in myself  and in the world actually from time to time.   I am human, I  will still struggle with  despair, anger and sorrow.  Sometimes I will even  fall hard and yell out loudly to heaven.  I  don't really have any answers to anything except, every now and then when I ask I will hear the words I need to hear.   It might be as simple as a call made to me - just for me reminding me in his eyes "I got this".  How awesome is that!!!!

the kiss

The wind whipped at my hair.  I fought to brush back the strands that had freely found there way to my  lips.  Sticking almost instantly to the shimmering  moist lip gloss I had just applied.  A twang of nervousness rushed through me. As I finally managed to set my hair free, only to be tossed by the wind once more, I could see my date.  Standing across the parking lot,  in cowboy boots and blue jeans, waiting patiently for me.  I was instantly pleased at his appearance.  He was early and he had chosen to wait for me outside in a very visible place. I found that to be a very kind gesture on his part.  His handsome smile broadened  as I drew nearer.  I noticed he was thinner than in his photo. I smiled happily as my eyes traveled upward.   His height was easily 6 ft.as his profile stated and his  face showed like his photo, that aging was definitely being kind to him.

His immediate embrace felt warm, and strong.  He had just a hint of cologne which  complimented him nicely, and for a split second I found myself relaxing in his arms.  It was almost as though I was being reunited with an old friend.  For two months we had emailed, texts and spoke over the phone.  He had  patiently waited all that time  for me to agree to a date, with out giving up.  Even with my delayed responses to his messages, he did not give up hope.  Here we were finally face to face.   His eyes actually twinkled as he stepped back to look at me again.  Like all the text messages he left for me each morning for the past month, (that let me know how beautiful he thought I was), he wasted no time to share with me now how truly captivating he found my beauty was in person.

 I was pleasantly surprised when he told me he  had brought  me a present.   Even more pleased when he handed me two lip glosses  in different shades of pink. The tubes each had a light attached to the wand  and a small mirror on the side of the tubes.  He had most definitely put some thought in his gift and did his homework in reading my profile.  I was the girl who never leaves home without lip gloss. He also said he  had brought a little something for  my two younger sons- baseball caps.  I was touched at his sweetness.
 
Dinner was wonderful and our ability  to converse with each other came so naturally. Not once did we have to wrestle through awkward silence.   He listened as I  spoke about my boys asking me questions with deep interest and shared with me bits about his own children. We spoke briefly about our divorces.  Sharing just a small tidbit of why our marriages ended.  I noticed as he spoke he was very respectful toward his ex, another attribute I found to be pleasant.  When dinner was done we both knew very well the feeling was mutual, we wanted to see  each other again.  He had passed all my immediate requirements  and I knew with in five minutes of seeing him face to face, I would not mind meeting his lips with a kiss sometime if we were to go out again.

As he walked me to my car we embraced again. I  was almost sad to have the  night end.  But I wanted to also hang onto the newness we shared, and let the magic of two friends bloom slowly. I  felt his lips slightly brush the top of my head as he tightened his arms around me. It felt good to be held in his arms, he was strong and I felt safe, something I had not felt in quite awhile.  I stepped back to look up into his soft warm deep green eyes, he seemed so genuine.  Slowly we moved toward each other with our eyes locked,  and ever so gently as we met, I felt his lips very lightly rest on mine. The first kiss, with our lips only partly parted, so perfect, so light and so sweetly genuine. Umm- yes we are going out again, and every morning he still is sending  me a text-  wishing me a wonderful day and  to tell me how beautiful he thinks I am.

lyrics

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

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

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

feeling empowered

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

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

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

the art of dating

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

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

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

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

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

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

 






 
       

love and the social network

The screen flashed at me.  Alerting me I had some new emails.  I scrolled through the  photos of the newest group of men interested in possibly meeting me.  My popularity seemed to be increasing and my choices of pursuers told me my efforts were drawing a rather diverse group of possibilities.  I paused momentarily at one caption.  Simply stating "Fly with me" instead of hello.  I was most definitely intrigued.  I read my new email, and then read it again.  Shook my head as I smiled to myself.  Each day seemed to be introducing me to new and more exciting  invitations.  My four weeks since joining the social network world so far, had been if nothing else, enjoyable.    No doubt,  it was expanding my world and my view of what the market held.   The few dates I had been on, had been pleasant, but lacking so far in what I  found to keep my interest.  Nothing had screamed at me -loud enough, to pursue a second date.  But I was finding some interest in a few new faces of men who had recently began conversing with me over the phone.  It dazzled me while I read my emails, at the opening lines some men used.  Creativity was not lacking on this site. I had even had several marriage proposals.   I decided I would come back to this latest email.  Giving  it some thought,  before answering, after all what does a girl say to an invitation to fly with a stranger. 

 I went through the list, reading my  remaining emails, only to find  myself a bit  distracted, by  yet another beautifully written note.  A note  telling me how much a certain man  looked forward to meeting me and that just receiving a text from me brightened his day.  He, I found to be well grounded, a bit of eye candy and carefully flirtatious.  Also he  was not hesitating to show me his romantic side by calling me and playing my favorite song over the phone.  Qualities that had moved him up the list right there.  The world of dating most definitely for me was not lacking in compliments and attention.  I was pleased with the amount of text and emails I was receiving in such a short time.  Attention, sadly  I  had been missing for quite some time from my previous relationship.  It surprised me as I thought of my past, with just how much we are willing to put up with, in a relationship, that we believe offers us the one thing we desire most-love.

 Re-entering the dating world again,  I found now  to be actually a bit exciting.  Meeting new people can be very alluring and fascinating, especially when they share their enthusiasm towards you.  I also find it very interesting learning why some of us become so locked into into acting and looking a certain way.  A bit  perplexed why  many adults resist change like a plague, and have no interest in personal improvement, yet strive to capture something so very far  out of their reach.   Also perplexed why some of us just accept good enough is good enough  and some of us want desire so much more.  It amazes me how often the way we perceive ourselves is not always the way the world sees us back.

My thoughts were interrupted once again, with a second email from my friend who likes to fly.   I was immediately brought back to the present.   Hmm....   Was an airplane ride to much for a first date?   I wondered?  How serious, could this invitation be?  This man  had however, with out doubt, did his homework, before contacting me.  His pictures appeared to be current dated in a sequential order.  His face was clear and visible.  He captured a full body shot of himself showing me he had intentions of letting me see as much of him as possible.  The eight photos he had uploaded for me, told me he had many interest and several big boy toys.  One in particular was a small plane with floats.  I was impressed, he had taken the time to give me a profile of himself and then taken the time to actually read mine, by commenting on it.  Below his picture I read more. He worked for the Delta Airlines. He found my  smile captivating  him as well as what I wrote.   He said he was searching for love.  Like most of us hopeless romantics  in the dating world.  Hoping to find someone that made the mornings  a little brighter the nights a little warmer, the days a little happier.   Another  romantic?? possibly.  Another soul searching for love- most definitely.

Four weeks ago  when I first set off on my new adventure of dating  I was a bit apprehensive. Afraid I would be flooded with a world of men in need of  makeovers "immediately", or at the very  least men in need of some pointers on how to impress and approach the dating world with results.  While that  thought represented a large group of men it fleetingly left me for several hours while on my  first date.  He was put together  fine. Tall, very well groomed and very kind, but  I simply felt no buzz to continue on to a second date even though his invitation of a night on the town was tempting.  Apparently I also learnt that was a fact that  would  be important for me to make  clear, as soon as I realized it on my dates to come.  My second interested  caller,  along with a bouquet of flowers attempted a  much more scientific approach to win my interest.  He felt confident enough to evaluate the time we spent together by telling me he noticed my pupils dilate several times while we conversed over cocktails.  Even though my words the next time he asked me out were saying no he believed my eyes had told him I  had an interest. I must say I found this to be an almost fascinating, yet an  inappropriate  bold approach.  He was not successful in persuading me, after all I had dated enough in the past to know if and when I felt something.  I may not always know exactly what I want but I do know what I am not interested in. Being told how I feel is not one them.    As  Kind and sweet as some of my male encounters have been  it just is not my job to help lonely hearts not be lonely or give them false hope.   I  barely have enough time to take care of my own heart and answer the emails I find most tantalizing.     Having someone find me interesting  and me not reciprocating the feeling  is an issue it seems I may need to  remember to address firmly. 

So  I am delighted that I have a few female friends reentering the dating world with me this time. Our taste in men differs enough to not create conflict and yet share in  the excitement of possibilities of what our searches turn up. Which has made dating even more enjoyable for me.

Dating in a time that can connect you to someone across the world instantly, almost, has no limits, if you are willing to go that far.   But the chemistry and attraction felt between two people still works the same. The social network really can connect you to the world beyond your backyard but it can not make your heart fall without your consent.  Inside you know when you have an actual  heart interest.  A possibility that could flourish in love.   I myself  may have to work on my pupils a bit, to keep from giving out the wrong message.  However I applaud my fellow romantics.  Those of us brave souls  willing to  at least take that extra step to search for love again by creating  a profile  that says I am desirable and open up to the world of dating.  Because after all finding love is really worth the effort.      

the new

I gave my image a quick  glance over through the glass window.  Pleased at the reflection that smiled back at me, I slowly entered the heavy wood framed doors.  A tinge  of nervousness caused a small flutter with in my abdomen, as I carefully  scanned the dimly lit bar room.  Trying  desperately to keep the photographed face of my date pictured in my mind while I searched for him.

 It had been a few years since I had last been inside  Keegans Pub, and  the pleasant familiarity came rushing back to me instantly.  I had indeed enjoyed so many casual platonic meetings here in the past.  The comfort level reminding me once again why, I had  chosen this place tonight.  First dates had always been  easy for me in the previous years following my divorce.   I wondered if tonight would be any  different.  After all I was older and wiser with  nothing to loose, knowing  I would leave exactly as I came.   I felt a pair of eyes looking  at me from a cross the room,  I looked up and  there he was.  His handsome smile broadening as our eyes met.  As if on cue he rose from his chair eagerly waiting my approach.  Yes I was definitely  experiencing a slight case of the jitters.  Something I had not felt in quite sometime and found now to be  very interesting.  Why and how I wondered, did he have such an effect on me. As I reached the table, instantly he stepped forward to extend his strong hand in a firm greeting. His scent  almost tantalizing me, as his hazel eyes lingered just slightly enough, to let me know I had commanded his full attention.

Conversation and the surge of occasional  laughter managed to last between us for several hours.  I embraced his light humor and found myself almost dazzled  by the ease of our conversing.  I sighed momentarily remembering  the uneasiness I had felt earlier in the evening.  The night  simply could not have went more perfect if  I had  wrote it and rehearsed it  myself.   I was in awe of the fact that the night was shortly coming  to an end.  We rose together to say our goodbyes but  his embrace told me,  this  truly was just hello.   My nap from the dating world was over and a new journey was possibly on the verge of beginning.  I felt good  about the steps I had taken to get to where I was now,  and happy to be able to share my moving on, with a new attraction.        

beyond

 His blue eyes looked back me as though he was lost and unable to show any emotion, almost as though he was void of all human feeling.  In cool silence, with out words  he sat.  His strong   hands, the hands that had at one time tenderly held my own, now laid  neatly folded, in front him, while he blankly, looked at me.    I searched his face for something.  Anything, that resembled an inkling of the  emotions I desperately yearned for.    My mind raced with thoughts,  and memories of us, while I fought  to hold back the heartache that was anxiously waiting to consume me.  Slowly I parted my lips to speak to him from my heart.  A heart, that for several  weeks, now had  felt as the though shards of glass had severed it into broken sections.   My  words echoed in my head with each syllable as I spoke.  Desperately I wanted to reach into the depths of his soul.  Clutching at the smallest bit of hope, I waited to hear him say something, to help me not give up on him.  Something  that declared we still had a chance together.  Hope that somehow I could find some passion for me, with in him alive.    His defensive response only reassured what I had already began to realize months ago, was missing.   After all this time, he still could  not tell me the three words I wanted to hear. There simply was nothing left for me to fight for.  With out warning,  I  swiftly rose  to my feet and walked away.  Leaving him  sitting at the table  alone,  in his protected world.  A world where he had  allowed  fear to build a wall.  A wall  that shut out the one thing we all as humans strive for.  His  past holding him captive in a space void of the beauty which comes from love.   
   
My drive home alone  that night was  met with a long thoughtful silence.  A silence I embraced.  Somehow, as much as my heart ached for the man I had fallen in love with, I knew it was what I needed to do.  He had told me he had feelings but ....With out conviction of the words, he knew I longed for,  and needed to hear.  His own use of the word BUT told me more than he knew.  I had put aside my own fears and shared with him  from my heart. Sadly he was no closer to telling me something to keep me  from giving up.   As I drove in my silence it  become clear,  loosing me was something he had already prepared to do.  It was a choice he had long ago accepted.   After four years together,  the best he could give me was the willingness to work toward an  agreement, as though love was capable of standing still and  be negotiated.

In  moving on and rediscovering me, I find myself deeply consumed at times analyzing the dysfunction of so many humans. I am staggered by the endless search for love from the world that surrounds me.  The willingness to search for love by so many, but the lack of change  to attempt to attract our hearts desire, and the strength demanded  to hold on to it.   As always in all my endeavors it is my hope to gain insight and knowledge. To walk away with more than what I began my journey with.   True satisfying  love comes from the heart and not the mind.

 

Every now and then I am given the opportunity to see my sons throw a curve to Duchenne.  Rejoicing  with what might  be  a seemingly small feat of muscle strength to the ambulatory world yet a very large triumph for my sons and I.

Yesterday shortly after dressing and  lifting Cody from his bed into his desk chair on wheels I wheeled him into  his  bathroom  to brush his teeth.  A ritual he took pride in and  was still able to  perform daily with minimal   assistance.   I fixed his electric tooth brush up with tooth paste and handed it to him.  Laying  a hand towel next to him, I watched momentarily as he slowly moved his hand in front the motion sensors of  his bathroom faucet.  I stood there wondered for a second just how much longer he and Josiah would continue to prefer the desk  chairs in the house rather than their power chairs.  Carefully he held  his toothbrush under the running water. Satisfied he had his task at hand under control, I could now concentrate on assisting   Josiah with his morning hygiene.  Shortly after I had Josiah lifted from his bed and seated him comfortably in his desk chair I returned to check on Cody.  Much to my joy he was not only done washing his hands and brushing his teeth he was now attempting to etch his way out of his en suite, by  propelling  himself with his feet backward into the hall.  I was thrilled this was still a physical capability for him, and feeling hopeful the he was getting a bit of muscle stretching  in return with out my assistance. From the back of the chair  I assisted Cody slightly  over the threshold leading from his en suite.  While most of the door ways though out our house on the main level had been modified to serve both of my two younger sons needs, this one  still  required a bit more muscle strength to propel by use of a  wheeled office chair.

Cody now free to roam on his own worked his way back in to his bedroom.  I watched as he paused slightly at his closet door reaching for a stretchy cord with a clasp attached.  He diligently raised his arm to pull the strap from the door handle. With deep concentration he worked his fingers to maneuver the strap around his head.  Leaning  forward he draped the elastic cord around his neck. Not sure why he wanted the cord on I watched him continue to move.  With a force all his own he managed to get himself positioned in front of his PS3on a shelf  just at foot of his bed. I stood amazed .  Cody was defying Duchenne right now.  He was 20 and a half.  Clearly arm strength was diminishing as well as leg.  Cody was very limited with his ability to use his arms, yet there he was.  Placing  a neck cord  over his head,most likely just because he could still do it.  Using his feet to push himself around and feeling happy he could still manage.

I smiled as I recalled the past year.  2013 had been an eventful year for us. Yes it had had its up and downs.  But we had made it through all of it.  Not with out tears and some losses, and the end of the year has personally been difficult for me.  But the year has filled me with great joy.  Watching  Cody graduate from high school taking the lead.  As a Duchenne mom there are no words to describe the magnitude of joy I had as Cody personally accepted his diploma.  My child with a fatal disease and a cognitive delay  graduated with  honors.

 This year one day out of the blue Cody had told me just how he felt.  He  looked up at me and said "mom I have a good life".     That told me all I needed to know.  My son- at least right now- was happy.   I felt relief.  It was a year that still had its trying moments and hurdles for us to over come .  But both boys managed to letter in adapted bowling at school. Make the honor role and attempt a few new things.    Josiah and Cody went Turkey hunting, was successful at Salmon fishing.  This past  fall  both also went bear hunting.  Cody after only being out in the woods for 2 hours had harvested his own bear.  Yes, clearly we had been blessed to  have these opportunities.  Memories of very special moments I shared with my sons.  I felt good about the year we had had.  I felt proud of what I had  accomplished myself as a  single parent without their fathers help at all.  Despite the comments and negative rapport that had worked its way back to me, I had indeed accomplished more than I would have thought possible. Whatever was said about me did not matter.  I had won the praise of my son and that was all that counted.