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.