the argument

mending of hearts



I poured the remains of the bottle in to my stemmed glass.  Quietly I listened as the remaining ice crackled from the sweet cool liquid swirling in my goblet. I kep my eyes down to avoid looking at him,  swallowing hard as  the  pink drink slowly slid down my throat.  Hoping  to feel the effects of my  wine, soon.  Wanting desperately to feel  release from the tension that had been  tormenting me, I took another sip and waited in silence.  Some how I  had to move past the the present.

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

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

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

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

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

  We had somehow moved past our anger and hurtful words.  Even with my wall still  partially en tacked, I was finding room to accept what he was offering  me now.  He had managed to use patience to help us shift our emotions.  His lips lightly grazed the top of my head.  We had somehow now entered a new level with in our relationship. 

On loving ......

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

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

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

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

Peace and Love

Accepting the helping hand

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

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

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

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

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

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

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.