Discovering

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

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

the afterwards

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

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

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

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

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

prom with a promise

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

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

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

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

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

Chocolate

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

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

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

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

I chewed another pretzel smothered in frosting, fighting to suppress my feelings of sorrow and loss. I hated this disease with every fiber of my being. I was helpless in our fight against it. And despised the control it had in every aspect of  our world. My whole life was and has been consumed with surviving its viscous attacks, first with my brothers and now with my sons. Helping my sons to thrive was now my only ambition. 

I disliked the representation of aging and right now wanted nothing more than to ignore it. If only it could be that simple I thought to my self. But even packing my son now for a few days away meant packing machines that helped him thrive. Pre-Planning was essential to his stay anywhere, even for a few hours.

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

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

Heat

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

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

. 

Deciding 911 or not

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

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

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

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

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

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

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

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.