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Saturday, December 28, 2013

the after -

A single tear rolled silently down my face as I watched the emergency room team  ardently search for a vein to connect  IV lines into. Numbers on the monitors, recording  my sons vitals,  sent a surge of fear throughout my entire body.  The EMT's eyes met mine,  telling me I had every right to feel fear.   I searched the room for a face that could give me  some reinforcement of hope, but instead I saw something else.   It almost seemed as though none of this could be real.  As though, it was a bad dream, that I could not awake from.   I stood holding the limp hand of my eldest son, watching in a frozen  state of panic, as his swollen blood shot eyes  rolled back into his head, leaving just a glimmer of white visible.  His  young, strong physique now collapsed.  He laid curled in a half fetus position, unable to straighten from bouts of pain that ripped  through his dehydrated body.  Softly I whispered to my son the only words that mattered right then.  How much I loved him and needed him, how much his brothers loved and  needed him. 

I watched for what seemed like hours unable to move as his blood pressure continued to slowly drop. This was my first born  I was now watching,  clinging to life.  My strong healthy son who was not living with a fatal disease.  My son who did not have Duchenne Muscular Dystrophy.  Zach the son who had always been my light and support.  The son I turned to at times for strength while Duchenne viciously attacked his brothers.  My heart ached and my mind raced wildly, trying to make sense of what was happening to him now. 

Briefly, Zach opened his eyes and looked at  me, his face twisted as he winced in severe pain. Slowly in a weak quiet voice through sobs he told me, "he was sorry".  His eyes rolled back exposing only the whites again, his body going  limp once more.  My mind screamed for him.  I pleaded softly for him to hang in there, to be strong, for me.  Holding his hand in mine I also silently begged God to not take him.  I was breaking,  feeling as though parts of me were dying.  I was alone with my fear and begging for God's mercy. Watching helplessly as my eldest son fought for his very life, right before my eyes.

I tried to stay  as much as possible out of the  ER staff's way, while they  worked on Zach.  Periodically exchanging glances  with his father, my ex.  This was the second time in a month we had spent time together in concern and worry  for our children.  This time it was a serious matter of life and death that had brought us together.  While Zach's father questioned every medical staff and procedure I held Zach's hand.  His hand, that  I had no intention of letting go until he was stable.
   
We arrived at the ER sometime around 5am,  It was noon before Zach  was stable enough to be moved to ICU.  His blood pressure had risen just enough to safely start pain meds through his IV. Our wait had  now only just begun. We were told several times Zach was lucky.  We were lucky.   Very lucky he got to the hospital when he did.  What Zach had  thought was only the flu and tried to let runs its course, turned out to be so much more and worsened very fast.  Zach had contracted Bacterial Strep cal Meningitis.

After hours and some reassurance he was holding on,  I walked to the waiting room with Zach's father to allow  Zach's girl friend  to have a  moment alone with him.  She had  patiently sat waiting in the ER lobby, hoping and praying for the last several hours, while we hovered over our son.  In  over 9 years I had not heard my ex ever ask how I was doing.  Not even 4 years ago when My youngest Josiah underwent a grueling 4 hour spinal fusion surgery.  Somehow now, here it  was.  Compassion from him, meant for me.  How was I, he wanted to know.  I had to think for a moment.  I really had no idea.  My eldest son was critically ill, fighting an infection running throughout his entire body. We were now in the stage of waiting to hear if there would be any permanent damage and if the antibiotics were working.    My two younger sons with a terminal illness were at home scared to death for their big brother.  Wondering when they would see mom again.   I had no idea if they had been infected.  I was feeling overwhelmed with making arrangements to have them cared for while I was away.  How was  I?  I was drained,  tired, literally breaking inside, angry and hurt.  I  ached for something I did not have in my life.  Something I did not want  from him. Not now.

Tears filled his eyes as he looked at me.  For the first time in a very long time I saw that he truly still cared.  We stood looking at each other.  Arms hanging at our sides.  Every ounce of energy  I had left belonged to my children. I would find time later to cry my tears.    I smiled  at him assuring him I was fine, telling him Zach needed us now and nothing else mattered. 

It pleases me with over whelming joy, to say, Zach has since made a complete recovery.  But the memory of seeing him so ill haunts me still.  It took everything I had in me, to not completely break.  I knew I needed to be strong, to be there for Zach, and still take care of Josiah and Cody.  None of it would have been possible, without my wonderful supportive sister Marie, and her husband Bill.  Who have always been there for us, no matter what.  

However it  scares me beyond anything imaginable.  This is the fate to come with my Josiah and Cody.  This is not  the end of   ER visits and quite literally life and death for us-for Josiah and Cody. Three days after Zach was released from the hospital as an outpatient in the agreement he would return for daily infusions, I was back to the ER with Cody.  Its never a good sign when the hospital ER staff recognizes the family name.   I had several more days spent holding Codys hand while in the hospital as he fought a virus, and also making sure arrangements were made to help Zach out.  Luckily Cody's illness was not exactly life threatening.  On the second night of Codys hospital stay a young male nurse introduced himself to me as part of the staff that would be helping Cody that particular night.  With out even asking, this young man brought me a cot to sleep on.  A pair of pajamas to sleep in and a bag of toiletries.    I watched silently as he made the cot up for me.  Slowly he held  the pajamas out to me and said "mom, I watched you most of the day, you need rest".  He was right.   It had been a long difficult day, with Cody experiencing side effects, from a narcotic given to him for pain.  But the night from hell, was yet to come.   Cody had an even more adverse reaction,  to yet another drug he was given for pain relief. It  broke my very spirit to see him suffer even more.  Curled up  like a fetus, facing the wall, I let my  tears silently and freely fall.    There was nothing any of us could do, except wait for this drug too also pass through his system.

I realized something that night,  that it was while I was  holding Zach's hand  when I first felt as though the life I once knew was truly and slowly slipping away.  That has,  in many ways really challenged  my thoughts and me. Leaving me questioning what really matters in my life. How do  I find away to rejoice for those around me, while slowly  my  heart breaks for the losses Josiah and Cody face daily?

I celebrated this Christmas feeling absolutely joyful that I was able to share this Holy time with all three of my sons at home. Giving thanks for the tremendous support we are blessed with. Very thankful for all the prayers and love that was sent to us.   In all honesty inside though, it was a very difficult and emotional time for me to be with my sisters and their families.  I love them all dearly, and yet I find myself in deep sadness,  because they know and live a life I will never know.    Some of you will not ever get this.  Perhaps that is your own Blessing.  But to those of us (You) who truly understand parenting a sick child, single parenting,  loosing a loved one,  letting go of a dream, or my favorite( the big) feeling- joy in sorrow (perhaps now I have reached more of you)- you will understand.  I am at present still fumbling through jarred emotions that leave me  feeling a bit crippled and lost.  As though I am with out strength and unable to move beyond them.  As much as I dislike some of what has been awaken in me  I can not deny its existence. I can not ignore how utterly different and disconnected   I feel  at times even from my sisters and their families. 

I am not searching for any answers.  Perhaps just the occasional comfort, from  knowing, that somehow all of this  suffering,  especially that of which, I see in my wonderful loving  DMD families,  has somehow made a  difference in the world -our worlds-somehow, somewhere.  That if nothing else, the daily battle alone of living with Musclar Dystrophy  is enough to cause a change in hearts. To bring out LOVE when it is needed most.   


 




Thursday, December 26, 2013

One last Christmas






   Laying next to my mother, listening to her shallow breathing,  I felt a small flutter with in my womb.   I knew I carried life inside of me and was over joyed with the very thought.  It was just a few days before Christmas, and I  wanted desperately to share my joyful news with her.  It had been days since we had even seen her beautiful hazel eyes open, or flutter once.  The Hospice team had alerted us as her time to leave us draws near  we would notice changes in her.  Within the last several days she had become almost  unresponsive to  our  touch and movement around her.  Needing to feel her presence more I snuggled in closer, to her  warm motionless body.   She had grown so fragile since the cancer had taken over. I felt as though my own petite size was almost amazon next to her.  

    I was expecting my second child and was not yet showing,   but the fatigue and morning sickness were a daily reminder to me of my own present  delicate condition.  Laying my head  next to where my Mother rested hers, I watched my first born as he danced around her bedroom, excitedly singing Christmas carols with all the sweetness of his young voice. It brought me great joy that the spirit of Christmas bubbled with in him.   I  embraced this opportunity to  rest and be entertained.   Wishing ardently to be absorbed into the joy this magical  season brought to him.   I was just nearing the end of  my first trimester.  Fear, left behind after a miscarriage in a previous pregnancy cautioned me  in the timing of my announcement, that I was indeed with child.  I smiled as my eyes followed Zach  my then three year old first  born,  as he happily moved around the room.  His innocence and joy almost  illuminating.     He did not question anymore why Grandma slept constantly.  Almost as though he simply  accepted that things were what they  were and that was fine.   All he knew was that it was getting closer to Santa's coming, and that gave him reason to celebrate.  My news that he would be a big brother could wait for another time.  A time  when we could embrace life together.

 Zach slowly disappeared to gather up some more furry stuff animals to join in his celebration.  I seized the moment to then softly whisper to my Mom, I was expecting.  She laid silently next to me. I snuggled even closer.  Hoping to have some sign she had heard me.  She never responded.   I may never know whether she actually heard me, but just knowing I was given the  chance to tell her filled me with a sort of  teary peace.

The advent season is once again amongst us.  As I  begin to prepare for another Christmas season with my family I find myself recalling  more recently passed holiday seasons that have  also presented me with a few challenging heartfelt moments.  Moments  that at times left me feeling lost in fear and sorrow.  Clinging to hope and prayer.  It was just  2 Christmases ago when my two oldest sons  both became ill and had to be hospitalized.  First my eldest son Zach  contracted a very serious case of bacterial Meningitis. The days that he spent in  ICU fighting for his life is etched in my memory for ever .  As we watched Zach slowly become stable enough to be moved from ICU to a hospital room   my  second son Cody  became ill with a virus and was also admitted to the same hospital for treatment.   They both recovered in time to celebrate Christmas at home.

Today  all my sons continue to be doing amazingly well. While Zach has recovered remarkably, Duchennes symptoms have progressed considerably, in Cody and also my youngest son Josiah.  But even with that, for now, I happily can claim they all continue to thrive.  Even with all the challenges that Cody and Josiah are faced with daily.  But as I recall those special holidays I am flooded once again with emotion.  No longer a sadness dwelling in me.  But now, a realization of  how precious memories are and how triumphant love is.   I am still reminded of the fear that swept over me as I searched inward  years ago  to find  courage, to be the strength that was  needed of me for my family. During those  extreme times that  demanded so much from me, also came some very real self examining of my  life, hopes, and needs.

We did manage to celebrate  Christmas 20 years ago for the last time with my Mother.  Gathered around her bed,  we all sat softly singing Christmas carols through quiet tears.  We took turns opening up small gifts in an effort to maintain the ritual of giving, for our children's sake.  Its a Christmas I will always cherish,  a time very  close to my heart and a time that I turn back too from time to time when  I am in a difficult place.  A special  time when I  relied heavily on love and hope to help me move past my pain.  A time that  I shared with my amazing sisters.  A time where we were given the gift to spend one last Christmas with our mother together.   My mother never regained consciousness and passed away three days later.    Just as she took her last breath a single tear rolled slowly down her cheek.  She held on for those last days we know for us.  To give us a gift,  one last Christmas together.  Yes,   Christmas is a most magical  time.  A time  for giving and loving and making memories.  A special time to tell the ones you hold dear in your heart that you love them.  A season that gives us hope and the chance to rejoice with LOVE.   Love, Peace and Joy to you all this Holiday Season .

Saturday, November 16, 2013

a reason to give thanks

 Looking  out the window  I noticed the lake was now free from any wild life.  Much to my surprise a  very thin blanket of   ice  spotted the now peaceful frigid  water.   Reminding me even more  of autumns presence and the chill that has invaded the air.  I shivered quietly, as I looked over the yard.  The clouds were grey and delivered a slight gloom across the open horizon.   The somberness of the day could not be denied.  Nature had  carried on with out hesitation.  A coverlet of frost camouflaged the once lush green  plant life that cascaded  a long my shore line,  beckoning  the onset of the winter to come.  This time of year always put me in deep thought,  and I tried hard to fight the memories that silently stirred with in me.  The coming of Thanksgiving  left with me so much more than thinking of things  to be thankful for,   it also stood as a reminder for me how vulnerable we all can be.  A personal challenge I still fought secretly alone to overcome.

  It had been several years since the break in, and yet every year briefly at this time, I find my self wrestling with emotions that  I had hoped I would be free of by now.   I wanted so desperately to move past  the anxiety that haunted me every November.  Now settled into a new home here it was again, as if only to remind me, for mere moments,  how  exposed and vulnerable we all are to nefarious acts of this world.  Leaving me  amidst  my thoughts, dragging me back  to a time where my courage and strength were met with great challenge.

I have always admired people who face their fears.  Claiming  weakness that stirs with in them and then commanding  courage,  allowing  them to put forth strength, in order  to move past diabolical situations.    I had decided it was time for me to attempt this.   Perhaps, if I allowed myself to finally except my fear and sift through my memories of that cold November morning, when I stood face to face with my intruder.  Divest of all clothing, clad in just a small robe, I might just be able to free myself of an unwanted memory.   Perhaps I  too, would finally begin to quell my own trepidation.  With the heat of anguish now beginning to fill me at an alarming rate, I let my thoughts travel backward.

It was near the end of November, a few days before Thanksgiving.  I was going through a rancorous  divorce and found myself most days almost overwhelmed.  Consumed  with raising three children on my own, two with a fatal disease and eagerly trying to earn more income by day caring for my niece.   I had just awoken my great niece  up from a nap, and was optimistic with  helping her to be bathroom trained.  While she sat comfortably on her potty chair in my upstairs bathroom, I decided I would take a quick shower next to her.  I stood under the warm spray, feeling the water run down me as I listened to her chant parts of a song we had sang together from the radio, a day earlier.  Just as I felt parts of me relax, under the tepid water, I heard a my dog Share, who was also  shut in the bathroom with us, begin to bark loudly, towards the locked bathroom door. Before I even had time to wonder what had alarmed her,  what seem to resemble the sound of a wall being knocked down, impelled my own fears.  With in an instant I shut the water off. Frantically I grabbed for a robe to put  around me,  and with what ever calmness I had available, I  insisted  my little niece to stay put, until I came for her.  Fear enveloping  me, I opened the bathroom door.  Knowing I  had to anatomize what was happening,  swiftly I moved down the hall.   Share my small Pomeranian bolted ahead of me, as  if  it was her job to investigate.  She flew down the stairs  growling.  By the time I had made it half way down the steps her barking ceased, and so did the shaking of my walls.  Just as I reached the bottom of the stair case I peered around the corner, only  to see my dog laying on her back,   silent and motionless.  Seeing her lay there, legs stiff and in the air held me captive.  Panic flooded me as I began to look up.  A cross the room from  me now  stood an intruder.   Hardly aware that I had little to defend myself  with, I began screaming  and wildly lunging toward him.  The strength that came from me was more than my own. Driven by  sheer panic that he had killed my dog, and meant harm to me and my beautiful niece, was enough for me to act in whatever way I needed,  to keep us safe  and to   survive this invasion. He fled.  

Some times our minds have a way to help us cope with traumatic events, by allowing us  to forget pieces.  While we remember the facts,  details slowly detach themselves.  I can remember screaming  and pushing.  But  I can not recall my intruders face, or if he shoved back.   I vividly remember seeing him in my house  with in feet of me.    I remember he had dark short hair but everything else about him seemed  average and faded.  I can still see the busted frame around my front door,  from using great force to enter.  My steel door hardly showed a dent from the break in, but the actual frame itself laid so shattered in pieces on the floor of my entry way that the   door could not close after his retreat. 
 My locked dead bolt had did its job in keeping my door locked, but in doing so  also managed to take the door frame down with the  fierce intrusion. I will forever see the image of my dog as she laid motionless and the way she shook after coming too.    

I have to share I shunned at the awkwardness I felt, writing this down for the first time.  Feeling that if I exposed  my story,  I may only make myself  a victim again. Or that in someway I would be scrutinized for my reactions.    For in truth,  deep down inside I do need to let go of the guilt, and the fear I have cradled inside of me for years.  Guilt because I often wondered, did I in someway draw the attention to myself, as  was suggested to me by a few people, because of my appearance and recent entry into the dating world.  Secondly fear because my intruder was never caught.  He broke in through the front door, mid morning, as though he was not afraid to be caught, and also fear because  I could not ID him.  One true thing that I had held on to over the years however, was, that I had managed to   chase  this man away, wet and clothed in only a small robe, that my dog had only been knocked out and not killed.   What could have been a thousand times worse ended  with out bodily harm to myself or my niece.

 My niece has no real memory of that November morning.  By the time her own fears drove her to seek out my where a bouts we were alone again, and waiting for the  police.  I now live in a different home.  I   have no  issues with being home alone or showering. I hang on to the fact we were very lucky that  day and try not to dwell on why it happened at all.  

 So as with every Thanksgiving I give thanks to the grace that surrounds me that morning and every morning. 

Friday, November 8, 2013

lunch with a stranger

Almost instantly I felt his eyes linger in my direction as I approached the doorway.  His  smile widening as I drew nearer.   I was not sure at first if it even was me that  had captivated  him so intensely.  Turning my head slightly to look around me,  I noticed, I was the only one he was looking at, as I stood alone in the doorway.  His attention appeared to be totally  focused on me.  Slowly I stepped forward,  his gaze followed up my thin silhouette as I moved through the thresh hold.  I could not ignore his eyes as they traveled upward slowly, toward my face,  pausing occasionally at intervals,  as though he was savoring every inch of  what he saw.  Not hesitating to linger his gaze where he  pleased.   I  casually  tossed my hair off my shoulders so it hung down my back.  A nervous smile now beginning to form on my lips as I continued to walk in his direction.   Keeping his eyes fixed on me he shifted his tall lean  body  in my direction,  almost  as though he was eagerly waiting to greet me.

 I felt remarkably confident today in my new dress and black patent heeled  sandals.  I had chosen the  black sleeveless fitted jersey frock that stopped midway above my knees, hoping to create  a  sleek combination of pretty and elegant.  Liking the way it hugged  at my thin hips while also emphasizing my trim waist.  Scooped just low  enough between my breast to allow a hint of imagination. Allowing me to draw attention with out asking for trouble.   I could not remember the last time I had even dressed up to go out anywhere that did not include my sons, and a pair of skinny jeans tucked in  cowboy boots.   For the first time in almost a month I had an afternoon to myself.  A day free of schedules and caring for my sons.  Time set a side to reward myself. Unfortunately finding a companion available did not fall into my plans.   Dressed up and feeling especially good about my appearance I had decided to treat myself to lunch out.  Having finally found the courage to dine alone, I entered a quaint little establishment I had visited once before in the past with a gentlemen caller.  I had originally hoped that the day would have  involved me spending time with a special  man in my life.  Regretfully due to conflict in schedules, and  a difference in the understanding of parental time off, that,was just not going to happen today.  So  on this sunny afternoon,  dressed  like I might have a life outside of raising children,  I ventured out alone.

Slowly I could see this new stranger part his lips to speak to me. I felt my heart quicken as I moved forward unable to avoid passing directly in front of him.  What could he possibly want to say to me I wondered.  Our eyes locked,  meeting momentarily, as I passed by at the bar, in hopes to locate a small  table near a window.  It was almost to undeniable to not sense  his instant attraction to me.   "You are very beautiful" he told me with out hesitating in a low soft voice.  As he took a step forward towards me I could feel his eyes sweep over me once  again, stopping briefly at my legs and then swiftly moving back up to my face.  I smiled shyly, unable to ignore the attention he offered, and now beginning to feel a slight blush cascade across my cheeks, while he began apologizing for speaking so forwardly.  As though he sensed my uncomfortableness with his flirtatious advance he confessed quickly it was a thought he had meant to keep to himself but  simply found me very alluring.   Now that I was with in a few feet of him I felt almost certain he could not be more than in his very early forties.  I wondered momentarily how old he thought I might be. Giving me even more reason to smile.  I felt myself grow  more intrigued by the fact, that for whatever reason, he had the courage to  be so forward.  Politely and almost a bit flirtatiously I heard myself giggle and then thank him.  Not sure what to do next I told him to have a nice day and began to continue walking to the other side of the room hoping to locate a seat.  As I stepped passed him I could not help but notice the aroma of his cologne.  He did smell remarkably good.   I fought the urge to  look back for just a second,  knowing perfectly well that would only let him feed on the fact that I might be a bit interested too.  He was very handsome.  Dark thick smooth hair covered his head, carefully trimmed just above the collar.  A slight soul patch resting just below his lower lip, which held a dazzling smile.  Yes, no doubt definite eye candy.  In  all honesty, secretly  I did find this handsome stranger to be a bit distracting, light exchanges of greetings could not be harmful, I reasoned, to my self .  After all, I was not married,  not even engaged.  No jewel bedazzled my hand in promise of anything. In fact the L-word had not even  so much as escaped once between me and my current heart interest.  

It seemed  odd to me though that  even as a mature female I could be made to feel awkward and even a bit self conscience about my appearance, hell, or even my sexuality in public, by the opposite  sex.  I had grown accustom to meeting new men and sharing light conversation.  Having re-entered the dating world 9 years ago, casual dating was a past time I had enjoyed.    I actually had become quite comfortable with first encounters.  Relationships on the other hand, well, that was a bit difficult and altogether different  story.  However, this was not the first time I had heard a compliment by someone so forward, but  it did touch me  today.  I had really hoped  I could have been sharing my parental weekend off with someone that was special to me. Someone I had been seeing and hoped was growing more meaningful.     I was desperately feeling I was missing something this weekend and quite frankly  the  attention I was now receiving helped me to see that even more.  

  Just across from the bar I noticed an open table in a corner. It seemed no sooner had I spotted the table and then it was claimed by a young couple.    My attention was swiftly drawn back to the bar where this handsome stranger stood, still somewhat drawn to me.   I stood for a mere second void of all thought.  Quickly I was brought back to the now, when his voice verified what I had discovered  myself, the place was quite full.   However, next  to him and the stool he had been sitting on, was another open chair.  His smile was beckoning me to sit down.  I was hungry and really not wanting to  stand alone, waiting for something to open.    I did what any alive, red blooded, independent single female would do when approached  by an attractive male in a hopeless situation.  I accepted his invitation to join him for lunch.

  

Do you want to know more????



Sunday, October 20, 2013

only in my dream

After what seemed like hours of tossing and turning, I simply gave up.  De tangling myself from the comfort and  warmth of my covers, I stretched my tired legs and got out of bed. The shock of the cool hard wood floor beneath  my naked feet sent shivers up my calves,  leaving me scrambling in the dark for my slippers.  Sleep was just not going to happen for me right now,  no matter how hard I tried to free myself.  At the moment I was helplessly trapped in a flood of visions.  Visions that  danced around in my head, twirling and bouncing with robust energy.   My mind raced with thoughts and ideas.  Things that  I had not yet done, and hoped to do.  Events that I had not yet had the chance to partake in with my sons.  People and places I wanted to visit. Projects around the house I had not finished or even started.   Most importantly for the current moment though, I was in  need of some comfort.   I was loosing in my battle of self control and  found myself falling victim to concern and worry.  Yearning to understand why I was now in the middle of the night so absorbed in the  reality of things.  Desperately wanting to change the obstacles  that I felt threatened my relationship with  happiness. Hoping  to find a  solution for everything I knew that was not quite right, in my life.

  As if I was a piece of metal being pulled by a magnetic force, I could no longer fight my craving for a little self  gratification from the realizations  that haunted me.   Truthfully  I was having a personal crisis and now it was  insisting that I get out of bed in the middle of the night to secretly indulge in a form of self consoling ritual.  What I wanted and needed right now was to curl up on my recliner sofa in the in the wee hours of the night, while the world slept.  Wrapped snuggly  in a knitted throw  in front of my fire place, enjoying  a bowl of my favorite ice cream, and become lost in a  romantic novel.  A selfish past time that I found myself becoming more and more  attached to lately.

It was not to long after surrendering to my desire, that I soon found myself with heavy eyelids, slowly falling into  a dreamy state, that was finally freeing my busy mind of the real world, at least  momentarily. Abruptly  I was awaken by a mix of dreams.  Still holding my book in one hand, I glanced around the room. I was alone.  Nothing seemed unchanged.  Everything was just as I had l remembered,  before shutting my eyes.   I shifted my weight to let the chair rise forward.  Lifting my head, I noticed my hair felt dampened and my  throat dry.   I looked toward the clock just off to the side of my fireplace, where  flames wildly danced, it was now 4am.  I had been a sleep for only an hour. Sitting there alone, ever so slowly pieces of my dream began to flash in front of me. 

I wanted desperately to go back.  Back into the visions that had  held me captive for the past hour.  To afraid to move, I sat embracing the sheer longing of what truly haunted me.  I had just seen my Cody walk in my dream.  He looked  at me smiling.  As he took a step toward me, he out stretched his hand.  Reaching for me as  he raised a foot, in a very  carefully calculated step.  Around him illuminated  a light.  Soft and glowing as though golden angels were surrounding him.   I froze in elated joy as he came towards me step after step.  Unable to move holding my breath, wanting the moment to never end.  As I raised my hand to grasp his,   I saw I held a small scissor. It resembled one that I kept in my kitchen.  Looking down closer I noticed my thumb had become stuck in the small finger opening.  In anguish I tried  to pry it from my thumb. Frantically attempting to shake it from my hand so I could fully extend my arms to Cody. We were alone and I felt a rush of desperation, wishing I had help.  As the scissor fell,  so did Cody.  Slowly he fell into my arms, never taking his eyes off mine as he silently  slid downward. 

It has been quite a while since I had a dream where Cody and Josiah walked.  But the memories of a time not all to long ago, when this was possible, is still magically kept close in my thoughts. There are many possibilities that  may have provoked my recent dream of Cody. Without to much analyzing I can sum it up that there is a very deep part of me that struggles constantly with accepting the future, mine and his, together.  I can only say that I feel blessed to see him walk even if it is ONLY in my dreams, and even if it is because,  I am struggling with some very hard harsh realities.  Duchenne and its unrelenting progression. 

 It took me a while to fall back to sleep again.  Clutching my romance novel once more until my eyes felt heavy, I surrendered, happily to my dreams.  Hoping that some how  very soon I would see my sons walk again even if it was only in my dreams.

a shared event

I was surrounded by smiles and laughter.  Feeling especially happy to be  enjoying  a night out with two of my three sons and a few  friends, who also were able to attend the nights hilarious  performance of " Sideways Stories of Wayside School.   We were part of a small crowd with a rather intimate yet casual setting that made a full circle around the stage.  I could not remember the last time my sons  had been  seated in the very front row, with their wheelchairs, for any event.   With just an isle between us and the stage,  it almost  felt as though we  ourselves, were part of the  cast of characters.

 Occasionally soft laughter escaped from my sons, Josiah and  Cody along with their friends as they watched the play.   I peered down a few seats off to my side, to the row in front of me, where my middle son Cody sat in his wheelchair next to his friend, Kayla.  Feeling very  happy, he was able to enjoy a fun  night out with good friends.     Ever so sweetly I watched as Kayla reached over to place her hand in Cody's.  I was momentarily overwhelmed with my own  happiness as they sat with their hands locked, watching the play.  A  triumphant moment to me,  that they shared, unknowingly.  My heart filled with joy instantly to see Cody experience a simple pleasure of being a young adult, sharing a special moment  with a female friend. A quote as we might say "normal" moment, many of us in the DMD world dream of our sons having.

Not to far off  from where we were gathered  to my left, another family sat.  A young teenage boy in a wheel chair, accompanied by his mother and  a young girl most likely his sister.   It was not the sight of them that had drawn my attention, but rather the occasional sounds that escaped from the boy.  It was very apparent he too was enjoying the play as much as we were. His enthusiasm came out in little sounds that were discreetly attempted to be  quited by his mother. While still basking in my own joy of watching Cody and his beautiful friend I could not help but once or twice glance over at this other family. I was feeling some what  drawn to this mother, out alone with her two children.  Most likely just wanting to offer  them  a night of enjoyment out. Some family time spent  together away from home.  Each time her son would make a small chain of  snorts or chuckle I could almost feel her anxiety, as she  diligently tried to coax him into silence.   I could see his sister slowly shrink behind her mother, as if in someway perhaps attempting to hide in  embarrassment  as he would vocalize his emotion.   A part of me so desperately wanted to somehow let this  mother  know I understood the anxiety she might be feeling right now, as she  tried to shush her son.  So many times I too  had also been in similar situations, when my own sons did not exactly act in a way that would be socially acceptable.  Cody and Kayla both were  expressing their own enthusiasm for the play, in occasional burst of laughter and words of cheer. 

I looked around the theater to see if there were any people  who openly displayed discomfort in being in the presence of our special children,  after all this private performance was for HOPEKIDS and family and friends of the actors.  As I expected I saw none.  The wonderful cast  continued with their delightful performance unaffected by our jubilant attention.  In my heart  I still felt so deeply for this mother and the discomfort she seemed to feel.  Just like her, I was there wanting too spend time with  my sons in  an entertaining  activity.  I offered a smile from across where I sat.  Hoping that somehow if at all possible she could feel some comfort.  Like any parent with a special needs child it is not an easy task in taking them on an outing.  This mother undoubtedly had her own struggles in bringing  her son out and  she had my admiration for loving her son enough to share him with us.

 

Sunday, October 6, 2013

healing

His head  hung down as he walked away from me.  In silence he climbed back in to his truck,  keeping his eyes from meeting mine, but still looking  back at where I stood alone.  I watched as he slowly backed out of  my drive way.  I had nothing but apathy for the the man.  He had fallen so low, to a place I could only try to imagine was like.  A place that seemed so empty and void of all that held beauty and truth.  A place where he could only blame himself for falling into. A place where love seemed lost.

I had moved on and I could see he struggled with accepting that. Somehow in his heart he held on to  hope.  Hope  that we would somehow once again   reunite in this journey.  It was in that moment I realized   all the anger I had held in my heart from  the years past  had melted away.  I had nothing left inside to offer him accept, pity and sorrow.  Sorrow because he now   understood what he had walked away from years ago.  Pity because I knew he would never be enough for me or his sons ever again.  The love he so unwillingly refused to give back years ago, now tore at him.  The faith he had lacked then had put him in the lonely place he was now. What he wanted most right now was the furthest from him, than  it had ever been, with no hopes of ever being regained again.

I turned to walk back inside my house.  The house I had manged to save for and buy myself.  The house I had had  adapted to meet the special physical  needs of my sons.  The house through sacrifice and hard work I had turned into a home for my three sons and I.  There was no presence of him in my personal world. I smiled looking at the photos decorating my walls that clearly  displayed  me and my sons and the triumphs we shared together.  I had made a place for us in this world on my own, that left me free and in control.  My home now beamed of  the world I created and shared with my three beautiful sons.  The path we had been traveling on for 9 years had  brought challenge but also great reward.  I was pleased with what I had accomplished on my own and embraced the strength that had grown with in me, facing all the  hurdles of single parenting  and especially raising two physically and mentally challenged sons by myself. We were together, my sons and I, and nothing could make me  feel more proud.  I had managed to give my sons a world that dared them to dream, that rewarded them for their efforts, above all that showered them with unconditional love.

Even though I felt even more free, now that I had finally let go of the hurt from my past, it did though feel strange and new.  The dreams I had once believed in and had hoped would be my destiny at one time were now replaced, by new ideas and desires.  The past  buried, as if it had never existed.  As my world changed  I changed with it, in so many ways.    I stopped in front  of the mirror  and glanced at my reflection. I looked the same, perhaps even better, but I had in fact  changed inside  so much, over the years.  At times it even scared me,  knowing how much I was willing to challenge myself  and willing to sacrifice to give my boys the life I longed for them, on this journey.

I can not say that my life has worked out even close to the way I imagined it would.  Even now to day, I am most of the time surprised at the places I am led to and the adventures I embark on with my sons. What ever the journey I can only pray I will be blessed with the strength to be all that my sons will need.


Saturday, October 5, 2013

the mom call

I jolted upright, almost throwing the covers to the floor.  Moving before panic and fear could begin  to flood me. Glancing only  for a mere second  towards the monitor and its bright green flashing light, as I scrambled to my feet.  I watched as three squares flashed again, which alerted me even more- that I had definitely heard something from upstairs.  With in seconds I was running down the hall in my bare feet with my hands out stretched slightly  in front of me, helping me to to fend through the darkness. It dawned on me at that moment I had not been summoned to roll either of my sons over or assist with a night bladder release yet, very unlike them.  That thought startled me even more. Worry fought to control me.   The night air caused me to shiver slightly as I swiftly moved, and it was only then that I noticed my long hair and tshirt felt quite damp.   Not allowing myself  any time to waste on any more thoughts, I  continued rushing toward the stair case that separated Cody and Josiah's bedroom from mine.  A soft glow of light from  the outside street lights peeked through the open blinds of our front bay window, illuminating the  stair case slightly, helping to light my way just enough to keep me from missing a step.  I looked up toward their  bedroom from the bottom step, the distance seemed so utterly far. Fear threatening me now, I took the steps two at a time.   As I reached the hallway just outside the room they shared, almost  instinctively I paused for a second  at the closed  door, listening for any  sound, but hearing  nothing in return.  My heart now pounding and fear closing in on me I quietly turned the knob.  Urgently wanting to rush in to my sons sides, but also deeply aware that my own panic could frighten them from a deep sleep if somehow this has all been a mistake, a panic on my own behalf.

I opened the door, slowly tip toeing, first toward my youngest, Josiah,  where he laid, quietly sleeping in his bed.  Curled on his side, his breathing steady and  slow, a peaceful rhythm.   I stood over him looking down as he slept.  What ever I heard, if it had been him, was in no way now affecting him.  Peacefully he laid there sleeping un-aware of my presence. I turned toward my middle child Cody.  Whose  bed was across from where Josiah lay.  Walking toward him it seemed  he also was completely absorbed in a peaceful somber. I stepped back looking at both of my beautiful sons, puzzled at what I had heard or not heard.  Clearly I had seen the blinking lights. I was convinced sound had came from this part of the house, this room.

I lifted my damp hair from the nape of my neck, as I stood in the dark,wanting to make sense of what I was doing in their room  now.  Listening to the quiet I waited, the house was still.  Pulling the v-neck of my tshirt away from my collar bone, I now became aware I was more than just damp.  No doubt a night sweat.  A chill caused me to shutter,  I decided I would need to change my shirt before returning to my own bed.  Then as if on cue a sweet  voice called out to me. Mom, mom I  need to go to the bathroom my stomach hurts, a second voice followed with I need to be turned  over please.

I smiled to myself,  apparently my motherly instincts and fear are present even when I am in a deep sleep.  I felt even a bit  happy that in my semiconscious state I was alerted "not being called in the night was cause for alarm'.  However I felt good. I  was where I needed to be, even though very tired, before I  knew I would be needed.  It did not matter to me how or why, I was wildly awaken during the night, just that I was so deeply connected to my children.  Cody only needed to use the bathroom,  and soon was comfortably resting again. As I left their room I walked through my sleeping house.  All the windows and doors are were all securely locked.  Even the dog laid curled up a sleep at Josiah's feet, on his bed.

I am sure I have many mom friends who can share in this.  The calls in the night and "for many of us it is many calls during the night" that sends us rushing to our child's side.  The sleepless nights when we are awaken  so many times, that we just give up on the notion of a peaceful sleep, entirely.   The panic and the fear that is aroused, because deep down inside, a fear lurks in our subconsciousness.   A fear,  that one day this call will be accompanied by illness or  not be heard by us in time.  The many sleepless nights of staying up with a sick child.  An almost  agonizing fear that  it will one day cease to happen at all.  I have no doubt I have been given an inner gift.  A sense that alerts me in my sleep to come to the aid of my sons.  It almost seems,   that all the years of caring for my sons has helped  my body and mind work as one to alert me.  That not hearing a call from my sons in the night is cause for "alarm".   Feeling beyond tired at times, but still so grateful, that it is possible, in rare instances to be  present even before they  need me.

I want to embrace in unity, all of us who can share in the sleepless nights, because of a child in need.  My heart goes out to us all for  the "mom calls" and in some cases the" dad calls" in the night and during the day.  I pray that we all will have  the courage and the strength  when  the call that does not happen sends us running.     


Saturday, August 31, 2013

surrendering to Labor Day

I knew better.  Yet somehow I still allowed  myself to become lost in the hopes that  my silly romantic dreams would help me through  another Labor Day weekend.   I stood on my dock peering out to the water. The lake was quiet except for a few families of ducks that swam peacefully in front of me.  Pearly white Water lilies danced at  the ends of my dock giving the appearance of a floating flower garden. I wanted the calmness of this moment to absorb me, almost begged it to swallow me.  Beads of sweat trickled down from the nape of my neck and an occasional breeze gave me a slight cooling sensation where I had pulled my hair back in a  knot.  I was beginning to  feel a slight sting on my bare shoulders from where the sun had beaten down on me earlier, while I had pulled weeds along the shoreline in hopes to keep myself busy and not think about the the MDA and Labor Day .    I turned and looked back at the yard feeling a sense of pride as I surveyed the land. I knew I had  found a good place for my sons and I, and  it pleased me.  I had managed more than I had thought possible at one  time.  I alone had given us a home that we could feel proud of.  A home that offered my physically challenged sons comfort and space.   I had also achieved an Independence in many aspects that left me feeling at most times very self satisfied.     Sighing I wondered though, would I ever get past the  feelings that threatened me now, that left me aching for more.     I was alone, fighting  a flood of emotions that eagerly clawed at me.   I wanted  desperately to feel anything except this sorrow  that I found my self  slowly surrendering too.

I had made a futile attempt earlier in the day to workout.  Until  my arms ached and I felt callouses forming on my hands I vainly attempted pull ups on  my new pull up bar,   I had assembled and installed in my bedroom door way.   With the suggestion  of my masseuse and hoping to prove I could defy some effects of aging,  aided also with  the need to feel physical pain rather than mental anguish left from remembering Past labor Days and what it has come to mean to me- after waiting a half a century  for a cure for Muscular Dustrophy, I worked my arms.  With my music pounding I tried to get lost in building muscle.  Muscle I had accepted long ago my two younger sons would never gain and some day  lose completely.  It was that very thought that broke my drive and sent me looking outdoors,  with my dog at my side, in search of  a diversion.  Having broken a slight sweat and still needing something more intense to capture  my mind I carried the music outdoors.  Determined to drown my thoughts I tore at weeds that had crept  along my fence.  I ripped and pulled cursing under my breath each time a verse in a song would remind me of all the things I longed for.  Several hours later I finally found myself standing on my dock looking back at what I had managed to clean up.   I  stood there,  feeling pleased with the physical work I had accomplished and barely aware of the  small beads of perspiration that was now decorating parts of my  aching body.   With my thoughts once again free  it wasn't long before  tears silently slid down my dirt stained cheeks. There I was, desperately wanting to get past the  sadness I was now feeling.    Tired of waiting and hoping, tired of feeling defeated  and angry that all the strength inside of me was no match for the magnitude of what was ripping  at me now.  Feeling a bit angry that  I had fallen victim to my own sorrow.

I cried. I simply gave in.  I surrendered to tears  in the hopes that letting go, would  release me in some way.  With nothing else to do I cried.  I also wept  because facing this alone simply did not matter to me any more.  However this Holiday was not about me. This was a weekend that throughout my entire  life has been about  all the brave young men and women who like my sons  face a  devastating  terminal disease,   every single day.  A disease that will slowly  and painfully take their lives, but only after years of imprisoning them in an immobile  body.  This was a time of year,  I  had long ago accepted, would always be a reminder to me  of  the immense pain Duchenne brought  and the loss these young men struggle with.  And with that acceptance I will have to live with knowing that this pain will deepen, leaving me feeling broken and completely consumed with loss.  Quite  simply there is nothing I can do about it. As hard as it is for me to accept - I  know now I am at the beginnings of  surrendering  to the next phase of seeing my sons lose in  this battle.   But I will as usual focus on today and rejoice, I have them here with me today.

So  this Labor Day Please remember  MDA and "A Show of Strength" and give, we need a cure now.


Saturday, August 3, 2013

friends

So fast and swift the eagle swooped down, snatching the baby duckling with its hungry claws.  I stood frozen trying to comprehend what had just happened before my eyes.  The loud devastating cries from its mother tore at my heart.  In a blink of an eye with out warning  her precious offspring had been snatched from her.  I watched in sadness as she floated in circles flapping her wings and crying out to her duckling as he flew further further from our sight.  As helpless as she, I stood, only able to watch, as natures unrelenting cruelty of survival played out before me.

I turned to my new found friends,  who had delighted us by visiting my sons and I this afternoon at our home, as unexpected as I, they watched too, in almost disbelief.  With few words needed,  we shared in our sorrow.  Unable to turn away from the lake we watched as several other ducks  swam out to the grieving mother, encircling her as though offering comfort in the only way they could. 

Later that evening as I looked out from my deck overlooking our small lake my thoughts were brought back to the memories of what had happened earlier that day. Sadly,  I watched as a mother duck took a leisurely swim with ONE  baby trailing behind her.  My heart sank again,  as I recalled the events that most likely was the cause of what I was now seeing.

I stood feeling almost connected to the sense of loss, I imagined what that mother duck had endured, and the acceptance that she was now forced to face.  An unforeseen enemy had unjustly stole from her. Tearing  her world apart right before her eyes.  Helplessly she was forced to watch as the life she had brought into the world, cared for and loved was cruelly ripped from her with out mercy.  Leaving her broken, her dreams shattered, alone and grieving.  Now facing the arduous journey of moving past loss and devastation, picking up the pieces of her shattered world and moving forward.  Accepting, adapting and surviving tragedy.

I thought momentarily of the wonderful enlightening conversation I had shared with my new friend earlier that day about our sons living with Duchenne Muscular Dystrophy.  How blessed I felt having connected with other mothers who understood so well the sorrow and joy this life brought us daily.  The unrelenting helplessness we battled with in ourselves as we are forced to watch our boys be viciously attacked by a monster that  has no mercy.  The acceptance we have grown accustom too as the disease slowly ravishes every muscle with in our beautiful boys.  The hurt and sorrow that consumes us at times threatening our very own existence as we are forced to accept the inevitable.

Standing there  watching the mother duck swimming with her duckling I have to say she reminded me slightly in some ways of a  Duchenne Mother.  The courage she had to find to take the last of her brood out to swim.  The strength she undoubtedly had to find with in her self to overcome her grief and the acceptance that this event  was beyond her power to prevent.  That by no fault of her own this had happened to her baby and that somehow this was part of plan that she had no control over.  I still felt very troubled by the fact that  in order to make this world work- suffering and pain is so very significant, to this big divine plan.  A plan her nor I can fully  comprehend but have  learnt to accept, with courage and dignity.   I embraced  remembering  the circle of friends that was formed around this mother duck almost instantaneously as she cried for her baby.  The comfort her friends seemed desperately to want to  offer her.

As my thoughts slowly shifted back to my world I tried to focus more on the connections we have to each other in this world.  Alone in my thoughts I wanted to some how savor the gifts we are all surrounded with.   Most desperately wanting to grasp on to the blessings I have been overjoyed with myself amongst my sadness-if possible.    Clinging to the idea of joy in sorrow, once again-finding that to be my foundation of coping.    I was still feeling so very connected to the mother duck because of the strength she represented.  I also felt comfort knowing, I am  truly blessed to have found a few special friends  that even in the midst of their own anguish or sorrow, can still find time to extend support and love when I  need it most.    

  

Friday, July 12, 2013

forgiving

The End.  I stared at the bold type print I was holding.  Thoughts flooding me,  challenging me on my very own hopes and desires.  I had just finished reading my fifth romance novel of the summer.  Much to my surprise I was beginning to be hooked.   This one was a western romance,  taking place in Deadwood, South Dakota during the gold rush boom, back in 1876.  A town I had visited almost 9 years ago with my sons, on what was to be a family journey  out west.  A trip whose plans  began while I was still very much married.  A family trip that I had at onetime envisioned would draw me and my now ex-husband closer together.  A vacation, that instead, and in many ways, marked the beginning of my, life as a single mother.

Deadwood, S.D. a tourist town now that draws crowds by the thousand each summer.  A place that  I simply  fell in love with many years ago  and hope to revisit again someday.  A colorful town boasting with the flavor of the west.  I sat back still holding my book.  Wanting to savor the feelings its paragraphs had stirred in me.  Puling myself back in thought to a time in this world that brought the strong characters of this romantic story to life.  Imagining the headstrong men and women of this place living and loving.  Creating a life in a rough and tumble western town, just at the beginnings of its birth.

With my eyes closed I tried to envision main street coming alive.  Cowboys as they casually rode into town tipping their stetsons out of courtesy as they passed by females.   The town women nodding in response as  polite etiquette. Couples happily strolling along arm in arm.   I smiled to myself, yes like it or not  I was hooked on these romance stories, dreaming and fantasizing as I read each one.  As a realist this is a very hard thing  for me to admit and accept.  I was becoming a full bloomed romantic.  Starry eyed at the idea of finding my self lost in the silly romantic notions of being swept away by love.     

I closed the book and studied its cover.  No beautiful saloon girl or handsome rugged cowboy donned the front cover.  No lump of gold or stage coach pictured,  to give way of the journey that laid ahead in its over 400 hundred typed pages.  The title simply put, "Forgiving" was scrolled out in large deep rose colored letters. I was dawdling in after thought.  Love in its many vast ways had etched it way in my mind leaving  me dreaming.

I sat thinking,  what next.  Do I engage in yet another novel. Loose myself to yet another untamed heart of a character, doomed to embark on a journey exploding with deep emotion. Surely I needed to lay to rest for one day these sordid love affairs I have been so drawn into reading about lately.  A walk seemed a perfect answer to help me ease away from my new addiction. Not to mention a delight for my beautiful dog Bela to part take in. I chuckled as I attached her new flashing night time leash to her collar.  Thinking about my writing class experience last fall, when my instructor told me to stop fighting the fact that I was a romantic.  "Surrender and stop hiding" she told me during  class one day, " and those stories locked inside will flow".  I was a bit bothered hearing those words at first.  Unconditional Love as a mother I new about, with no end to the words that illustrates my motherly passions.  But love between a couple- ooh that's a tough one. I openly admit I still struggle with putting on paper.  With a past full of dating disappointments and short lived romances what could I possibly write.  Feeling somewhat -in  all  honesty-that  a captive heart for me would seem rather miraculous at this point, but not entirely impossible-after all I am a newly proclaimed romantic. I will somberly admit to those of you who might read this and  clearly spell out "I have known love",  but there is a profound connection to the heart I deeply desire.   As a  parent of two terminally ill sons my journey will be met with great sorrow few will ever understand or be equipped to endure. Leaving me deeply guarded with my heartfelt emotions.

So here I was now completely absorbed into reading about the desires of the heart. But, still struggling with the ability to write anything that remotely mentions falling in love. With a child free night to myself, and no plans  I was at home alone with my romance books.  I looked down at the book again where I had laid it to rest.  Its simple cover holding me captive momentarily.  The single word title triggering something in me to examine a little of my own soul.  Could it be that some of  my past actually made me  feel connected to the characters I recently read about.  I was beginning to understand why I found them so appealing.   Much more to my surprise I noticed something else.  These characters not only ardently desired love, but also were in great need of something more, healing. It can be very enlightening and   amazing when you can make a connection so deeply.    Healing.  Yes as much I tried to hide it I was still in need of some healing.   Even after all these years I still was in need of a little mending, which is not so easy to admit, because, that might just make me be a bit vulnerable.  Secondly, because I have become so engrossed in moving on and finding the courage to face my sorrow to come, I have not paid much attention to what the past  had been lacking for me in the first place.  So here it was simply laid down before me "Forgiving".  In order to continue with healing  I had to forgive.  But forgiving just who was the question?  No sooner had I read the word again and  it hit me, like a burst of sunlight. The one person I struggled with the most  was in fact me.  It is me that stands like an un-open window between my past and the present.  I  would need to  forgive myself to continue to heal.

 I have a very strong feeling I will  connect with  someone  who will in fact be touched by what I am writing about and  will  totally understand the depths of the healing I refer too.   

Friday, July 5, 2013

no grass just fireworks

I stared at the photo in front of me.  The smiling faces captivating me, flooding me with thought.   I imagined the echoing sound of the water fall behind them cascading down.  The cool water slapping hard against the steep rocky incline as it wildly falls against it. Its cool spray reducing the feel of the rising July temperatures. I knew this place where they stood.  I had frequented it before with my own eldest child.  I smiled almost able to smell the wet earth as I recalled a few of my own memories. This was a place I had at one time visited also with my two youngest sons .  A place we ventured out as a family.  A time in their lives when they could freely walk along. Occasionally stopping to skip stones across the flowing water.   Slowly at this   moment now, I somehow began to sense another feeling grasping at me.  A yearning calling me.  I was happy for  my friend with the day she was obviously sharing with  two of her  children. But I also felt saddened that this was  something I had learnt to  accept  was now  in our past. That walking along the banks of that  very same stream, had become just a wonderful sweet precious memory for us.  A little disturbed that I had let this photo pull me down,  I decided to scan a few other photos that other friends had openly displayed on line.  Why I wondered was it,  moments like this that left me  hoping, and  wanting to have just  a bit more of something.  I had undoubtedly created a world that was full of adventure for my boys.  But it did not come with out great sacrifice.  To pull it it all together it also took compromising, careful planning and much recruiting of outside help for them. I tried to imagine what it might be like to wake up and at the spur of the moment   take off with my sons on a days outing.  What it might feel like to not have to worry about steps and bathroom accommodations. What it might be like to not have to rely on a helping hand, and  chairs with wheels. To have one time where I did not have to worry about accessibility. 
 
   I hated the the feeling that was now attempting to creep inside me.   I felt even a bit disgusted knowing what it was.  Yes,  I knew, deep down inside.  Masked by a  bit of anxiety,   it was envy.  I envied what I  imagined  how my friends  Fourth of July was being spent.   A day spent walking with her teenage daughters, laughing while they hiked along together. Dipping their toes in the cool water.  While they spent endless hours enjoying the outdoors, I spent hours inside getting my two sons up and out of bed.  Dressing them and feeding them.  Finding activities  to keep them engaged just so I could hop in the shower and get dressed myself.  Actually it wasn't even  the fact it was a Holiday and that I had no accessible plans for us,  it was simply the fact that like very other day if I didn't go the distance with preparations" it" didn't happen.  With out " It" - it meant my boys would be sitting bound to a chair settling for a life of watching the world go by rather than living it. 

I went back to the photo after my search to see what else was happening in the online world. We had been invited to view fireworks from a friends apartment.  Her offer was tempting but Cody's miner upset stomach had left me feeling uneasy about leaving home,  along with the anxiety of transporting them alone late at night.  So for this night the best that I could offer was  ourselves at home and enjoying  time alone  together.   Time spent with just me and my two younger sons, in our comfortable accessible environment.  Engaged in activities that could be enjoyed from a wheelchair. 

Not to long ago someone said to me when you peek over the fence the grass always looks greener. Yep we have all heard it.   Well I do not want my friends grass.  I do not even care is she has a garden.  Actually I find grass a burden in my life,  the less of it would be better.  A paved path would suit me and my two younger sons much better.  Because then the  terrain would be  just be a bit easier for our wheelchairs to travel over.   Josiah would have loved  to view fireworks on a live location, such a small request. But he  has, with out complaint, settled to watch them on his ipad-  due to our current minor difficulties.  Because of great guilt on my failure to not strategically plan  ahead, I have in return promised him we would watch the State Fairs fireworks live at the MN Fair.

 I don't know if my friend watched any   Fourth of July fireworks from the  beautiful location she was at earlier.  I imagined she  no doubt had a wonderful afternoon planned outdoors with family and friends.  But at the risk of being human, it was  just a moments  yearning to want just a bit more, as selfish as that might sound to some-  with out all the hurdles,  searching, planning and laboring help for it.