sleepless hours

The sun was not yet  peaking over the horizon as  I looked  out across the lake.   The water was calm and the world still seemed to be asleep, at least from where I stood.  Well every one but us-special needs moms (specifically DMD moms) I silently  thought this to myself. I envisioned so many of them that I have come to know over the years.  Awake and alone like me at this early hour.  Gazing out at the world pondering in the silence. Perhaps even sharing spiritual thoughts with a higher  power.

   It was the third time for the night that I had been summoned  up stairs by my terminally ill sons to turn them.  Which really was not a bad night in the Duchenne world, I reasoned with myself.  I had had my share of  many nights where I just eventually gave up sleeping after the 7th request for assistance.  That was also a time in my life when PCA help was only a dream.  A time when I could only imagine what undisturbed sleep was like also.  So the soft whisper calling for me over the monitor  alerted me  from my scant sleep.  Quickly I  moved up each step  and gently entered the bedroom Cody and Josiah shared.    Swiftly I shifted them on  to their sides and helped them snuggle back under the covers.  All while keeping the conversations my chatty Cody wanted to start,  on a very minimal side.  Finally with both their bi-pap masks  re-positioned back on to their faces, I quietly left them to fall back to sleep.

   It was one of my scheduled nights to do over-night care. Normally a night or two short on sleep would hardly phase me, but it was already becoming a long week. I was short on PCA help, over booked with Medical appointments for my sons and challenged with meeting the demands of a world I felt very disconnected to and honestly out of place in .

  I shivered as I walked across the cold wood floor, towards the windows that over looked the small  lake we lived on. How still the world seemed right now. I could see the slight  hint that dawn was now upon us. I scanned  the lifeless lake.  It appeared to be even to early for the ducks to be out.  Yet here I was roaming about half awake.   My body felt weary and a dull ache ran down my neck..  I felt physically  tired, but my mind was alive racing with  thoughts.  Thoughts  that made me even more aware of the differences I felt towards the world outside. I let my mind wander in the  quiet.  My purpose and  my existence exposing itself even more to me.

 I have fought hard to get us to where we are now.  Having accepted  long ago that this life as caretaker is my journey and it is solely up to me to make it all work for my sons and I.  This place that I have made into a home for us simply made me feel good, provided me a sense of significance that gave me purpose, and most importantly love- beyond anything I  have ever known.  But attach to all that is the harsh reality that one day my journey will be met with deep sorrow.  All that has made me become who I am and that I cherish  will leave me in the wake of loss.  Leaving me to question my own  self worth.  I have accepted  that Duchenne Muscular Dystrophy ultimately forces me to decide who I am and  who I will continue to be.  And  again I will be faced with new questions and choices.

 But right now I did not want to analyze my life and question why these things have come to be. Why disease and death are a part of this world. Why was it so intimately attached to my own.    All I wanted was sleep to desperately rescue me, from  all the words, that  echoed in my head. It did not seem to make any sense that as sleep deprived as I  was, that  I just could not sleep.  Why was it so hard for me to just let go,  to turn my brain  off.   Why was the  world unfolding in my mind at this very early and rather ungodly hour.  I wondered and then wondered some more.   I was worn.  Before this  day had even begun, I was already feeling exhausted and drained. And then as it often does the very thing I questioned  hit me.

I am simply worn out.  Exhausted from clinging to hope while fighting despair.  Spent from pushing past my fears. Tired from a journey that demands everything I have and more with no monetary gain.  Drained and weary from the challenges and obstacles that attempt to tear me down,   Heart broken from loss,  realizing the "all"  that will never come to be, and the losses I have yet to face.

But also feeling-

Almost overwhelmed with determination and  strength at times.  Driven to succeed with self sacrificing dedication.  Accepting that this is all for a greater reason than I can comprehend. Unflagging devotion to my life altering journey.  Most importantly knowing this is the ultimate love and choice for me.  That this challenge I have accepted - is my only ambition.   A choice that has made me who I am. A choice I am proud of.

Zach heard the voices drift in and out. He wanted to call out to them but as he parted his lips to speak a darkness swallowed him.  Slowly his mind  drifted.  Like a small boat lost at sea in the night.  Thoughts and images flashed past him in a blur. .  Slowly he drifted farther away as if there were large waves tossing the tiny vessel. Suddenly he began to see  familiar faces of family that had passed.  A fear swept through him as the images faded into a darkness that hovered around him.

Was he dying he wondered.  Was he already dead.  Was this the place you go to wait to cross over.  He remembered feeling pain and that to had now faded. He tried to open his eyes, but they felt heavy.  He felt to weak to fight anymore and let the darkness envelope him.

Doc placed a hand over Zach's forehead and then listened briefly to his heart and lungs.
 His body felt hot and damp from the perspiration of the fever.  He lay motionless except for the occasional jerkiness of contracting  muscle as they spasmed and then  stiffened.  Slowly he lifted and eye lid open, to examine the whites of  his eyes. He let the blood shot eye close. and wiped at his own brow.  The fever had spread and his heart rate was growing weaker.   Doc looked over at Josiah.  His face told him it was not good.  Most likely time was running out fast and Josiah did not need words to tell him that.  He stepped over to where Eve worked with the vials and a microscope.  Everything was depending on her now.

Images began dancing in front of Zach again.  Images of when he was a child, perhaps around ten.  He could not see his face but he knew it was himself.  He was laughing as he was running through a field.  He felt the warmth of the sun  and an occasionally tickle as blades of tall grass brushed against his bare legs.  He was certain it was summer but he could not make out where he was.  But he felt safe and happy.  Something was running close behind him. It ruffled through the knee high grass, keeping stride with him. The bark of a dog caused him to turn and he saw his child hood dog, 'Share".  She bounced along following in the wake of his path. He smiled and called her name.

Out of know where an image lunged at Share. She yelped as the dark figure grabbed her.  Zach stopped. The sun quickly faded and shadow of darkness surrounded him.  Frozen he watched as a hideous man beast shook his beloved pets  tiny body as his gnarling teeth clenched down on her throat.  Zach screamed as he trembled in shock.  The human monster turned toward him with blood splattered across its unsightly face with Share still clenched in his blood stained hands.  He tossed her  tiny lifeless body and took steps toward Zach.

It was the second day that I had to force myself to get up.  I stared at the ceiling blankly before I  made any movement.  My head pounded and I felt  a  burning sensation run down my neck into my shoulders as I  turned my head towards the clock.  It was getting late I had to start moving.  But as I turned my body to the side,  my legs felt heavy and also ached.  A queasy uneasiness passed over me. I had to get up.  It did not matter how I felt.  It did not matter that I had not slept  more than 3 hours for the last few nights.  I had to disengage from this pity party that seemed to make itself at home in my mind. There was more to my existence then my needs.  I had two lives in particular that relied on my constant care. Also there was no one else to fill in for me.  It was just that simple-  there was no one else.

I threw my legs over the side of the bed.   A surge of pain traveled up into my back.  My body felt weighted and lifeless.  I pushed my shoulders back, as I  stood up, straightening myself.   Why was I feeling this pain I wondered, to no one.  It was not like I had done anything different the last few days.  I stepped away from the bed and attempted to stretch through the aches.  A tingling feeling labored in each foot as I  stepped towards the door.  I wished more than anything I could crawl right back into bed.  Hide from the world hide from life. Just hide.  It was no use pretending what I was feeling was real -life, well my life anyway,  had just become to much.  I was drained.  Tired of smiling my way through the sorrow.  Tired of hoping for more.  Tired of waiting to exhale.

 The house felt chilly and I shivered slightly from the cool air.  I took a deep breath and tried to picture my happy place.  I was not even sure I actually had a happy place.   But  I remembered a conversation I had with a psychologist when Josiah was hospitalized  last May.  Sometimes we need to step away from our thoughts by mentally drawing ourselves somewhere else, I was told.  The first image that came to my mind  was -Me in my kayak floating on my lake.  For a second I  could almost feel the sun beating down on me. Then the water became choppy my overwhelming thoughts rushed back to me. 

My sons needed me and nothing else mattered because I was their means of thriving.   Every aspect of their  survival depended on me.  Even if they had an itch on their nose they needed me.  My only ambition was  to  take care of them, to be their arms their legs and at times their only friend.  I passed by the hallway mirror just outside my bedroom door. I glanced at the reflection of me.  I looked the same.  A bit worn, a little disheveled with a hint a grey threatening my roots.  At least I  did not look as bad as I  felt  I thought to myself.

With my head still pounding I dragged my body up the flight of stairs toward my sons room. I stopped and listened just outside the door.  I could hear the slight hum of Josiah's bi pap.  No,  they were not calling for me yet. Quickly I moved into the kitchen to prepare their morning meds.  My mind raced with thoughts as I maneuvered around the kitchen.  Another uneasiness rushed through me.  It came at me so hard I rested against the kitchen counter.  My gut ached and I felt a  sadness swallow me.  With in seconds I was overwhelmed with emotion.  Sorrow filling my core as though I was an empty vessel.  My eyes filled with tears.   I  blinked as pools  cascaded down my cheeks.  I was frozen amidst this flood of unwanted feelings.  Trembling from  this hostile take over.  Becoming lost in my own sea of despair as every fear and sad  memory lunged toward me .  I quit fighting  and felt myself  surrender under its siege.  I just wanted it to end.  I wanted to be numb again,  be free of the sorrow.  I had no time for this.

The message echoed through my mind over and over, I had no time for this.  This falling a part business. Yet I had no more control over what was happening than breathing.  Some days it just took more than I  felt I had to offer.  The moment was interrupted as I heard the soft call "MOM". Instantly I  wiped at my eyes. The emptiness slowly parted and a new feeling began to stir with in me.  Something that pushed me to rise above the sadness that tried to hold me captive.  A force that guided me to a purpose.  Yes, that was it - I had a purpose.  There was way more to my life than just making sure my stomach was full and I had clothes on my back. There was more to me than living for an occasional night out. I had purpose, I was needed.  My life mattered to someone.

I know there will be days when the isolation and disconnect will wrestle with me over my very existence. There will be times when hope fades and  I will have to pick myself up once again and continually I will need to be reminded I have an amazing  purpose.  I will hang on to knowing  that I am  the heart that keeps the journey going "I am a mother".