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.