what is sleep

It was my fourth time climbing the stairs in the night.  The fourth time I had to pull myself out of bed in the cold wee hours of the night,  to answer  the calls of the small voices that called out to me from the dark.  While the world slept  I wandered through my house again and again, to the aid of my two youngest sons.  I was tired, cold and beginning to feel the weariness of my life pulling at me.  Almost mechanically I worked through the dark hallway toward Josiah and Cody's room.  Not even sure which son had now called me I went first to Josiah.  After turning and repositioning him to his other side comfortably,  I checked on  Cody. Whom, I had happily discovered was still soundly asleep.  Carefully I closed the door to the room they shared, and began to head back to my room, down stairs.  It was almost 5am.   It seemed if I did the math right, I had been woken up just about every 1.7 hours to assist my sons.  In another 1.5 hours I would be getting up once again, to begin to prepare us for another day.  Another day, in the world of fighting Duchenne.

I crawled back in bed pulling the covers up over my head, in the great hopes  to keep the thoughts that now were threatening to keep me awake, away.  Events and moments, all neatly tangled together, exposing compromise, fear, perseverance, and hope.  Thoughts that  charged at me, like the flames of a blazing fire.  Challenging me to feel beyond the surface of my own emotions.  Demanding me to strive for more than I have ever dared to dream.  Ever so slowly I felt myself falling.  Drifting off to a place of slumber but, very aware of all the conditions with  in my world.  One thought echoed as I  slowly surrendered.  I was Loosing in a battle that I was never intended to win.

Memories of events earlier in the week flashed before me, as I felt myself become even more drawn into a state of semi-consciousness.  Haunting  moments tinged with sorrow flashed through my mind. Laughing moments of pure joy danced along the walls of my semi-sleeping brain.   Bringing with it emotions that I fervently had hoped would not trouble me now, with so little time left for sleep.  I laid there with out moving.   Consumed with my feelings, that  this very moment as still as it was, served no purpose other than to remind me of the facts I already knew.

I was almost startled as the sounds of a melody filled my head.  It seemed I had only just closed my eyes and my day was now ready to bloom with full force.  I smiled to myself, as I rose to greet the morning and shut off my alarm clock.  I was Blessed with another day to love  my cherished sons.  The trouble of my sleepless night swiftly faded.  How could I let the loss of sleep even compare to the magnitude of what deep unconditional love brought to my very existence on a daily basis.  For deep inside my hidden wounds I knew all too well that one day far far to soon, the sorrow of silence will fill my halls.  It will then be sleep  I  cling too,  in the  hopes of finding comfort,  through my endless nights and days of longing to hear my sons call out to me.
 

the unintended date

I hurried toward the front door of the tavern while fumbling with my rain coat I had grabbed from the back seat of my car .  I slight chill ran over my bare shoulders.  The first date of the evening had gone very well. As he walked me to my car and gently turned to embrace me goodbye, I felt positive, that yes, I would  be interested in another date. It was refreshing to meet someone who did not make me question my taste in men. Also it was  encouraging to know I could  attract a man who was not clingy and needy like the last man whom I had dated for a short period.  It was a pleasant surprise that I had actually also found this new suitor to be humorous and charming.  So charming that I was almost late for my second date of the night. A date I had only agreed to meet in  the hopes of discouraging his interest and reaffirm to him that he was not my type, even though he found me captivating over the phone.

I glanced at my reflection in the large picture window as I approached the front door.  I was pleased that I had chosen a slimming sundress, that displayed the slight curve of my hips and a halter neckline that accented my feminine shoulders.  The evening air carried a  cool summer breeze, but I was determined to not hide under my coat. I felt confident as I tossed my hair that this look was working well for me tonight.  I slowed my pace as I neared  the door, feeling happy how the evening had gone so far.  A deep voice suddenly interrupted my thoughts.  Sitting off to the side just outside of the entry I noticed a man and a woman.  It appeared it was me this man had just directed a remark too. I smiled with a slight chuckle, as he stated that " I was to pretty not to be smiling".  Very quickly I said " My smile was dependent on  what was waiting for me inside."

There was a comfortable busy crowd inside. A crowd that hummed with laughter and the buzz of excitement from a typical Friday night. A swift glance around the room let me know my date was not yet present.  I quickly grabbed a pub table near the middle of the room that faced the doorway. A bit lost in my thoughts I was almost caught by surprise when I heard a slightly familiar voice speaking to me.  The man that I had just seen outside was now standing next to me. Smiling, and seeming very confident.  He told me with an almost teasing grin  that he was the person I was suppose to be meeting.  I scanned him quickly from head to toe.  Very much liking what I saw, while enjoying his boldness and the  humor in his approach to me.  Instantly I found myself a bit drawn to him.  Apart of me wished truly that he was the date I was suppose to be meeting.

Very politely and rather quickly he suggested he wait with me for my date. Before I even had time to consider objecting (which truthfully was not what I  intended to do) he was making himself comfortable while also extending an invitation to  me, to come join his party of family and friends, just across the room from me,  if I still felt so compelled to wait for my apparent no show. Indeed this tall handsome stranger was intriguing and if nothing more a sweet answer to the fact that I was being stood up.

After waiting for 15 minutes I did finally agree to  accept my  new friends invitation.  I felt a definite connection, as I learned we knew some of the same people and  were graduates of the  same high school, though from different years. He was a home boy, which made conversation easy and helped me to feel comfortable  with  the people in his party.

The evening ended with us exchanging numbers and me agreeing to a dinner date with him the next night.   We shared an attraction to each other and  it almost seemed too simple to be real.  He saw me, approached me, and took a chance.  I found myself now feeling very  pleased my second date did  not show up and  more importantly I was feeling excited about seeing him again the next night and any thoughts i had left  of my first date that evening were fading fast.  

For  the record:
 We have been happily dating  for almost 2 months  from that night we met-It never ceases to amaze me just how  somethings have a wonderful way of working out when you least expect it.

explaining a moment of sadness

There are  times I can find myself absorbed into emotions that clutch at me so strongly I am literally frozen with in its grasp. Unable to move past the murky underseas that fights to control my thoughts.    Emotions triggered only after exhaustion and fatigue have left me drained and feeling my very inner strength has been defeated.  I am at these times steadfast clinging to a desire to be any where but the current plateau that I have allowed to control me. Toremnted by fear that I have somehow failed with  all my attempts to somehow control the parts of me that manifest what I detest most, my inner fear and anguish -thoughts that I have somehow not lived up to my own expectations.

Alone in my thoughts and with words driven from a passion so deep with in  me I surrender.  I surrender in hopes to explore serenity.  A quality of  peacefulness that will carry me to a place drenched with hope and consumed by love.  But  only after accepting I cannot defy the human qualities I posses and will occasionally find myself overwhelmed with- stress from this world and the journey that I have been destined to travel.

In simpler words but more direct  I am a mom first and foremost.  A mother challenged daily with meeting the needs of her two terminally ill sons.  A woman challenged by a world that demands her to be resilient and beautiful all at the same time.  A special mom who knows accepting sorrow into her world is the only way to move past despair. A mother  consumed with   hopes and dreams but also the knowledge that death is a reality in her world far  to soon for her children.

For the few who have no idea what I am even talking about- the words behind my smile says it very clearly.  The adventures I have had with my sons shows that all though there are moments short of laughter at times, I have one ambition, to be the force my sons need, to prevail in a world full of barriers. I accept there are days that will cause my smile to fade, but only momentarily. Through the beauty of  being a special needs mother I have found great joy with in my sorrow.