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".   

the Duchenne Warrior

I held my phone in my hand. I was at a loss for words as I  looked at the posting of a friend on Face book. A single tear rolled silently down my face.  My heart broke for her as I  studied  the photo.  The beautiful photo of her next to her son, as he laid in bed.  It also broke for  her family and it broke for her amazingly brave son, who had given everything in his fight for life.  I breathed in deep.   I  hated this disease with a passion. I knew the sorrow it brought to  the families  that were touched by its unrelenting attack.  After all I had been living  with it my entire life.   I understood the anger, the fear  and the tormenting loss.  But even I  at this time was at a loss for words.  What do you say to a mother as she is saying the final  goodbye to her terminally ill son.   What words of comfort can you offer to the  family that has gathered around their beloved for one last goodbye.  I tried to imagine what I would want to hear.  I had nothing.  Nothing except that,  I would want to know people cared. I would want to know that it mattered in some way that my son  would no longer be here. I would want to feel  the out pour of love in the most purest form.

The DMD community had been sending words of heart felt support honoring this brave young warriors decision to cease in his battle with Duchenne.  As best we could from different corners of the globe we posted prayer hands and hearts.   But the harsh reality was at 27 years his young  life was ending.  The day had come for him to fly.  He like  most of us in  the DMD community understood, this was a battle he would never win.  All the machines that had assisted him this far only prolonged the end that would come, no matter how hard we hoped or prayed for a treatment, or a cure.  This very brave young man had made a decision no young man should ever be faced with.   A decision many of us parents with  older sons living with this disease fear we may one day be faced with ourselves, far far to soon.  A very brave decision that would finally give him peace and end his immense suffering.

I wiped at the second tear that had begun to form.  My son  Cody had just turned  25 years old. Oh yes, how I hated this disease.  I sat alone in silence thinking about what being 25 years old means to a terminally ill young man.  The grim stats are all there in the Muscular Dystrophy medical journals.   I also thought about what it meant to me, the parent of a son who was approaching a medically defined expiration date.  I felt the fear and the deep sorrow.   The fear that is so intertwined in my daily life it has now become  a permanent part of me.  A  fear, that is sacred and that I cant allow to be treated lightly so I keep it hidden.  The daily sorrow  as a DMD parent I  keep silent from the world. The sorrow of  knowing the fate to come.

It  is a cruel and harsh reality for our sons.  One that we as  Duchenne parents struggle with daily.  We will watch helplessly.  Worn and grief stricken as our sons eventually,  lose  in their battle. But only after suffering for years with this monstrous muscle wasting disease.  This is a journey that somehow we have been chosen for.  A fate  destined with heart break and loss.

I looked at my friend in the photo and then I glanced at my own reflection through  the window I  was sitting by.  We were both  just mothers. Mothers to young men whom we loved unconditionally.  Young men  in battle for life.  Mothers who watched their sons dreams die as Duchenne progressed. Mothers filled with fatigue but who  learned to be strong even when overwhelmed with fear.  Mothers who faced each day with unconditional love for their courageous sons.   

I looked back at the photo once again. Blinking back  even more tears.  I hated this disease so intimately.   But even in its ugliest form I have been honored to embrace a love unfamiliar to many.   I now saw not only a Mother but, the essence of love in the most purest form. I saw the joy she held for her son.  The deep joy in sorrow that brings us the most perfect love.  I embraced in the warmth.  Yes her heart I knew was breaking but the spirit of the love between her and her son spoke of compassion and truth.  This love I  understood.

On this journey we will undoubtedly at times cling to hope and prayer.  But in the end when our hearts are broken  we will turn to our circle of family and friends for love, support and strength.  My prayer for my friend and the many other Duchenne families that have lost a loved one to this horrific disease  is " May you never feel you are on this journey alone.  May you find  strength when despair is near.  May love always find its way to you and keep you."

yes we can

I began covering my son Josiah's arms with sun block, occasionally peaking over his slender shoulder towards the splashing sounds I heard coming from the water behind him.  Josiah silently kept his brown eyes fixed on me. I knew he felt nervous and yet still very excited to have this opportunity. His silence was expected as he processed this event.  We had been  talking about this opportunity for several days, me prepping them with what to expect.  Now the day was finally here.   I glanced over at Cody, my middle son, who chatted excitedly with Paochu, his PCA and my right hand helper. She carefully spread a thin line of sun block over Cody's new tattoo.  Paochu smiled as she assured him how fun it was going to be and how excited she was for him. I took a deep breath.  As excited as I  was for my sons  I also felt the slight tingle of fear stirring with in me. 

I was hesitant when first introduced to the idea of this new adventure.   I knew the limitations my sons had with their very weakened muscles and the complexities Josiah's new diagnosis presented to us. I relished over the many things that could go wrong.  I understood I had to surrender the control of the situation to the many hands that were now coming out to make this event happen for my sons.    I also knew the challenges we were about to face would require a team effort to ensure both my sons safety.   But since the very beginning of our journey into the Duchenne world  I had promised my sons and myself  I would not limit their experiences because of my fear and the limitations set by their diagnosis.

 The moment we had deployed from my van we were cheerfully greeted by  members of the "Shock waves" adapted water ski team.  Almost immediately they were assuring me and my sons every safety concern I had would be addressed and that they planned on giving my sons the best  possible experience while in the water.  All that my sons needed was the will to want to try this new adventure.

I watched frozen in awe,  as a boat whizzed by us.  Two skiers were positioned on either side of a young man  that was sitting nestled on an adapted chair ski. Safely behind him a jet ski followed.  My eyes stayed fixed on them as they passed by us.  The skiers  waved excitedly to us smiling and laughing. The crowd around us cheered and clapped. I found myself excitedly cheering back.  I choked back a  small cry of pure joy.  This was really going to happen today.  My two severely physically challenged sons were going to water ski.

I looked at Paochu with a nervous smile. She smiled back and assured me simply " they want this and they can do it'.  I wanted this for them as much as they wanted to do this. But my  motherly fear  fluttered inside me. We gave the ski team members, now gathering around us, instructions on how to lift my sons. Also pointing out the best way to position them when sitting. While Cody was carefully brought down to the water to wait his turn, I fitted Josiah with his neck brace and a floating neck pillow, designed to keep his head upright when in compromised conditions.  Items I had  brought from home.  Items we kept handy in a closet because of our love for adventure. Paochu stuck close to Cody in the water as they prepared for take off giving me great comfort, while I hovered over Josiah. She helped assist with his life jacket  and double checked to make sure he had been securely fastened in his ski seat.  As if it were  magic, we  watched, my almost 25 year old son with Duchenne Muscular Dystrophy fitted in a adaptable water ski seat, water ski around the lake. I felt my eyes moisten while snapping the camera.  My sons once again were defying the odds of this horrible fatal disease.

As Cody was brought just as safely back to me, his smile told me all I  needed to know.  This  was as magical to him as it was to me. This was a moment we would savor for a long long time to come. As if on cue Cody turned  to me and said. "Mom I am going again, I love it".  We then worked to position my youngest and medically fragile Josiah into an awaiting ski chair.  I jumped into  the boat  that would be pulling him.  Tears of pure joy fell from my eyes as I watched my child,  who we had  almost lost to pneumonia 6 weeks prior, now water skiing.

This  journey has taken me down some very difficult trying  paths.  At times leaving me doubting what I  am even capable of doing. But its my sons who seem to some how help me find the strength I need.    There  have been many times Josiah and Cody have asked to do some very challenging things that require me to really push myself.   If  this wonderful group had not found their way to us I   never would have ever imagined water skiing would have been  one of them. I  don't know if there are even words to actually describe the pure joy that exploded in me watching my sons water ski.

  I don't pretend to know anything special about caring for a special needs child.  I only try to let my sons lead in the direction they want their journey to go.   I try to help us face our challenges the best I can  and  accept that sometimes what we want  is out of our hands.  I am so thankful  they have been so blessed  to have so many windows of opportunity open for them. I am so thankful for all the wonderful people that have entered into our lives and given of them selves to help my sons soar.

I cant wait to see where the  path takes us next.

I needed to believe

I watched as his lips started to turn from a pale pink to a deep  purple.  My heart raced as fear began to rise up my throat, making me feel as though my own air was being cut off.  I knew this fear.  It was not new to me.  I had been down this road twice before. Five years prior with my eldest son Zach, who has been spared the  diagnosis of Muscular Dystrophy.  Then again 18 months ago with Josiah.  When he had caught influenza and pneumonia.  I felt so powerless, as we  waited for the ambulance.  Faster, I squeezed  the large ball attached to the mask I held over his face, that forced air into my baby.  Josiah"s big beautiful scared brown eyes stayed locked on me. His lips pursed slightly.  "Don't talk baby." I urged him.  "Just breath, help is almost here."

 I did not need a doctor to tell me what was happening.  Tears rolled down my face uncontrollably on the way to the hospital.  Josiah had aspirated on saliva. What I did not know was that one of the drugs he had been prescribed, for depression and OCD, side effects produced excess saliva.   Saliva in amounts to great for him to swallow safely.

In the ER I felt so small and utterly alone.  A mouse clinging to the side of his bed, begging for his life.  Watching through eyes blurred from tears,  I saw the numbers.   I stepped back as a crash team came running.  We were loosing Josiah.   I felt an arm around me  as one of the attendees tried to assure  me they were doing everything they could, and I  needed to let them do their job.  I wanted to hear the words he will be fine, but I saw the fear as I looked around the room.  And then my baby seized.  More staff came running ( stat).  I  took another step backwards.  His poor little body shook and then went stiff.  Another staff person  began asking me questions about his history if any with seizures, blood clots and his heart.

I stood there frozen feeling utterly alone, with pieces of me breaking. I watched his vitals plummet.   I needed to touch him.  To make sure he knew I was still here.  Most importantly I needed to call him back to me.  Seconds later they were whisking him off to scan for blood clots.  I was that small mouse again. Only this time  in a corner alone,  quivering in a wake of tears, begging God.

 Three  days after being admitted into the hospital his vitals began to crash a second time.  He  had another seizure, it took him two days to come out of.  I became lost in my fear that he might not be coming  home with me.  My fear was now accompanied with  anger.  Anger that my son was not getting better.  In  fact they were having a difficult time stabilizing him.  Along with that anger  a new sorrow had begun to grow with in me.  I knew the course of this disease.  I had watched it  savagely attack my three brothers through my childhood, until it claimed their lives.  Now  helplessly again, I watch my two youngest sons in the same  battle with  this merciless monster.  As a mom watching her  children in daily battle with a fatal disease, I also ardently pray, they do not  suffer this horrible fate longer because I am selfish and can't  let them  go.  Its a deep inner battle, I  struggle with, daily.   There will be some of you who  will not even come close to understanding this.

I stayed at Josiah's side for two weeks and three days during his stay in the hospital.  My fear felt so great, I at times trembled.  Fear from knowing, he will leave me far to early,  and there is nothing I can do about it, because that is the reality with  Duchenne Muscular Dystrophy.   It was a few days   after Josiah had crashed for the second time and had not yet showed to be making any improvements  that I saw him laying in bed  with his hands folded together across his chest.  I watched from across the room in silence.  A bit surprised he even had the strength to be  able to put his hands together.  Even on good days he often needed my assistance to move them.  Several minutes later he asked me to turn  him on his side.  As I  helped him I asked  what he was just doing with his hands together.  He said quite simply  "talking to God." I smiled at him.   And then THE question came.  "Mom am I going to die."  What was left of My heart broke.  For him and for me.  I  was so very scared and desperately wanted to hide my fear from him.  But as I looked at his beautiful face, I saw it. He had folded his hands.  There it was, an improvement, my sign.  It was then that  I saw "what" he needed from me.  I felt the tears fall.  I let them , it was useless to fight them.  What he needed  now from me, was  strength.    Strength that I BELIEVED he would recover and come home with me.

I wont lie and say I even pretend to  understand anything at  all on this journey.  The tears fall frequently and most days I am to scared to even exhale.  As for prayers its usually me yelling at the power upstairs. For those of you who gasp at that notion-Seriously he already knows who I am and what I  am going to do.  Its me who has to learn on this journey.  For the record I have to share I always add in "Please don't let me be selfish by asking  him to suffer more on earth, for me.  Give me the strength to let go when its time.'  In  those difficult days  at my sons side when I felt as useless as a scared mouse, I believe I was meant to be right where I was at the exact moment "he" intended.

Josiah lungs and heart are good and they did not find a blood clot.
But we do now finally have an explanation for his seizures.  So he   has been diagnosed with more complications from another condition that he will have to live with.  However he  made a complete recovery from aspirating.  We have the saliva issue under control.  He was released from the hospital after 17 days.     I embrace each day with my sons because for now his journey is not over. 




 

Eve moved quietly in next to Doc where he sat next to Zach.  He had been watching Zach closely.  His color was beginning to fade to an ashen.  He spent more time unconscious now  and his breathing seemed more labor.  She did not need to ask how he was doing.  what she saw told her they needed to act fast.

She laid the vials out in front of her and Doc.  "Tell me what you know". He said.  "Give me the details on what the lab was doing."  She pulled out the reports she had brought with her.  "It looks like they were injecting all the participants with the vial labeled  Alpha PTC9."  She paused and read some more.  "But there are parts in the report with highlighted  symbols and notes referring to file incomplete.  It looks like there was another compound created but no notes on the studies who were injected." Doc looked at the reports.  "Eve" he asked taking in a deep breath.  "Could there have been participants given a second injection that know one on your team  knew about.  No one that is other than a staff person operating under another order?"  Eve's colored drained from  her face.

 She remembered  corporate coming in to visit and  touring the labs.  Her boss in particular was very interested in the labs techs.  He had asked her to report to him directly, all  the research teams names, hours they worked the lab and  the files they were working on.  He had  even arranged to recruit a few of his own guys.  He created a lead position in the lab.  A lead she knew reported directly under him.   He wanted his guy kept abreast on all  activity in the lab.   Because he was her boss she had followed his command even though it left her in the dark as to what exactly his own team was doing  in the lab .

There was the sound of commotion coming from the hall.  Josiah placed his hand on his pistol,  motioned for Eve and Doc to stay put and hurried out to the hall.  Blake and George had entered the compound with Tony.  The Bloody corps in the hall stopped them all in their tracks.  They looked up to see Josiah standing watching them.    "what in the hell is going on here".  "We were called in for back up.  We did not know it was a multiple homicide case " .  Blake informed him.  Tony pushed past George and Blake.  "Where is Eve ?"  He demanded.  I am  the CEO of  Copeland.  Eve called me this morning.