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Wednesday, August 8, 2018

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."


Wednesday, July 11, 2018

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.






Monday, June 18, 2018

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. 




 

Thursday, April 26, 2018





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.

Wednesday, April 11, 2018





 Cody felt a slight vibrate from his phone.  It was Josiah.  Sending him a text  to let him know Eve was safe with him.  Cody walked back towards the lab, feeling somewhat relieved.   He peaked in through a small window on the labs main door.  He watched silently as the female figure staggered  aimlessly around the room.  She dragged her feet across the linoleum floor, as if they were to heavy to lift.  Bumping into a chairs and tables occasionally.   He stood for a few moments watching,  not quite  exactly sure what  he should do with his capture.

His thoughts wandered monetarily back to Eve. He felt himself grow warm as he pictured her face.  Dang,   he was into her.  There was no use fighting it.  Before all of  this he was not even sure he could feel anything like this  again.  It was certainly not in his plan to allow his heart to feel so fast.

 When things had ended  with Julie two years prior  he had sworn off women.  He scraped up the shattered pieces of what was left of his heart and  vowed to keep himself occupied with the ranch.   The news of his break up traveled fast through the little town of Hill City.  It did not take long  before some of the single women  began paying  him attention when ever he ventured into town.  On occasion a few would wander out to his place to pay a little neighborly hello share a beer or two and extend an invitation to a  home  cooked meal.  Cody though a bit reserved, had always been neighborly and making small talk was just second nature to him.  It was a bit  obvious there were a few gals who made it very clear they had intentions to help the broken hearted hunk forget Julie fast.   Cody had never been a one night stand kind of guy and even after a few beers casual sex was just not what he wanted, no matter how alluring he did knew he longed for more.  He politely declined there advances and made his trips into town less frequent and kept to himself as much as possible.

 So he stayed busy and kept to himself, until the day he found Eve.  Dazed and hurt bent over his water spicket.  Perhaps it was her vulnerability in that first moment he had  laid eyes on her, or, her strength and determination he saw now, that attracted him.  Whatever it was it was clear she had brought feelings he thought he had buried alive again. He drew in a deep breath has recalled the kiss they had recently shared.  Yes, it was definite he felt things for  Eve. Something more than what he had felt for Julie even.  Julie no doubt was beautiful and had pleased all his senses.  But there had always been apart of Julie that longed for something more than what  the ranch and he could offer.  Her desire for a faster more exciting  life  pulled her in a direction that lead her to the arms of another man.  A man that possessed a life style Cody could never give her.

His mind was pulled back to the present as the sound of something crashing to the floor filled his ears.  He moved quickly down the hall towards the sound. A few rooms away across the hall he stopped and carefully moved towards the door.   "Jesus, its gotta be another one."he said softly to himself .  Just inside the door he watched another rabid being push obstacles out of his way as he moved.  He was a larger man moving about, in the same crazed condition he was now becoming  accustomed to seeing.  At the sight of Cody he moved swiftly toward him.  Gnashing teeth and drool splattering from  his gnarled face.

Cody raised his fist as the man lunged at him. The impact send the rabid being sputtering backwards.  He landed in heap on the floor.   All Cody  knew at the moment for sure was the sooner he could help end this madness  the sooner he could concentrate on Eve.

Wednesday, March 14, 2018




Cody and Eve made their way back down the hall towards the stair case.  She carried the vials close to her with every intent on keeping them safe.  She wanted this nightmare to end and  hoped the answers they needed were resting in her arms.

Suddenly Cody stopped dead in his tracks. He reached out and grabbed her arm silently and put his fingers to his lips to alert her from  making a sound. She stopped immediately  and turned her head towards the direction he then pointed.  They could hear rustling.  Some  movement was coming from one of the rooms to her left.  Cody held his gun out and slowly moved forward towards the entry.  "Whats in this room." Cody asked her softly.  "Its a supply room mostly. But there is a second door to it.  Through that room."  She pointed to the next door, which was slightly a jar.   "Which is another smaller lab, we use mainly as a kind of lounge now for the night staff."  Cody motioned for her to get behind him.  She did as he asked and clutched the vials even tighter to her bosom. Her heart pounded.   Not another one she thought to herself. Whatever this virus was seemed to spread like a wild fire. He moved slowly through the door way. Holding one of his arms slightly behind him as a guide to keep Eve back  where she would be safest.

His eyes followed the back of a slender figure,  staggering towards the other doorway.  Eve peered under Cody's arm to get a look. She recognized instantly it  was one of  her lab techs, disheveled and awkwardly  moving.  She remembered her name- Megan the new gal. "Its Megan." She whispered to Cody.  "She works for us. She is an intern, I just recruited her two weeks ago."   "She's been bit.  look how she is moving.  And from the looks of her, she most likely bit someone else too."  Cody said as they stepped in the room. Bits of red was spattered across the front of her blouse and ran up both her arms. The ends of her long blond hair also seemed to be mixed with blood.  He noticed too some red texture  clinging to  a few strands cascading around the side of her face..  Most likely human tissue from  her prey he thought to himself.  "She is infected.  We can't leave her wondering here, she puts us all at risk."  Eve grabbed Cody's arm.  "Wait, can't we- do-do  something for her.  Cody - we can't.  We cant just shoot her." Eve spoke with such sorrow he could feel her pain.  He  could also feel her trembling as she pulled on his arm while she spoke.    "Josiah, come in." Cody spoke into his radio, with a voice just above a whisper. "Got something for us?" Josiah's strong voice came back seconds later.  "Yes, Eve has the vials.  But we also got one of those um- walking rabids, moving around.  A female.  Looks like she has had herself some dinner, but I have not seen any remains laying around yet." He paused and  gave the room a quick glance around.  "She been up here wondering in one of the labs. She has not noticed us yet. So far this female is it -all we have seen."   "Shit.  Jesus." A muffled voice spoke back.  "We can't just let her be lose." Josiah thought for a second before saying anymore. He could feel the heat rise under his arms. No telling what else they could run into up there.  Zach was getting worse, he needed them to act fast. "Anyway you can lock her up? Restrain her  some how, then check out the floor some more?  Without getting bit that is."  I can look around and maybe  I can lure her back into the office and lock her in, Eve has a key." " Jesus, man.  I was afraid of this.  Afraid there would be more. You cant leave her lose  but, you need to get back here with those lab tubes, now. Get Eve to the stairs I will wait for her at the bottom. Then you go back and lock that thing up."  "Sounds like a plan." Cody said looking at Eve.

 Eve nodded.  She knew she had to get back to Doc and somehow try to fix things. She and Cody backed out slowly and moved swiftly towards the stairs. "Be careful Cody." Eve said and just as fast grazed her lips in a dry kiss across his cheek. She felt herself instantly grow warm.   She then  turned quickly and  took the steps hurriedly.  Josiah  was waiting for her just as he had said.

Thursday, March 1, 2018




Eve and Cody headed down the hall way.  They passed a few motionless bloody corpse. The stench was almost suffocating.  Eve desperately tried to keep her eyes focused on the exit door ahead of them, which lead to the back  stairs and up to the second floor.  The second floor was quiet.  Nothing seemed disturbed in the area.  "What is up on this floor?"  Cody asked Eve.  " Some labs.  Closed off  of course, with a secured entrance." She said pausing to look at him." My office,  a couple supply rooms and about 5 inpatient rooms in the west wing.  All Locked off from the rest of the second floor.  I have a key in my office for the labs." She lead him down another very still hallway.  The  quiet was almost deafening.  Cody checked the handle of every door as they passed.  Peering inside each one briefly to make sure they were alone.

The pair found Eves office unlocked. They entered the door with Cody pushing her behind him. Eve gave a gasp as she noticed a desk chair had been overturned and a few drawers had been pulled open with the contents spewed over her desk and around the room, as though someone else had already been there searching for something.   She pulled open the bottom right side  drawer and pulled out a small metal secrets  box with a single key inside.  "Got it." Eve said turning around and almost running to the the door.  Cody followed closely behind as she hurriedly led them towards the labs.

The lab was still locked and seemed to be intact.  Eve wasted no time once inside.  She went directly to the a small fridge pulling out a a tray of vials.  Carefully she examined the label of each small glass tube.  "Alpha PTC9", she read it over again softly.  Pausing as she remembered, Marie from the lab  telling her about their recent  findings a few days ago.  An Antidote of some  sort, That increased  white  blood cells when provoked by infected red cells until new red cells could be regenrated.  When Eve alerted Headquarters about the labs findings they were immediately instructed to refrigerate the serum label it Alpha PTC9 tell no one until there were further instructions.  Eve understood in the medical research field they had to be very careful to not leak out information before there was data to back it up. They especially did not want any information leaking out into the wrongs hands.  Especially a group of radical activist that could out everyone at the center in danger.   So it did not seem an unreasonable request.  But it troubled her greatly that a few of the volunteers had disappeared in the night a few weeks prior to the serum being discovered.  It also left her very uncomfortable that there were things happening in the lab (her lab)that she had not been breifed on.