for keeps sake....

His beautiful brown eyes looked deeply into mine.  Quietly he waited for my response.  I understood the apprehension he was feeling at the moment. Quite frankly every other weekend I experience similar uneasiness as I send my sons off to their fathers for the weekend.  While I know my sons father loves them, there is most definitely concern in the quality of care he provides. Especially knowing their apprehensiveness to alert him if he has not met all their needs. In my heart I knew this night tonight was a step forward for us all.  A step I needed to make to ensure  we were all moving in the right direction.

Gently I gave  my little Josiah a squeeze as I kissed him on the forehead.  "This will be a fun guys night" I said, desperately hoping, I could help him move past his uncomfortableness before he embarked on his evening  out.  "I am not sure about this  mom.  You know how to lift me better than anyone."  His voice cracked with adolescence,  as he spoke.  My last born was slowly turning into a young man right before my eyes.     I smiled  as I looked at his  gentle face admiring his youth.  Stepping aside to allow him room to grow was not easy for me.  My own anxiety  of separation softly whispered to me.  I secretly did not want to let go of his dependence on me any more than he did.  But I knew we both had to move forward. For the past seven  years  I had been  the only consistent immediate role model for all three  of my sons.   Sharing our world with  anyone   that did not live up to my expectations just was  not  acceptable at any cost.   Now with these tender teen years in full bloom I wanted\ Josiah to enjoy more positive male bonding time.   Preferable with a man that held positive endearments toward me. Someone that respected my authority with out challenge. Most importantly some one who did not feel burdened and that would embrace the challenges of caring for a child with special needs. 

I knew he still was not totally convinced he and his brother would survive the  evening with out my presence, to supervise their care.  I on the other hand felt total comfort in the decision to have my sons enjoy an evening out, without me.  A guys night, that also still included a family member.  Their loving uncle Bill would also be  joining them for the evening.   I felt confident between these two wonderful men my boys would not only enjoy themselves but, be very safe and well cared for.  It was time Josiah  allowed another caring human in to his comfort zone with out my constant presence. I just needed to assure him.   I wanted  desperately to explore the opportunity for them to develop a new friendships.  To see them engage in outings out in the community, trusting that they could survive being in the care of someone other than me, or my sister and her husband.

Helping Josiah to advocate his needs more has been challenging for both of us.  At times even disheartening for me knowing that he can become so uncomfortable in new surroundings  he will not  ask for help when he needs it.

We talked some more about  doing things with out mom.  Me reminding him he goes  on  field trips at school with just his class and teacher.  That he and his brother  stay at home alone with our sitter who is not related.  Most importantly we talked about making new friends.   Smiling at me, he finally said he would be fine at the races without me.   But he would miss me very much.    He appeared to be  even more comfortable with the  idea, when I asked him to be the teacher and help Craig learn how to care for him and his brother Cody.  After packing my boys in the car and going over a verbal list of do and don'ts with my sons, some hugs and kisses, they  left for guys night out at the car race track. I was assured through a couple of texts and a phone call the evening was going very well. The smiles my men had when they arrived home assured me, yes everything went well, very well.

As a single parent I have now reached another milestone in the DMD world.  I have taken a  step forward in opening a door allowing  more opportunities for my sons to grow beyond my ties to them.  Most importantly I have found the courage to entrust my beautiful sons care into the hands of someone I care very deeply for.

Opening our lives to something new can often be scary and  exciting.  When I put my sons to bed that night I asked them teasing  if we should keep Craig.  Cody told me excitedly "Yes we should, because Craig is a good man".  He repeated several times to me, Craig is a good man, mom.    Josiah called me near him to whisper,  "we should keep him, but next time we should all go to the races together."  Laughing I asked him why?  " I thought you had fun with just the guys".  Giggling he said " I like seeing you and Craig together mom, its funny when you kiss.  We can keep him, but you have  the next date alone." " I like that plan." I said as I kissed them both good night.

a bump in the dark

I heard the calls to me from in between weakened coughs,  I knew I had to get to Cody fast.    I shook my head to escape the daze feeling that was beginning  to invade me.  I just had no time right now to deal with another crisis.  Beneath my fingers  I could already feel a lump under my eye brow  growing and the pain increasing.  I wanted to cry out, I hurt, but I would only frighten my sons and have even more to take care of. In the dim light I headed towards Cody, careful not to wake his brother Josiah who I could hear breathing softly across the room. At least there seemed to be no wetness coming form my head, as I gently touched the bump resembling a little bit of an eye brow.  I felt somewhat relieved that I had not broken any skin. My impact with the door might not be as bad as it was feeling.

 I helped Cody to sit up in hopes it would help him produce a working cough faster. I fumbled around at his bedside to locate his remote control to raise the head of his bed up, while I cradled his head in one arm.     He felt warm, his fever had come back and he was now even more congested.  As his bed rose I also could see he would need repositioning.  What made matters worse I could also now see a shadow appearing over the top of my eye ball.   For a second it frightened me as I thought about trying to drive Cody to the emergency room with one eye swollen shut.

I needed an ice pack fast and Cody needed me right now to help him work through his coughing spell.  Of course I could wait.  It is those moments when somewhere from with in you just know instinctively how to stay calm and manage. As if on cue Cody released some  phlegm and began to relax alittle.  He appeared to not be in any real distress for the moment, giving me seconds to quickly run  to find the ice pack I would be spending the next few hours with.

After getting him comfortably back in bed, re medicated and assuring him my head was fine, I tiptoed from his room down the hall to the guest bathroom.  I now had time to  take a glance in the  mirror at the damage.  Yes, I would undoubtedly have a black eye forming  by morning. However, night was not over, I would need to combat pain and fatigue if he should call to me again. Images of me out from a concussion flashed through my mind.  What if I was not alert enough to even help my son.  Already sleep deprived there just was not much else I could do. I had to stay close by him,  it pained me to see him struggle so hard.  I curled up in the recliner across from his bed with the ice pack over my eye,  praying for peaceful sleep for the both of us.

 I stood in the black glittery almost stiletto heels staring at my self in the full length mirror.  My legs appeared a bit longer  and more slender. Yes, the shoes my younger sister Roxanne had left behind, when she came to visit for Easter  did help me feel sexier, maybe even a bit younger.  I loved the sparkle, the shape and the height it gave me.  I smiled, admiring the way my calves appeared to have lengthened.  I followed my reflection,  stepping back as I turned slightly to catch a side glimpse.  They were deffinetely very glamorous shoes. Shoes that were me, perhaps some  20 years ago.  Shoes, that I would have danced the night away in and not given the heel height a second thought, years ago.  Shoes, that even though were my size, no longer fit in my life. Shoes that belonged in my younger sisters life style.

Carefully I stepped out of the high heels and planted my feet squarely back on the hard wood floor.  Twirling in my new dress I headed back down the hall to my bedroom.  Waiting for me in my closet were a lovely pair of sensible strappy sandals in black patent.  I slid my feet in them and stepped back out in to the hall to critique my  image.  My freshly painted pink  toenails matched the hot pink trim in my dress perfectly. While the heals were some what lower, I was very  pleased.  My feet I decided looked pretty with a sleek sexy bareness about them. Without anymore hesitation I knew my outfit was now complete and I was ready for the prom dance I had been invited to with my two younger sons the coming weekend.

My sister Marie and I had busily spent the early part of the week shortening our formal gowns to just above the knee.  Having been unable to find dresses that created the elegance we wanted in shorter lengths we opted to design our own versions.  By altering the hems lines of some off the rack prom dresses we had  found we were able to create gowns that allowed us the capability to move freely.  Accompanying my sons Cody and Josiah to prom was such an honor, we both looked forward too.  Even though this night was a formal affair we would still have to be caretakers and  lift and maneuver my sons through out the evening. Dressing for the occasion had such a deep  meaning to us.

I smiled to myself  recalling last years Shriners Prom.  We had just gotten to the dance, I was helping to get Cody out of my van and stepped on the hem of my dress, while adjusting him in his chair.  Only able to find one  safety pin, I tried desperately to create a neat gathering of fabric in the front of my ruby red gown and spent the rest of night trying to keep from stressing  the satin material.   By the end of the night I had ripped my dress down in a several places. I had decided  then and there on that night, I would never again  choose to wear a gown to the floor. Keeping in mind however to short poses a problem with lifting too. Strapless dresses are also not on my to wear list when I am in my caretaker mode.  I am some how unable to lift bodies and keep my top in place. A lesson also learnt the hard way.

With my  sons almost magically  coordinated  with our backless gowns we seem to be ready.   Using the  left over fabric from shortening our dresses  Marie  created bow ties and a cumberbun for Josiah  to match.  I will have to admit however I did have to really talk my both my sons into agreeing to wear the pink bow ties that  had been designed for them.  Now with their suits pressed we are all looking so forward to this wonderful evening.

While I anxiously await  this special evening with my sons I cannot help but think about  changes.  Not only changes age has made on me but changes the life I am called to live requires of me.  My life with Duchenne  at times demands of me to  surrender and adapt to changes.  Changes that I am not always eager to embrace or accept. The effect that this disease has had on my life is so great that even my fashion style has been effected.  I will always admire the glittery, and delicate clothing I once could adorn freely.  It will always be in me to secretly want to bare my shoulders or cover myself in sequence.  The shoes I buy now will have a somewhat lower modest heel to help me  stay balanced when  lifting more than my weight.  On occasion I hope to still attend events that will allow me the opportunity to  borrow a few accessories from  my younger sisters more youthful wardrobe.  I will however let her keep the stilettos on her feet and accept  that I must be a bit more grounded and at times even more modest to meet the tender needs of my sons.

my image

Josiah sat next to me brushing his teeth. While  I brushed my hair looking in  his large bathroom mirror,  I glanced over at him.  I was  so happy and proud that  he could still manage this task by himself. Reaching over towards him I placed a free standing counter mirror in front of him, just in case he wanted to see for himself the beautiful job he was doing. Josiah kept busy with his grooming and never glanced over at the mirror.   Smiling at him I suggested he see how gleaming white his teeth looked.  He just smiled and continued with his brushing.  However something clicked in me at that precise moment.  It was almost as though I heard a soft whisper in my ear.  A voice, telling me something was very wrong here.  Something, that he had been  hiding  inside would now make my heart ache for him.

I knelt down next to Josiah to actually see what he was capable of seeing in the mirror at his level. The large wooden framed mirror above his bathroom vanity just grazed the top of his head with his reflection.  It  was not to surprising to me  that sitting in his desk chair the height was not exactly perfect for him, to admire his beauty.  We had designed his sink counter top to fit the height of his wheelchair.  Now with  the counter mirror in front of him clearly he was well with in his range of viewing.  Tilting it some more  toward him, I encouraged Josiah to take a peek. Having just finished  brushing his teeth, he wiped his face with his head still  turned away.  Somewhat giggling but very anxious to just be done he tried to scoot out of the room.  "Josiah" I cooed "you have to see how beautiful your smile is".  The closer I moved the mirror the more he angled his head to avoid  his reflection.   Gently I reached out to raise his chin.  Slowly his smile faded.  As he softly spoke  my eyes watered.  His beautiful little face looked up into mine with tears and almost whispering he told me he looked ugly.

Its moments like this that break my heart.  I did not think a day had ever passed by  where I had not praised my boys for their beauty and  abilities. I had seen Josiah look at photos of himself.  Never ever did I  notice  him to shy away from being photographed.  Kneeling at his side  I looked  into the  very sad eyes of my youngest, absorbing the pain he was sharing with me.  How could this have happened?  Holding him tightly in my arms, questions  raced through my mind. What caused my beautiful boy to feel so bad that he could not look at himself in the mirror?  Why did  I  not notice this sooner?  Where was I when this happened?  Most importantly what evil had made my child feel so badly?

We have all heard stories about bullying.  Stories that have often brought us to tears because of the tragic, damaging harm it can cause. Hurting because as caring human beings it pained us to see others suffer. I know  many of us have even been victims ourselves and can deeply understand  this pain.  I wanted  to some how free my child from this hurt.  Erase this horrible belief that he had accepted into reality.

 Slowly and and with teary eyes  Josiah confided in me the secret pain he had been hiding.  He was  well aware of the stares in public he receives. That was one hardship he dealt with, but recently  he had also been the target of insults from some females at school.  Ugly, was the word that seemed to have hurt  him the most.  The recent progression of his muscle disease has caused changes in his physical appearance, only enforcing his belief in the disastrous meaning of the ugly word.  Very aware of the  effects  his limited ability causes, he longed to be like any other teenager, however  in reality as harsh as it sounds, invitations are almost nonexistence and friends are not exactly  lining up at the door to hang out with him.

 I held him in my arms  while he talked, fighting back my own rage that someone had caused my child so much pain.  Together we both made it through that long tearful  day.  I manged to get Josiah to glance at himself  in the mirror later that afternoon.  It appeared his contagious  smile had  returned.   Deep inside I  felt so much sorrow that my son had to experience this sort of pain in addition to his daily suffering.  He would  have to continually accept the changes Duchenne will cause and  would undoubtedly experience  yet more low moments. I desperately wanted to cling to  hope that he will see all the beauty he truly posses one day soon and love  what he sees.  As sad as it is though no matter how hard I tried to help him he would  have to continue to share the world with ignorant unkind humans, something I could no more control than the weather. But,  I will not give up on trying to change the effects these unkind words have on him.  I am determined to keep all those that see him as the remarkable young man that he is close, very close at times.  

 Talking to Josiah's school and addressing the issue  has opened many eyes and is provoking more awareness.   While the episodes appear to have been isolated they are still being addressed.  As a realist I do not believe for a second it will not happen again.   I still will have concerns that Josiah  somehow feels he has to hide things, even from me.  Not only do bullied children often feel isolated but fear contributes to them hiding their pain. A child with a terminal disease often will try to hide anything outside thier disease for fear of feeling even more isolated.  Just being aware as parents that more may be going on, is all we can do at times.

I know I can not protect Josiah from everyone and he will over hear things that may make him feel sad from time to time.  The harsh reality of the world is, we as humans can be cruel even with out intending to be aka; sarcasm.

  It pleases me though that I can see true joy and happiness with in my sons.    I am so proud that all three of my sons do feel very loved and that I have managed to make that very apparent. Outside in the world beyond, the  reality is- as parents, there will be moments when we  will have to be a  warrior for our children.  That can be very tough and disheartening at times.   Quite frankly in all honesty it  causes me to deal with my own disgust towards society and acceptance.  When I reentered into the dating world seven years ago, while my appearance may have placed me on a list to be desired the fact that I had 2 sons with special needs set me very much aside.   Thankfully my happiness has never relied on the fate of falling in love.  But as humans we all want to belong and have a place in this world  that gives us that sense of self worth, most importantly though we need to be loved.  I know my son is not alone and my heart goes out to all of us who have felt less  at times.

  As I have grown stronger on my journey  I know " I would rather shine alone than be lost in the crowd" and as long as I am here" I will help my sons to always shine".

Do I believe

At first I felt nothing.  Listening to him I felt numb, as though all life had just been drained from me. I stood frozen unable to move or think.  I watched as the Doctors lips moved while he spoke to me.  His tired red eyes teared as he looked into mine. Deep inside me, I already somehow knew what he was telling me.  But now listening to him it became my heartbreaking reality.  

For some reason memories of sitting  in my prenatal classes amongst all the other happy anxious parents to be- flashed through my mind.  Maybe, it was because for the first time in my life I  finally felt like I had a purpose, a real meaning to be here, in this world.  A time in my life when I was in love and over joyed to be living my dream. I was with child and cherishing how alive it made me feel.   I drifted  back to a place in my life when  I was surrounded by other  females, who also embraced this new adventure.  Other young women, excited, scared, and  in love with the life that grew inside of them. Together we sat  in the arms of our partners, expressing our  fears, anticipation and the expected joy that was ahead.  Briefly I returned to  a time when I did not feel betrayed by faith and was not tormented by death.  

The present interrupted me abruptly.  Very softly spoken I heard the words "I am sorry".  A single tear trickled down my cheek.  In an instant my world changed.  At that precise moment all that I had hoped and dared to dream left me.  I stood motionless with my heart shattered,  knowing all to well this pain I was feeling right now,  was only the beginning of my new journey. 

Holding my beloved child in my arms, slowly, I unleashed my sorrow.  As tears silently streamed down my face I felt pieces of me die.  Desperately, I wanted to feel the same joy I felt when he was born.  His beauty captivated me as I looked down at this perfect little baby that I held.  " I am sorry" echoed in my head.  All around me I felt our world crashing and there was nothing I could do to stop it.  I was sorry too.  Sorry, that after all these years the medical world still had no treatment or cure for Duchenne.  Sorry that more boys would still have to endure all the pain living with Duchenne caused. Sorry, that  we would have to  continue to cling to hope for a cure to get through each day.  Most importantly, sorry that my beautiful baby would be sentenced to a life of living with a devastating disease, that shows no mercy in its unrelenting attack on the human body. Sorry that my son would slowly suffer from a disease that would eventually take his life far to soon, only after imprisoning him for years.

Often I will see or read something that triggers a memory from an event of my past.  Awakening emotions neatly  buried inside,  quietly resurfacing. In those moments I am left with explosions of feelings and stirring memories.  Experiences that scream to be unleashed with a purpose to be shared in some enlightning way.    I read a posting today on FaceBook regarding the question,   "Who believes  in miracles?"  Something deep inside me stirred.   While reading some of the responses I came across one response that said,  " No I do not believe in miracles, every thing is cause and effect".  I stared at the word "no" for awhile.  Only one  response  from a DMD mother had answered differently to that question.
   
It was over 20 some years ago when Duchenne personally reappeared into my world.  
Those feelings when my son was first diagnosed  controlled me for months. At times almost making getting out of bed impossible.  Somehow though I did.  I found the courage and strength to accept every challenge that laid ahead of us.  But if you had asked me in those first few months if I BELIEVED IN MIRACLES- my answer would have been NO.  It would have been an answer coming from heartache and fear.  It would have came from a mother who felt despair consume her after being  just told her son had an expiration date.  That her beautiful child was diagnosed with a terminal disease and there was no treatment or cure. 

Today I am a single mother of three sons.  most of you know my two youngest sons both suffer from an unrelenting fatal disease. They also struggle with a cognitive delay.  The past 12 years of raising them alone has been anything but miraculous.  We have struggled through some very difficult times that personally has only made me stronger in my perseverance to see my sons and I succeed.  Do I believe in miracles the answer is, yes.  Do I think I have personally experienced a miracle the answer is no, but I will admittedly share I have felt the touch of a higher power at times.

What I have experienced  is that even with the devastating effect Duchenne has had  on my sons and I  there have been moments when I  have also felt the presence of something more powerful with us.     I have seen my sons  loose the ability to walk, to raise their arms above their heads.  I have watched them completely become dependent on me for things most of us take for granted, like scratching the top of their nose, or rolling over in bed.  But I  have also watched them triumph through loss.

So yes,  I believe miracles happen.  But I am not willing to sell it short. It is not miraculous that I have raised three sons by my self.  That I have been responsible in providing for all the care in meeting  my two younger sons special needs, while helping to  put my eldest son through college as a single parent. That is the effect of  hard work and  personal sacrifice.  While I am thankful my sons are still with me and we live comfortably, it is the effect of my unconditional love and commitment to care fort them and part of Gods plan to have my sons still with me.  But if Cody or Josiah rose out of their wheelchair tomorrow and stood unsupported, yes, that would absolutely be miraculous. If love walked through the door and swept me off my feet today that might just qualify as  miraculous  too.

The joy we feel when we first hold our new born child can almost be described as a miraculous feeling.  Some times some of us will refer to finding the one with whom we want to spend the rest of our life with as miraculous.  In any event the belief in miracles is not meant to challenge us.   Believing in miracles  helps us to  survive the negative effects of this world  and that in itself is a blessing.

 I do believe where there is love great things can happen.  I believe Angels exist and walk amongst us.  I feel prayer is powerful to the heart and mind and that  hope and faith is essential to surviving tragedy.  I also believe that there is a great plan and we are all a very important part of Gods design.    
The thought of something miraculous gives us hope and in times of despair  for some of us that might be all we have to hold onto in this world.

             


   

I am not sure how long we sat there together. Me trapped underneath my eighteen year old Cody. His immobile body laid across my hips and chest. The more I squirmed the more I could feel our bodies sink in to the crater that was forming beneath us. Gently I tried to roll Cody to his side, the effort seemed almost useless. He was completely unable to move his legs with out help. Help, well that was a thought. Help from where and what. Across the room in his desk chair sat my youngest son Josiah, calling to us, asking if we were okay. A victim of Duchenne also. Josiah, unable to offer nothing more than his verbal support. We appeared fine, just momentarily trapped. Oh, I just wanted one day with out hurdles to jump over. One day that did not leave me feeling helpless or my son feeling imprisoned.

I thought briefly about the up coming strong man power/lift show we planned on seeing in a day. Clearly the human body could be trained to do amazing things. Training was not something I had but, strength and courage I knew about. Today I was going to be called to perform a little more than the usual, right now home with my sons. It was going to be up to me to get us out of this position. I knew though the hard part was still to come. I would eventually get up but how would I get Cody up. The image of my younger sister trapped on the toilet seat with Cody on her lap flashed through my mind. It was an awkward moment that could not be replayed if we tried. While visiting her over Thanksgiving she had assisted in helping me with Cody in the bathroom. Somehow she managed to back into the bathroom with Cody in her arms, and landed on the seat holding him. We laughed so hard, they had to sit there momentarily until we regained our composure, so I could lift him off her. Yes, this now was one of those moments.

I ran my fingers through Cody's hair, and gave him a hug. "I am going to have to slide from underneath you" I told him. Preparing him for some more shifting of his body. I was happy he only weighed 140 pounds, easily this could have been harder. Cody attempted some more wiggling. At the same time I pushed with my feet freeing my slender hips out from under his. We were making progress and my small frame seemed to be sliding out from under him at last. we would salvage this night and laugh about this together just like Thanksgiving I decided. This was a good week. Cody had been chosen as the Wish Kids Network Hero of the month. I was determined to show Cody together we can do anything, and that Heroes never give up.

Finally freed I knelt down next to Cody. Smiling he told me it felt good to be stretched out. I was pleased he was comfortable, relieved that our tumble had not harmed him. The question now was how would I get Cody up and out of this over sized bean bag to a chair. Pulling and turning him I helped him to sit up. Fluffing the cushion around him until he sat straight and balanced. Handing him the wii remotes, he was now ready to give this new seating a try. I hid my fear. Just pulling him onto that beanbag bed had caused me to become trapped and somehow I alone I would have to get him eventually up on to a chair later.

I finished lifting and positioning Josiah in his recliner, who can not be lifted by the hoyer because of his spinal fusion surgery. I then Stored away the useless transfer board that had gotten us into this situation. It was the board that caused me to loose my grip on Cody in the first place as it slipped beneath him. So much for saving my back. Frustrated, that once again all I want to do is care for my sons and I hit a wall. I am not asking anything from anyone. I am providing and caring for my sons alone. Devoted and willing to go to what ever level, to do my job.

I knew I had two choices, somehow drag Cody from the cushion (which I can not move because that alone weighs 60 lbs and is very wide,)to his bedroom and use the ceiling lift to get him up, or figure out away to safely take him off the cushion and use the hoyer lift. Not so easy. I have furniture to move like a couch, to get the hoyer lift close enough to him, once I get him off the cushion which has him encircled in a deep sink hole. Quite frankly I want the hoyer lift to be my friend, to make all things accessible. I want it to be the answer for Cody. But it can not pick him up from the lovesac/beanbag, which now he is beginning to like. Also, it can not safely put him in his reclining love seat. The footings do not allow it to come close enough or straddle that piece of furniture. So, to all the remarks I will likely hear about regarding lifts, if I want my son to be imprisoned and only use his wheel chair well yes, than it might be our answer. Safety is first but freedom is so important to us.
I am determined to not take anymore from them, even if it means me having to be more than I am.

P.s. we did have a sweet laugh together during dinner. Cody asked me if I started lifting weights like the strong power lifters would I then be able to lift him. Hmm, I am thinking on this.

We walked together quietly for sometime, our fingers entwined slightly. The moon glistened on the newly fallen dusting of snow. I looked up at the stars that brightly lit up the night sky. The last year had been very tough on us, especially Josiah, it made me feel stronger to have him with me now. Some how he always helped me find peace in my broken shaken world. His hand gently squeezed mine. I stopped and looked at him momentarily, I wanted to know why. Why, was there so much pain in this world. He looked at me as a tear slowly rolled down his cheek. Pulling me closer he wrapped his arms around me. "I feel your sorrow" he sobbed softly into my ear. I hear the cries, I am with all of you always. I wanted to pull away. No, that was not what I wanted to hear right now. I wanted more from him. I needed to know that this was not all in vein. That some how he would end the suffering. He held me tight. I wanted to feel special, I wanted my prayers answered. Most importantly I wanted my sons to live. I wanted to end Duchenne. I let myself relax once again in his arms. "Trust in me" he whispered.

Some how he knew all my fears. Before him I stood broken, lost and alone. I surrendered and let myself sob in his arms. Today was no different than any other except that for these fleeting moments I did not have to be strong. I could bare my soul, unleash my fears. I had arms to hold me up. He raised my face our eyes meeting. Gently he wiped my tear stained cheeks. I felt myself enveloped in warmth. He comforted me in ways I could not explain, helped me to trust in myself. Yes, I knew why he came to me today. For that reason alone I knew I would not let him down. I could feel his heart beat as he held me. In a soft whisper he simply said "it is not time yet, soon, for now you need to be strong and have faith." He was so real so alive, with me right now. We walked some more then stopped. Our time together was up. It was time for me to go back and be all that I needed to be. I knew I had more challenges ahead of me to face. I understood also this pain that overwhelmed me at times would be with me throughout my journey. I would weep from heart ache but, I would also know unconditional love that few would ever know or understand. Love that God has intended for me to feel.

"Like you I have wept in pain and also felt joy" he said to me as he turned to leave." I am with you always, when you feel the most alone I am at your side." It felt good to hear those words again even though inside I wanted so much more. "Jesus" I called out to him as he began to walk away. "I will not give up even when it seems impossible." He smiled and then was gone. Inside of me his warmth, and touch lingered. I smiled at the two beautiful bright smiling faces that were waiting for me, for in them I could still see Jesus and all the love that was meant just for me.