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Tuesday, April 21, 2015


My heart sank as  I read and reread the words I held in my trembling  hand. I suspected something but the news I had just discovered was not even a possibility that entered my mind. I stood looking around the room. Feeling cold and so alone.The reality of the situation almost choked me. I could not even comprehend how things came to this. I had suspicions but nothing prepared me for what I had just learnt. Hurt, sorrow  and fear overwhelmed me.  I was drained.  Let down and at the precise moment feeling extremely lost in the seriousness of all of it.  But  most importantly I was alone in the knowledge I had just gained. Left with  the facts from information that horrified me as to what else might  be  connected in to what seemed to be an ongoing problem. My heart sank as I felt the still air close in on me. How much more strength would be demanded of me.

I am not sure how long I stood staring off into nothing lost in my thoughts.  I felt numbness fill me and then just nothing. A nothingness so powerful I felt myself wishing to feel anything even   pain. Something that I could understand. Something I could grasp and  accept. But what was this I wondered to myself. I simply felt nothing a void where I once had emotion. Without feeling I had  nothing. I had no where to go from here. I simply felt all that I once hoped in believed in silently slip from me. I was a tiny peice floating in a sea of nothing. Just floating like a dust particle aimlessly drifting.  And then as I went in deeper into my own abyss a sadness overwhelmed me. AS I grasped at one deciding factor that flashed before me I realized it wasn't me who was lost.  I was more than this nothingness that I let threaten my existence. Even if I did not understand anything else I understood what mattered for the reality that invaded my world would  not have found it's way to  me if I did not.  And perhaps for just that purpose alone in the sea of darkness It was up to me to see that  change some how would make a difference even if sorrow hinged on the hems of her dress. I can't tell where the journey will end but  I can see the here and now and that may be all I ever have.

Monday, April 20, 2015

the afterwards

I stood unable to move, frozen in place.  My eyes traveled slowly following  the long tubes that were now connected to my youngest son.  Under neath the white starch sheets, tubes and bandages wound around his body.  Still   very heavily sedated he laid motionless, with his eyes  tightly shut.  I looked at the monitors that displayed his heart rate and the machine that monitored his breathing and then back to my sleeping son.  My heart ached for him as I felt tears forming in my eyes.  I wanted to scoop him in my arms, hold him, run with him away from this place.

Silent tears rolled down the sides of my face.  I moved closer to his bed, needing  desperately to touch him.  His face was swollen with tubes taped to the sides of his cheeks and running down his throat.  They had warned me he would look different and that it would be difficult to see him this way.  I felt the choke of tears building deep in my throat as I struggled with a flood of emotions. Slowly his eyes opened slightly as I gently caressed his hand. My heart broke as I  watched tears roll down his face, then felt his hand go limp and his eyes closed again.

 Surgery had went well for the most part I was told.  There had been some unexpected extra bleeding that caused concern, and surgery had taken a bit  longer  but, he was now appearing to slowly be progressing  to a stable condition.  The next several hours would tell us more as the medical night crew watched him closely.   I sat half  curled up next to my sister Marie who refused to leave my side, on a small couch at the foot of his bed that long first night and then eight more nights to follow alone with my Josiah.

Now four years later we continue to rejoice in celebration of Josiah and his recovery from spinal fusion surgery. Today though we celebrate so much more.  For although his disease has continued to progress in other areas taking more strength, he is  thriving. He is here with us living his life.

I am especially consumed with admiration for him as I  begin to pack us  for turkey hunting in  Iowa.  Happy to have  both my sons with Duchenne   participate in a sport that has given them even more opportunity to challenge their own limits and sore with strength and courage, as they defy the odds of  severely limited abilities with the help of a very supportive team that has gone beyond kindness. While I fold Josiah's camouflage clothing that he has been generously  outfitted with from this very giving organization, I  can not help but reflect on how far he has came and how far as a family we have grown.  I am filled with great joy as I prepare all three of my sons and myself to join  together to go beyond the world of DMD.  In closing I  want to share one beautiful thought from Josiah.  "Let your smile change the world but never let the world change your smile".

Thursday, April 16, 2015

prom with a promise

Instantly I saw Cody's face light up as he saw Kayla approaching.  He looked so mature and handsome in his black  tuxedo.  His charming smile dazzling almost as much as the  diamond stud earrings he wore. Completely captivated,  as he watched the young woman who had captured his heart 2 years ago  walk towards him.  Her beautiful purple beaded gown glistened as the setting sun surrounded her.  On top of her head  perfectly placed sat a sparkling tiara.  She was his princess, his Cinderella  and he her prince Charming , this was to be their night of nights.  She smiled shyly down at him as she reached his side.  Together they went inside to join the other young couples that were lining up for  the Grand March. 

 The night had finally come that would give Kayla and Cody their magical moment on the dance floor.  I stood off to the side snapping photos next to  Kayla's mother Linda, while her father Peter and my sister Marie captured shots from another angle.  All  of us  over joyed that our children were sharing this special  night together. It had broken all our hearts when almost a year ago to the day,  as fate would have it, the  High School Prom night had been traumatically altered for this very special couple. But today thanks to the Shriners Annual Prom Cody and Kayla were offered another chance to fulfill a dream.

 I stood looking down  the long corridor feeling extreme happiness. Something I had not felt in quite a while.  Young  ladies in beautiful gowns lined the hallway escorted by  handsome young men in tuxes.  My two sons in wheelchairs and their lovely dates were first in the line for the Grand March.  It seemed already magic  was at work to our advantage.  Having both my sons  in front of the line would help keep them from letting anticipation grow to much. With cameras in hand we snapped picture after picture of our children as they were introduced to the waiting crowd.  First my youngest son Josiah with my niece Kayla looking adorable in his white tuxedo coat and her in a  beautiful glittery  cream knee length dress.  Followed by his big brother Cody.  Linda and I  sharing in our emotions of pure joy as we listened to Kayla and Cody be announced. This was a chance that  allowed  them both  the experience to feel like every other Teenager .  A mile stone for them that was not limited or in anyway inhibited  by their physical challenges.  A night where they were presented just like all the other young  couples.  A night that would give them lasting memories. A night that would also to our surprise fill our hearts as parents with deep admiration for both Kayla and Cody.

It was a beautiful night, everything seemed to be going smoothly, we watched  Cody and Kayla shine as they danced together. While  Linda and I paraded around them like Paparazzi they handled the constant click of cameras with out complaint.  Towards the end of the night as we stood encircled around the two discussing a few other last  photo options that we should take of them together, Kayla and Cody took it upon themselves to create a magical moment.  A moment that caught us all in surprise. Seizing the opportunity perfectly  Kayla quickly assisted in handing Cody a ring with a sparkling stone. Without any hesitation Cody very carefully  placed the ring on her finger asking Kayla to marry him.  We stood surrounding them holding  our hearts and our tears of joy.  Kayla very gently bent down to Cody to seal the acceptance  with a kiss.

Every parent has hopes and dreams for their children, even special needs parents.  This is the stuff dreams are made of.  The magical  moments in life that can make hope a reality.