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.