Josiah bent over to pick up a Lego piece that had slipped from his fingers to the floor. I watched silently as his shoulders slumped forward in an awkward tilt. It was becoming increasingly harder for him lately to force himself upright again. He managed and I felt some relief. He was still finding away to continue this ability. It was however, more apparent, the rapid loss of strength he was experiencing. I could feel some anger once again growing with in me as I silently watched him struggle.

I can not remember a time when the words Duchenne Muscular Dystrophy was not in my life. My entire life, consumed of years spent waiting for a treatment, at the very least that would help control the rate of muscle loss. Now I was faced with scheduling surgery for my youngest son Josiah, because scoliosis was aiding Duchenne in this on going losing battle of muscle loss. Spinal Fusion was a new term recently added into our complicated devastating world. My research of the arduous procedure only served to give me more concern, climaxing my fears. But, without surgery fatality looms even more.

Quietly I slipped out of Josiahs' view. It was even more crucial now that I pulled forward strength and hope. Desperately I worked to refocus my emotions on something more positive. But today Hope was not standing in front of me. Reality her very honest cousin echoed in my ears. Her harshness repeating the unrelenting fears I had grown to know so well. Surgery was vital for my beautiful sons life. That same procedure did not come without very real risks, and pain. It was up to me again to find a way to be the strength we would both need to face another battle with Duchenne. Battling seemed to be the some of my existence lately. I felt sad that I had nothing more to offer than my shaken emotions. I felt hurt consume the very depths of my being. I wanted hope. Most of all though, I longed to be comforted to have something, someone, hold me for once.

Lost in my thoughts, I jotted down a few sentences, hoping that would help me release a little of the uneasiness I was feeling. Rereading my words I paused momentarily recalling some of the responses I had received from a few blogs I had posted about my feelings previously. On occasion it seemed that the message I had hope to convey was lost to some. I was offered advice on health care, given suggestions on home improvement and my favorite, hints that I some how was in fact not addressing other issues that pertained to my own physical abilities. For the first time in a long time I felt totally distant from the world. I could not recall writing any blog that resembled even remotely that I was asking for advice or for that matter complaining. Why was it, I wondered, impossible for some to just share my passion? Reality echoed even more, was what I searched for even available to me? Perhaps not in the way I had hoped or expected, but yes, those that could share in my intensity far out weighed the negative. Together with the inspiration I wanted to be for others and the encouragement I received I knew that I had connected in some way to other people.

Today though I felt fear overwhelm me, captivate me into my sea of emotions. I looked for hope to help me feel not so isolated but she stood blankly looking back at me. In order for me to have her I would have to escape from the despair that slowly was beginning to surround me. I knew reality was here for me today.
She was not asking anything from me, or demand that I put aside my pain. She showed me the truth, not a world of fairy tales. I realized, again, the pain and fear I felt would pass. I would face whatever challenges that lay ahead with dignity and pride. I would most certainly not let my sons down. I would as always be a constant source of strength for them and that was something I would never let Duchenne take from us.

Reality, helped me to see what I am capable of, but hope helped me find the courage to run with it.

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Comment by Katherine Blake on January 19, 2011 at 10:53am

Oh geez - you did it again!  What do you do on those days when hope does escape from you? When grief and pain overwhelm you?  When reality is planted squarely on your doorstep?  I struggle with those days - reaching out to anyone, my friends, here, anywhere - because sometimes I need help on those days.  When my strength is gone (briefly), hope fades (momentarily), and our world/this disease becomes unbearable as death becomes inevitable.  How does anyone cope?  On the bad days, I cope badly.  I am pretty new in all of this, and the emotions can be so raw - but it seems that acceptance doesn't change the intensity or harshness of feelings. 

Thanks for sharing your journey - it helps me on mine.  BTW - your boys are beautiful and I would imagine that they think you are pretty awesome and have made their lives...special.  Losing hope some days doesn't change that.  Reality can't take that away.  Just as you said Duchenne can't take away certain things - just add those to the list! 



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