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Saturday, February 27, 2010

I spent sometime this morning writing on my new pink netbook. A recent present and incentive I gave myself for the efforts I have been putting forth towards my writing. Before I could hear any little voices calling for me to come and assist in getting them out of bed, I wrote.

I thought about Christmas when I was ten. About the full stair case descending down into our living room of the old two story house I grew up in. This particular Christmas morning I recalled the stairs. It was very early in the morning before my parents had woken up. My then two brothers and younger sister and I could no longer control the anticipation that had built up in us. Not being able to wait any longer we attempted to maneuver George and Richard ourselves. My younger sister and I had to manage somehow to get my brothers who had Duchenne down the stairs. On their butts we encouraged them to slide. Standing behind them cheering and begging for them to hurry. Step by step on the grey firm burber carpet they slid. Chattering excitedly about the presents Santa had left the night before. Hoping to find things that we had been wishing for all year long. I can not recall what we did get that year for gifts. However, the memories of George and Richard sliding has etched its way permanently inside my mind. It seemed to take forever watching them move from step to step. Pausing occasionally to share the discomfort each impact of landing gave them. At one point to eager to wait any longer I offered to get in front of my brother George and pull him down by his feet. As he hit the first step with is bottom end we both knew this was not going to be the answer I had imagined. I wanted so badly to just be able to pick up George and carry him. At ten my size was only large enough to lift my then four year old sister. Christmas called out to me from under the tree. I peeked over the oak railing at the shinning wrappers and glistening bows. So close and yet still feet away. Held by a promise to my siblings that we share in the joy of Christmas together we diligently worked to get off those stairs.

I do not have memories of running to the beautifully decorated tree to be greeted by presents left from the jolly man in red. I do have wonderful memories of struggling to help my brothers reach our tree to share in the joy of discovering what was inside the wrapped boxes. That particular Christmas I learnt Duchenne was a family disease. It attacked my brothers physically but it also ripped at our hearts and minds. Holding us all prisoners. It not only left my brothers muscles weak and wasting it also left us as a family tormented by heart ache and haunted by loss. Duchenne Muscular Dystrophy stole my brothers lives. It robbed us from physical strength but it did not take the strength we shared as a family. It did not take away the love we had for each other and the moments of joy we shared together from defeating its impending opposition we faced daily.

Wednesday, February 17, 2010

I sat writing today hardly aware of the time and what day it was. My mind I noticed had been slipping lately. Important crucial duties that were required of me I fumbled through. Tears seem to flow more freely even though I deny there existence. Stopping for a brief moment a small voice somewhere from with in me seemed to make logical sense.

As I watched the decline of my Cody's Strength I to was losing parts of me. While this disease was taking from Cody I too struggled to hang on to the me I knew I had to be. Diligently I watch Cody's constant fight to maintain any strength from his dying muscles. Silently and alone reliving the pain my parents must have felt with losing my brothers. It made sense that since my decision to attempt writing a book only opened more unhealed wounds and increased my awareness of the pain I felt and the pain to come. I thought about my many actions to free myself from moments of sadness. Trying to Bring myself to places where I did not feel the sorrow and loss that controlled every part of my being. Hoping to find ways to try to forget for mere seconds how weak this disease left me feeling. The failed attempts to hide the guilt that grew inside of me for feeling a need to take time off. The failed me I am appearing to be to those around me for falling victim to weakened moments. The tormenting haunting I felt for things I would never have.

While I continue this journey with my sons I know many more emotions will grasp at me. I can only hope despair leaves some of me left to survive my biggest battle to come.
I am thankful for the few brave souls who before me shared there heart felt stories. Grateful to those who had the courage to express pain and allow strangers to read intimate details of their sorrow. Those who lived through shame for there less desired actions and faced scrutiny to reach a healing point know that often forgiving ourselves is the hardest part of healing.