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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.


  1. The most beautiful RAW post I have EVER read. THANKS FOR SHARING!

  2. I have a white netbook, yes I wrote most of my book on it, in the wee hours of the morning. FYI...did you know pink is the color of love?


    P.S. Your post really hit home, Luke's sister is 10 and I can sooooo see her trying to do exactly as you did with your brothers.