My BRAVE Story: One step at a time

One step at a time... When I hold his little hand in mine it reminds me of the day when he held my hand and took those precious little steps one at a time, he discovered the joy of walking, the joy of independence totally unaware of what lies ahead. Today Duchenne is like an engraved finger print in life that ceases to erase, reminding us day in and day out of its presence, the challenges it throws in our path, the pain it causes and the emotional drain that it brings. There are good days and bad days, sad days and happy days and there are days when we are devoid of hope. In every corner of our path there seems to be a challenge waiting to catch up. Gone are the days when we use to go to the park to run around the squirrels and chase butterflies around till we get tired and drop by the nearby ice-cream store to bite into the melting cold. There was no turning back, no saying I can't do it, no saying I am tired, no saying my leg aches, it was only... can we do it again? Can I play for a little longer? Can we please go back to the park again and play please...please...please...

All that changed when Duchenne decided it's time to show up and knock our door letting us know of its presence. It was a very difficult moment to accept its presence and it still is difficult. It's heart-breaking to realize that we can do nothing to make it go away, we cannot run away from it not hide, no matter what we do it will get to us and no matter how hard we try it insists on staying on and on and on... It feels like we are moving backwards one step at a time not realizing the path it is leading us on. It's like walking in pitch dark on a snowy mountain with a path filled with crevasses, unaware of how deep a fall could take us down. Amidst all this hopelessness are little joys in life that we tend to embrace in our journey called life. Along the way we played a little butterfly that knew no limits to its wings, an angel who believe she could grant all wishes unconditionally, Shrek who never gave up, an alien who comes in peace and a plant that only wants natural manure to survive. We did it all with a smile ignoring the aches and pains that limit our movements.  And today we stand on a road that is less traveled. On our way we met people who shared similar pain, who gave us hope and inspiration to move on in difficult times but there were others who put us down.

But today we look at the horizon with hope that someday soon the sun will rise on us and guide us through this treacherous road. It is hope that I see in his eyes every moment in life that keeps me going, it is his never give up attitude that is a driving force for me to move on. Today I am thankful that I have my son by me who gives me hope, with his tender, kind and caring smile and I hope to walk this journey called life with him holding hand in hand one step at a time.

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