Defining moment

Wednesday, January 23rd 2009 MPS entered our world and today Wednesday, January 23rd 2013 marks 4 years since Jack’s diagnosis.
As I have mentioned in past “anniversary” posts one never forgets that defining moment. That very second you life goes from clarity to upside down, and blurry. I still recall the room, the people present, what I was wearing, the texture of the arms of the chair, and many other details as my body went into shock. “Your son Jack has a very rare disease called mucopolysaccridosis or Hunter Syndrome.” “…there is no cure.” And poof everything changes. As human beings our immediate response is deep sadness, fear, and always jumping down the worst conclusion versus thinking of the best outcome. I’m not sure why, but I’m confident to say if you interviewed any parent who has experienced a diagnosis of a child not one would say there initial thinking was a positive outcome. Why?

Looking back over the 4 years makes me exhausted but mostly it makes me smile. Life went on after that dreadful day, new hopes and new dreams were established, small joys replaced big joys, life adaptations & modifications, changes of this and that. All are our present norm, consistently filled with optimistic outcomes. Hope for a future. Hope for a cure.
On this anniversary day I now see a happy, healthy family of four in our future, but there is a big battle to be won first!
Put up your dukes, lets get down to it!


7 thoughts on “Defining moment

  1. Your continued strength and drive bring tears to my eyes. Jamie you’re a beautiful person inside and out and I can only wish for a break through in medicine for this rare disease. you and all parents like you have such heavy loads in life, and you don’t ever miss a beat. Never stop believing.

  2. Love your positive attitude! It’s mainly the way I like to go too though often a challenge! Hugs all the way x Laura and Will

  3. Jamie your clarity of vision has never sounded stronger. It is such an honor to share in your journey…to share our journeys.

    Love love love, Mel

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