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!