Lost in Loss

I must admit, I was feeling proud and full of holiday spirit when I came home from my son’s wrestling match.  I was so proud of his efforts and his determination.  I sat down with a cup of coffee and a smile.  I beamed with pride as I thought about how my typically stoic and serious son confidentally taught two Rockettes the backpack dance.

Feeling truly proud of my son made the news I read on the dada2 support group even harder to read.  I cannot honestly say what made me click on it at that moment.  Needless to say, my mood shfted immediately and the tears still stream as I think through what I read in disbelief.

With a very heavy heart, I read that one of the young men who suffered from dada2 was cripled in pain to the point where his body required a bone marrow transplant.

As we prepared and planned for our second annual gala, this young man prepared for the fight of his life.  His November transplant felt hopeful.  However, his body did not make it through the risks and complications of such a procedure.  He passed away less than a month after his transplant and less then a week before Christmas.

The warmth of December and hope I have felt for an entire month were shattered when I read the news his family shared along with their frustration, confusion, and pain.

For this family and all those who suffer from PAN and dada2, this day is the one we cannot sit around and watch quietly.  This day is the reason we write, we raise awareness, and we fundraise as fiercly as we can.  This young man’s battle will not be forgotten nor will his family’s grief.

This one is for you Trevor.  May your family find peace in the New Year as I am sure they feel void of all emotion as this year comes to a close.

Tonight, Kelsey cried herself to sleep in fear of Mr. Needle and her Wendesday Woe.  As I consoled my child and prayed for answers, I also felt a mixture of gratitude and anger for all that I know and all that I cannot understand.