Strange what moments stand out vividly...

As I sit down to write this next post - I wonder why it took me so long.  I have been busy but there certainly has been time to script the next segment. Perhaps there is a conflict going on within me - although the story is fresh and steeped and almost pushing itself out on its own.  Every connection I have with people around me reminds me of a past moment; an email from church to reach out to a woman who has lost a child, a call with a new and dear friend about her brother's sudden illness... I think it is part of the story - part of the journey...part of the unpredictability.

Strange what moments stand out vividly in my mind.  As I attempt to reconstruct that time when everything was happening so fast - a new baby girl and news of another on the way - I keep going back to a vivid memory of sitting on the living room floor in our small second floor apartment with Megan in her plastic chair.  The chair was nothing like the ones moms have today - the ones with handles that new mothers carry everywhere... the ones that always prompt me to turn to the person I am with and whisper 'baby in a bucket'. Those have a look of comfort.  Megan's chair was a hard piece of plastic lined with a duck or bunny patterned  pad and supported with a wire frame you wouldn't trust to hold up a picture let alone a baby.  This vivid memory sitting cross-legged on the floor with Megan surrounded by orange, green and tan jars of Gerber's best seems so ordinary.  Maybe that is why it is so vivid - so strong - and where my mind always goes first when reflecting on that time.  It was the beginning and the end of what would be ordinary to me.

I talked earlier of how my life has been a blur of overlapping experiences.  My first introduction to Patrick Charles was in that sonogram room.  Those of you who have saved the pictures from that first peak of your baby know what I mean.  There he was real and living.  And although all around me was the sense that things weren't good or right - all I can remember was focusing as they guided me to the next room, to the next doctor and told me of the next steps.  Here I was - without counsel - and my mind shifted to a pattern that was to become 'familiar' to me.  This pattern would be familiar for not only the ten years of Patrick's amazing journey but it has become the familiar shift that I continue to make whenever I perceive my kids need me - where do I need to go and what do I need to do.


I shared the news with my husband, my mom, the rest of the family but if I were to be honest - Patrick was a personal journey for me.  I hardly remember discussing anything with anyone as I made life decisions for both he and I.  The doctors became my teachers and the lessons were life changing and daily.  Tests were scheduled and the diagnosis was made - a name as strange as the symptoms and defects that accompanied it.  The doctors talked to us about Prune Belly Syndrome and all that we could expect.  I can recall some of that conversation only because I could connect each prognosis with the experience and reality of his condition...  Loose and missing stomach muscles, impaired kidney function resulting with certainty in a transplant and the initial challenge of getting him through another 6 months of gestation.

I can't even imagine what you must be thinking now.  As I write the 'facts' of Patrick's illness I picture a sick and isolated child that would live outside the normalcy of childhood.  What's funny is I never thought that as they were talking with me - and it wasn't his reality. He couldn't have been more part of life and couldn't have been a more obnoxious and wonderful boy.  His physical being defined nothing -rather it was the book filled with the pages that his life would be written within.

I'm bursting with his story and I hope to do it justice.  His story is my story - and although his illness never defined him - I can tell you with certainty that my years with Patrick defined me.