Thursday, January 30, 2014


I saw a link on facebook about SocialBook.  It is a company that takes your facebook statuses, pictures, comments, etc and makes it into a book for you.  I had heard of it before and had wanted to do it for 2013, as this was a year I would like to have bound together forevermore.
I clicked the link and it made up a preview of what  the first bit of my book would look like.  The very first page showed my very first status message that I posted on January 1, 2013.
I read it and my heart dropped.
It is typed below word for word, capital letter for capital letter, punctuation exact.

"My 2013 New Year's goal???  Get my ENTIRE family to January 1, 2014 with as MANY good memories and laughs as possible and as FEW scars and tears and pain as possible.  For some families this may seem like a given, but for our family and so many others I know this is a monumental, sometimes heartbreakingly, insurmountable goal.  There are families hoping for hrs, minutes, days and weeks.  Love to all the fellow warrior families out there, you guys know who you are.  Peace and strength to all of us."

Wow.  The things I wish I had known that moment.  That very moment my heart was breaking for the families barely hanging on.  For the families saying goodbye.  For the families watching a year tick by without their babies.  I had no clue at that moment.  No idea what this status meant to us.  No idea what was to come.  No clue that 5 months later I would be kissing my baby's cold head before his coffin was closed for the final time.

We become so involved with the other families in the community.  We love them.  We cheer for them.  We are willing to fight for them.  We grieve with them.  Our heart breaks for them.  We know all along that it could have been us, but we also know it wasn't.  We blindly go forward. We think it will never be us.  We never expect to see the profile pictures changing to candles with OUR child's name on them.  Never.  Never.  Never.

That being said it crosses our mind.  It crosses our mind late at night as we hear the sat monitor beeping, deep in the belly of the hospital as we see the look on the doctors face, in the PICU in the middle of the night as more and more meds get brought in, when we hear "crappy lung sounds".  It flashes thru our minds.

Then we see their progress.  Their improvement.  We see the FIGHT in our HERO's eyes!  We see the shine, the glimmer in their eyes.  We see the smile that could melt every drop of ice in the world.  They are invincible!  They are hero's.  Flesh and blood, real life, no doubt about it HERO's!  and DAMNIT our HERO will never die.  It won't happen.

We tap down the fear, we tap down the pain, we tap down the terror.  But we can't get rid of it.  It sits there.

What was on my mind that day, on January 1, 2013 when I typed that status update on facebook?  I can't tell you for sure, but I can tell you it was pain, and fear, and pleading.  Oh the pleading!  Begging for it to NEVER be MY HERO!

Yet 5 months later it was MY HERO!  God how I miss him.  It was insurmountable.  We lost the battle and sadly so did many other families.
Fuck Mito.
2013 was a dark year for so many of us, the lights that went out that year have left a darkness on earth, a void.  The light that our HERO's shown around the world, is deeply deeply missed.

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