A Brave Little Soul Lost

This past week, the world lost an amazing, beautiful, very special little boy.  His parents fought for him, prayed for him and waited for him for so very long.  He came into this world fighting and for three months, his parents lived the life few of us have known - trapped within the walls of a hospital.  Eloquent and adequate words escape me right now.  I simply have had none to share since I learned of his passing.  My heart hurts.  I saw him just two weeks ago, held him, was amazed by his strength and how wonderful he was doing.  There had been talk of his homecoming, there were plans being made.  He had one more hurdle to clear - a permanent shunt placement to address his hydrocephalus.  Up until last week, he had a temporary shunt which had to be tapped every few days.  For anyone who has ever had to endure or witness their child undergo shunt taps, it's an unpleasant, to say the least, experience.  I assured his Mom that this surgery would be routine, that what happened to Marissa last year following one of her shunt revisions most certainly wouldn't happen to her son.  I assured her that this was a straight-forward procedure, that he was strong and that he of course had the world's best surgeon in the world.

Surgery is NEVER without risk - I know that, we ALL know that.  Little bodies are fragile and you just never know how they are going react.  Still, we go into each and every procedure hoping that all will go as planned.  For sweet baby S, things did not.  He suffered a hemorrhage and unable to be stabilized, he passed away in the arms of his family. 

Not a day has gone by since Wednesday, February 3, 2010, that I have not relived Marissa's third hemorrhage.  I know every single event of that day.  I can close my eyes and see it playing out in slow motion, I can see what people were wearing, I can smell the smells, hear the sounds, everything.  Call it a solid memory, PTSD, whatever you want, but I don't think it will ever go away.  When a person walks that line or their child walks that line - the line between life and death - you don't get to forget.  The thing is, we got our daughter back - we got to take her home.  She has had 35 surgeries, THREE brain hemorrhages, yet she has survived and we get to go on with our lives as a family.  For Baby S's family, they were robbed of their chance to spend Thanksgiving and Christmas together, to watch their son grow.  They will bury their baby and that is just plain wrong.  I know they will never get that day out of their minds and I know there is absolutely nothing anyone can do or say right now to ease their pain.

I have survivor's guilt.  I have no words to provide to them.  How do you wrap up what you want to say to someone in a sympathy card?  How can you say anything to someone who has just lost the most precious thing on Earth?  How do we just forge ahead knowing that they have been left behind?