Monday, September 30, 2013


I apologize for not getting all of my Mito week topics done.  Our computer went nuts and trying to type an entire blog post on the ipad isn't ideal.

It's been 5 months for us.  I simply can't believe it.  I can't tell if it feels longer or shorter.  I just can't imagine that this is our life and still sometimes think if we can just make it a little longer then it will all be over.

Just a few days ago another little boy (he was 11, but still to me they are so young) passed away AND another little boy celebrated his 9th birthday in the ICU because no hospice team will allow him to go home for his last time here on earth because he's to complicated.  These things are so painful for me to see and hear.  It all brings memories flooding back.

Lately some of my numbness has been wearing off, atleast going away at random points.  A lot of other  emotions pop up, but strangely not exactly emotions that I would have expected.  I sometimes feel jealous.  Oh so jealous.  I'm not particularly a jealous type in general, but child loss has brought that emotion out in me sometimes.  Another one is guilt.  That's a tough one.  Sometimes my mind flies thru all the what if's.  I agreed to a surgery that I was admittedly uncomfortable with, signed the surgical and anesthesia consents, and watched as they wheeled my baby into the OR.  Then in the end I had to tell the doctors and a room full of people to stop CPR.  If these events don't bring on feelings of guilt then I don't know what does.  Once the guilt starts the questions immediately start.  I have attempted to think thru every scenario that could have happened, every thing I could have maybe done different, trying to remember every second to see if there was 1 thing any of us could have done different.  I find myself wishing sometimes for the numb to return, as it's simply easier.

A few days ago I looked at a few of the pictures from that night, something I haven't done in quite awhile.  I have 7 of them printed in black in white mounted on poster board.  They were made for Eli's visitation and funeral by our photographers.  They are so real, and harsh, and painful and beautiful.  There is the one photo from 4:08am that is my "favorite"; if that's possible from an event as horrible as this,, and I find myself sometimes just staring at it.  It is a picture that the chaplain, our friend, took the moment Dr L stopped listening for sounds of life but the moment before he called time of death.  Bob and I are laying on the bed with Eli on his back on top of us.  Lauren is on bob's side, Dr L is on my side.  We are all staring at Eli, holding hands and touching Eli.  She captured that one last moment.  The last moment.  I knew he was gone at this point, long gone, but something about not having time of death called, made it still seem almost unreal.  That moment caught for eternity is like nothing I can ever describe.  The picture is the most beautiful thing that I have ever seen, that final moment before my world ended.  Sometimes all I can do is stare at it and try to remember who those people in the picture were, because we are surely changed forevermore.

I lost so very much on that day.  I lost my baby, I lost my nurses, my friends, my best friend, my identity, my skills, my time, the doctors and hospital staff that had gotten to be my friends, and so much more.  I lost things I didn't even realize I could ever even lose.  Some of the things lost I fought so hard to get back after Eli's passing, mainly my best friend.  I fought hard with energy I didn't even have to fight with, and in the end had to let go and give up.  I have learned during these last 5 months what matters and what doesn't matter, and who matters.

I've been surprised to see who has stayed by our side and who hasn't.  We have learned that child loss, doesn't just mean losing the child, it means losing the child and so much more.

I would trade everything for one more moment with my baby.

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