Thursday, January 19, 2017

Every Trace of Sadness

I have been lucky enough in my life, to experience things that absolutely took my breath away in awe and wonder.
 
I remember seeing the Eiffel Tower as a 15 year old in Paris.  The scale of that structure is staggering.

I remember when we were in New York at the Museum of Modern Art.  I turned a corner and there, hanging on a wall of its own, an original Van Gogh.  I was not expecting to it there.  Van Gogh is my absolute favorite artist.  I stood 6" from that painting and it took my breath away.  I couldn't move.  I didn't want to move.  Even now, I find myself craving that moment again.

Yesterday, at Shelbie's clinics, I found myself in moments of awe and grandeur.  Moments that stole more than my breath away.

We saw our Immunologist first.  He was taken aback at how awful Shelbie looked.  Even in the hospital 3 months ago she looked nothing as sick as she did on Tuesday.  As we sat discussing the past two weeks, Shelbie had an event.  The same kind she's been having every day for the past few weeks.  She was trying to say something, a sentence about her situation but the words came out in all the wrong places so the sentence was hardly a sentence, more a jumbled mess of words. She kept trying but couldn't get the complete sentence out.  With wide eyes, and tears streaming down her face, she looked at me and said, "Help."

I looked back at those beautiful big eyes with my own, filled with tears.  Our doctor was so gentle.  He looked at her and said, "It's okay.  Just relax.  It's okay."  I knew what he was thinking.  He began wrapping up the visit, announcing that we needed to increase her plasma yet again and rushed us off to see the Neuroimmunologist.

There are only two doctors in this country who practice Neuroimmunology.  How blessed that we were able to meet with her.  We started with the Fellow who began getting a history on Shelbie.  At first we were all over the board, jumping across 2 1/2 decades of problems.  I finally decided we needed to start at day one.  So, I did.  I started with the night that I found Shelbie unresponsive at two weeks old.  That's usually all anyone ever hears of that story, just simply stated, "Shelbie stopped breathing when she was two weeks old.  But the doctor wanted more detail.  Next thing I know, I am in that moment and I remember the night air, the birds outside the window, the setting sun.  I remember the apartment was stuffy and hot.  I remember hearing the clock in the kitchen ticking.  I remember seeing Shelbie as grey as the skin of a seal against the white lace on the bassinet.   I recounted the ICU that night and the following night as I wondered if I would leave with my baby.

Then she was two and I was 20 minutes out of town at a quilting party and summer was winding down and in 3 more weeks, Spencer would be born.  And the wind was warm and little kids ran free from one end of the dusty yard to the next of the home we were visiting.  She ran to my arms for a snack and I picked her up and she was laughing, then, without notice, fell back, out of my arms.  Lifeless and grey and everything stopped including her heart.  I screamed for help.  I laid her on the floor and started CPR, and between breaths I shared with her, I cried and screamed for her to come back to me.  And we were whisked off to a truck and someone else did CPR as they drove us to meet the ambulance, lost on the country roads and I will never forget what the world looks like through the back windows of an ambulance, with a belly contracting and my baby girl struggling to breathe.

And for nearly a full 60 minutes, there was no shortage of stories.  I felt exhausted as the Fellow left to brief the doctor before they both came back to our room.  And beside me, Shelbie sat as lifeless as I had known her to be at times. "I've never heard you tell that story like you just did."  and her eyes filled up with tears and as if we were standing on the edge of one of the World's greatest wonders, we stood on the edge of our little wonder of a world and simmered in a post trauma serving of sadness I had never felt before.

It took my breath away.  I was in shock as to all the things I have witnessed and done to keep this girl alive.  To keep them all alive. Rarely, have I told her story in one continuous thread.  I have no words to describe what I felt...Overwhelmed? More than that.  Way more than that.

And then, we talked about what is going on with Shelbie and it was a difficult 90 minutes. The perspective of feeling so deeply, our traumatic and hard past, to intellectually knowing what is coming for her and I felt every trace of sadness I have ever felt and ever will feel and my insides quivered and they haven't stopped.


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