Dec 7, 2012

Living in the Land of Missed Opportunities

It's 1:45 AM on surgery day. I'm wide awake, despite taking a triple dose of Klonopin. The anxiety meds are doing just enough to take the edge off... barely.

Claire is sleeping peacefully.  I am reminded of when Quinn was a baby, shortly after we found out about his heart defect. I would sneak into his room at night under the pretense that I heard him fussing (total lie - Quinn never fussed), just so I could pick him up, bring him back to bed, and snuggle him.  I wanted to feel him breathe, feel the warm satin of his skin, smell his baby smell.

My baby is in the queen bed next to me. She's buried under a mound of loveys that must be placed on her in a particular order: bunny first, then purple blankey, the zebra blankey, then piggie under her arm, with various other favorites sprinkled around.  She would not want me next to her, stroking her hair... and she's a huge bed hog anyway. But I want to. I want to hear her breathe, smell her sweet Claire smell, and wish this all away.

Sweet dreams, Princess Pickle
In less than nine hours, she's going to get half (or maybe all) of her head shaved.  A doctor is going to *very* carefully remove the one blood vessel that can save her life, cut open her skull, and bypass the dead spot in her brain. She has one chance. One. If the blood vessel is damaged in the extraction - game over.  If it doesn't attach, if it doesn't work, or if it's damaged in the placement - game over. My nine year old's life hangs on a frail piece of tissue smaller than a shoelace, and in the capable hands of her surgeon.

I can do nothing.  I am so very NOT good at doing nothing.

We have received *such* an out pouring of love, good thoughts, well wishes, and prayers.  It's astounding.  Overwhelming. Total strangers have reached out to us.  I am... I don't know what I am. Grateful? Humbled? Amazed? Embarrassed? It's a combo of all of those. 

Mostly I want to grab my child and run away... hover over her like some feral animal and bare me teeth in a snarl should anyone get near.  Primal, wounded animal... that's me.  I lack any and all of the grace with which some people handle these situations.  

And praying? My relationship with God is... complicated. I am jealous of those whose faith brings them comfort.  Envious that they have something to turn to to ease their struggle.  I have my conversations with God, in my own way.  But I don't ask from him.  It doesn't feel right for me.  It's like asking to borrow something from the friend you haven't been very nice to - you just don't do it.

And yet, while I don't want to ask, I do want to beg: Please. Please don't take my baby. Please don't leave her with a shell of a life either. Please. Let Claire be who she is, and who she was meant to be. Not less.  More.  She is everything that is good and right with the world - the kid who has a smile and a kind word for everyone. A hug.  Who forgives and forgets. Who loves, unconditionally. Who talks and chatters and squeals and giggles.  Who is happiest when she is doing for others. Thinking of others. 

I look at my beautiful, peacefully sleeping daughter and all I feel is fear and regret. Fear that in less than nine hours she will never be what she once was. Fear that she won't become all that she should be.  

And regret for all the times that I was hard on her, tough with her.  All the times that I said no.  All the times I have ignored, been too busy, or was uninterested in what I viewed as trivial.  

She is a fighter - the iron fist in the velvet glove.  She is going to do what she wants, but she's going to do it without hurting anyone's feelings if she can.  She is tough. She doesn't feel sick or act broken, and that's half the battle right there.  She wants to know how quickly she can go back to school; when she can play basketball again; if she can still have a pool party for her birthday. She is looking forward to her life going on... Only even better than before.

Meanwhile, I only look back. To the missed snuggles, the unnecessary no's.

Now she is nine, and comfortable in her bed alone, and all I want to do is sneak in and snuggle. Not to soothe her... to soothe myself.

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