Dec 17, 2012

Badge of Courage

When Claire was first diagnosed, the one thing that was guaranteed to make me cry (in my secret moments of weakness) was the thought of having to shave her head for surgery.  Not that Claire has the most glorious locks known to womankind but -- it's my baby's hair and the thought of seeing her little bald head in the middle of winter was upsetting.

It was one of the first things we discussed when we talked about her diagnosis and what everything meant.  I figured the details of the brain surgery would be difficult for her to comprehend but losing her hair? This I knew would be something she'd understand.

To soften the blow, I told my little fashionista that we'd be buying lots of cool hats. "But school doesn't allow hats, Mama."

"Oh honey. They will make an exception for you," thinking they'd damn sure better or there'd be some Mama Bear hell to pay.

Claire's best friend Gianna's dad is Claire's hair stylist. He also is a wig designer.  He promised to make Claire a super fabulous pink and purple sparkly wig.

Ultimately, we found out just prior to surgery that Dr. Skarli didn't intend to shave her whole head, just part of it.  I was relieved.  When we told Claire, I expected her to be relieved as well. Instead she was... vaguely disappointed.

I couldn't figure it out. I became concerned she didn't understand. Since Claire's diagnosis, I'm overly concerned (completely without cause) about her cognitive abilities.  She still acts and thinks like the same old Claire -- which is to say occasionally flighty and often airheaded.  Instead of simply remembering she is, after all, my daughter, I become worried there's some underlying brain issue that is causing her brain fart.

It's not.

She was disappointed because she was really looking forward to that sparkly pink and purple wig.  She wanted those hats. This is a child who enjoys the idea of accessories.


When they brought us into recovery to see her, after she spoke and identified who we were, along with a few math facts and vocabulary translations just to assure us that her brain was functioning fine, I checked out her hair.  It... wasn't bad.  Half shaved on the one side.  A bit punk-rocker.  Claire could work with that look.

They saved her hair for us. More precious than her first haircut.

The day after surgery, Princess Pickle demanded a mirror.  She wanted to check things out.  She turned this way and that, examining all angles.  I watched closely, expecting some kind of pre-tween angst. Maybe some tears.


Instead she kind of smirked. Said, "Hunh." And that was that.

We talked about balancing it out and shaving the other side.  That met with a determined "No!"  Mr. Scott (still one of her most favorite people) suggested a look similar to the lead singer of the 80s band Bow Wow Wow. "Nope."  She wanted to leave well enough alone.

The day after we came home from the hospital, I took Claire on a mini-shopping excursion.  We'd been told that any wig was a bad idea for her (holds in heat, traps bacteria against her huge incision) but hats were okay.  So hat shopping we went.  We picked out $87 worth of hats -- something our bank account could ill-afford but, honestly? The child was home mere days after a six hour long brain surgery -- I'll buy her the $50 sparkly silver sequin bedazzled beret.

For Claire's first truly public excursion with her peers, I was nervous.  I got her all dressed up, fixed her hair (we still have to braid it away from her incision site) and put her matching new purple hat on her.  Off we went to the rehearsal for her school's Christmas program.

When her classmates realized she was there, there were quite a few exclamations of "Claire!" and a smattering of applause. I admit, I got a little choked up.  I looked down at Claire as her friends rushed to hug her.  She was grinning at everyone and promptly whipped off her hat.

I wanted to grab it and shove it back on her head. I expected gasps. I expected people to draw back. I expected Claire to get her feelings hurt. But I looked down and she was still grinning ear to ear.  No one gasped. No one drew back.  The boys all looked like they couldn't get close enough -- peering at her frankenscar with absolute fascination.

We've been out in public quite a few times now, including two community theater performances that Claire did without any head covering on, in front of full audiences.  She met with audience members before and after the shows.  But it didn't dawn on me until tonight when our landlord stopped over to fix our broken water heater, and we were discussing Claire's medical ordeal.  Claire had been in the living room, we were in the kitchen. All of a sudden she comes prancing -- literally prancing -- into the kitchen, strikes a pose, and shows off both incision and hairdo.  It did not dawn on me until that moment,

She's proud of this.  She's not embarrassed or ashamed or feeling the need to hide things under a fancy hat. She's comfortable enough in her own skin (and hair) to show it off to the world.

Here's my scar. I'm not embarrassed.  I'm a survivor.

Yes you are, baby. Yes you are.

Dec 12, 2012

Survivor Guilt

This post has been rolling around in my head for a few days.  Five days to be exact.  I've struggled with how to word it, how to phrase things.  And then I just decided to write it how I've written every other post -- just blurt it all out and let the chips fall where they may.

On Saturday, December 8th, exactly 24 hours after Claire was wheeled into recovery from a six-hour long brain surgery, she was taking a walk around the PICU.  Walking. Unassisted. Being told to slow down and not run.  She was wearing her stylish purple IV gown complete with sparkly cape, matching furry slippers, and ordering family friend Mr. Scott to come hold her hand (she's a bit of a flirt and he's one of her favorite people.)

Since the day we found out something was "abnormal" with Claire's MRI, I think I have run every worst-case scenario through my head. Her having a stroke and being left a vegetable.  Finding her unresponsive in her bed. Wheelchairs. Atrophied muscles. I've thought of them all.

And death. I've spent some time planning what I would do if Claire died.  I was scolded for this. Told I was tempting the fates.  But, I am a planner by nature -- it calms me -- knowing what to do.  And since so much of Claire's diagnosis and health crisis was out of my control, this was something I could DO.  Something I could figure out. 

Added to this was the thought of planning Claire's funeral.  This is where I fell apart.  Nine months ago, my friends Thomas and Erin lost their beloved son Willem due to complications from HLH.  His father, whom I did not actually meet in person until the day of Willem's funeral, chronicled Willem's pain and suffering in a blog.  I recommend every parent read it.  Because when your child is annoying the hell out of you and you are tired and weary and worried about things that only feel important -- you can take a moment and realize not one of those things matter. The only thing that matters is your family.  Spend some time thinking about what you would do if it all went away.

Erin was the epitome of grace and poise. She was, quite frankly, amazing.  I still, to this day, feel like an absolute moron for what I said to her when I went to her to hug her. "How you doing?"  It wasn't the words so much as the inflection.  It didn't come out like the concerned inquiry I meant it to be. It came out a bit like Joey Tribiani on Friends... "How YOU doin'?"  I could have bit my tongue off.  And Erin... Erin smiled at me.  A grin almost.  And said, "I'm shitty.  People keep asking me that and I keep telling them, I'm shitty."  And we laughed and I sobbed and said, "Of course you are. You are shitty. Because this fucking sucks."  And she hugged me and I felt better. And then I felt awful because here we stood at her first-born child's funeral and she was making ME feel better.  

Thomas spoke at Willem's funeral.  He spoke with passion. He spoke with grace.  He spoke with love and meaning words I would not be able to get out of my throat if put in his circumstances.  It was gut wrenching and heartbreaking and absolutely the worst fucking thing I've ever witnessed.  And yet, it was also a beautiful and amazing tribute to a beautiful and amazing boy.  I felt then, and feel now, that my life is less for not having met this child.

I remember being in awe of Thomas as he spoke.  Knowing deep down in my soul there was no way on earth I would EVER be able to do what he did. And arrogantly believing I would never have to.

So, as I lay awake in bed counting down the days until a surgeon would go into Claire's brain in an attempt to fix it, I would think about a funeral that I could not do.  I had been shown by an amazing family the right way to bury your child -- who the fuck wants to be shown that?? -- and I knew, unquestionably, that I lacked the strength, the courage, to do the same for my child.  I would fail her.  She deserves so much better than what I am capable of doing.

As we walked around the PICU, I looked into some of the rooms. Most of them were occupied by tiny little babies full of tiny little wires plugged into tiny little machines. What seemed like hundreds of them.

I've spent a lot of time in an intensive care unit.  First when Quinn was a baby, then when my mother was dying.  You get to know the routine, the feel of the ward.  The vibe.  And as we walked past a room three doors down from Claire's, I looked in and I knew.  I could tell by the way the occupants were standing around the bed.  I could tell by the looks on the nurses' faces.  I could tell... these people were saying goodbye to the tiny little bump under the green blanket in the crib.

My heart ached. I felt a sob well up.  And I felt... guilty.  Terribly, horribly, inexplicably guilty.

Why?  Why does that family have to say goodbye and I am watching my daughter practically skip down the ward?

Why do I get to keep my daughter, while Willem's parents struggle to find purpose and meaning and carry on after losing him?

I've pretty much never done a thing right in my entire life. I have a complete lack of faith. I have anger management issues.  I'm not a very nice person. 

So now I lay awake nights trying to figure out what this all means. What am I supposed to do now? Am I supposed to suddenly get my shit straight? Because, frankly, I don't even have a clue how to do that.

So I will do what I always do -- soldier on with brute force and ignorance and hope for the best.  But, at the same time, I will remember the grace and courage of a father saying goodbye to his son. I will remember the mother who hugged me and made me feel better in her worst moment.  I will remember the tiny little life fading in that room.  I will be grateful. And I will try -- try to do better.

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.