Sunday, November 4, 2012

Magic Wands and Squeaky Wheels



Did you know there are angels among us?  That’s right--in disguise, magic wands in hand.  Last year I was honored to meet one of those wand wielding angels by way of her introduction as Lauren’s Seattle-area “Wish Granter” for the Make-A-Wish organization.

If you’re not familiar with Make-A-Wish, let me nutshell it this way: The organization bestows smiles to young people who need it most.  M-A-W is the largest wish granting organization of its kind.  From their website: "Since 1980, the Make-A-Wish Foundation® has given hope, strength and joy to children with life-threatening medical conditions."  Wish Granters operate on behalf of the company as fairy godmothers and godfathers to critically ill children and kids who have fought a life-threatening illness.

And although we’re back home in Hawaii, Lauren’s first Wish Granter continues to stretch that sparkly wand across the waves to spread her special kindness.  Audrey doesn’t need to do this, but she does anyway.  You see, when we moved back to Hawaii, Lauren was transferred from Washington to Hawaii Make-A-Wish.  Not even angels can escape bureaucratic red tape.
   
A few days ago I received a short but sweet “just checking in” email from our Seattle M-A-W Wish Granter.  She asked about Lauren and whether she had picked her wish yet.  She signed it, “With love to you all.”  After reading the email twice, I closed down my computer.  I sat on the back lanai of my mother's house, taking sunshine into my body like oxygen.  When I was noticed an ever increasing tightness in my chest, I focused on my breath, as my acupuncturist has suggested.  I listened to the noisy community of birds who have made the garden oasis on Hoopuni Street a favorite gathering spot.  I tried not to think about Audrey and Make-A-Wish.

Don’t get me wrong, it wasn’t Audrey.  It was me, stewing a simmering pot of pissed off on the back burner of my conscientiousness.  Anger.  Sadness.  Frustration.  I avoided Audrey’s email for three whole hours before I felt like my head would explode from the pressure.  And so, I responded.  Please forgive my weakness, friend, wherever you are reading this.  How can I fully express the feebleness of my heart?  I exposed the wounded, self-pitying, toddler-tantrumming bits of my spirit via email.  What kind of person does that?

My embarrassing response to the lovely, fairy-dust-spreading Audrey:

Miss you, Audrey.  Miss you.

It appears that we've moved to Make-A-Wish wasteland.  Nothing here. No presence at all.  Well, I guess that isn't "technically" true: We get sporatic bulk flyers that tease us with Oahu-only events.  :(

I think it makes Lauren more than a little sad. MY wish, Audrey, is that we could have done her wish there.  You guys took such good and kind care of us.  *sigh

You know, I just had a feeling this would happen. If you don't live on Oahu in Hawaii, you are pretty much invisible.  Doesn't matter that you're a girl who survived cancer or not.  Completely invisible.

Makes me want to cry.

--Piper
Mom to Warrior Princess Lauren


I hit send before I could chicken out, then checked my inbox.  There was already a response.  Impossible!  Actually, it was a follow-up to her original email.  How odd that somewhere in the greater Seattle area, Audrey had been thinking of us at the same time I was thinking of her.  What are the chances? I wondered.  With this question in mind, I felt compelled to send another email, if nothing but an attempt to better share my feelings.

Hi Audrey,

I'm sorry that I'm venting to you. I'm just sad and frustrated.  This Oahu-centric treatment isn't limited to Make-A-Wish.  It's just that I watched Lauren struggle last year.  To say she fought (and continue to fight - she still has spots on her lungs) for her life with that golden wish in mind... There were days and weeks and months that M-A-W was the thing that got her through. When she was too weak from the surgeries or chemo or infections, when she felt her lowest, we'd talk about her wish. Together we would close our eyes and imagine the rides at Disney World. I would describe scenes as vividly as I could, from memory, to enhance our visualizations: swash-bucklers and stashes of treasure in Pirates of the Caribbean, the musical wonder of the "Laughing Place" at Splash Mountain, an exhilarating zip through a universe of stars at Space Mountain.  We spent hours and hours imagining her wish.  It was her safe place to go when everything else fell apart.  And you folks made her feel special, kept that wish on a front burner, visited us, and brought smile to her face.

And I don't think I ever expressed to you how much I appreciated you both.  Please let me do that now.  Thank you!

So, here's one of the flyers we have received from M-A-W Hawaii.  No greeting, no context. And you know what? I don't even tell Lauren that these come.  It's kinda like: "Hey, Lauren!  Look at this really cool thing we can't do!  Aren't those M-A-W families on Oahu lucky?"

Love, light, and aloha from our family to yours,

Piper

Forwarded with my email to Audrey was an electronic flyer I had received about an Oahu-only event.  Truth be told: I felt lighter after sending the email.  The gnawing irritation had dissipated somewhat.  There seemed to be more room in my chest.  Physically, I felt lighter. The Make-A-Wish confessional diet.    

About 20 minutes later, my phone rang.  It was a Hawaii number.  In fact, the caller was a representative from Make-A-Wish Hawaii.  Greetings.  Introductions.  A little bit about the M-A-W program in Hawaii.  Apologies.  You see, Todd had contacted the organization upon our arrival back home.  His call coincided with an annual fundraiser.  Busy times. We’ll get back to you.  I sent an email inquiry in January with Lauren’s information, our address, and a request for a meeting.  We were placed on an email distribution list and started to receive exciting notices for Oahu-only events.  Grumble, grumble, stirring that pot of pissed off Momcologist stew.

Now this: We’re finally setting up a meeting with the Hawaii folks to talk about Lauren’s wish.  Audrey also sent a reply, a short little love note along with suggestions for fun things we might do for the next scan visit in January.  With her magic wand, Audrey includes us as extended members of the Seattle Wish Family:

You are forever in our hearts.  Let’s see if I can make something more tangible happen. 

Hugs to the Warrior Mom ,
A.

It’s not my intention to bash any part of the Make-A-Wish organization. And the “Pity Party, Table for One” emails I sent Audrey are something I wanted to make public, awkward and humiliating as they are.  I’m willing to be an ass because I know Lauren wouldn’t do it for herself.  Please don't think less of me for it.  As her mother and advocate, I’ll take that bullet for her again and again.  I know her dad would do the same.  Something about squeaky wheels.

 

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