Our
Journey:
Avalon's Army of Angels
July 19, 2008
How to be a nightingale
Check out those freckles!
Subject:  July 19, 2008

Do not adjust your screens, you are not hallucinating.  Yes, that is an aging, over-sized,  
Supermom wearing a bizzaro bird get-up.  And yes, these pictures have validity to Avalon's
story.  

OK, here's the deal.  As a pediatric cancer family, we had to give up the notion of a "normal"
life a looooong time ago.  I am fully aware that "normal" is a relative term, and that we all adapt
to the "normal" parameters of our own existence.  No need to go Nitsche on me,  I get it.  I'm
simply saying, we had to abandon the concept of the life we had imagined for our children, and
forge ahead on the path we were unceremoniously thrown down.  

Sadly, the medical-family-path often comes with gigantic rocks that temporarily derail your
progress.  The rocks can be surmountable if you change your climbing gear, or they can be
impassable, causing you to change direction altogether.  Either way, the healthy siblings of the
medical child are often dragged along the new direction, fully without their approval.  It can
make for a bit of a tumultuous existence at times.  

Enter two local charities that help families of medical children.  Adventures for Wish Kids
organizes events for families of children with life-threatening illnesses.  Kids N Kamp,
specializes in activities for families battling pediatric cancer.  KNK provides Mom's Night Out,
Dad's Night Out, Family Camp weekend, a Christmas Party, a Mom's Retreat, a Mom's Quilting
weekend, a trip to the Columbus Zoo, and random tickets to events around Columbus.  

While it took me years to fully appreciate the mom-bonding part, I'm glad they stuck with me
until I "got it".  There is something very special about spending time with other women who
understand your irrational, and often fully rational, fears and phobias.  Its also a rare joy to be
able to make outrageous comments to an audience that will laugh with you, rather than run
screaming to call social services because they think you're an insensitive jerk-hole.  Only baldy
moms really appreciate a good baldy joke...

Anyway, in our family's firm belief of pay-it-forward, Nick and I had agreed to help out with
KNK's largest annual fundraiser, Mystery Night.  I agreed to be a "snitch" (details in a minute)
dressed as a nightingale, and Nick agreed to be a snitch dressed as a rat.  We signed up for
this months ago, after enlisting childcare from the great and glorious (as my children describe
her) Aunt Nettie.  

The only snag was that KNK asked me if I could make my own nightingale costume.  They had
purchased a full-body rat, but wondered if I would be willing to pitch in and bird-i-fy myself.  
Sure, sure, no problem.  I'm an old costumer.  

OK, reality check.  BIG problem.  I may sew circles around the common man.  I may actually
have a creative thought or two that periodically permeates the great abyss that is my cranium.  
I may even have the experience of a professional costumer.  What I completely, utterly, entirely,
overwhelmingly lack...is
discipline.  In all fairness, I'm also a bit short on time.  But mostly....I'm
plumb out of discipline.  "I, Alicia, am a procrastinator.  I've never been clean of my habit for
more than a day.  I keep putting off my sobriety..."  "Hello, Alicia..."  You get the idea.

So, as I enlightened my better half and my offspring to the commitment I had made, I should
have been better prepared for the mocking that ensued.  Those rotten, snickering little
backstabbers placed bets on how long I would wait to make the costume.  Eventually, they
decided all bets were off, I'd do my usual wait until the day of the event to make it.  Forsooth,
said I!  I was going to prove them wrong and be done weeks ahead of time!  Ha ha!  My
boasting merely made them guffaw.  After one or two of them required oxygen, I quietly
retreated - determined to prove them wrong and extract my revenge with my superiority....

So, the morning of the event, I sat down on the floor of Avalon's hospital room and began to cut
out my bird costume......  (quit laughing...)  I had, indeed, managed to purchase the fabric a
day before her surgery (4 weeks after I agreed to be a bird)  (Hey!  I said...quit laughing!).  But,
I had not managed to do any actual work on the idea.  Frankly, I didn't even have an idea on
which to act with any actual labor.  No...I just had some fabric.  And a couple of hunks of
foam...and a deadline.... ( what part of
quit laughing did you miss?)

So, the morning of the event, (work with me here) I woke up at about 6:30 and decided I might
just want to cut a piece or two of fabric.  Much to the delight of Avalon's medical staff, I spent
the better part of the day in some twisted, contortionists-the-world-over-would-be-proud
position, cutting out random parts of a bird.  I'm sure my family will be pleased to know that
these lovely women had a glorious time substituting themselves in the positions of
mommy-mockers.   They grinned, pestered, and did a simply marvelous job of pointing out the
painfully obvious - I have not even remotely addressed my procrastination problem.  And, may I
add, not a single one of them would agree with my position that
admitting I have a problem is
half the battle.  They fell squarely into  the Alicia's-full-of-crap camp.  Turncoats.

I did have one shining champion, though!  Melody, Avalon's day nurse, makes costumes for
her local church.  That wonderful, thoughtful, vaulted-straight-up-to-most-favored-nurse-status
woman actually helped me cut feathers!  Melody is as sainted as my Coffee Fairy.  (OK, she's
close to being as sainted....)  She also kept the mocking to  a minimum.  Unlike the
rat-fart-good-thing-I-love-her Sylvia, who continuously told me I resembled a drunken
Pocahontas.  Her, I'll hunt down later.  My outfit may just confer some bow and arrow expertise
on me....

Anyhoo...back to the "tail".  (ha ha...I slay me!)  As Avalon frittered the day away with sleeping,
picking at food, zombie-staring at the TV, and generally being a bit of a blob - I spent the day
bent into unnatural positions trying to valiantly pull my keester out of the cooker and come up
with a reasonable costume.  I also spent the day cheerleading myself, into actually going
through with the plan to leave.  I have never left Avalon at the hospital with anyone other than
Nick.  And believe me, I left her with him grudgingly.  I knew my parents and my sister were fully
capable of working with the nurses to ensure Avalon was receiving perfect care.  The issue
certainly wasn't them - it was 100%
me.  I have very little control in this whole awful world we're
in, and giving up even a tiny parsec of it was painful.  However, I do believe in keeping
commitments and "putting your money where your mouth is", so to speak.  I can't write a check
for $1.50, so I can only pay it forward with my time.  I had to stick to my promise.  

When Grammo and Pappo arrived with Anam for wave one of the "relief crew", Avalon couldn't
have been happier.  Frankly, she couldn't get rid of me fast enough.  She honestly didn't give
two hoots (ha ha!  Again, I kill me!) whether I was in the room or not.  Fair enough, she'd been
staring at my ugly, boring, mommy-mug for days.  It didn't take me too long to finish up a few
minor details:  my beak, my feet, 20+ feathers, my make-up...nothing big.....  (you're laughing
again!)  And then I was off to the fundraiser.  Oh, and lest you think the princess was bored -
her Papa Joe was coming in as I was going out.  She had no shortage of amusement.  

The fundraiser, itself, was a fun adventure.  The founder of Kids N Kamp writes a murder
mystery.  People pay to attend the event.  They compete in teams.  The teams all start
together at a central location.  They each receive different clues in the beginning, so they all
branch out in different directions.  Each clue leads them to a new location somewhere in the
city.  (we're talking 15-30 minutes apart!)  At each location, there is an actor, helpers and
sometimes, a snitch.  When the team arrives, they listen to the actor's speech.  Each actor is a
part of the mystery story.  When the speech is done, the team has exactly two minutes to
question the actor.  At the end, they get their clue for the next location.  If they wish, they can
pay $5 per team to the snitch - to get an extra clue, that may help them solve the mystery.  The
teams have roughly 4 hours to gather clues.

At the end of the allotted time, the teams gather back at the central location.  (this time it was a
Hilton ballroom)  The actors come back also, and each receives a new script.  The actors then
play out the rest of the story in front of the audience of detectives.  Teams compete to solve
the mystery, compete for best time, etc.  Once back at the ballroom they have dinner and a
silent auction - all to raise money for Kids N Kamp.  Each actor only knows their part.  Each
snitch is only allowed to say the one sentence they are given.  No one, save the woman that
writes the story, has any idea about the entire story!  Its not possible to pump anyone for info -
they don't have it!

The entire thing is a riot.  The people take it incredibly serious.  They write down descriptions
of your costume, take notes on the actor's speech, and for me - they wrote down every single
word I said.   Several of the teams rent limos, so they let someone else do the driving, and they
spend time loosening their thinking caps with a bit of the bubbly.  In all, it seems like an
enormous amount of fun.  

Our group was positioned in a tea house in Powell.  My helper and I sat in a fairy room, where
little girls have tea parties.  Not exactly an "Animal House" atmosphere.  Nick was located in a
bar.  Dressed as a rat, he  spent 4 hours in a bar.  There is a fair amount of down time at each
location.  It can take quite awhile between teams.  From what I understand, my dear hubby
spent his idle time becoming quite the bar mascot.  People paid to have the rat come jam with
them, or to act goofy with the band.  By the end of the night, the Bar Rat, had made more
money being a fruitloop, than he had as a snitch.  He has tennis elbow from patting himself on
the back...

As for the "rest of the story", that's not quite as fun.  The truth is, it took every ounce of
self-control I had (and a great deal of encouragement from Nick) to not sprint back to the car
the second I walked into the ballroom.  I don't think the feeling ever went away, it just dulled a
bit over the course of the night.  When I was free - I sped the entire way back to the hospital.  I
had a tight chest, and knotted stomach all night.  I hated every second I was gone from my
baby.

Far worse than even the prolonged panic attack - was how I felt about everyone else that night.
 The beauty of belonging to a group of parents with similar diagnoses, is that you can share
your experiences.  There is often a great deal of comfort in comparing notes, sharing hospital
stories.  Not so, on Saturday night.  As people found out Avalon was in the hospital, and why -
they all felt the need to share their experiences.  It took everything I had not have full-out
smack-downs with nearly every one of them!

I love these people.  I appreciate these people.  I've cried with and cheered for lots of these
people.  I know them to be kind, dedicated, caring humans.  But truthfully, I absolutely hated
the sounds of their collective voices that night.  When someone would talk about their
daughter's one surgery, and how awful it was on her - I wanted to scream, "
One?!!  Do you
understand this is her second
brain  surgery in six weeks, and she has to do it all over again
in a
week?!!"    Or, someone would talk about their child's surgery during chemo, and how
tough it was.  Then, I wanted to shriek, "
Really?!  Because Avalon had 5 surgeries while on
chemo.  She took chemo for 26 months!!  If I remember, your protocol was 10 months?!  Oh,
and did I mention the 3 brain surgeries since going off treatment, or the two more she's facing?
 And how about the wheelchair?!  Want to talk about
that?!!"  

Of course I never said anything of the sort.  And more to the point, none of these lovely people
deserved those rantings.  They weren't sharing to cause me more pain, they were  being
human.  Those realizations only served to make me feel worse.  How dare I think such
horrendous things about people I like.  How dare I be so judgemental.  I know each of them has
born their own crosses in their past.  But knowing that, and caring about it in that moment - are
two entirely different things.  

As I drove back to the hospital that night, I realized I really didn't have a handle on all of this.  
I'm angry, I'm frustrated.  I'm terribly, horribly petrified to the core of my being.  I've realized this
week that we have no guarantee.  To keep Avalon from going blind, we're cutting huge holes
out of her skull.  This isn't a garden variety little kid issue.  We're fighting death, and I have to
admit that.  I have to face my daughter's mortality - and its not a place I like to be.  I'm scared,
and I can't figure out what to be.  Angry with the world, angry with myself for being angry with
the world, or just plain heartsick.  

My sister was kind enough to listen to my self-centered ravings when I got back from Mystery
Night.  She was also loving enough to give me permission to be miserable.  That may sound
completely insane,  but I needed to hear that its OK to be in a bad space.  I needed to hear
that I don't mean the things I was thinking, I was just working through my own stuff.  I had
apologized to this wonderful woman that was the actress at my location.  She was a pure gem,
and had asked me a very insightful, thoughtful question.  While I did answer her, I realized I
sounded like a robot.  I said the words, but I was dead inside.   At the time, I apologized and
asked for forgiveness for being less than friendly.  My sister assured me that its OK to be
detached at the moment - I'm not bad, or thoughtless, or rude, I'm just human.  

Why share all of this muck too?  Because its a great gift to help someone realize their own
shortcomings.  Its a wonderful thing to help someone admit they are terrified, or angry, or
lonely...because in helping them see its OK to be human - you help them find the path out.

And I only had to become a bird, to learn its OK to be human....
I'm the "fluffy" one with the beak.
This was the group at the tea house.  The
ladies in blue signed in the teams,
collected snitch money, and acted as
crowd control to keep teams from
cheating.  The lovely actress has recently
signed up to be a volunteer on the J-5
Hemetology/Oncology unit at our
Children's Hospital.  She is doing so,
because after losing her mother to
cancer last year, she wanted to do
something to give back.  
How's this for a shiner?  This is also an example of grinning through the pain.  
She was miserable, but will always make the effort for a picture.  And check
out the sparkly princess pajamas!  Those would be the Lisa/Christina gift
jammies.  Avalon loves them - Belle is in the middle!  
(Avalon's middle name is Mirabelle - she's named after Belle)