Avalon's Army of Angels
February 9, 2009
Magic Mountain - KNK - friends
Tonight was the Kids N Kamp Valentine's party at
magic Mountain.  We started the evening by
going straight to dinner.  The kids were all
starving, so they'd been worried our allotted
dinner time wouldn't be until later in the night.  
Thankfully, KNK did things a little different this
year, and we were free to eat whenever we
wanted.  As with previous years, dinner was
salad, pizza, subs (although I don't know that I've
ever actually
had a piece of the sub - the trays
empty instantly and are rarely filled), and
gourmet cookies for dessert.  Its all very
kid-friendly, and easy for them to choke down as
quickly as humanly possible.  After all, as much
as they love pizza, it really can't compare to
climbing tubes or video games.

Ambrosia learned her lesson from last year, she
opted to rest her tummy and go play some video
games, instead of immediately exerting herself in
the tubes.  Every other year, she's given herself
a horrible stomach ache by getting too active,
too close to dinner.  She really has a wimpy

Much to Avalon's dismay, she was afraid she'd
be alone and abandoned in the tubes.  I can't
decide if she was thrilled, or horrified to be thrust
into the position of "big sissy", becoming
responsible for her baby brother.  I actually think
she ended up liking it, but there were some
heavy doubts in the beginning.

This was Avalon's first time on climbing
equipment since the events of the Summer.  In
other words, she hasn't had an occasion to try to
hoist herself anywhere with her new right hand
limitations.  Chalk it up as the first heartache of
the night.  Avalon started to go up the path to get
to the "big kid" slide, and ended up turning
around and coming back out.  She looked up at
me and said, "I don't think I can do th net, Mom.  I
dont think I can hold on.  I'm scared without
Ambrosia to help."  To
her, I said, "No biggie -
just go with Anam in the other part."  To
myself, I
screamed obsecnities in my head for what that
Monster took from her, and for how much the
"powers" at the hospital don't care about what
she's lost.  Avalon shouldn't have to question
herself.  She's supposed to be strong and robust
by now.  She's
supposed to be a normal kid
It didn't take long for Anam to snap me back out
of my funk.  He was hysterical!  At first he was
horrified of the entire structure.  Then slowly...he
began to figure out that climbing over, under, in,
out, and around was
fun.  In fact, he decided it
was FANTASTIC.  Trying to pry him out of the
tubes became an exercise in crow-barism, versus

While Avalon and Anam cavorted through the
concrete jungle, I had time to chat with several
moms I know.  I laughed with moms of kids off
treatment and moms of kids in active treatment.  I
hugged the dad of a dear friend who recently
earned her wings.  Its such a comfortable, warm,
amazing environment.  Its hard to describe.  

You know how we're all taught that gossip is
bad?  Of course it is, "Gossip" to me, is people
talking about other people with an intent of
somehow gaining power.  People gossip to make
themselves feel rightesous, because the souls
they're talking about have committed some moral
failing.  People gossip to make themselves feel
powerful - because they have intimate knowledge
of something that you don't, which appears to
give them the upper hand.  People gossip to feel
superior, its an innately negative activity.

Then again, I realized tonight - people can "talk"
about you without your knowledge, and it can be
a wholly positive thing.  The other night at the  
Blue Jacket's fashion show, we cancer parents
spent the entire night talking about our fellow
families.  We discussed recent relapses among
our friends' children, and how worried we were
for their hearts.  We talked endlessly about our
concerns, our memories, and who-knew-what to
be able to fill in our cracks in knowledge.  We
"gossiped" by a strict definition of the word, but
there wasn't one ounce of malice or power in it.  
We were members of the same army, suffering
together, worrying as one.  We weren't sharing
for anything but support, trying to figure out how
to muddle through filthy waters, to somehow
keep our heads up and help our friends do the

Tonight, I realized
we have often been the topic
of discussion this past year, and it was one of the
single most comforting things I've ever
experienced.  It had happened the first time at
the A Kid Again Christmas party.  An
acquaintance, that is a volunteer for the group,  
had greeted us shorty inside the door.  he'd
asked how we'd been, a question I honestly
loathe.  Most people want to hear the simple,
"Fine, thanks.  And you?"  But every time I start
to do that, I feel dishonest - like I'mcheating
Avalon.  She's most certainly
not "fine".  She
struggles every day, and I've fought hard to learn
to live my with my feelings of guilt, anger, fear,
and grief.  We're
not fine, we're in turmoil, and
I've started trying to be honest about it.  

Anyway, back at the Christmas party in
December, this voluynteer had asked the much
aligned, "How are you?"  As I started to politely
say, Well, its been a tough year..."  She stopped
me and said, "I know - I've heard.  I'm asking how
youre doing, are you
OK?  How is Avalon really?"
 I was dumbstruck.  She not only knew the story,
she actually cared enough to ask, and had cared
enough to listen to the story from someone else.  

Tonight, the picture came full circle for me.  I
stopped to chat with a mom I got to know during
the KNK mom's retreat last year.  She had her
new boyfriend with her, a really lovely man.  We'd
met briefly at a Christmas party, but this was the
first time we had two moments to really talk.  As
my friennd asked about Avalon, I started to say
my "Its been rough..." line.  She then turned to
her boyfriend, and told him Avalon's story...and
how she'd been to Hell and back this Summer.  I
was shocked.

I haven't seen this woman to fill her in.  I haven't
had the chance to sing our song of woe.  
Yet...she knew it all.  Once again, she was asking
real, heartfelt question of How are you
surviving right now?   
It was a humbling

I finally understood.  I finally came to grasp what
this group means to me.  It means safety, love,
and unqualified support.  My friends didn't
"gossip" about Avalon.  The shared.  They
shared our heartache and our worries.  Without
even seeing us, they took part of our heart
burden on themselves.  They didn't tell each
other to gain anything, they did it to make sure
the people who care about us knew what we
were facing.  I felt more love, and more strength
than I can explain.  I know when I'v run into
someone I know and asked them if they've heard
about a child we both know - its always been
because I've known they cared enough they
would be concerned.  Tonight, I learned that
others have done that for us - and that is a gift of
Grace that I couldn't have imagined would mean
so much.  Our daughter's name has been on
people's lips I didn't know about...what a Gift.

It took me a long time to understand how much I
needed this kind of support.  Its really only been
this year that I've fully embraced the group.  For
each step I've taken closer to them, I've been
rewarded with 100 steps of support coming back
to me.  I'm grateful, and probably doing a horrible
job of expressing what its done for my heart.  

But as with all good things, conversations at
Magic Mountain come to an end all too quickly.  
Little people run here and there, and parents are
obligated to try, at least somewhat, to keep up
with them.  There were lots of hugs and quickly
snatched conversations - but time is not on your

We'd been there about an hour, when the
director of KNK, Bev, came to find me to tell me,
"Your guest is here!"  Normally, guests are not
allowed at  KNK events.  Funds for our families
are very limited, so guests would eat at the
limited resources the charity already fights to
work with.  This time, however, Bev, Nick, Bonnie,
and June were willing to flex a bit.  In fact, they
couldn't have been happier with my "invitation".
Several months ago, KNK had its annual fundraiser "Quilts at the Shoe".  Its one of their two
big fundraisers, that fund that vast majority of our programs throughout the year. The evening
is a small cocktail hour where quilts are available for silent auction, then culminates in a live
auction of a few dozen quilts.  Not only are the quilts themselves fantastic, but we have
celebrity auctioneers who come to sweeten the pot with various "extras" they bring along like
OSU football or basketball tickets.  The quilts are often signed by OSU celebrities, and we even
had the cheerleaders and Brutus Buckeye helping us ply our wares.  

During the event, one of the celebrity auctioneers had stunned the crowd with an
announcement.  He shared with us about a charity golf event he's involved with.  His big news
was that he has secured Kids N Kamp as the beneficiary of the 2010 tournament.  In other
words, he single-handedly had arranged for a $50,000-$60,000 dollar grant to our charity.  I
wasn't alone in getting weepy over the proclamation.

After the auction, in my ever-so-bashful manner, I nearly ran up to Rick to thank him.  I
introduced myself as the mom of one of the cancer kids, and thanked him profusely for being
so kind to our children.  We chatted for a few minutes, and I asked him if he'd ever attended
one of our events.  I was stunned to hear "No."  Here was this wonderful, generous man - who
had arranged for tens of thousands of dollars for our kids - and he not only has no personal
connection to pediatric cancer - he's never seen what he does for families like ours.  So...I
invited him to come sleep with us...

Oh yeah, not kidding.  Right there, on the spot, I invited Rick to come to camp with us next
year, and share our cabin space.  After all, is there a better way to learn to understand what
impact you have - other than
living it first hand?  I think not.  To my surprise, he accepted!  We
emailed a few times since the Quilt Auction, but as you all know, I've been more than a bit
reclusive the past few months, so I haven't been grand in the communication realm.  

Suddenly last week, it dawned on me that Rick might want to get to know our family a little
better, if I expected him to keep his bargain of coming to camp with us.  So, I hunted down his
phone numbers and stalked him  inviting him to come to the Valentine's Day party with us, and
meet the kids.  And what do you know...
he came!

Better yet, Rick brought along his wife and youngest daughter too.  I'm everso ashamed to
admit, I was terrified that his family would be aloof.  Rick is a celebrity, and a very accomplished
businessman.  In my poorman's snobbery, I automatically assumed they would be disinterested
and cold.  I was
SO WRONG!  From the first time our eyes met, I was greeted with the
WARMEST, most GENUINE  smiles you could imagine.  I'm a giant dork.  I nearly missed out on
something WONDERFUL, because I was too full of myself to believe that they could possibly be

As it turns out, we had an AMAZING evening getting to know each other.  Rick played endlessly
with Ambrosia and Avalon.  I chatted happily with his wife, Lori, finding myself a kindred spirit of
scary proportions.  You'd think we'd known each other for years!  In fact, if the Universe smiles
on us, we
will know them for years to come.  They were utterly delightful.  Aurora and their teen
daughter, Cassady, were thick as thieves in very little time.  They giggled, teased, and
thoroughly enjoyed each other's company.  And Cassady and Lori were great with my little
ones.  They were willing to play, and not even remotely pestered by Anam, who can sometimes
be the undeniable King of Pain in the Pants.  

I tried to introduce them to our little corner of the world.  I gave brief bios of families that
passed us, and tried to help them see these amazing kids with the same eyes I do.  We
learned a lot about each other.  They peeked into my world, and I took a HUGE hit to my
judgement ego.  I was a COMPLETE JERK, even if it
was only in my head, and only for 1/2 a
second.  I'm sharing that for a reason, by the way.  I told my kids everything in the car on the
way home.  I admitted my AWFUL thoughts - because IO wanted them to know how ashamed I
was.  All too often in life, we
do judge people, by their looks, their jobs, their race, their
socio-economic status.  I've prided myself on raising color-blind children, little people who don't
judge someone for race, religion, education, or lack of money.  Then here I went and
committed an equally atrocious sin.  I
presumed that success would mean unapproachability,
or lack of interest.  Again, I will say, I WAS SO WRONG!!  I can only hope that 20 years from
now, Lori and Rick are laughing about this with me, as I'm sure I can beg forgiveness for my
thoughts for that long...and still not be able to make up for them.  Lesson learned...
don't ever
judge a book by its cover...
you might miss out on the best read of your life.  Color me utterly
ashamed of myself.  :-(

Leaving my stupidity behind, you can see in the pictures, we did have a tremendous amount of
fun tonight.  As I alluded to earlier though, it wasn't without its heartache.  Avalon had realized
her limitations in the climbing tubes and verbalized them.  Other times, we simply watched her
problems, she didn't even know to tell us.  For example, as the kids were trying to play ski ball
with Rick and Lori, I noticed that Avalon was throwing all the balls left-handed.  And no matter
how hard she tried, 5 out of 6 times, she couldn't even get the ball up and over the first hump -
it would come rolling right back at her.  As my heart was sinking, watching her struggle with
something so silly, Rick turned to me.  He had been watching too and said, "Oh - she's a
leftie!"  I had to answer with the truth, no - she's not.  She's strongly, abundantly right hand
preferential...its just she's apparently, at least subconsciously, figured out there's no hope of
getting that hand to do what she wants.  

I know it might not seem like a big deal.  Of course, in the face of death, losing control of one
isn't  a big deal.  I know that.  But that doesn't keep me from feeling she's been cheated.  
Five year olds shouldn't worry about what hand they hold something in.  They shouldn't have
to tell their sissies or their playmates not to give them something, or do something on that side.
 They shouldn't have to have a "bad hand".  That's a phrase I expect from Grandma, not my

Unfortunately, Rick and Lori also got to witness Avalon's decomposure.  We'd heavily guarded
Avalon's energy today, keeping her in a nearly statue state, to save every drop of energy for
fun tonight.  Actually, Rick is responsible for giving her quite the extra helping of fun.  If she's
distracted enough, she can push her body a bit further than normal, all in the name of fun.  But
eventually, the body catches up to her, no matter how deep her river of Fun de Nile is.  This
evening, she hit rock bottom at "check out" time.  As we stood in line to redeem their little
tickets, Avalon couldn't stand any more.   She sat.  She spent a good amount of the end of the
evening, on the floor.  She had hit the wall.  

Its interesting how Avalon chooses to deal with her empty tanks.  She'll literally just sit down,
anywhere.  She'll sit in the middle of a walkway when she's tired - it just doesn't matter to her.  
The truth is, Avalon had been complaining about her feet and legs hurting for nearly the last
hour of the evening, but she'd get distracted by something fun - and push on a bit.  But by the
time it came to leave, she was done "pushing", the time had come to give up.  

I totally owe Rick a HUGE shout out here.  He pulled a "white knight" and saved this mommy's
keester.  You see, part of the evening, is that KNK gives each family member a bag of tokens
to use on the gaming machines.  The pure video games, like motorcycles, shoot-'em-ups,
etc...were turned on for free play.  The tokens are necessary for the arcade games where you
can win tickets that are redeemable for prizes.  Nick and I always give our tokens to the kids, so
they end up with quite the haul.  Aurora was SUPER SISSY and decided she didn't need
anything from the prize cabinet.  So when she was out of tokens, she redeemed her tickets,
and brought the receipt to me, to add to what the girls had.  (Big sissy points for that one!)  

Well, as the kids handed me token cups, and took token cups back, and handed me different
wads of tickets, and then took them back...and handed me bags of tickets, and took them
back....  I must have dropped the ticket receipt.  Horror of horrors...I
lost their bonus points.  

I didn't realize it until we were in line to claim their loot.  When I did, Lori remembered seeing
the receipt on the ground, and we figured out when I must have dropped it.  She went back to
look, but as anticipated, it was long gone.  She told Rick what had happened, and he too
looked, but again - to no avail.  Like I told them, it was no biggie.  I'd apologize to Aurora, since
I'd kind of squelched her kind act.  As for the receipt, I just hoped one of our little friends would
enjoy it, no stress, no regret.  

Next thing I know, Rick handed me a receipt worth as much as the one I'd lost.  I have no idea
how he did it, but he did.  And the Cheshire grin he was wearing, squelched any idea of
arguing I might have had.  You absolutely cannot disagree with an ear-to-ear smile...you just
quietly accept the kindness - and thank the "cat" for being so stinkin' sweet.  

Rick, Lori, and I all enjoyed watching the high level negotiations at the prize counter.  Avalon
and Ambrosia were deep in discussion.  They pondered and questioned and gave serious
consideration to their "purchases".  What they came away with, made sappy old mom so proud
she could have burst.  

Ambrosia and Avalon had lumped their tickets together with 'Aurora's'.  They then chose three
of the exact same prizes, glow-in-the-dark sticks, so they could share with Aurora.  They also
chose a koosh ball for Anam, because they thought he would like it better than the glow stick.  
With no help or suggestions from anyone, they thought about sharing with their siblings, and
purposefully tried to pick things that each of them would be happiest with.  Yep, getting weepy
again just thinking about it.  

That's when I knew what the entire evening had been about.  I suddenly "got" the cosmic
picture.  I hadn't been there to eat pizza or act like a walking gaming tray for my kids.  I hadn't
even been there to talk with friends.  I'd been there, to learn about
sharing.  I had needed a
lesson on
Sharing of the Heart.  Rick and Lori taught me to share my heart openly, without
judgement.  The other parents taught me that sharing our journeys makes us stronger, and
together - we can make it.  And my kids?   They taught me that sharing
anything with your
family makes it more wonderful, and so much more special.  

I love it when I get to learn from my kids.  :-)
I totally want this firetruck for
Anam's room!
My husband is a giant child...and the kids think its cool!
The lizard game, you use their tongues
to knock over things.  So weird its
Anam was Loving being a race car
More silly fun
Climbing, climbing
Hee hee hee...
Gaming is serious business
Dinosaur death squad
L-R Back:  Rick, Lori, Cassie, Aurora
L-R front:  Ambrosia, Anam, Avalon
New friends, new loot, new outlook...one
Great Night!