Page Title

Our
Journey:

Avalon's Army of Angels

Happy Heart Day everyone!

As you can see in the pictures, our big Valentine
outing was to go bowling together. Wow...are we
romantic, or what? Ugly shoes...worse
carpeting...and floors that remind me what mine
should look like...if kids and an uber-shedding
dog weren't in league to ruin them.
Ahhh....bowling. You just gotta love it!

Well, we did. From the time we walked into the
door, until we nearly skipped out. And I never
even touched a ball.

Today's adventure was courtesy of the amazing
students organizing the 2009 Ohio State
Buckeyethon. We didn't just roll a ball toward
some sticks, my dears. We participated in the
2009 Buckeye Bowl-A-Thon! Yeeeha!!

OK, by "we" - I mean Ambrosia and Avalon, and a
little bit of Nick. The Buckeyethon bunch were
kind enough to invite the focus families to join
them at the Bowl-A-Thon as their guests. Since
we knew that meant they'd be paying for any
games we bowled, we made sure only Ambrosia
and Avalon played - to keep our cost to a
minimum. I wish I could tell you we paid for games
for all of us and financially contributed to the
cause. I wish I could...but its winter, we haven't
had money come into the house for nearly 2
months...and tight refers to more than just my
over-stuffed jeans. So we let the kids participate,
gave out lots of hugs, and appreciated the
generous offer to join them.

We think this was Avalon's first bowling
experience. Ambrosia went along with Aurora to
a bowling birthday party when she was a toddler,
but I don't believe Miss Avalon has ever donned
the darling shoes of the lanes before. As you can
see in the picture, both princesses were thrilled to
show off their royal finery.

The alley gave us a 6 pound child's ball, but I still
had my doubts about what Avalon would be able
to do. She'd slept the whole the way there, and
done nothing of interest that morning, so she was
up to her eyeballs in excitement and her day's
allotment of energy. She'd been looking forward
to today for weeks, asking constantly how many
more days until the Bowl-A-Thon. For her, this
was heap big piles of Fun.

Anam hadn't fallen asleep until a few minutes
before we arrived, so I started the afternoon as
an upright bed - trying to coax as many ZZZ's out
of him as we could get. As a functional slumber
device, I was hampered in any efforts to
participate in Bowling 101. Since I've been
bowling for years longer than Nick (and have a
better average I must say!) - I was dubious about
his lecturing abilities. Dubious turned into
panicky when I realized he was trying to teach
Avalon the real way to bowl...holding and
swinging the ball with her right hand...

You see, Daddy hasn't been around much the
last several months. Call it work, call it...ostrich
syndrome... But whatever you call it, Daddy isn't
fully grasping everything that's going on with
Avalon. Or rather, the multitude of things that
aren't going on anymore. Things like, right hand
control. Avalon often switches little balls at home
into her Left hand for more control (without even
realizing she's doing it) - and here he was, trying
to get her to throw a bowling ball!! All I could see
was broken feet - mangled fingers - random
destruction of various obstacles and body parts...

As quietly, yet whisper-Loudly as I could, I tried to
convince him to just let her squat and ROLL the
ball, no swing and bowl. It didn't take long before
Avalon's own struggling with two handed holding
and sideways toss/drop method, convinced him
I'd had a point. He changed helper tactics, and
worked on getting her to use both hands to push
the ball - rather than trying to launch it.

As you can see from Avalon's action shots - she
did embrace the two-handed shove. Even then,
there just isn't enough oomph left in that little girl
to pull off anything more than a little nudge.
Seriously, pushing as HARD as she could...we
worried nearly every ball that it wouldn't make it
all the way to the end. Only one ball actually quit
midstream and had to be rescued. But her turns
were nailbiters from first to last.

Today was also a great way to explain to all of
you how Avalon works. Like I said before, Avalon
had a quiet morning, then slept the 40 minute trip
to the bowling alley - so she arrived raring to go.
She literally bounced her way to our lane,
brimming with energy, and seemingly a perfectly
normal 5 year old. To see her when she first hit
the lanes, you'd never have any idea she has
issues.

Anyone who watched Avalon try to get the balls
down the lane, may have begun to suspect she
has issues. No matter how hard Avalon tried, she
could never get the ball to move faster than a
wounded slug. And she tried, it was a matter of
pride for her. Its just there is no power to her
punches...none, zero, zip.

Avalon absolutely LOVED bowling, she thought it
was terrific. When the kids finished their first
game and Ambrosia had won by only 1 pin,
Avalon was determined to try again to beat her. If
you're wondering how their scores were so close,
it had to do with direction. Ambrosia had lots
more power, but less aim. Her balls would
bounce off the bumpers and lose steam.
Avalon's tiny little shoves were dead on accurate.
When she'd nail the head pin, it was like watching
a game of dominoes, the pins would slowly take
each other out. Her accuracy was uncanny, at
least during the first 8 frames or so...until she
began to tire out.

I had my doubts, but both girls really wanted to
play one more game. We worried about taking up
space, so we asked one of the organizers if
they'd mind if we stayed for another round. He
couldn't have been kinder, encouraging the girls
to enjoy themselves and not worry. Nick and I
could see that they still had available lanes, so we
agree to let them go again.

This is where the real Avalon began to emerge.
Her pushes lost even more power (if that was
even possible). Then they lost any sense of
direction. What had been perfectly straight little
shoves, became aimless, non-directional
disasters. After her first turn, I found her laying
her head on the table while Ambrosia bowled.
After her third frame, she gave up. She looked at
us and said, "I can't do this anymore. I'm done.
Is it OK if I stop?" She was totally used up,
nothing left. My bouncy little sprite of an hour
before, had used up the allotment of energy she
had for that day, and there was no going back.

Nick finished Avalon's game so Ambrosia could
keep playing. Avalon watched, melting into the
table and chair more and more. By the time they
were done with the game, Avalon was more than
ready to be done with the day. She was smiley
and happy, but definitely not the bouncy little
bubble we'd arrived with. Then again, that's her.
Its an insidious reality...and one that's hard to
describe to people. She seems so normal and
carefree... Its what lies beneath the surface that
makes my heart ache. No matter how much she
wanted to play, her body betrayed her again, it
gave out before she was ready. This is life for
Avalon. Trying to trick her body into letting her
live like she wants to. Or, more often than not,
trying to live within the confines her body places
on her. We're still learning the difference
between the two, and how to manage the intricate
dance they require.

But don't be sad, we have her, and that alone is a
miracle. Avalon LOVES life, and approaches it
with gusto and wonder. She had a Glorious time
today! She thought bowling was fun, and had a
tremendously good time pestering the people we
shared our lanes with. The adorable girl you see
posing with the kids, is one of the dance captains
from the impending Buckeyethon. When the girls
were introducing themselves, she said she knew
who Avalon was - and was thrilled to get to meet
her. This darling woman cheered and hollered
for my girls as if they were her own. She helped
"air push" Avalon's balls, and yelled for
Ambrosia's spares like they were on a league
together...all while fiercely competing with her
boyfriend. (which I highly encouraged!) We
couldn't have asked for a better 'lane mate'.

As we left the bowling alley, we were greeted with
a beautiful sight, an entire bus load of OSU
students, coming to play for our kids! Who could
have dreamt up a better farewell? I think Nick
and I grinned the entire way home.

If you'd like to see a tiny bit of what Buckeyethon
is about, they have a video on their site. The
video is kind of crazy - but during the body of it,
you can see snippets of Avalon and Ambrosia
dancing in the middle of huge groups of college
kids. At the end of the video, they captured
Avalon's famous, "O!" and left it in. For those of
you that don't know, one of the biggest Buckeye
things to do is to yell, "O-H!" then other people
yell back, "I-O!" We do this in stadiums, arenas,
heck I've had it yelled to me at a stop light during
football season. O-H/I-O is something everybody
in Columbus Ohio knows.

Last year, several of the children from the
hospital stepped up to the microphone at
Buckeyethon to speak. Some just said, "Go
Bucks!" Others said, "Thank you", and one little
guy you'll see in the video - even sang a song.
Several of them did O-H/I-O, so that's where
Avalon must have gotten the idea. Problem is,
she was 4, and didn't really understand the game.
When it was her turn, she took the microphone,
and with all the gumption of a college football
coach, she yelled her battle cry, "O!" Yep, that's
it. No H, only O. Hmmm...that's a problem.

Actually, it wasn't. After her mighty and heartfelt,
"O!", the students kind of paused...then followed
with, "H-I-O!~" H-I-O was then followed by gales
of laughter and the loudest applause you could
imagine. Those lovely, wonderful, thoughtful kids
really got it. She gave them all she had, and
loved each and every one of them. This all
contributes to why I'm a weepy simp in the video.
Yes, they put me in there too. In fact, I'm the
plump, football-jerseyed ending of the video - as I
tell them how PROUD I am to be a
Buckeye...thanks in no small part to them. I'm
honored to share time with them each year, and
humbled that I get to meet such amazing kids.

Oh crud...here go the tears again. I'd best go,
before happy memories short out the computer.

Hugs!

February 14, 2009
Buckeyethon Bowl-A-Thon