Catching up...
getting the entire emails (rather than a link to them) - I cave. Frankly, I can't figure out how to
fart out enough time to split the email list into "emails" verses "links" - so you're all still going to
get emails! So there. Sorry for attempting to rock the boat...whip me with a wet noodle the next
time you see me...
As far as emails go - lordy, lordy, lordy...do I have some catching up to do! OK, you're going to
play a giant game of pretend with me. Yeah...you have no choice - so you might as well suck it
up and pretend you like this. I'm going to send you updates with the dates on them that they
are referring to. Yes, I know this is actually August 4th...but we're going to pretend its June
17th, so I can fill you in on the Circle of Friends event. That's right...work with me folks...
So here we go...back in time...weeoooo, weeooooo, weeeooooooo...................
June 17th, 2005 - Circle of Friends event
Circle of Friends event
I'd have the details about Circle tatooed to my forehead, if I thought they'd fit. (hey, maybe I
could put them on my sizeable derriere? Nah...there's plenty of room...but I'd scare people too
much if I tried to show them...)
So, here's the scoop. Circle of Friends raises money for pediatric cancer research. It is
administered by the Columbus Children's Hospital Foundation, and operates 100% with
volunteers and donations. Therefore, every single penny that someone gives to Circle goes
straight to pediatric cancer research here at our Children's Hospital. Unlike other cancer
charities that lose so much money to fundraising, administration, etc - that they are only able to
give 10 % or so to research - Circle of Friends gives 100% of every dollar raised straight to
research. Can I hear a "Hallelujah!" please?
Circle of Friends has that name, because it literally started out as a small gathering of friends.
Those same friends have stuck with it, poured their hearts and souls into it, sucked more
friends into it...and broke the million dollar mark in donations this year. How's that for some
fabulous "friends"?! The people responsible for Circle have truly dedicated themselves to our
cause, and I can never thank them enough for that.
I learned about Circle from a friend of mine. When Aurora (my oldest) was 3, she began dance
lessons. By gift of the universe, the rag tag little group of moms with kids in that class formed
amazing friendships. Our "ballet bunch", as I like to call us, couldn't be more different - but we
couldn't be more alike either. Several of us have remained good friends, and I know my life is
all the richer for having met these women. Anyway, one of our "bunch", Lisa Vitellas, told me all
about Circle after Avalon was diagnosed. Lisa is on the board, and is entirely responsible for
bringing me in - again, I'll never be able to say "Thank You" enough. So, now I knew about of
Circle...but what did that mean?
Well, I contacted Nichole McCormick who is the Foundation liason for Circle - and offered
anything I could to help them. I don't have piles of disposable income, but I have my voice and
our story - and one downright adorable kid, so I hoped I could help somehow. As you've read
in the past, one thing we decided to do was to photograph Avalon to use on posters for Circle
of Friends. Avalon has huge eyes, and very non-descript features. Frankly, she looks pretty
androgenous without hair, a very good "poster child" look for cancer. As I've written before, the
photography process was fun, sad, gratifying and horrifying. Sarah Smith did an amazing job
with the portraits. In fact, they were so amazing, and such a good glimpse of a cancer child -
that I found it devastating to actually see Avalon the way other people see her.
All that personal nonsense aside, Avalon's pictures turned out perfect for posters - just as we
hoped. As a thank you for allowing her image to be used, Nick and I were invited to attend the
Circle of Friends Benefit night. The benefit was $100 a ticket to attend (thank goodness we
were guests - it wasn't happening any other way!) and consisted of a silent auction, live
auction, live band, open bar, and hors de vors stations by several gourmet restaurants. These
people seriously know how to host a party! This year the event was held at the Wexner Party
Barn - in New Albany, Ohio.
Before I launch into the details of our particular evening...I need to explain a few things. New
Albany is a suburb of Columbus, a very exclusive, well-to-do suburb of Columbus. The houses
are gorgeous, the people more so. Circle of Friends started as a get together after an event at
the New Albany Country Club - so these are not construction workers we're dealing with here.
Through the years, the Circle event has become a see-and-be-seen event in New Albany - all
the better for spreading awareness and raising money. Yee ha! Anyway, you need to know -
several attendees are not exactly people who would be at home in my "wrong side of the tracks"
neighborhood.
In addition, the "Wexner" party barn belongs to none other than Les Wexner - of Limited Inc
fame and fortune. Les and his wife Abigail are not only some of the wealthiest people in
Columbus (heck, in the US) - but they also happen to be some of the most philanthropic. They
are absolutely dedicated to several children's charities, and offer the use of the barn and its
facilities to Circle. Let me assure you though - "barn" doesn't quite cover it. We knew that
"Wexner" before barn meant nice...but good grief a buttons...we didn't quite know what we were
in for!
My story about this event actually begins several weeks before - as I began trolling the universe
for something to wear. OK, I know my keester is large. Heck, its large enough I'm trying to use
it as a fundraising endeavor! Problem is, I also know that wealthy people tend to have a rather
low opinion of we po-folks who have let our butts blossom so expansively. Now, its not fair to
make that as a blanket statement...I know that. But true or not...that's exactly what was rattling
around in my head as I tried to go shopping. Not to mention the fact that members of the New
Albany Country Club pay an annual dues to the Club that doubles what Nick makes in a year.
Hows that for being a bit intimidating? I'm proud of my family, proud of our life, proud of what
we are giving back to the universe...but geez, I'm human! Faced with cute, tan, well-dressed
people in my future...I was a shopping wreck!
Oh, and did I mention that the evening was "dressy-casual"? What in tarnation is "dressy
casual"?! And seriously...does "dressy casual" mean the same to someone who shops at
Target as it does to someone who shops at Lord and Taylor? Rats if I know! I began a several
week process of grilling everyone I know for a better definition. OK, I suppose I should be
honest...I grilled people I passed on the street. "Hello, ma'am. You're beautifully dressed. If I
attend a New Albany event...just what is "dressy casual"?" People began to think I was a
cross between a clothing nazi and a fashion stalker.
As if all of this had not heaped enough dress-stress on my questionably coiffed head, then
came the final blow. I stopped in to the Foundation office to see Nichole one afternoon - only to
find out, by accident, that I was supposed to speak at the event! Oh yes, a week before being
cast into a sea of people that can buy and sell me - and I find out I get to stand up in front of
them. You know, stand up and be seen in whatever reasonably priced frock I end up
choosing... Oh yeah, my head nearly exploded over that one. Fear of speaking in public?
None. The bigger the crowd the better - I can talk to anyone. Fear of being seen in an outfit
that belies my socio-economic shortfall and my calorie-storing windfall? Mountainous wouldn't
begin to describe that fear.
But the kids and the hospital were counting on me, so I pushed on through my shopping
nightmare. Eventually I actually found a dress I loved - a little weird, a little fancy...a lot like me.
OK, I thought - maybe I can survive this. Then, it hit. The big one... Remember the email
before the event? The email telling you that Avalon had shared her cold with me? Oh not only
did she share her cold with me...she shared the virus causing the cold. The virus that went
coursing through my veins, finding other viruses...and giving me the world's biggest cold sore -
right in the middle of my upper lip!!! I'm not talking cute little red dot here...I'm talking Mt.
Everest - poised ever so perfectly, smack in the middle of my upper lip! As I tried in vain to
bury it with lipstick, lip pencil, lip gloss, and any other colored chemical warfare I could...it
decided to continue swelling and to drain copiously. Ewwwwwwwww.
So here is the picture of me to hold in your brain. I'm a round woman with red hair and freckles.
I'm currently wearing glasses, because I refuse to pay for new contacts when I'm saving to get
my eyes done (laser). I'm wearing a $19.99 dress to an event where the other women's bras
probably cost 3 times that. My shoes are sensible and $12.99 from Payless - because I don't
want my feet to hurt. My nose has been running like the firehoses in a 3 alarm fire, for enough
days that my schnoz is a lovely red, cracked, peeling lump in the middle of my multiple chinned
face. And if all of that isn't enough to leave you running for cover - I am blessed with a cold
sore smack dab in the middle of my upper lip that my 10 year old daughter says is bigger than
the deformity on the lady featured on the television show, "Extreme Makeover". Woo hoo, I
was one fabulous sight to behold.
So there you go, the arsenal with which I had to face these people. But lo, my story doesn't
end there. You see, the week of the event had not only been filled with Avalon's port
placement surgery, a car accident for Nick (with the girls in the car), an overnight hospitalization
for Avalon, and the Circle of Friends 5 K run. Oh contraire...we had also been taking Aurora to
her dance camp at Ballet Met. Of course, the same Friday as the Circle of Friends event,
Aurora had her camp dance show - immediately followed by a rehearsal for her Kids of
Broadway show that was to take place a week later. So, that fateful Friday, I had to go to
Aurora's camp show - which ran over an hour later than it was supposed to. That, in turn,
made me late getting Aurora across town to the K.O.B. rehearsal. Being late there - put me
smack into traffic getting back across town, to get home to get ready for the event. All told, I
had less than 10 minutes to try to make my ridiculous self metamorphisize from sick, ooky
housewife - to something close to publically acceptable. Re-read the above paragraph -
consider the time frame...and you'll get an idea of what I was up against.
So, at long last, and with many misgivings...we were finally on our way. Here's the next chapter
in our saga - our transportation. Because Aurora needed to be retrieved from dance class,
Nick and I had to leave my sister (our valiant baby-sitter) the family van. You know, the "good"
car. That left us with Nick's work car - a 12 year old Nissan Sentra. Since Nick's truck was
stolen last year, this plucky little Nissan (147,000 miles) has served as his "truck". You can
very well imagine the condition its in. He hauls tools and even the occasional bags of mortar in
it. While it is highly functional, and has been a lifesaver on fuel bills - it is not at all what one
would consider a luxurious form of transportation. Oh, and did I mention that as I was driving
Aurora the 35 minutes across town to her rehearsal, that the muffler developed a giant hole?!
Oops, I seem to have neglected that.
So here we go, me with my dripping, oozing face - Nick with his shaved-head-growing-in weird
hair, trundling along in a filthy, ancient Nissan that sounds more like a
Harley-Davidson-designed-tank than a normal car. Ooh buddy, we were the pictures of
"sophistication". Mind you, we had not the slightest clue where we were going, so as Nick
drove, I was navigating from directions I'd been given. As we got close to where I thought the
barn would be, I said, "I think it should be coming up soon." Nick's answer? "Yeah, I'm pretty
sure it is...right up there where all of the expensive cars are turning in..."
And thus begins our evening, pulling into the drive to the barn - behind a 2005 Lexus, in front
of a Porsche...in our ancient Nissan, with the hole in the muffler...seriously folks, I couldn't make
this stuff up.
We knew we were in for a ride from the time we approached the entrance. As you pulled off of
the main road - there was a New Albany police officer, and volunteers from Circle there to make
sure your name was on the list - or the officer would escort you right back onto the road. They
darn near tripped over themselves getting to our car to tell us this was an "invitation-only"
event. Imagine their shock and dismay when we were actually on the list! From there, we
wound along the most picturesque - elegantly appointed driveway you can fathom. All the way
to the line outside of the event...the line for the valet parking. Uh huh - we had to turn our
jalopy over for valet parking. I think the valets nearly hurt themselves trying not to laugh....can't
say I blame them. My sister says we should have told them to "be careful...its a foreign engine,
you know!"
The space of the party barn had been more than doubled by huge white tents. We entered
into the welcome tent and waited in line to "sign in". All along the path were pictures from the
5K run that had been held on the previous Tuesday. There were lots of fabulous pictures of
Avalon, several of Aurora (because she had run the race with Lisa's children) and even some
of friends of ours that had run the race in Avalon's honor. It was fun to walk along and find the
people we love - it kind of made me feel like an "insider", like I might actually belong there -
even when I didn't feel like I measured up at all.
That's when it hit. I happened to look over my shoulder into the big tent that contained all of
the auction items. What was sitting right at the entrance? A 5 foot tall poster with Avalon's face
right in the middle of it. The picture is the one we feature on the home page of the website, but
all that you saw on the poster was a circle cutout of her face - bigger than life, bigger than I had
anticipated. We weren't even 20 feet in the door - and I was a puddle. I told Nick I thought we
were in for quite the evening. Its weird, I see the picture all the time, for Pete's sake, I see her
all the time...but that poster was unnerving. It was the absolute perfect representation of
pediatric cancer, and more than a little bit disturbing that it was our child.
After checking in, we immediately were greeted by one of the founders of Circle, and one of the
other board members. They were warm, welcoming, and utterly wonderful. I decided phooey
on my fears - I am who I am, this amazing lady is glad to see us, so to heck with anyone's
judgements. She'll never know how much her huge grin and generous hug did to calm my
nerves.
Nick and I wandered around the tent for a while checking out the auction items. It was rather
strange walking around...that same poster with Avalon was repeated a dozen or so times -
staring at us from virtually every corner and every angle. Weirder still was listening to other
people comment on it. No one knew we owned Avalon, so we were privvy to comments that we
would not have been otherwise. All I can say is...weird, weird, weird.
To compound the weird weird thing, there was yet another poster of our family. Kent Smith
photography used our portraits to create an advertising poster for a fundraising project they
were doing for Circle. The poster was gorgeous...but again, here was Avalon - and now us, as
well, for all the world to stare at. I'm telling you...alternate universe weirdness was at work here.
Most of the evening was uneventful and downright fun. We spent a lot of time, and several
laughs with a local reporter and her husband. She's one of the few people that I've met in my
life that I thought..."hey, have we known each other in some previous life?" My Chicago friend,
Chris, is the same way. The instant connection I've felt to these women leads credence to any
theory you wish of the universe being filled with so many things we don't comprehend. All I
know, is I'm grateful to have met them.
As if the evening wasn't already chock full of strangeness, I have another instance to share. At
Tuesday's 5K run, I met the mother of another pediatric cancer child. This beautiful little girl is
just a few months shy of her magical 5 year milestone - but her parents are as committed as we
are to the cause. We instantly connected and enjoyed chatting - for the few brief minutes we
could grab. The whole time, I kept thinking she looked like a mom I used to know from Aurora's
old dance school. I knew this particular mom was related to the DeMonye family, owners of a
local garden center/nursery that I've haunted for years. I kept thinking I needed to remember to
ask this lady if she was, indeed, related to them after all.
As Nick and I arrived at the event, I had commented on the flower arrangements that graced the
entrance. I told him I knew they were DeMonye's. He teased me that there are several dozen
nurseries...who was I to think I could identify a flower pot? I told him I know their work...don't
question a flower lady! Anyway, here we are, wandering aimlessly through the auction tent,
when I spied my new friend. And just who was walking with her? You guessed it, my DeMonye
friend from all these years. We just looked at each other and laughed...cancer unites people
even when they don't know it! My friend, Shelly, turned out to be the twin of Kelly, the mother I
knew from dance. As we all sang "Its a Small World Afterall", we had a grand laugh and spent a
wonderful evening with "new" friends we'd known for years! Truly, an evening of surprises.
We were also lucky enough to get to spend a little time with my dear friend, Lisa, and her
husband, Ken. They are two of the most generous, kind-hearted people I know. However, I
threatened to change my opinion of Lisa after I found out she's the one who suggested I speak.
I told her its a darn good thing I love her...her life wouldn't have been worth a plug nickel if I
didn't...
As for speaking, it was rather unceremonious. After the silent auction, before the live auction -
they slated a few minutes for a few of us to speak. First was Jodi, the woman I wrote of before.
I find Jodi to be one of the most courageous women I've ever met. She voluntarily relives the
horror of losing her son to cancer - to try to make cancer real for the people there. She was
kind, and giving...and seriously affected me for several weeks afterward. But we've already
covered that, so I'll move on.
After Jodi spoke, Heather (the emcee) introduced the video that our local CBS affliate did about
ALL, that included Avalon and our family. So again, we were thrust into strangeville - by seeing
our little ones on this huge jumbotron thing. Good news is, it made Avalon real for everyone in
the crowd. Bad news is, I had to follow my own less-than-impressive television moment. Ah,
add it to the wide load rear end, the dripping, red nose, the stuffed up voice and the
elephantine cold sore...what did I have to lose? I stepped up onto the platform in front of all of
the people I was intimidated by...and cut loose.
I had decided to speak about what diagnosis is like. I plagiarized myself, and read a few
paragraphs from my own diagnosis letter that I sent to all of you. I wanted everyone there to
understand that cancer can come home to anyone's house, and that it is as scary as you think
it will be. I also wanted to thank each person in that room for what they were giving to our
children. After all, every child with cancer is one of mine now - we are all family in the best way
- hoping, working for, and celebrating victories whether we've met once or never. I tried to tell
everyone there, how much we need and appreciate them.
Of course, big "duhhhh" here, I cried. Good news is, I started out sounding like I had socks in
my nose - crying didn't change that much. For those of you who have heard me attempt to
speak when I cry...I actually managed to keep speaking this time. Normally, I go into
sounds-only-a-dog-can-hear mode, but this time I actually managed to speak audibly.
According to Nick, I managed to take 90% of the audience with me in my tears. Not my
intention, but I decided I was happy to have company.
After I finished, I had to figure out how to negotiate myself off of the platform via a folding chair.
Thank the stars for a few steady hands...I did my best to do a swan dive and land
unceremoniously on my head. Luckily, better people than I saved me from myself.
The remainder of the evening passed quickly as loving and thoughtful people sought us out to
share their stories or to say "Thank You" for sharing ours. It was good for the soul, and great
for my mental health.
As the live auction ended, the real dancing/partying began. Nick and I decided that we'd best
head home to rescue Aunt Nettie. Besides, gooey, drippy, stuffy, bleck-laden me was so over
the party scene. So, here we were - wating in line for the valets to deliver our oh-so-fancy ride.
Ken and Lisa were behind us in line, so we decided to share the story of our arrival - for their
amusement. (OK, technically, I kind of saw it as a warning. I wanted them to be able to pretend
they didn't know us if they wished!) Anyway, as we edged closer to the door, we came in line
with one of Avalon's posters. I commented to Lisa how strange it had been to walk around the
room with her staring at us.
Lisa's answer? "Did you take one?"
"No! Of course not!"
"Why not? She's yours. You need one of the posters." This declaration was followed by her
marching over and confiscating one for me. As I began vehemently protesting and reminding
her about the NISSAN SENTRA that the poster would NOT fit into...she ignored me completely.
Next thing I know, she and Ken are liberating the poster from its frame. As I turned 20 shades
of red, Ken and Nick were finally successful in removing it. At that point a very victorious Lisa
proudly rolled the poster and presented it with a flourish. I have to say, the whole thing goes
down as my absolute favourite memory of the night. Who else but a friend would commit
larceny and property defacement in your honor? All while grinning like a Cheshire cat and
daring anyone to argue with her! Officially and publicly, I declare Lisa Vitellas to be silly,
outrageous, generous, and one of the best friends a person could have. Kudos, Lisa...you are
something special.
Nick and I spent the drive home, and the retelling of events to Nettie, in absolute fits of giggles.
We enjoyed ourselves immensely, even if there were long-term mental battle wounds resulting
from it. I'm a 100% supporter of Circle, and will join them for as many years as they will let me.
I know this has been one ridiculously long letter. I'm a little sorry for that - but not too much.
What did you expect after I've kept my writing muse locked up for so long? Whew! She's out
now...and you're all in trouble! I've got lots to catch you up on. Hopefully, the weight of the
load won't overburden your in-boxes, or your eyes. If I do, have a beer in my honor - and
forgive me.
After I send this to all of you, I'll go to the website and post it. I'll also post my speech from that
night, and eventually some pictures if I can talk Circle out of them. I do have pictures from the
5K run - so look for them later on today or tomorrow.
As always, I want to say a sincere thank you to each of you. We love every single warm body
who reads this, either directly or down the line as a forward-friend. You give our baby warmth,
love, and strength. I hope we give you a little hope in return.
Love to ALL of you!!
Alicia, Nick, Aurora, Ambrosia, and Avalon
Friends speech
