 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
Our
Journey:
Journey:
Avalon's Army of Angels
| June 23, 2009 Reach the Day - Capitol Hill |
The only way to fairly describe this morning, is to say
that it started at what my sister would call, "the
butt-crack of dawn." I had to wake up, round up and
hype up all 4 kids in time to make it to a 7 am
breakfast at the host hotel.
OK, so 7am may not sound like the earliest of
mornings to some of you. Oh contraire, my friends.
For you see, trying to arrive anywhere in DC at 7am,
puts you square in the middle of that dreaded DC
"Rush Hour" - which is entirely mislabeled. In most
cities, "Rush Hour" is so named because it lasts
around an 'hour' or so. Oh no no no...DC insists on
being quite the over-achiever in this category. In DC
(and the jillion and 2 surrounding areas) morning
Rush Hour lasts from about 5 am - 9 am. Seriously.
I knew from Monday, I could physically get from
Anne's door to Union Station in about 35 minutes in
off-peak traffic. Anne and her boyfriend warned me
that peak traffic could be closer to 90 minutes. Do
the math...need to arrive by 7, need to leave around
5:30, everyone must look good for a day of
meetings.... Yep, you have now arrived squarely at
the "butt-crack of dawn". (BTW, I'm cleaning that
phrase up - my sister's actual phrase is a tad more
colorful)
Needless to say, with that kind of timing, morning
showers/baths were NOT on our agenda. We had to
live with our funky selves from the day before.
Somehow, in a manner that can only be divinely
driven, we managed to get everyone dressed,
coiffed, cute-i-fied, and the necessities packed up for
the day. All in time to leave about 10 min before 6.
I'm sure you will note that 5:50 is not 5:30. Well, I'm
also not a perfect size 6. Sometimes, you just have
to get over stuff. (We only ended up being about 10
minutes late to breakfast.)
As we hurtled, ummm...weaved, dodged,
prayed-for-our-lives...through a real DC rush hour -
Ambrosia, Avalon and I had plenty of time to warn
Aurora about our impending elevator rides. You
know how stories tend to grow over time? Funny
enough, this one was already so rotten, they actually
reported it dead-perfect. I found that hysterical.
I should note here, that Aurora was with us under
protest. Anam had been such a supreme schmuck
on Monday, that Aurora didn't want to come to DC
with him. She fought long and hard to stay at Anne's
with Anam, rather than have to wrangle him in the
halls of Congress. While it was a thoughtful and
selfless gesture, it was also out of the question.
Mommy stuck by her guns. We came to DC as a
family. We lived through cancer as a family, and we
were going to go speak for other familes...together.
Besides, Anam was a good visual tool. By the time
Avalon was the age he is now, she'd undergone more
than a year of chemo, and had three major surgeries.
She'd also had blood and platelet transfusions, IV
antibiotics at home, and weeks of hospital time. I
thought a visual reminder of a healthy toddler, to
compare to the photos we were sharing...might just
come in handy.
I should probably explain about sharing photos.
Families who attend Reach the Day are encouraged
to bring "Leave Behinds". Leave Behinds are meant
to be left with your congressperson, to remind them
why you visited, and why childhood cancer funding is
important. When we first decided to go to RTD, I had
high expectations for what lavish Leave Behinds I
would take. In the end, I was rushed and ended up
creating more of a scrapbook of images and short
statements about our life with cancer. Truthfully, I'm
glad I waited. I think the long stories, poems, and
multiple quotes from Caringbridge sites, would have
missed the mark. Face it, words upon words,
peppered with more words...are the entire world of
each Congressman. I think actually showing them the
reality of childhood cancer ended up being a much
better approach.
Rather than just printing pictures on a page, I went
ahead and had multiple copies made of most of the
photos I wanted to use. I had started out with a
rather grandiose idea of having some images lighter
(barely visible) as background on the pages, with real
photos glued on top of them with text in various
places. Yeah...I "started" with that idea. What I
ended up with were pictures glued to plain white
paper, with a few fill in pictures just printed on the
page. Actually, I'm pretty happy with it. If I go back to
RTD, I don't know that I would change much. I would
like to add explanation captions to the photos, and
make sure that all pictures are real ones, with some
glued on the pages in perhaps more of a
framed-up-scrapbook style. Then again, maybe less
is more.
All in all, I think the $40 it cost us to make the Leave
Behinds, was money well spent. If they helped even
one staffer "get it", they did their job. There will be a
link at the bottom of the page if you wish to see our
Leave Behind. Thank you scanners and
computers...I can actually show you!
OK, back to the morning mayhem. As I said before,
the little ones and I had the entire trip to regale
Aurora with our tales of woe from the day before. By
the time we got to Union Station, I think Aurora was a
dead 50/50 split between being terrified, and thinking
we were exaggerating the whole thing. She was soon
to find out.
And yes, I did go back to Union Station. In fact, I will
probably always go back there if I'm in DC. Its easy
to get to, and every form of public transportation
leaves from there. Its a tourist's dream, even if it is,
by-Ohio-standards, outrageously expensive. I have
to say, by DC standards, the place is a bargain. Best
of all, Union Station started our day out perfectly.
When I pulled in, the same lovely woman was working
the booth from yesterday. As she looked up, she
gave me big grin, and said, "Welcome Back!" No
better way to begin such a big, important day. Never
doubt the power of a smile...
Soon enough, we were standing in front of the
infamous kidnapping elevator. In addition to its faulty
wiring, its incredibly small. We decided for sanity's
sake, we'd split up and go in two shifts. Besides, in
the awful event that one of us might get stuck...there
would be someone "on the outside" to be sure to get
help! Oh yeah, we're thinkers.
Aurora and Avalon went first, so I could reach in and
push the correct button for them. Poor Avalon, her
panic attacks are really pitiful. It was only a few
minutes before Ambrosia, Anam, and I joined them on
the Mezzanine, but Avalon was already freaking out.
She is nearly paralyzed with fear of losing me in any
type of crowd/new environment. She tries to be
brave, but the panic is overwhelming. She'll make
repetitive hand movements, and actually shake with
fear, if we don't get on top of it quickly. Its as sad, as
it can be frustrating. Hopefully, when we get Avalon
back in therapy - we'll all learn to handle her fears
better.
Anyway, because Avalon had been so worried, we all
decided it would be better if Ambrosia, Anam and I
went down the next elevator first, so Avalon knew I
would be waiting on her. It was a great plan, until that
awful 30 seconds that Aurora and Avalon had to sit in
the elevator, with the doors closed...fully capable of
hearing our conversation on the other side of the
doors. Yeppers...you can count Aurora in as a total
elevator-phobe now. We've fully brought her to the
dark side of claustrophobia and elevatormares...
Thankfully, we didn't have time to ponder the evils of
the tiny, squeaky, man-eating elevator. We were
running late for breakfast, and needed to hot-foot it
to the hotel. It was fun to see Union Station through
Aurora's eyes though. She had that same WOW
look that I'm sure I did on Monday. She begged to
stop and look in a few of the shops later on, when we
had more time. I promised.
This time, I actually knew where we were going. We
managed to make it out the front of Union Station,
across a few streets, and straight to the hotel, in a
very short time. We actually got there in plenty of
time to get our food and sit down before the speaker
began. Go us!
OK, I have to give a shout out to our friends Rourke
and Jessica. They actually stayed in the host hotel
with their kids. Since they were still peacefully asleep
when our day started, they were able to get to
breakfast on time. They were kind enough to save
room for us at their table, so we latecomers actually
had someplace to sit. Ah....the joys of a good friend,
or two!
We gathered our food, and attempted to convince
Avalon and Anam that eating was a good idea. The
two of them were so out-of-whack from the morning,
they didn't exactly cotton to the idea of strapping on
the feedbag so early. The problem is, we needed
them juiced up for the day...so there was a great deal
of cajoling that went on. Thanks to that, I missed the
vast majority of what the parent speaker said during
her portion of the morning. I did manage to catch
most of the rest of the program though. It was a bit of
a recap of the second session from the day before,
along with a summary of what we could expect from
today. This year, CureSearch paid for lunch for all
the participants in the new Capitol Visitor's Center, so
Kate had to explain how we needed to meet her to
get our vouchers. I was THRILLED with the paid
lunch - that was one financial hurdle I didn't have to
think about.
Soon enough, it was time to walk, en masse, to the
Taft Memorial Park for the "Rally to Reach the Day".
However, before I go on to describe the Rally, I
should probably stray from the storyline again to
explain something. (big shock, right?) All the
participants of Reach the Day were given T-shirts to
wear the day of the congressional meetings. The
shirts were emblazoned with that beautiful rainbow
logo that I linked to yesterday. That is, the
normal-sized people's shirts were beautiful. When I
asked for my hooter-holding size 2x, I was told that for
some reason, the 2x shirts didn't come in. I was given
a plain white t-shirt, with a tiny little "CureSearch" logo
on one side of the chest. Great.
I certainly don't hold CureSearch responsible for my
less-than-stellar T-shirt option. First of all, they didn't
print the shirts, they merely ordered them. Besides,
the sweet volunteer did offer me an XL, in her
she-had-no-idea-what-a-sausage-I-would-have-been
effort to be kind. More important, its most definitely
not CureSearch's fault that my plump self requires a
2x, that fault lies squarely with my love of chocolate
and hate of sweat. But I digress...
The honest truth is, I took the lack of a
Rubenesque-sized T-shirt (do you like how I turned
'hefty-sized' into something glamorous?) as a sign
that my instincts were right. You see, I knew when I
signed up for Reach the Day that we'd be receiving
t-shirts, and that we were supposed to wear them to
our meetings. The thing is...I wasn't particularly
happy with that idea.
In my mind, we were all there to do a really important
job. I wanted my representatives to listen to me...not
merely nod their heads politely and do the 'pity tilt'. I
cannot ever remember seeing congressmen on the
local news wearing t-shirts on the House floor.
Frankly, I can't remember seeing Deborah Pryce
wear one of her own "Hope Street Kids" t-shirts at her
own HSK fundraisers. You just don't do that. When
you're in business or government, you dress
appropriately. I mean, c'mon...can you imagine
Hillary Clinton showing up for a meeting in knee-high
boots and a leather mini? No! (I mean,
really....NOOOOO....) The way I saw it, if I wanted the
liaisons to take me seriously, I should probably look
like I was serious, not like a soccer mom there to
gripe. In my heart of hearts, I would have liked to
have worn a suit. But...knowing how far I had to walk,
how many kids I had to wrangle, and that the rest of
the posse would be wearing t-shirts and shorts...I
opted for a nice skirt and shirt with dressy sandals.
This opinion, by the way, puts me squarely into the
category of 'Rebel'. Nearly everyone else at Reach
the Day played their part respectably and wore their
t-shirts. Everyone, that is, except the speakers, the
doctor from Ohio who is the head of our Heme-Onc
department, and the paid lobbyist for CureSearch. It
would seem that the movers and shakers rather
subscribed to my approach. If you want to be taken
seriously...look like you're serious.
Its certainly not that I didn't think the shirts were
FABULOUS. They were. Its not that they didn't make
for great photo opportunities at the Rally. They did.
Its not that they weren't helpful in spotting other RTD
members as we crisscrossed Capitol Hill. They were.
I guess my point is, I did not feel like I could present
myself seriously, when I know how ridiculously
over-boobed I look in a T-shirt. So, while I don't know
what the proper answer is, I know I personally chose
to follow my heart - and run away from the 'T-attire'.
My kiddos all wore them to the rally, but shhhhh....we
took them off soon after. (don't tell!)
So...after my long-winded explanation of why you
won't see me in any of the Rally pictures...I should
probably finally go back to my description of the
Rally. We left the hotel, and walked as a group to
Taft Memorial Park where the rally was to take place.
As marches go, we were a pretty small lot. DC hosts
a march of one kind or another (or several at a time)
nearly every weekend that the weather is warm.
Marches can be several dozen people, to tens of
thousands, depending on the cause. In the grand
scheme of things, I honestly think the politicians are
dead-numb to the whole concept of a "march". Kind
of like me trying to count or categorize my freckles.
When you have so damn many of something...the
novelty of the thing eventually wears off. I suspect
our little parade meant less than frog hair to anyone
but the people doing the marching.
That being said, I can say its exciting to finally be able
to say I've "marched on Capitol Hill" for cancer kids.
Our children are so powerless in their battles, it was
glorious to feel like we were finally actively doing
something to help them. I can't fathom what those
steps must have meant to the Angel Parents. For
them...holding their posters, wearing their photo
buttons...its a symbolic act of being able to give to a
child they can no longer hold.... The symbolism is not
lost on me. Sadly, it is on all but those who are there.
The kids all seemed to enjoy the 'parade to the park'.
Ambrosia proudly carried her sign, Anam was
moderately quiet in his stroller, and Avalon didn't
panic too many times in the couple-block walk. They
all seemed to be caught up in the moment, enjoying
being a part of something. The walk to the park was
roughly the same as the walk to the hotel from Union
Station, so it wasn't bad at all. (thank you, thank you,
thank you...)
Once at the park, we all gathered around a small
stage, waiting for the congressional delegates to
arrive and give their speeches. In the meantime, we
posed for pictures, checked and re-checked our
schedule for the day, and wondered just what it was
all going to be like. All too soon, I had my answer.
The following should have been my karmic sign to
run...
We were intently listening to the first speaker, when I
heard it:
"Mom? Mo-om.... Mom! I haf to poopy on da potty."
"What?"
"Mo-om. I haf to POOPY on da potty!"
"Really? Now? Are you sure?"
"MOM! I haf to POOPY ON DA POTTY!"
"OK...."
Remember, we were, at that particular moment,
smack dab in the middle of Taft Memorial Park,
smack dab in the middle of Washington DC, snugged
up right next to the Capitol. And when you read,
"park", make no mistake, this is NOT a
kids-play-mom's-relax
potties-are-available-for-the-public park. Nope. This
is a pregnant patch of grass that surrounds statue
#2081 in the glorious District of Columbia. (otherwise
known as parcel twelve in the 'Dieties in Concrete'
brochure...) In other words, there 'ain't' no potty in
sight...
Luckily, Anne had warned me about just such
scenarios long before we set sail for DC. Anne's
foreshadowing, and my knowledge of the
johnny-come-lately approach of potty training 2 year
olds, is what prompted me to buy the folding potty I
described on day one of our trip. So, its not that I
wasn't prepared...its just, honestly - did he have to go
now?
So, much to the snickering of his rotten
sisters...Anam and I set off in search of a quiet little
spot behind a tree, or down in a little grotto or
something - to set up his magic traveling potty. With
his long T-shirt and the miniscule size of the
super-pooper - I knew no one would ever know what
we were doing. At least, I thought they wouldn't.
As I wondered the park, spying for the perfect
secret-ninja potty spot - Kate, from CureSearch,
asked me if I needed something. I quietly apprised
her of the situation, and of my ready-to-serve
remedy. Rather than hear how prepared and
supermomish I am - she began to fervently admonish
me against my gameplan. Turns out, the Capitol
Police are vigilant and rather unyielding in their
approach to public indecency. Kate warned that I
would likely be ticketed! Can you imagine? Ticketed
for public indecency...in Washington DC...for my 2
yo.. Gads! I was in trouble.
Kate then was trying to show me a restaurant a few
blocks away that I should try to sprint to. As she was
trying to help me, a sweet man came up and asked
what the problem was. Kate filled him in, and he
concurred with her assessment. Worse, he went on
to say the restaurant would never let us in.
Meanwhile, "Mo-om...I haf to POOPY on da POTTY!"
was continuing at a rather frantic pace.
After dropping the bomb that the restaurant would be
a bit too 'Mary at the Inn' for my taste - the wonderful
man offered to help - and take us to his office. Yes,
you read that right - take us to his office, which
thankfully, was only a few blocks away as well. And
thus our 'Jog to the John' began.
First of all, I should say, the lovely man was 6'2 if he
was an inch. To Anam, he was truly just shy of a
giant. He was also dressed impeccably, looking like
he just stepped out of the pages of High Style. We
were quite the trio, pudgy out-of-breath, out-of-shape
mom, psuedo jogging behind Superman-in-a-suit,
while nearly dragging along my tiny blond haired imp,
whose T-shirt was so big, it resembled a formal gown.
Seriously, I would have paid to have us on video.
Here we were, half jogging/half dragging - with
Superman occasionally turning around to say, "Hold
on little guy! You can do it!" The whole thing was so
far past funny - I can't quite do it justice.
A small eternity, and quite possibly a myocardial
infarction, later...we finally reached the office building.
On theTibetan Death Treck there, I learned that our
potty-benefactor was, in actuality, the "hired gun" for
CureSearch. Superman is the paid, professional
lobbyist for our cancer kids. In other words, a
smooth-talking, political-walking pro who pumps
hands and schmoozes ego maniacs to get money for
our kids. Neat! Who knew one of those could be
nice? I'm here to report they can, and he was.
Check, check for another lesson learned in DC.
Once inside the building, I got a brief glimpse of how
'the other half' lives. I'm telling you - that bathroom
was downright swanky! Yes folks, I'm such a dork I
actually took pictures in it. Better yet, I took a paper
towel! No - I'm not kidding. The things were so
fabulous when I dried my hands - I took an extra one
to show people. I knew no one would believe me
when I described them...
Oh, and it turns out - Anam was telling the truth.
While he often says "Poopy on the potty" for any
potty business....this time he was serious. Poor
Superman - he did such a nice thing for us...and we
left such an awful thing for him. I suppose its a good
thing he had to go back to the Rally with us...
So, post-poo, the Potty Team headed back to rejoin
the herd. On the return trip, I learned that Maryland
driver insanity is not limited to behind the wheel. Oh
no...they take their nuttiness with them! We exited
Superman's building, and he walked into traffic. Not
kidding here - he literally just walked into traffic! Oh
sure, he held his hand up and halfway looked at the
cars - but he truly just walked right in front of moving
vehicles...with us in tow. All I could hear in my head
was the evening news teaser, "Ohio Mother totals car
with her fat butt while returning from Potty Parade,
details at eleven." Somehow, the potty-gods smiled
on us and kept us safe. The way I see it they owed
me - we weren't even an hour into our day and I was
already sweaty and stressed. The least they could
do was keep me in one piece.
When we met back up with the girls, they were thrilled
to see that we hadn't run for the border after all.
Thankfully, the potty gods had also managed to keep
Avalon from having a full-blown panic attack, so all in
all, it was as good of an outcome as I could have
hoped. Sadly, I missed a few of the speakers.
According to Aurora, the young man that spoke was
the most powerful speaker she's ever heard. He is a
childhood cancer survivor, and in particular, one who
beat incredible odds. He truly touched Aurora's
heart. In a completely out-of-character moment,
Aurora insisted on finding him after the rally - to give
him a hug and tell him how much his speech affected
her. She has asked me to try to get a copy of it for
her. If I ever do, I'll be sure to post it.
There were plenty of speeches: the head of
CureSearch, the head of the COG, Deborah Pryce
about Hope Street Kids merging with CureSearch,
and a childhood cancer friendly senator and
representative, about the new pediatric cancer
caucus that is being formed. We really are turning a
corner on Capitol Hill - we're poised on the brink on
something big...we just need a few more people to
help us shove them off the cliff...
Its funny, that's the exact analogy I always use when I
talk about having a child diagnosed with cancer.
During the 'in-between', the time after cancer is
suggested ~ but before you have the official
diagnosis, you feel like you are balancing on the
edge of the highest cliff there ever was. As soon as
you hear those infamous words, "your child has
cancer" - you are unceremoniously shoved off that
cliff - never to go back. It doesn't matter how hard
you try - you will never stand on that particular ledge
again. For even if your child survives, your life will
never be the same as it was before that fateful day.
There will always be a shadow of "what if?" in the
deep recesses of your mind, and those terrible
demons use any chance they can grab to sneak out
and haunt you.
I kind of see this time in history, as the 'edge of the
cliff' for pediatric cancer. Our kids have been
invisible for so long. Sure, St. Jude has put their
faces on brochures and commercials...but they've
always seemed almost surreal. Our children have
been easy to ignore and relegate to 'someone else's
problem'. Thanks in a large part to Deborah Pryce,
those days are gone. The people that run our
government are finally starting to 'see' our children. I
truly think the whole group of them is on the edge of
the chasm. A few wise, caring ones are trying to leap
off. The problem is, the would-be leapers are being
held back by people who are blindsided by
hate/fear/guilt about foreign matters. The few men
and women who want to jump, have been hampered
by people who would rather send money to any
country other than ours, for any child-related cause
that isn't cancer. It truly is up to we cancer families,
and those people we have touched, to band together
- and SHOVE the rest of Congress off that damn cliff.
We need to lock arms and force them to take the leap
of faith to heal the children at home, then tackle
everyone else's problems. I guess you could say, I'm
walking around every day with a giant metaphorical
stick, ready to whack every soul I meet into that
chasm that will allow them to care...
The sad thing is, its not just Congress. Cancer kids
are an unknown entity to most of society. Why don't
we talk about kids with cancer in health class? Why
aren't schools having students raise money to help
kids just like them? Don't get me wrong, some are.
We've met some amazing young people, that would
melt the heart of the abominable. Then again, there
is still a lot of work to do.
We weren't the only ones on Capitol Hill today.
Everywhere you looked there were teens in purple
T-shirts. I never had the time, or honestly, the
interest, to find out what they represented. All I knew,
is that they obviously outnumbered us by several
factors.
One of our moms was a far better human than I, and
did stop to talk to them. The irony is not lost on me -
by putting my head in the sand about their cause, I
committed the same exact evil I'm griping about. I get
it - no one needs to call me out on it. Had I taken the
initiative, we could have shared, and educated each
other. Count it as another lesson learned for me.
Anyway, Mimi (King Julian's mom) wrote about her
encounter on Julian's site. I hope she'll forgive me for
borrowing her words, but she said it all so eloquently.
**************************
Posted by Mimi - King Julian's mom
DC
Posted Jun 26, 2009 9:11pm
...As far as the CureSearch event, it was very interesting...
Most parents I saw there were parents of angels , which in
a way made me happy, because I feel it is our duty now to
fight for the kiddos still in the fight and their families and
obviously I am not the only one thinking that way. It feels
like we are responsible to make things happen while they
are still physically fighting for their kids lives... Also ,
friends of ours who are not directly touched by childhood
cancer came to support us...But it isn't enough. I wish
everyone felt concerned by this disease , I wish teenagers
learned about it in school and would take it to heart to raise
awareness. I know I am going to open a can of worms
with this , but seeing hundreds of teenage kids there on the
hill , meeting with Reps and fighting for children in Uganda
used in the local mafia made me feel ill , especially after
talking to a few of them who had no clue children die of
childhood cancer every day ... We are teaching our
children that their own do NOT come first ... These kids
could be our reps some day and I don't even want to think
how they will take care of our country ... If they had been
told about our kids here , dying of cancer AND the ones in
Uganda and picked to help the kids in Uganda it would be
fine, but they had NO clue!!!! I guess it is easier to teach
them about something far away and shelter them from the
horror happening next door...
And when i say I worry about when they start running our
country , it is because a couple of the staffers we met in
the house had no more clue than those kids did... The first
one we met nodded the whole time we talked with a smirk
on his face , and when we were done just said "Well things
are tough right now, we don't have any money " Rather
frustrating for a first meeting...
It got better for a while .A couple of ladies knew what we
were talking about, one of them got very teary after we
shared our children's stories and encouraged us in pushing
forward with our mission. The emotions ran high but we
did it!...
******************************************************************
Unfortunately, I never managed to meet Mimi during
any of the RTD meetings. I've emailed with her about
a different post of hers I would like to put on Avalon's
site, but I never managed to hook up with her in DC.
You can definitely count that as a 'regret' for me. I
would sincerely like to wrap her up in a giant hug...
For now, back to the events of the day. After the
speeches were done, it was time to head off to
meetings. We took a few minutes first to say some
"Thank You's" and take a few pictures. As I
mentioned before, Aurora desperately wanted to chat
with the young man who spoke. I made sure to find
my Super-potty-man again for another expression of
mommy-gratitude, and finally, we horn-swaggled
Deborah Pryce into grinning for a picture.
Its a funny thing. I have virtually zero interest in
celebrities. I honestly do not understand the concept
of autographs, and can only imagine one or two
people that I would be so impressed to meet, I might
be tongue-tied. (Mikhail Gorbachev being one of
them - really, I'm not joking, normal celebrities mean
zilch to me) So the fact that I was nearly desperate to
pose for a picture with the kids and Deborah Pryce is
humorous to say the least. I suppose the only way to
describe it is that I'm GRATEFUL to her. Politically,
we're pretty opposite. But at the core of our beings,
we're the same. We've faced the same demons...and
she lost the war with hers. I have a place in my heart
for her and the moms like her - that I just can't
explain. I'm so impressed by her dedication to our
kids, that I'm awestruck. Deborah took the most
painful event in her life, and chose to wear it publicly -
for the good of those weary souls that will follow
behind her. Politics be damned...she will always have
my 'vote'. I'm not impressed by her position, her
power, or her connections. I'm impressed by the size
of her heart...
After the cheesy picture with Deborah that you see
above, it was finally time to head off to our official
meetings. CureSearch schedules the meetings for
you. They organize the RTD registrants by
geographic location, and then contact the
appropriate offices to arrange meetings. We were
scheduled to attend our meetings with: Rourke,
Jessica and their children: Riley, Hannah, and
Duncan, with Dr. Thomas Gross - who is the head of
the Heme-Onc department at Nationwide Children's
Hospital, and with another party none of us had ever
met. Although we were scheduled that way, it turned
out that CureSearch pulled Dr. Gross to go meet with
several senators - and work his magic at levels far
above ours. Fair enough.
We were scheduled to meet with 6 representatives
from Ohio. Actually, we were scheduled to meet with
5 liaisons and one representative, but as I explained
before, we were perfectly fine with that. After the
Rally, we had a little bit of time before our first
meeting. We split from our group to go take some
pictures, and all agreed to meet up at the appropriate
time at the first Representative's office.
The pictures you see to the right are the ones we
took before our meetings. We currently have two
people we LOVE VERY MUCH who are both
undergoing treatment for relapse. Joe and Christina
mean the world to us. We wanted them to know, we
were in DC fighting for them. We decided to show
them that we took them 'with us' to Capitol Hill. The
pictures of the girls holding up the name signs, are
taken behind the Capitol, on our way to our first
meeting. Both of these kids (don't yell at me Joe and
Christina...you are "kids" to me!) represent the best
of what humanity has to offer. Both have bone
cancers, although they have different ones. Both
are, again, waging terrible battles against the Beast.
And yet, these are two of the most life-affirming,
loving, positive people you would ever want to meet.
If my children grow up to be half as sweet, generous,
and loving as these two...I will consider my life as a
mother a rousing success. There are no two people
I would rather show to represent pediatric cancer. It
is my deepest heartwish that we'll all go to Capitol Hill
together some day, with the two of them perfectly
healthy...and with cancer as a distant memory. Joe
and Christina have our hearts...and this was our
small effort to show them that.
You can also see, we held Avalon's name on Capitol
Hill. We wanted to represent her struggle, and how
far she's come. With my entire soul, I beg the
Universe that she'll come here many, many more
times to hold that sign. Please send a prayerful wish
to the Heavens for that. I don't want to walk these
paths as an Angel-Mom...
After our picture silliness, we finally headed off to our
first meeting. I suppose I should describe how and
where you meet with your Congressmen. On either
side of the Capitol Building, there are Congressional
Office Buildings. The North side of the Capitol has
the three Senate office buildings, the South side has
the three Representatives' office buildings. We were
lucky to only be meeting with Representatives, it cut
down on the running that some families have to do. If
you'd like to see a map of the Capitol and its office
buildings, and a description of how and why they are
named, I've scanned in the papers we were given.
With the stroller and wheelchair, we had to enter
Cannon, our first building, clear around the side, in a
wonky ground level entrance. Getting in was no easy
feat, you have to go through tight security. Of
course I don't mind, I'm actually pretty dad-blamed
happy they x-ray everything and metal-detector you
to death. Thank you very kindly, I appreciate the
efforts to keep my kids and I from being blown to
smithereens. However, unpacking umpteen zillion
things from the stroller, wheelchair, and two
backpacks - was a tad time-consuming. Not to
mention the typical mommy-has-a-heart-attack any
time Avalon gets near a metal detector. Sure, sure, I
probably over-react. Yeah, well tell that to my
adrenals. Maybe they'll listen to you.
I should note though, the guards were really nice.
They laughed at our pile of stuff, and were very
patient with us. I'm sure moms and piles of kids aren't
their usual customers - but they were truly kind, and
did a good job of directing us toward the proper
elevators.
Oh yeah - there's that word again...elevator.
Although, we all agreed - this was probably the ONE
PLACE in DC we could count on the elevators being
in perfect working order. Can you imagine a bunch of
congressmen being trapped in an elevator? Hah!
Tee hee...it is to laugh. We all felt sure we were safe.
Interesting thing to note about the Representative's
office buildings. First of all, they are nothing to write
home about. They are marble and limestone
monstrosities, but not really 'fancy' or swanky. The
hallways felt more like an old high school to me than
anything else. I don't know what I imagined, but it
wasn't this. Also, offices are assigned based on
seniority and position in the House. We were in
everything from a freshman congresswoman's office
(Rep. Mary Jo Kilroy) - to that of a very senior Rep.
(Rep. John Boehner). Rep Kilroy's office was little
better than an old closet, in a small house, in farm
country. Rep Boehner's office was spacious,
well-appointed, and downright luscious. His looked
like I thought they all would. Hers was something out
of a bad movie. I never would have guessed. In my
ever-so-fair mind, I presumed they would all have the
same amenities, just be decorated differently. I'm
sure Rep Kilroy's staff, who have to take lessons in
contortionism to work there, would be the first to
laugh out loud at my erroneous presumptions.
Lesson #408 of Washington DC - it really is all about
who you know.
For each of our meetings, we would enter the office,
and explain to the secretary who we were there to
see, and what organization we were representing.
From there, each meeting was different. Jessica and
I tried to get the main ideas of the "suggested talking
points" across - but we really didn't need to go into
much detail. Our liaisons were all well-versed in our
requests. Several of them were also VERY
supportive. We briefly told them our stories, then
kind of felt our way to some common ground to try to
help them understand. Our meetings went from
touching, to hysterical, to heartbreaking, often in a
matter of minutes.
Our first liaison, R. Mann, worked for Rep. Zack
Space. Mr. Mann was young and absolutely
adorable. OK, I probably shouldn't call a
congressional liaison 'adorable' - but he was! He was
genuine, kind, and very interested. As a group, we
were just getting our feet wet - so we stumbled a bit -
but I think we recovered well. Mr. Mann dealt with our
gang of children with not only kindness, but with true
heart. He laughed as we bribed Anam endlessly with
various forms of sugar.
You see, we knew long before we left Ohio that Anam
would be a Master of Mayhem the entire day. I knew
it, and I planned for it. I aimed for the Capitol armed
with enough sugar to keep an entire elementary
school jacked up for a week. I had Dumm Dumm
suckers, Nerds, Bottlecaps, and Sweettarts. And
believe me, I had PLENTY of all of them. The plan
was to keep a constant supply of sticky, sweet stuff
flowing his way - thereby distracting him and
simultaneously silencing him. We could deal with the
fall out later.
As Jessica and I talked, Aurora kept the suckers
coming. Mr. Mann found the whole thing riotously
funny, explaining to us that his mother does at-home
daycare, so he's used to having lots of toddlers
around. He really seemed to be touched, when I
explained that by the time Avalon was Anam's age -
she'd already been on treatment for over a year.
Suddenly, you could see he was processing that in
terms of the children his mother cares for. It seemed
to really sink in.
Mr. Mann was also very kind and supportive to the
mother who was part of our group, but whom we had
never met. She had just lost her son 6 weeks to the
day before today. Her pain was still very raw,
tempered with the anger of a mother who's been
robbed. Mr. Mann did an admirable job of trying to
reach out to her.
It wasn't until we left the office, that my lobby-mates
told me what I had missed while I was talking.
Apparently, Anam had been using one of his suckers
as more of a wand than an oral fixation. He had been
madly waving it around in all of its sticky
glory...narrowly missing the expensive suit jacket that
was hanging above his stroller on the coat rack. You
see, Rep Space is one of the newbies - his oversized
closet was merely an office wanna-be. The space
shortfall nearly teamed up with a bored toddler to
cause a hefty drycleaning bill. Luckily, we averted
disaster. Whew! Then again, the whole thing was
worth a couple of giggles.
From Rep Space's office, we headed to Rep. Tiberi's
digs. Rep. Tiberi is actually my Rep, and I'm thrilled
to say - very much a supporter of our cause. His
liaison, L. Vogtsberger, was extremely
knowledgeable. She was also very interested in
hearing our stories, and asked great questions. We
had tried to get the children to speak at our first
meeting, but it was too overwhelming to them.
However, Ambrosia warmed up to Ms. Vogtsberger,
and was willing to finally speak up. At one point, Ms.
Vogtsberger asked her what it was like to have a
sissy with cancer. What was the hardest part?
Ambrosia tried to be a big girl, and talk very
maturely. But suddenly, the enormity of what she was
remembering really hit. She teared up as she
described sissy turning two in the hospital, and how
sissy missed her birthday last year because she was
in the hospital after surgery. Ambrosia talked about
how scary and sad it is to have to go home without
your sissy when she's sick. She said her sissy was
her best friend, and that it makes her so sad when
she's not there...
Its killing me again just trying to tell you. I think it may
be one of the first times that Ambrosia has faced her
own fears/heartbreaks head on. As she teared up,
so did Ms. Vogtsberger. Heck, so did we all.
Ambrosia was so honest - so pure, I wish I had a
video of it to share. There was no planning, no script
- just honest heartache, from a little girl who's
seen/experienced far too much for only being 8. The
whole thing was a bit too much for Hannah - after all,
'her' Eden is gone. Her agony is something you just
can't fix. If Ambrosia could surprise and shock me
with her pain, I cannot imagine what Hannah must go
through. They were moments in time I wish we hadn't
a reason to live, but I'm glad we were able to. Most of
all, I'm glad they happened with a liaison who really
seemed to care. I think she'll really fight for us.
Our next stop was Rep Mike Turner's office. This
time, we had to leave Cannon and go to the
Longworth building. We had to part company with
our lobbying buddies, because they could all go down
the front steps, and we had to detour out the side of
the building. Of course, they also had about 1/10th
the amount of stuff we did, so they fast-tracked it
through the Longworth security stop too. Ahh...such
is life with my brood. Nothing seems to go terribly
'quickly', except the hours in a day when I have a long
to-do list.
At Rep Turner's office, we were greeted by J. Harrell.
I believe he was the most knowledgeable about our
particular cause. He assured us that Rep Turner
supported our interests, and he was fully up to snuff
on everything we came to talk about. Actually, it
became one of the most 'fun' visits - because it was a
"preaching to the choir" kind of meeting. We didn't
have to "sell" Mr. Harrell, so we could kind of let our
guards down a bit and laugh. We all told our stories,
and used the bits and pieces from our previous
meetings that had really worked. We launched into
an interesting side discussion about health care
reform. I don't remember who started it, but we
ended up kind of round table comparing what we had
given up/lost due to our child's cancer. In a really
sick, hard-to-describe way, we kind of bonded and
laughed over how we all answered some things
exactly the same way. (destroyed finances, things we
gave up, etc) We even shared some 'inside'
jokes/comments with Mr. Harrell, things cancer
families don't necessarily share with 'outsiders'. We
all learn early on, only other pediatric cancer people
"get" our jokes sometimes. Everyone else looks at
you like you've grown a second head. Glad to report,
Mr. Harrell actually laughed with us.
After Rep Turner's office, we had a long enough
break to be able to go to lunch. We left Longworth
and headed across the street to the Capitol, looking
for the new Visitor Center entrance. While we were
easily able to find the elevator down to the entrance,
we weren't quite prepared for what we found.
Because security is so tight at the Capitol, the line to
wait to go through security, was stretched all the way
back up the stairs, to the very level we'd just ridden
the elevator down from. We were stuck firmly
between a rock and a hard place. I couldn't leave the
kids at the bottom of the stairs, in the full sun, while I
went to the top to wait in 40 minutes in the line, and I
certainly couldn't send them up to wait. I was ready
to give up, when our new lobbying friends decided it
was time to chat up the security guards.
As it turns out, we were all dorks. There are tunnels
that connect the office buildings with each other, and
with the Capitol. Once you've been checked through
security at one of the buildings, you can use the
tunnels, and not have to be checked again.
(because you have never "left" the building) In other
words, we didn't need to unpack/repack at Longworth
- we could have easily tunneled it over. Now, wouldn't
that have been nice of the guards at Canon (or
Longworth) to tell us? Then again, we could have
read it ourselves...on the office information sheet!
Duh.
The guards ended up taking pity on us, and allowing
us in the next security group, without making us wait
through the entire line with the school and tour
groups. We thanked them profusely and headed on
in. Once inside, we ran into several more extremely
nice guards, several of which had a lot of fun teasing
me about my large metal hairclip. The stupid thing
set off all the metal detectors. I wore it because I was
having a bad hair day - it never occurred to me what
it would do! Never mind the fact that the hair thingy
looks like a weapon - its a sharp wooden stick that
winds through a metal holder. I'm grateful that pudgy
housewives with 4 kids in tow look pretty
non-threatening. I might have had to 'go postal' if
they made me take my hair out!
After we had unpacked and repacked for the third
time, we found our way to the restaurant. We easily
found Kate and the vouchers and headed for food.
Aurora staked out a table for us, and sat with Anam,
who had fallen fast asleep on the way to lunch. I
can't believe he could manage to close his eyes with
all the sugar he'd had - but somehow, he did.
Our lunch vouchers entitled us to either hamburgers
and fries or chicken strips and fries. We also got
fresh fruit and a drink. Unfortunately, it took so long
to get through the line, that we ended up having to
choke it all down pretty fast - but it was really good
food. Best of all, I didn't have to pay for it, and it
wasn't peanutbutter or granola bars. The kids were
thrilled!
After lunch, we realized we were running low on time.
We all decided we weren't fighting security again, we
were going to find the elusive magic tunnels if it killed
us. We stopped the first security guard we saw, to
ask directions. It turns out, he was the guard who
had started teasing me about my killer barrette. He
told us we really weren't supposed to access the
tunnels from the visitor's center, but he'd walk us
down there personally to keep us from getting in
trouble. Once again, we'd run full tilt into a caring,
thoughtful, sweet person. So where were all those
cranky, villianous DC-ites we'd heard about? I have
no idea, but I'm darned grateful for the helpful souls
we met instead.
We soon followed our Tunnel superhero down into
the depths of the Capitol. It would be more correct to
call them the "bowels" of the building - as they were
winding, stinky, filled with stuff, and just plain creepy.
Thankfully, I was too focused on keeping up with
Tunnelman to acknowledge my whopping case of
claustrophobia. Sometimes distraction and a tight
schedule really can trump terror.
But no matter how icky we all found the tunnels, they
were a real godsend for our timetable. In no time, we
were waiting for elevators in Longworth, headed for
meeting number 4 of the day. I won't lie, not having
to unpack and repack the slumbering Anam was
nothing short of a gift from God. Toddler snores
meant an easier meeting, no way around it.
Pretty soon, we found ourselves at the office of Rep.
Mary Jo Kilroy, the freshman congresswoman from
Columbus, who took over Deborah Pryce's seat. I'll
be perfectly honest, I fully expected a hostile
environment. Rep. Kilroy's election campaign against
Rep Pryce was epic. The mudslinging was so thick,
they actually made national news. More to the point,
they made the national agenda for evening talk
shows. When you've hoisted enough dirt to be
worthy of Leno jokes, you know the battle was ugly.
Although Rep Kilroy lost the initial election, she
carried on to win the next one, when Rep Pryce made
the decision to step down. It shouldn't be a surprise
then, that I had my doubts about whether Rep.
Kilroy's would be willing to carry on with the cause
that was the 'baby' of her much-aligned predecessor.
It turns out, I could not have been more WRONG.
Rep. Kilroy's team was not only well-informed about
our agenda, they were very supportive. We started
with a bit of concern, when the secretary seemed to
be caught off-guard with our to see the appointed
liaison. But in just a few minutes, we were greeted by
a friendly, lovely woman, Ms. J. Keaton. Ms. Keaton
was every bit as knowledgeable and sympathetic as
Mr. Harrell had been at Rep Turner's office. Her
questions were direct, and she was very engaging
with the children. I never expected such a warm
reception. Count it as yet another lesson learned on
my DC adventure. Nasty politics doesn't necessarily
override common sense, or deep, personal caring.
Rep. Kilroy's office proved that. Since my personal
politics lie far closer to hers, I'm proud she proved to
be so principled.
You may remember from earlier in this rant, its Rep
Kilroy's office that I spoke about being so small.
Seriously, folks, those poor people had to go out to
the hallway to change their minds...there was no
room in there for such movement. It would have been
laughable, if it wasn't so pathetic! Criminy, I don't
know how the low-on-the-totem-pole people ever get
anything done. I doubt her liaisons even have their
own desks. From the looks of it, I think her staff have
to play musical chairs all day just to fight for a chance
to sit down...
With such limited space, it wasn't hard to make the
decision to leave Aurora in the hallway with the
sleeping Anam and his gigantic stroller. Actually, the
stroller would have had to stay out there, regardless.
There was simply not enough floor space for it to
cross the threshold. Since little man was passed out
in it, big sissy got shafted and had to stay with him. It
was also fortuitous that two of our lobby-mates had
somehow not made it to the meeting after lunch.
Seriously, there would have been no where to put
them!
While it might not be terribly interesting that Aurora
was left holding the short straw, what happened to
her as a result of it, was. After a reasonably long
meeting with Ms. Keaton, we all emerged excited
about how supportive she'd been. We knew Aurora
was probably bored - but we had no idea what we
were in for. As it turns out, Aurora had way more to
say than we could have anticipated.
Shortly after we'd all packed into Rep Kilroy's office,
Aurora plopped down on the floor next to the stroller,
and took out her Ipod. Suddenly, she was accosted
by a female security guard, who demanded she
STAND UP. Aurora was told, on no uncertain terms,
that it was absolutely FORBIDDEN to sit in the
hallway of the building. The guard then demanded to
know why she was there in the first place. Aurora
went on to explain why we were in DC, that her mom
and siblings were right in that office, but that there
was not enough room for herself and her brother's
stroller. The guard went on to say, "I'd rather have
you sit in that windowsill than on the floor!" Aurora
misunderstood the verbal barrage, and made the
mistake of asking, "Oh? It's OK if I sit there? I don't
mind." Wrong answer. The guard went on to
demean her, berate her, and deride her for her poor
manners and disrespect. During the entirety of our
meeting, this same guard constantly circled back to
stand and stare at Aurora, making sure she never
again committed the "evil" of sitting on the floor of the
sacred hallway.
that it started at what my sister would call, "the
butt-crack of dawn." I had to wake up, round up and
hype up all 4 kids in time to make it to a 7 am
breakfast at the host hotel.
OK, so 7am may not sound like the earliest of
mornings to some of you. Oh contraire, my friends.
For you see, trying to arrive anywhere in DC at 7am,
puts you square in the middle of that dreaded DC
"Rush Hour" - which is entirely mislabeled. In most
cities, "Rush Hour" is so named because it lasts
around an 'hour' or so. Oh no no no...DC insists on
being quite the over-achiever in this category. In DC
(and the jillion and 2 surrounding areas) morning
Rush Hour lasts from about 5 am - 9 am. Seriously.
I knew from Monday, I could physically get from
Anne's door to Union Station in about 35 minutes in
off-peak traffic. Anne and her boyfriend warned me
that peak traffic could be closer to 90 minutes. Do
the math...need to arrive by 7, need to leave around
5:30, everyone must look good for a day of
meetings.... Yep, you have now arrived squarely at
the "butt-crack of dawn". (BTW, I'm cleaning that
phrase up - my sister's actual phrase is a tad more
colorful)
Needless to say, with that kind of timing, morning
showers/baths were NOT on our agenda. We had to
live with our funky selves from the day before.
Somehow, in a manner that can only be divinely
driven, we managed to get everyone dressed,
coiffed, cute-i-fied, and the necessities packed up for
the day. All in time to leave about 10 min before 6.
I'm sure you will note that 5:50 is not 5:30. Well, I'm
also not a perfect size 6. Sometimes, you just have
to get over stuff. (We only ended up being about 10
minutes late to breakfast.)
As we hurtled, ummm...weaved, dodged,
prayed-for-our-lives...through a real DC rush hour -
Ambrosia, Avalon and I had plenty of time to warn
Aurora about our impending elevator rides. You
know how stories tend to grow over time? Funny
enough, this one was already so rotten, they actually
reported it dead-perfect. I found that hysterical.
I should note here, that Aurora was with us under
protest. Anam had been such a supreme schmuck
on Monday, that Aurora didn't want to come to DC
with him. She fought long and hard to stay at Anne's
with Anam, rather than have to wrangle him in the
halls of Congress. While it was a thoughtful and
selfless gesture, it was also out of the question.
Mommy stuck by her guns. We came to DC as a
family. We lived through cancer as a family, and we
were going to go speak for other familes...together.
Besides, Anam was a good visual tool. By the time
Avalon was the age he is now, she'd undergone more
than a year of chemo, and had three major surgeries.
She'd also had blood and platelet transfusions, IV
antibiotics at home, and weeks of hospital time. I
thought a visual reminder of a healthy toddler, to
compare to the photos we were sharing...might just
come in handy.
I should probably explain about sharing photos.
Families who attend Reach the Day are encouraged
to bring "Leave Behinds". Leave Behinds are meant
to be left with your congressperson, to remind them
why you visited, and why childhood cancer funding is
important. When we first decided to go to RTD, I had
high expectations for what lavish Leave Behinds I
would take. In the end, I was rushed and ended up
creating more of a scrapbook of images and short
statements about our life with cancer. Truthfully, I'm
glad I waited. I think the long stories, poems, and
multiple quotes from Caringbridge sites, would have
missed the mark. Face it, words upon words,
peppered with more words...are the entire world of
each Congressman. I think actually showing them the
reality of childhood cancer ended up being a much
better approach.
Rather than just printing pictures on a page, I went
ahead and had multiple copies made of most of the
photos I wanted to use. I had started out with a
rather grandiose idea of having some images lighter
(barely visible) as background on the pages, with real
photos glued on top of them with text in various
places. Yeah...I "started" with that idea. What I
ended up with were pictures glued to plain white
paper, with a few fill in pictures just printed on the
page. Actually, I'm pretty happy with it. If I go back to
RTD, I don't know that I would change much. I would
like to add explanation captions to the photos, and
make sure that all pictures are real ones, with some
glued on the pages in perhaps more of a
framed-up-scrapbook style. Then again, maybe less
is more.
All in all, I think the $40 it cost us to make the Leave
Behinds, was money well spent. If they helped even
one staffer "get it", they did their job. There will be a
link at the bottom of the page if you wish to see our
Leave Behind. Thank you scanners and
computers...I can actually show you!
OK, back to the morning mayhem. As I said before,
the little ones and I had the entire trip to regale
Aurora with our tales of woe from the day before. By
the time we got to Union Station, I think Aurora was a
dead 50/50 split between being terrified, and thinking
we were exaggerating the whole thing. She was soon
to find out.
And yes, I did go back to Union Station. In fact, I will
probably always go back there if I'm in DC. Its easy
to get to, and every form of public transportation
leaves from there. Its a tourist's dream, even if it is,
by-Ohio-standards, outrageously expensive. I have
to say, by DC standards, the place is a bargain. Best
of all, Union Station started our day out perfectly.
When I pulled in, the same lovely woman was working
the booth from yesterday. As she looked up, she
gave me big grin, and said, "Welcome Back!" No
better way to begin such a big, important day. Never
doubt the power of a smile...
Soon enough, we were standing in front of the
infamous kidnapping elevator. In addition to its faulty
wiring, its incredibly small. We decided for sanity's
sake, we'd split up and go in two shifts. Besides, in
the awful event that one of us might get stuck...there
would be someone "on the outside" to be sure to get
help! Oh yeah, we're thinkers.
Aurora and Avalon went first, so I could reach in and
push the correct button for them. Poor Avalon, her
panic attacks are really pitiful. It was only a few
minutes before Ambrosia, Anam, and I joined them on
the Mezzanine, but Avalon was already freaking out.
She is nearly paralyzed with fear of losing me in any
type of crowd/new environment. She tries to be
brave, but the panic is overwhelming. She'll make
repetitive hand movements, and actually shake with
fear, if we don't get on top of it quickly. Its as sad, as
it can be frustrating. Hopefully, when we get Avalon
back in therapy - we'll all learn to handle her fears
better.
Anyway, because Avalon had been so worried, we all
decided it would be better if Ambrosia, Anam and I
went down the next elevator first, so Avalon knew I
would be waiting on her. It was a great plan, until that
awful 30 seconds that Aurora and Avalon had to sit in
the elevator, with the doors closed...fully capable of
hearing our conversation on the other side of the
doors. Yeppers...you can count Aurora in as a total
elevator-phobe now. We've fully brought her to the
dark side of claustrophobia and elevatormares...
Thankfully, we didn't have time to ponder the evils of
the tiny, squeaky, man-eating elevator. We were
running late for breakfast, and needed to hot-foot it
to the hotel. It was fun to see Union Station through
Aurora's eyes though. She had that same WOW
look that I'm sure I did on Monday. She begged to
stop and look in a few of the shops later on, when we
had more time. I promised.
This time, I actually knew where we were going. We
managed to make it out the front of Union Station,
across a few streets, and straight to the hotel, in a
very short time. We actually got there in plenty of
time to get our food and sit down before the speaker
began. Go us!
OK, I have to give a shout out to our friends Rourke
and Jessica. They actually stayed in the host hotel
with their kids. Since they were still peacefully asleep
when our day started, they were able to get to
breakfast on time. They were kind enough to save
room for us at their table, so we latecomers actually
had someplace to sit. Ah....the joys of a good friend,
or two!
We gathered our food, and attempted to convince
Avalon and Anam that eating was a good idea. The
two of them were so out-of-whack from the morning,
they didn't exactly cotton to the idea of strapping on
the feedbag so early. The problem is, we needed
them juiced up for the day...so there was a great deal
of cajoling that went on. Thanks to that, I missed the
vast majority of what the parent speaker said during
her portion of the morning. I did manage to catch
most of the rest of the program though. It was a bit of
a recap of the second session from the day before,
along with a summary of what we could expect from
today. This year, CureSearch paid for lunch for all
the participants in the new Capitol Visitor's Center, so
Kate had to explain how we needed to meet her to
get our vouchers. I was THRILLED with the paid
lunch - that was one financial hurdle I didn't have to
think about.
Soon enough, it was time to walk, en masse, to the
Taft Memorial Park for the "Rally to Reach the Day".
However, before I go on to describe the Rally, I
should probably stray from the storyline again to
explain something. (big shock, right?) All the
participants of Reach the Day were given T-shirts to
wear the day of the congressional meetings. The
shirts were emblazoned with that beautiful rainbow
logo that I linked to yesterday. That is, the
normal-sized people's shirts were beautiful. When I
asked for my hooter-holding size 2x, I was told that for
some reason, the 2x shirts didn't come in. I was given
a plain white t-shirt, with a tiny little "CureSearch" logo
on one side of the chest. Great.
I certainly don't hold CureSearch responsible for my
less-than-stellar T-shirt option. First of all, they didn't
print the shirts, they merely ordered them. Besides,
the sweet volunteer did offer me an XL, in her
she-had-no-idea-what-a-sausage-I-would-have-been
effort to be kind. More important, its most definitely
not CureSearch's fault that my plump self requires a
2x, that fault lies squarely with my love of chocolate
and hate of sweat. But I digress...
The honest truth is, I took the lack of a
Rubenesque-sized T-shirt (do you like how I turned
'hefty-sized' into something glamorous?) as a sign
that my instincts were right. You see, I knew when I
signed up for Reach the Day that we'd be receiving
t-shirts, and that we were supposed to wear them to
our meetings. The thing is...I wasn't particularly
happy with that idea.
In my mind, we were all there to do a really important
job. I wanted my representatives to listen to me...not
merely nod their heads politely and do the 'pity tilt'. I
cannot ever remember seeing congressmen on the
local news wearing t-shirts on the House floor.
Frankly, I can't remember seeing Deborah Pryce
wear one of her own "Hope Street Kids" t-shirts at her
own HSK fundraisers. You just don't do that. When
you're in business or government, you dress
appropriately. I mean, c'mon...can you imagine
Hillary Clinton showing up for a meeting in knee-high
boots and a leather mini? No! (I mean,
really....NOOOOO....) The way I saw it, if I wanted the
liaisons to take me seriously, I should probably look
like I was serious, not like a soccer mom there to
gripe. In my heart of hearts, I would have liked to
have worn a suit. But...knowing how far I had to walk,
how many kids I had to wrangle, and that the rest of
the posse would be wearing t-shirts and shorts...I
opted for a nice skirt and shirt with dressy sandals.
This opinion, by the way, puts me squarely into the
category of 'Rebel'. Nearly everyone else at Reach
the Day played their part respectably and wore their
t-shirts. Everyone, that is, except the speakers, the
doctor from Ohio who is the head of our Heme-Onc
department, and the paid lobbyist for CureSearch. It
would seem that the movers and shakers rather
subscribed to my approach. If you want to be taken
seriously...look like you're serious.
Its certainly not that I didn't think the shirts were
FABULOUS. They were. Its not that they didn't make
for great photo opportunities at the Rally. They did.
Its not that they weren't helpful in spotting other RTD
members as we crisscrossed Capitol Hill. They were.
I guess my point is, I did not feel like I could present
myself seriously, when I know how ridiculously
over-boobed I look in a T-shirt. So, while I don't know
what the proper answer is, I know I personally chose
to follow my heart - and run away from the 'T-attire'.
My kiddos all wore them to the rally, but shhhhh....we
took them off soon after. (don't tell!)
So...after my long-winded explanation of why you
won't see me in any of the Rally pictures...I should
probably finally go back to my description of the
Rally. We left the hotel, and walked as a group to
Taft Memorial Park where the rally was to take place.
As marches go, we were a pretty small lot. DC hosts
a march of one kind or another (or several at a time)
nearly every weekend that the weather is warm.
Marches can be several dozen people, to tens of
thousands, depending on the cause. In the grand
scheme of things, I honestly think the politicians are
dead-numb to the whole concept of a "march". Kind
of like me trying to count or categorize my freckles.
When you have so damn many of something...the
novelty of the thing eventually wears off. I suspect
our little parade meant less than frog hair to anyone
but the people doing the marching.
That being said, I can say its exciting to finally be able
to say I've "marched on Capitol Hill" for cancer kids.
Our children are so powerless in their battles, it was
glorious to feel like we were finally actively doing
something to help them. I can't fathom what those
steps must have meant to the Angel Parents. For
them...holding their posters, wearing their photo
buttons...its a symbolic act of being able to give to a
child they can no longer hold.... The symbolism is not
lost on me. Sadly, it is on all but those who are there.
The kids all seemed to enjoy the 'parade to the park'.
Ambrosia proudly carried her sign, Anam was
moderately quiet in his stroller, and Avalon didn't
panic too many times in the couple-block walk. They
all seemed to be caught up in the moment, enjoying
being a part of something. The walk to the park was
roughly the same as the walk to the hotel from Union
Station, so it wasn't bad at all. (thank you, thank you,
thank you...)
Once at the park, we all gathered around a small
stage, waiting for the congressional delegates to
arrive and give their speeches. In the meantime, we
posed for pictures, checked and re-checked our
schedule for the day, and wondered just what it was
all going to be like. All too soon, I had my answer.
The following should have been my karmic sign to
run...
We were intently listening to the first speaker, when I
heard it:
"Mom? Mo-om.... Mom! I haf to poopy on da potty."
"What?"
"Mo-om. I haf to POOPY on da potty!"
"Really? Now? Are you sure?"
"MOM! I haf to POOPY ON DA POTTY!"
"OK...."
Remember, we were, at that particular moment,
smack dab in the middle of Taft Memorial Park,
smack dab in the middle of Washington DC, snugged
up right next to the Capitol. And when you read,
"park", make no mistake, this is NOT a
kids-play-mom's-relax
potties-are-available-for-the-public park. Nope. This
is a pregnant patch of grass that surrounds statue
#2081 in the glorious District of Columbia. (otherwise
known as parcel twelve in the 'Dieties in Concrete'
brochure...) In other words, there 'ain't' no potty in
sight...
Luckily, Anne had warned me about just such
scenarios long before we set sail for DC. Anne's
foreshadowing, and my knowledge of the
johnny-come-lately approach of potty training 2 year
olds, is what prompted me to buy the folding potty I
described on day one of our trip. So, its not that I
wasn't prepared...its just, honestly - did he have to go
now?
So, much to the snickering of his rotten
sisters...Anam and I set off in search of a quiet little
spot behind a tree, or down in a little grotto or
something - to set up his magic traveling potty. With
his long T-shirt and the miniscule size of the
super-pooper - I knew no one would ever know what
we were doing. At least, I thought they wouldn't.
As I wondered the park, spying for the perfect
secret-ninja potty spot - Kate, from CureSearch,
asked me if I needed something. I quietly apprised
her of the situation, and of my ready-to-serve
remedy. Rather than hear how prepared and
supermomish I am - she began to fervently admonish
me against my gameplan. Turns out, the Capitol
Police are vigilant and rather unyielding in their
approach to public indecency. Kate warned that I
would likely be ticketed! Can you imagine? Ticketed
for public indecency...in Washington DC...for my 2
yo.. Gads! I was in trouble.
Kate then was trying to show me a restaurant a few
blocks away that I should try to sprint to. As she was
trying to help me, a sweet man came up and asked
what the problem was. Kate filled him in, and he
concurred with her assessment. Worse, he went on
to say the restaurant would never let us in.
Meanwhile, "Mo-om...I haf to POOPY on da POTTY!"
was continuing at a rather frantic pace.
After dropping the bomb that the restaurant would be
a bit too 'Mary at the Inn' for my taste - the wonderful
man offered to help - and take us to his office. Yes,
you read that right - take us to his office, which
thankfully, was only a few blocks away as well. And
thus our 'Jog to the John' began.
First of all, I should say, the lovely man was 6'2 if he
was an inch. To Anam, he was truly just shy of a
giant. He was also dressed impeccably, looking like
he just stepped out of the pages of High Style. We
were quite the trio, pudgy out-of-breath, out-of-shape
mom, psuedo jogging behind Superman-in-a-suit,
while nearly dragging along my tiny blond haired imp,
whose T-shirt was so big, it resembled a formal gown.
Seriously, I would have paid to have us on video.
Here we were, half jogging/half dragging - with
Superman occasionally turning around to say, "Hold
on little guy! You can do it!" The whole thing was so
far past funny - I can't quite do it justice.
A small eternity, and quite possibly a myocardial
infarction, later...we finally reached the office building.
On theTibetan Death Treck there, I learned that our
potty-benefactor was, in actuality, the "hired gun" for
CureSearch. Superman is the paid, professional
lobbyist for our cancer kids. In other words, a
smooth-talking, political-walking pro who pumps
hands and schmoozes ego maniacs to get money for
our kids. Neat! Who knew one of those could be
nice? I'm here to report they can, and he was.
Check, check for another lesson learned in DC.
Once inside the building, I got a brief glimpse of how
'the other half' lives. I'm telling you - that bathroom
was downright swanky! Yes folks, I'm such a dork I
actually took pictures in it. Better yet, I took a paper
towel! No - I'm not kidding. The things were so
fabulous when I dried my hands - I took an extra one
to show people. I knew no one would believe me
when I described them...
Oh, and it turns out - Anam was telling the truth.
While he often says "Poopy on the potty" for any
potty business....this time he was serious. Poor
Superman - he did such a nice thing for us...and we
left such an awful thing for him. I suppose its a good
thing he had to go back to the Rally with us...
So, post-poo, the Potty Team headed back to rejoin
the herd. On the return trip, I learned that Maryland
driver insanity is not limited to behind the wheel. Oh
no...they take their nuttiness with them! We exited
Superman's building, and he walked into traffic. Not
kidding here - he literally just walked into traffic! Oh
sure, he held his hand up and halfway looked at the
cars - but he truly just walked right in front of moving
vehicles...with us in tow. All I could hear in my head
was the evening news teaser, "Ohio Mother totals car
with her fat butt while returning from Potty Parade,
details at eleven." Somehow, the potty-gods smiled
on us and kept us safe. The way I see it they owed
me - we weren't even an hour into our day and I was
already sweaty and stressed. The least they could
do was keep me in one piece.
When we met back up with the girls, they were thrilled
to see that we hadn't run for the border after all.
Thankfully, the potty gods had also managed to keep
Avalon from having a full-blown panic attack, so all in
all, it was as good of an outcome as I could have
hoped. Sadly, I missed a few of the speakers.
According to Aurora, the young man that spoke was
the most powerful speaker she's ever heard. He is a
childhood cancer survivor, and in particular, one who
beat incredible odds. He truly touched Aurora's
heart. In a completely out-of-character moment,
Aurora insisted on finding him after the rally - to give
him a hug and tell him how much his speech affected
her. She has asked me to try to get a copy of it for
her. If I ever do, I'll be sure to post it.
There were plenty of speeches: the head of
CureSearch, the head of the COG, Deborah Pryce
about Hope Street Kids merging with CureSearch,
and a childhood cancer friendly senator and
representative, about the new pediatric cancer
caucus that is being formed. We really are turning a
corner on Capitol Hill - we're poised on the brink on
something big...we just need a few more people to
help us shove them off the cliff...
Its funny, that's the exact analogy I always use when I
talk about having a child diagnosed with cancer.
During the 'in-between', the time after cancer is
suggested ~ but before you have the official
diagnosis, you feel like you are balancing on the
edge of the highest cliff there ever was. As soon as
you hear those infamous words, "your child has
cancer" - you are unceremoniously shoved off that
cliff - never to go back. It doesn't matter how hard
you try - you will never stand on that particular ledge
again. For even if your child survives, your life will
never be the same as it was before that fateful day.
There will always be a shadow of "what if?" in the
deep recesses of your mind, and those terrible
demons use any chance they can grab to sneak out
and haunt you.
I kind of see this time in history, as the 'edge of the
cliff' for pediatric cancer. Our kids have been
invisible for so long. Sure, St. Jude has put their
faces on brochures and commercials...but they've
always seemed almost surreal. Our children have
been easy to ignore and relegate to 'someone else's
problem'. Thanks in a large part to Deborah Pryce,
those days are gone. The people that run our
government are finally starting to 'see' our children. I
truly think the whole group of them is on the edge of
the chasm. A few wise, caring ones are trying to leap
off. The problem is, the would-be leapers are being
held back by people who are blindsided by
hate/fear/guilt about foreign matters. The few men
and women who want to jump, have been hampered
by people who would rather send money to any
country other than ours, for any child-related cause
that isn't cancer. It truly is up to we cancer families,
and those people we have touched, to band together
- and SHOVE the rest of Congress off that damn cliff.
We need to lock arms and force them to take the leap
of faith to heal the children at home, then tackle
everyone else's problems. I guess you could say, I'm
walking around every day with a giant metaphorical
stick, ready to whack every soul I meet into that
chasm that will allow them to care...
The sad thing is, its not just Congress. Cancer kids
are an unknown entity to most of society. Why don't
we talk about kids with cancer in health class? Why
aren't schools having students raise money to help
kids just like them? Don't get me wrong, some are.
We've met some amazing young people, that would
melt the heart of the abominable. Then again, there
is still a lot of work to do.
We weren't the only ones on Capitol Hill today.
Everywhere you looked there were teens in purple
T-shirts. I never had the time, or honestly, the
interest, to find out what they represented. All I knew,
is that they obviously outnumbered us by several
factors.
One of our moms was a far better human than I, and
did stop to talk to them. The irony is not lost on me -
by putting my head in the sand about their cause, I
committed the same exact evil I'm griping about. I get
it - no one needs to call me out on it. Had I taken the
initiative, we could have shared, and educated each
other. Count it as another lesson learned for me.
Anyway, Mimi (King Julian's mom) wrote about her
encounter on Julian's site. I hope she'll forgive me for
borrowing her words, but she said it all so eloquently.
**************************
Posted by Mimi - King Julian's mom
DC
Posted Jun 26, 2009 9:11pm
...As far as the CureSearch event, it was very interesting...
Most parents I saw there were parents of angels , which in
a way made me happy, because I feel it is our duty now to
fight for the kiddos still in the fight and their families and
obviously I am not the only one thinking that way. It feels
like we are responsible to make things happen while they
are still physically fighting for their kids lives... Also ,
friends of ours who are not directly touched by childhood
cancer came to support us...But it isn't enough. I wish
everyone felt concerned by this disease , I wish teenagers
learned about it in school and would take it to heart to raise
awareness. I know I am going to open a can of worms
with this , but seeing hundreds of teenage kids there on the
hill , meeting with Reps and fighting for children in Uganda
used in the local mafia made me feel ill , especially after
talking to a few of them who had no clue children die of
childhood cancer every day ... We are teaching our
children that their own do NOT come first ... These kids
could be our reps some day and I don't even want to think
how they will take care of our country ... If they had been
told about our kids here , dying of cancer AND the ones in
Uganda and picked to help the kids in Uganda it would be
fine, but they had NO clue!!!! I guess it is easier to teach
them about something far away and shelter them from the
horror happening next door...
And when i say I worry about when they start running our
country , it is because a couple of the staffers we met in
the house had no more clue than those kids did... The first
one we met nodded the whole time we talked with a smirk
on his face , and when we were done just said "Well things
are tough right now, we don't have any money " Rather
frustrating for a first meeting...
It got better for a while .A couple of ladies knew what we
were talking about, one of them got very teary after we
shared our children's stories and encouraged us in pushing
forward with our mission. The emotions ran high but we
did it!...
******************************************************************
Unfortunately, I never managed to meet Mimi during
any of the RTD meetings. I've emailed with her about
a different post of hers I would like to put on Avalon's
site, but I never managed to hook up with her in DC.
You can definitely count that as a 'regret' for me. I
would sincerely like to wrap her up in a giant hug...
For now, back to the events of the day. After the
speeches were done, it was time to head off to
meetings. We took a few minutes first to say some
"Thank You's" and take a few pictures. As I
mentioned before, Aurora desperately wanted to chat
with the young man who spoke. I made sure to find
my Super-potty-man again for another expression of
mommy-gratitude, and finally, we horn-swaggled
Deborah Pryce into grinning for a picture.
Its a funny thing. I have virtually zero interest in
celebrities. I honestly do not understand the concept
of autographs, and can only imagine one or two
people that I would be so impressed to meet, I might
be tongue-tied. (Mikhail Gorbachev being one of
them - really, I'm not joking, normal celebrities mean
zilch to me) So the fact that I was nearly desperate to
pose for a picture with the kids and Deborah Pryce is
humorous to say the least. I suppose the only way to
describe it is that I'm GRATEFUL to her. Politically,
we're pretty opposite. But at the core of our beings,
we're the same. We've faced the same demons...and
she lost the war with hers. I have a place in my heart
for her and the moms like her - that I just can't
explain. I'm so impressed by her dedication to our
kids, that I'm awestruck. Deborah took the most
painful event in her life, and chose to wear it publicly -
for the good of those weary souls that will follow
behind her. Politics be damned...she will always have
my 'vote'. I'm not impressed by her position, her
power, or her connections. I'm impressed by the size
of her heart...
After the cheesy picture with Deborah that you see
above, it was finally time to head off to our official
meetings. CureSearch schedules the meetings for
you. They organize the RTD registrants by
geographic location, and then contact the
appropriate offices to arrange meetings. We were
scheduled to attend our meetings with: Rourke,
Jessica and their children: Riley, Hannah, and
Duncan, with Dr. Thomas Gross - who is the head of
the Heme-Onc department at Nationwide Children's
Hospital, and with another party none of us had ever
met. Although we were scheduled that way, it turned
out that CureSearch pulled Dr. Gross to go meet with
several senators - and work his magic at levels far
above ours. Fair enough.
We were scheduled to meet with 6 representatives
from Ohio. Actually, we were scheduled to meet with
5 liaisons and one representative, but as I explained
before, we were perfectly fine with that. After the
Rally, we had a little bit of time before our first
meeting. We split from our group to go take some
pictures, and all agreed to meet up at the appropriate
time at the first Representative's office.
The pictures you see to the right are the ones we
took before our meetings. We currently have two
people we LOVE VERY MUCH who are both
undergoing treatment for relapse. Joe and Christina
mean the world to us. We wanted them to know, we
were in DC fighting for them. We decided to show
them that we took them 'with us' to Capitol Hill. The
pictures of the girls holding up the name signs, are
taken behind the Capitol, on our way to our first
meeting. Both of these kids (don't yell at me Joe and
Christina...you are "kids" to me!) represent the best
of what humanity has to offer. Both have bone
cancers, although they have different ones. Both
are, again, waging terrible battles against the Beast.
And yet, these are two of the most life-affirming,
loving, positive people you would ever want to meet.
If my children grow up to be half as sweet, generous,
and loving as these two...I will consider my life as a
mother a rousing success. There are no two people
I would rather show to represent pediatric cancer. It
is my deepest heartwish that we'll all go to Capitol Hill
together some day, with the two of them perfectly
healthy...and with cancer as a distant memory. Joe
and Christina have our hearts...and this was our
small effort to show them that.
You can also see, we held Avalon's name on Capitol
Hill. We wanted to represent her struggle, and how
far she's come. With my entire soul, I beg the
Universe that she'll come here many, many more
times to hold that sign. Please send a prayerful wish
to the Heavens for that. I don't want to walk these
paths as an Angel-Mom...
After our picture silliness, we finally headed off to our
first meeting. I suppose I should describe how and
where you meet with your Congressmen. On either
side of the Capitol Building, there are Congressional
Office Buildings. The North side of the Capitol has
the three Senate office buildings, the South side has
the three Representatives' office buildings. We were
lucky to only be meeting with Representatives, it cut
down on the running that some families have to do. If
you'd like to see a map of the Capitol and its office
buildings, and a description of how and why they are
named, I've scanned in the papers we were given.
With the stroller and wheelchair, we had to enter
Cannon, our first building, clear around the side, in a
wonky ground level entrance. Getting in was no easy
feat, you have to go through tight security. Of
course I don't mind, I'm actually pretty dad-blamed
happy they x-ray everything and metal-detector you
to death. Thank you very kindly, I appreciate the
efforts to keep my kids and I from being blown to
smithereens. However, unpacking umpteen zillion
things from the stroller, wheelchair, and two
backpacks - was a tad time-consuming. Not to
mention the typical mommy-has-a-heart-attack any
time Avalon gets near a metal detector. Sure, sure, I
probably over-react. Yeah, well tell that to my
adrenals. Maybe they'll listen to you.
I should note though, the guards were really nice.
They laughed at our pile of stuff, and were very
patient with us. I'm sure moms and piles of kids aren't
their usual customers - but they were truly kind, and
did a good job of directing us toward the proper
elevators.
Oh yeah - there's that word again...elevator.
Although, we all agreed - this was probably the ONE
PLACE in DC we could count on the elevators being
in perfect working order. Can you imagine a bunch of
congressmen being trapped in an elevator? Hah!
Tee hee...it is to laugh. We all felt sure we were safe.
Interesting thing to note about the Representative's
office buildings. First of all, they are nothing to write
home about. They are marble and limestone
monstrosities, but not really 'fancy' or swanky. The
hallways felt more like an old high school to me than
anything else. I don't know what I imagined, but it
wasn't this. Also, offices are assigned based on
seniority and position in the House. We were in
everything from a freshman congresswoman's office
(Rep. Mary Jo Kilroy) - to that of a very senior Rep.
(Rep. John Boehner). Rep Kilroy's office was little
better than an old closet, in a small house, in farm
country. Rep Boehner's office was spacious,
well-appointed, and downright luscious. His looked
like I thought they all would. Hers was something out
of a bad movie. I never would have guessed. In my
ever-so-fair mind, I presumed they would all have the
same amenities, just be decorated differently. I'm
sure Rep Kilroy's staff, who have to take lessons in
contortionism to work there, would be the first to
laugh out loud at my erroneous presumptions.
Lesson #408 of Washington DC - it really is all about
who you know.
For each of our meetings, we would enter the office,
and explain to the secretary who we were there to
see, and what organization we were representing.
From there, each meeting was different. Jessica and
I tried to get the main ideas of the "suggested talking
points" across - but we really didn't need to go into
much detail. Our liaisons were all well-versed in our
requests. Several of them were also VERY
supportive. We briefly told them our stories, then
kind of felt our way to some common ground to try to
help them understand. Our meetings went from
touching, to hysterical, to heartbreaking, often in a
matter of minutes.
Our first liaison, R. Mann, worked for Rep. Zack
Space. Mr. Mann was young and absolutely
adorable. OK, I probably shouldn't call a
congressional liaison 'adorable' - but he was! He was
genuine, kind, and very interested. As a group, we
were just getting our feet wet - so we stumbled a bit -
but I think we recovered well. Mr. Mann dealt with our
gang of children with not only kindness, but with true
heart. He laughed as we bribed Anam endlessly with
various forms of sugar.
You see, we knew long before we left Ohio that Anam
would be a Master of Mayhem the entire day. I knew
it, and I planned for it. I aimed for the Capitol armed
with enough sugar to keep an entire elementary
school jacked up for a week. I had Dumm Dumm
suckers, Nerds, Bottlecaps, and Sweettarts. And
believe me, I had PLENTY of all of them. The plan
was to keep a constant supply of sticky, sweet stuff
flowing his way - thereby distracting him and
simultaneously silencing him. We could deal with the
fall out later.
As Jessica and I talked, Aurora kept the suckers
coming. Mr. Mann found the whole thing riotously
funny, explaining to us that his mother does at-home
daycare, so he's used to having lots of toddlers
around. He really seemed to be touched, when I
explained that by the time Avalon was Anam's age -
she'd already been on treatment for over a year.
Suddenly, you could see he was processing that in
terms of the children his mother cares for. It seemed
to really sink in.
Mr. Mann was also very kind and supportive to the
mother who was part of our group, but whom we had
never met. She had just lost her son 6 weeks to the
day before today. Her pain was still very raw,
tempered with the anger of a mother who's been
robbed. Mr. Mann did an admirable job of trying to
reach out to her.
It wasn't until we left the office, that my lobby-mates
told me what I had missed while I was talking.
Apparently, Anam had been using one of his suckers
as more of a wand than an oral fixation. He had been
madly waving it around in all of its sticky
glory...narrowly missing the expensive suit jacket that
was hanging above his stroller on the coat rack. You
see, Rep Space is one of the newbies - his oversized
closet was merely an office wanna-be. The space
shortfall nearly teamed up with a bored toddler to
cause a hefty drycleaning bill. Luckily, we averted
disaster. Whew! Then again, the whole thing was
worth a couple of giggles.
From Rep Space's office, we headed to Rep. Tiberi's
digs. Rep. Tiberi is actually my Rep, and I'm thrilled
to say - very much a supporter of our cause. His
liaison, L. Vogtsberger, was extremely
knowledgeable. She was also very interested in
hearing our stories, and asked great questions. We
had tried to get the children to speak at our first
meeting, but it was too overwhelming to them.
However, Ambrosia warmed up to Ms. Vogtsberger,
and was willing to finally speak up. At one point, Ms.
Vogtsberger asked her what it was like to have a
sissy with cancer. What was the hardest part?
Ambrosia tried to be a big girl, and talk very
maturely. But suddenly, the enormity of what she was
remembering really hit. She teared up as she
described sissy turning two in the hospital, and how
sissy missed her birthday last year because she was
in the hospital after surgery. Ambrosia talked about
how scary and sad it is to have to go home without
your sissy when she's sick. She said her sissy was
her best friend, and that it makes her so sad when
she's not there...
Its killing me again just trying to tell you. I think it may
be one of the first times that Ambrosia has faced her
own fears/heartbreaks head on. As she teared up,
so did Ms. Vogtsberger. Heck, so did we all.
Ambrosia was so honest - so pure, I wish I had a
video of it to share. There was no planning, no script
- just honest heartache, from a little girl who's
seen/experienced far too much for only being 8. The
whole thing was a bit too much for Hannah - after all,
'her' Eden is gone. Her agony is something you just
can't fix. If Ambrosia could surprise and shock me
with her pain, I cannot imagine what Hannah must go
through. They were moments in time I wish we hadn't
a reason to live, but I'm glad we were able to. Most of
all, I'm glad they happened with a liaison who really
seemed to care. I think she'll really fight for us.
Our next stop was Rep Mike Turner's office. This
time, we had to leave Cannon and go to the
Longworth building. We had to part company with
our lobbying buddies, because they could all go down
the front steps, and we had to detour out the side of
the building. Of course, they also had about 1/10th
the amount of stuff we did, so they fast-tracked it
through the Longworth security stop too. Ahh...such
is life with my brood. Nothing seems to go terribly
'quickly', except the hours in a day when I have a long
to-do list.
At Rep Turner's office, we were greeted by J. Harrell.
I believe he was the most knowledgeable about our
particular cause. He assured us that Rep Turner
supported our interests, and he was fully up to snuff
on everything we came to talk about. Actually, it
became one of the most 'fun' visits - because it was a
"preaching to the choir" kind of meeting. We didn't
have to "sell" Mr. Harrell, so we could kind of let our
guards down a bit and laugh. We all told our stories,
and used the bits and pieces from our previous
meetings that had really worked. We launched into
an interesting side discussion about health care
reform. I don't remember who started it, but we
ended up kind of round table comparing what we had
given up/lost due to our child's cancer. In a really
sick, hard-to-describe way, we kind of bonded and
laughed over how we all answered some things
exactly the same way. (destroyed finances, things we
gave up, etc) We even shared some 'inside'
jokes/comments with Mr. Harrell, things cancer
families don't necessarily share with 'outsiders'. We
all learn early on, only other pediatric cancer people
"get" our jokes sometimes. Everyone else looks at
you like you've grown a second head. Glad to report,
Mr. Harrell actually laughed with us.
After Rep Turner's office, we had a long enough
break to be able to go to lunch. We left Longworth
and headed across the street to the Capitol, looking
for the new Visitor Center entrance. While we were
easily able to find the elevator down to the entrance,
we weren't quite prepared for what we found.
Because security is so tight at the Capitol, the line to
wait to go through security, was stretched all the way
back up the stairs, to the very level we'd just ridden
the elevator down from. We were stuck firmly
between a rock and a hard place. I couldn't leave the
kids at the bottom of the stairs, in the full sun, while I
went to the top to wait in 40 minutes in the line, and I
certainly couldn't send them up to wait. I was ready
to give up, when our new lobbying friends decided it
was time to chat up the security guards.
As it turns out, we were all dorks. There are tunnels
that connect the office buildings with each other, and
with the Capitol. Once you've been checked through
security at one of the buildings, you can use the
tunnels, and not have to be checked again.
(because you have never "left" the building) In other
words, we didn't need to unpack/repack at Longworth
- we could have easily tunneled it over. Now, wouldn't
that have been nice of the guards at Canon (or
Longworth) to tell us? Then again, we could have
read it ourselves...on the office information sheet!
Duh.
The guards ended up taking pity on us, and allowing
us in the next security group, without making us wait
through the entire line with the school and tour
groups. We thanked them profusely and headed on
in. Once inside, we ran into several more extremely
nice guards, several of which had a lot of fun teasing
me about my large metal hairclip. The stupid thing
set off all the metal detectors. I wore it because I was
having a bad hair day - it never occurred to me what
it would do! Never mind the fact that the hair thingy
looks like a weapon - its a sharp wooden stick that
winds through a metal holder. I'm grateful that pudgy
housewives with 4 kids in tow look pretty
non-threatening. I might have had to 'go postal' if
they made me take my hair out!
After we had unpacked and repacked for the third
time, we found our way to the restaurant. We easily
found Kate and the vouchers and headed for food.
Aurora staked out a table for us, and sat with Anam,
who had fallen fast asleep on the way to lunch. I
can't believe he could manage to close his eyes with
all the sugar he'd had - but somehow, he did.
Our lunch vouchers entitled us to either hamburgers
and fries or chicken strips and fries. We also got
fresh fruit and a drink. Unfortunately, it took so long
to get through the line, that we ended up having to
choke it all down pretty fast - but it was really good
food. Best of all, I didn't have to pay for it, and it
wasn't peanutbutter or granola bars. The kids were
thrilled!
After lunch, we realized we were running low on time.
We all decided we weren't fighting security again, we
were going to find the elusive magic tunnels if it killed
us. We stopped the first security guard we saw, to
ask directions. It turns out, he was the guard who
had started teasing me about my killer barrette. He
told us we really weren't supposed to access the
tunnels from the visitor's center, but he'd walk us
down there personally to keep us from getting in
trouble. Once again, we'd run full tilt into a caring,
thoughtful, sweet person. So where were all those
cranky, villianous DC-ites we'd heard about? I have
no idea, but I'm darned grateful for the helpful souls
we met instead.
We soon followed our Tunnel superhero down into
the depths of the Capitol. It would be more correct to
call them the "bowels" of the building - as they were
winding, stinky, filled with stuff, and just plain creepy.
Thankfully, I was too focused on keeping up with
Tunnelman to acknowledge my whopping case of
claustrophobia. Sometimes distraction and a tight
schedule really can trump terror.
But no matter how icky we all found the tunnels, they
were a real godsend for our timetable. In no time, we
were waiting for elevators in Longworth, headed for
meeting number 4 of the day. I won't lie, not having
to unpack and repack the slumbering Anam was
nothing short of a gift from God. Toddler snores
meant an easier meeting, no way around it.
Pretty soon, we found ourselves at the office of Rep.
Mary Jo Kilroy, the freshman congresswoman from
Columbus, who took over Deborah Pryce's seat. I'll
be perfectly honest, I fully expected a hostile
environment. Rep. Kilroy's election campaign against
Rep Pryce was epic. The mudslinging was so thick,
they actually made national news. More to the point,
they made the national agenda for evening talk
shows. When you've hoisted enough dirt to be
worthy of Leno jokes, you know the battle was ugly.
Although Rep Kilroy lost the initial election, she
carried on to win the next one, when Rep Pryce made
the decision to step down. It shouldn't be a surprise
then, that I had my doubts about whether Rep.
Kilroy's would be willing to carry on with the cause
that was the 'baby' of her much-aligned predecessor.
It turns out, I could not have been more WRONG.
Rep. Kilroy's team was not only well-informed about
our agenda, they were very supportive. We started
with a bit of concern, when the secretary seemed to
be caught off-guard with our to see the appointed
liaison. But in just a few minutes, we were greeted by
a friendly, lovely woman, Ms. J. Keaton. Ms. Keaton
was every bit as knowledgeable and sympathetic as
Mr. Harrell had been at Rep Turner's office. Her
questions were direct, and she was very engaging
with the children. I never expected such a warm
reception. Count it as yet another lesson learned on
my DC adventure. Nasty politics doesn't necessarily
override common sense, or deep, personal caring.
Rep. Kilroy's office proved that. Since my personal
politics lie far closer to hers, I'm proud she proved to
be so principled.
You may remember from earlier in this rant, its Rep
Kilroy's office that I spoke about being so small.
Seriously, folks, those poor people had to go out to
the hallway to change their minds...there was no
room in there for such movement. It would have been
laughable, if it wasn't so pathetic! Criminy, I don't
know how the low-on-the-totem-pole people ever get
anything done. I doubt her liaisons even have their
own desks. From the looks of it, I think her staff have
to play musical chairs all day just to fight for a chance
to sit down...
With such limited space, it wasn't hard to make the
decision to leave Aurora in the hallway with the
sleeping Anam and his gigantic stroller. Actually, the
stroller would have had to stay out there, regardless.
There was simply not enough floor space for it to
cross the threshold. Since little man was passed out
in it, big sissy got shafted and had to stay with him. It
was also fortuitous that two of our lobby-mates had
somehow not made it to the meeting after lunch.
Seriously, there would have been no where to put
them!
While it might not be terribly interesting that Aurora
was left holding the short straw, what happened to
her as a result of it, was. After a reasonably long
meeting with Ms. Keaton, we all emerged excited
about how supportive she'd been. We knew Aurora
was probably bored - but we had no idea what we
were in for. As it turns out, Aurora had way more to
say than we could have anticipated.
Shortly after we'd all packed into Rep Kilroy's office,
Aurora plopped down on the floor next to the stroller,
and took out her Ipod. Suddenly, she was accosted
by a female security guard, who demanded she
STAND UP. Aurora was told, on no uncertain terms,
that it was absolutely FORBIDDEN to sit in the
hallway of the building. The guard then demanded to
know why she was there in the first place. Aurora
went on to explain why we were in DC, that her mom
and siblings were right in that office, but that there
was not enough room for herself and her brother's
stroller. The guard went on to say, "I'd rather have
you sit in that windowsill than on the floor!" Aurora
misunderstood the verbal barrage, and made the
mistake of asking, "Oh? It's OK if I sit there? I don't
mind." Wrong answer. The guard went on to
demean her, berate her, and deride her for her poor
manners and disrespect. During the entirety of our
meeting, this same guard constantly circled back to
stand and stare at Aurora, making sure she never
again committed the "evil" of sitting on the floor of the
sacred hallway.
| Pictures from the morning "Rally to Reach the Day" at Taft Memorial Park |
| Ambrosia barely succeeding at cheerful... |
| Breakfast at the hotel - Aurora bribing Anam to eat |
| Avalon trying to look cheerful at breakfast... |
| Rourke, Jessica, Riley, Duncan, and Hannah - our 'partners in crime and lobbying' (aren't they nearly the same?) |
| At the Rally |
| Ambrosia's signature and handprint on the banner |
| Rally pics |
| Swanky lobbyist bathroom. I took a pic of Anam on the actual potty...but decency dictates I keep that for my own future snickers...and teen torture, of course! |
| Exercising the zoom lens - to try to show you were we jogged to ~ |
| CureSearch banner that led the march to the park. |
| Rally pics |
| Finally on our way... |
| Daddy pics for his belated Father's Day present |
| Deborah Pryce - We adore her! |
| Two dudes trying to jump off the cliff...we love them! |
| Its Avalon's name, but we're all in this together... |
| Christina, you were definitely with us! |
| Until Anam decides he's done. |
| In Canon, before our first meeting |
| So were you, Joe! |
| Rep Zack Space's office |
| The halls of Justice... |
| Our second meeting |
| Our first meeting |
| Our third meeting |
| Our 4th meeting |
| Our Tunnel Superhero! |
| The Cannon restrooms were NOTHING like the ones in the lobbyists' building. They looked like outdated, ugly school bathrooms. That amused me greatly. |
| Fun in the halls. Aurora and Riley are trying to work together to push two strollers and a wheelchair at the same time. |
| 5th meeting, this one ended up being our last. |
| Some Capitol pics - its a fun building to photograph |
| Man-eating squirrel...stalking us... |
| Our view of the Capitol from our impromptu picnic spot |
Two things to point out here. First of all, for all of Aurora's faults (she's a teenage girl, she has
them), the one thing I would NEVER accuse her of is being disrespectful to adults. (with the
glaring exception of her dad and I - normal teen stuff) She had been willing to give up her
chance to see the Capitol, to stay at Anne's with Anam, and allow us to have a peaceful day.
The entire lobbying effort was very meaningful to her, so accusing her of being "improper" and
"disrespectful" was so far from the truth, it seriously hurt her feelings. Second of all, the
supposedly-sacred-hallway wasn't even one of the main halls. It was a side hall - one of
virtually no traffic. She was sitting under the stroller's handle - as inconspicuous and
out-of-the-way as she could possibly muster. The verbal assault by the security guard was
uncalled for, and downright nasty. But I wish that was the end of the story...
When we left the office, we, obviously, found Aurora standing by the stroller. She couldn't
usher us out of the hallway fast enough. Now, Aurora is certainly no stranger to foul people -
we've run across our fair share of them. She's also not easily rattled. Yes, the nasty guard
hurt her feelings and perplexed her, but she was behaving far too oddly if that was the only
issue. She refused to talk until we were a good distance from the hall - but wow...when she
did, I have to say I'm glad she waited.
It turns out, the power-happy female guard was the least of Aurora's concerns. It was a male
guard at the end of the hallway that really freaked her out. She said that after the female
guard had admonished her, she realized the male guard was staring at her. At first, she
thought he might feel sorry for her, because the other guard had been so nasty. Then, she
said she kind of felt creepy, like the hairs on the back of her neck were standing up. The next
time she glanced over at him, he was licking his lips at her! She said she honestly couldn't
believe it. She reported having to look his way several more times to really "get" that he was
making the gestures and faces he was at her. Funny enough, she said she first looked around
to see if he was doing it at someone else. Then, she tried to convince herself he had dry
chapped lips... But, um....no. He continued with suggestive, out-of-line licking and other
expressions until we exited the office and rescued her. Her jumpiness, and his excessive
staring as we walked by suddenly made sense... And here, I'd thought he was mad about the
sitting-in-the-hallway thing too. I don't think I've ever wanted to go back and crotch-kick
someone more. Thank heavens for tight schedules and important business...it may very well
have saved me from jail time...
With the truckload of Ugly behind us, we headed to Rep Boehner's office. Having just left the
hole-in-the-wall-gang, walking into Rep Boehner's office was nearly hysterical. Rep Boehner is
an elder statesman, with lots of power and oodles of connections. His digs were the
mahogany, powerful-Trump-like posh leather luxury that I had been expecting all day. His
office is so large it has a small conference table, sofa, and chairs in the reception area, not to
mention the large conference room and well-appointed staff area. In a word, it was fabulous.
At Rep. Boehner's office, we were greeted by a friendly staff person, and even offered drinks
as we waited for our appointment. After hours of traipsing around Capitol Hill and endless
talking, a cold drink was nearly a religious event. I'm not sure we could say, "Yes, please!" fast
enough. In a few minutes, Rep. Boehner's Deputy Chief of Staff, S. Milburn, came out and
welcomed us into Rep. Boehner's personal office. It was a crazy day, and with other areas of
the office suite already spoken for, we were lucky enough to get to see his personal space.
Again, a solitary word comes to mind, beautiful. As soon as we sat down, we were sure to
thank Ms. Milburn profusely for the generous offer of the drinks. I'm sure it wasn't too difficult
to see how tired we all were, and Ms. Milburn was gracious in her recognition of that.
Of all the meetings today, I have to say, this one will always stand out as the most 'important' to
me. Its not that we hadn't met outstanding people - we had. We were honored to share our
stories with each of the people I've described. I was pleasantly surprised again and again, at
how knowledgeable and supportive the Ohio delegation was. We were honestly on a bit of a
'contact high' when we walked into Rep. Boehner's office, but it didn't begin to prepare me for
what happened next. I don't know that anything could have.
As I said earlier, we spent the day lobbying with friends of ours, from our home hospital. We
know these wonderful people, because our children were in treatment at the same time, and
we frequent the same local pediatric cancer charities. I dearly love Rourke and Jessica, and
am honored to consider them "friends", not merely casual acquaintances. As such, I'm acutely
aware of how difficult this entire day was for their family. Losing Rourke's daughter, Eden, is a
pain that is unimaginable for most parents. Revisiting the places they'd all gone together last
year, to try to help those kids who will come after her...its a heart-wrenching struggle that I
know I wouldn't have the strength to do. The day was difficult for them, but they care enough
about their fellow man to make the effort. Besides, as they told all the representatives, its the
last thing they can do for Eden, make sure her life mattered.
Rep. Boehner's office was one stop they were not necessarily looking forward to. During the
push last year to pass the Conquer Childhood Cancer Act, Rep. Boehner's office had been
one of the places they met with the strongest resistance. To be fair, there were others, but this
one had been notable.
Returning to today, I believe things have changed now. We entered Rep Boehner's private
office, and took up residence on the couches, chairs, and floor. We were, again, without two of
our lobbymates, but our remaining 3 adults, 2 teens, 4 elementaries, and 1 toddler, were still a
formidable bunch. After thanking Ms. Milburn for the kindness of the drinks, Jessica mentioned
that Ms. Milburn looked familiar. They discussed it for a minute, and realized that Ms. Milburn
was, indeed, the same liaison they had met with last year. Jessica thanked her for seeing them
again, saying it was nice to see at least one familiar face, since everyone else had been new to
them. And that, is when history changed.
Ms. Milburn answered Jessica that she did remember them from last year. She then said, "But
if I remember right...didn't you have another little girl with you too?" After the briefest of
pauses to gather themselves...Jessica went on to explain that yes, they did have another child
with them last year, Eden. She went on to explain that they'd lost Eden on Dec 29th, and were
here to lobby in her honor, and in her memory. As painful, and awful as those words will
always be...in that moment...they were life changing. I had the privilege of being the observer,
watching as Ms. Milburn's entire demeanor changed right in front of us. Suddenly, in the blink
of an eye, and the heartache of a family...all of our kids became real for her. There was no
more someone-else's-problem or there's-not-enough-of-them-to-worry-about. Cancer kids
were no longer something you read about, or change the channel to get away from. In an
instant, our children were very real to her, and very, very personal. Actually witnessing that
transformation was unfathomably humbling. It wasn't the expressions of condolences, or
apologies for not knowing (how could she possibly have known?) that impressed me. It was
how her whole 'being' changed. I don't know if I'm possibly explaining this well at all. I'm sure
words can't do it justice. All I know, is that I was honored to see the exact change I hope to
inspire in people. I know it can happen, and I applaud Ms. Milburn for her open heart in
embracing it.
The rest of the meeting was wholly positive. Ms. Milburn asked great questions, and seemed
genuinely interested in what the kids, themselves, had to say. We discussed current research
trends, and how innovative and impressive the researchers are in pediatric cancer. Ms.
Milburn seemed to connect with our beliefs that ped-onc researchers may hold the key to adult
cancer research - not so much in their direct projects, but more in leading-by-example. If adult
researchers would take note of the cooperation among ped-onc factions, we'd be much further
in our cancer strategies. All in all, the meeting exceeded all our expectations, and certainly
sent us forward with a renewed sense of hope.
After leaving Rep Boehner's, we decided to split from Jessica and Rourke for a while. We had
quite a bit of time before our next meeting, and they wanted to go out and about with the kids.
We chose to head on over to Canon, and wait in the bathroom of the hallway where our next
meeting would be. We knew the bathroom had a couch in the vestibule, and figured security
guards wouldn't yell at us for resting in there. With temps in the high 80's outside, an
air-conditioned john seemed like the best port in the humidity-ridden storm. OK, so potties are
not normal vacation locales...then again, we weren't your garden-variety lobbyists. With tired
kids, a frustrated teen, and a sleeping toddler, it all seemed to fit somehow.
Because I didn't have Jessica's cell phone number, I periodically peeked out in the hallway to
see if our partners-in-crime had made it to the building yet. On my first peek, I ran into the
CureSearch photographer. Earlier in the day, she had been supposed to meet us at Rep
Kilroy's office to take photos of us chatting with the liaison. But, the secretary had mistakenly
told her there was no meeting scheduled - so she'd headed out before we got there.
(remember, I said they'd forgotten we were coming) So, here she was, waiting outside our
refuge bathroom for the same meeting we were - hoping to get some pictures. I cautioned her
about sitting on the floor - relating Aurora's earlier berating. Turns out, Aurora really had met
Cruella de Powertrip. The photographer had spent the entire day alternately sitting on the
floor of every Congressional office building on the Hill, as she had in previous years. She was
incredulous that anyone would say anything about it, much less be nasty to a child. Ah...if she
only knew about the other half of that equation.
After briefly pestering the photographer, I returned to my bucket o' children and their bathroom
paradise. We talked about the day, and about all we had learned. I had oodles of fun
describing the sumptuous lobbyists' bathroom and how much of a stark contrast it was to the
bare-bones ugliness we were holed up in. Seriously, the bathrooms of the congressional office
buildings were U G L Y (and they didn't have no alabi....I say they're ugly..yeah, yeah, they're
Ugly!) As with the hallways, the best I can describe them is like an old,
never-been-refurbished high school. (hence my little football cheer - if you didn't get that!) It
was actually laughable! The crappers of the people who-are-the-most-full-o'-BS are absolutely
hideous. Then again, this was the pit stop for the low-life office staff and liaisons for
those-who-are-professional-crapsters. The truth is, I bet the 'throne rooms' the congress
actually uses in the Capitol are damn near gilded. C'mon....would those royal butts place their
keesters on anything less than perfection? I highly doubt it. After all...they know how full-of-it
they are...
Eventually, Anam woke up and joined our little 'going-place-get-together'. We bribed him with
food and beverage - and wiled away the hours... OK, so maybe not hours. It would have been
hours, but I received a phone call from Jessica. It turns out, we were asked to not attend the
final meeting of the day. The two lobbyists who had not come to meetings #4 and #5,
requested to go to meeting #6 without us. Meeting #6 was with an actual representative, and it
happened to be the one from their home district - so they asked to go it alone. Fair enough.
Besides, that meant we got our get-out-of-jail-free card an hour or so early. Wahoo! After
giving the hallway-sitting-photographer the heads up (she's a rebel!), we all headed out
together. We parted ways at the exit, but had a lovely chat on the way out. She's a dear,
talented woman, and I hope we cross paths again.
Once out of the building, I called Jessica back to thank her for tracking us down. Somehow,
CureSearch did not have mine or Aurora's cell phone numbers. So, when they called Jessica
to tell she and Rourke about the change in plans, it was up to them to find us. They seriously
out did themselves! First, they called the hospital back in Ohio to try to find a number for us.
They were given my sister's cell phone (our emergency contact) - but she never answered.
Next, they called back and begged for Nick's number. They tracked him down at work, and got
our numbers from him! I'd say that's WAY above and beyond the call of duty. Like I said, I
definitely consider them friends, in every sense of the word. Thank you, Jessica! You rock!
After gaining our early release, we all decided we were hungry again. Actually, Anam was
closer to starving, since he'd snoozed his way through lunch. We headed across the street
from the congressional office buildings, and found a beautiful tree in a grassy space near the
corner of the Capitol. We had an impromptu picnic under our tree, while we watched security
guards and bomb-sniffing dogs check out incoming traffic to the Capitol. We tickled, chased,
ate Nerds, and thoroughly, 100% enjoyed just being together in this time and space. I'm glad
we don't have the money for expensive restaurants. I can't imagine I'd ever appreciate meals
there as much as I do a granola bar under a tree...
We were not alone for lunch. We were soon joined by a man-eating Stalker Squirrel. I'm
telling you, I'm nearly positive that this thing was an undercover CIA operative. He was
cunning, ballsy, and downright pushy! All that and an attitude to boot! He nearly snuck into
the stroller, got within inches of my back, and actually went into our picnic tree to recruit
back-up troops. When we 'dared' to deny him any part of our repast - he left us, only to return
with reinforcements - and "yell" at us from their tree fort! I'm serious. They came down the
tree - to our eye level, and scolded us like we were jaguars on the hunt. I know they were
swearing at us in Squirrel-ese...you can tell. Foul mouthed little vermin. We threatened to
feed them to the bomb-dogs - but I think they knew better. Heck, they probably work for him on
commission...
We finally decided our lives were worth living, and that they were in jeopardy as long as we
shared space with commando-squirrel. So, we headed out toward Union Station. As we wound
our way back around the Capitol, Aurora and I took an obscenely large number of photographs
of it. Its just so picturesque. Every few steps, a new angle brings something new to capture. I
won't lie, we were total dorks. I won't lie even more...it was fun!
When we got to fountain at the rear of the Capitol again, I hornswaggled the kids into taking
more "We love you Daddy" pictures. As I described earlier, the pictures were part of a master
plan to make a really interesting Father's Day present for him. As with earlier that morning,
getting little man to cooperate was less-than-easy. Not to mention how hot it was, or how
terribly the sun was blinding everyone. But they were good sports, and did their best to make
great pictures for Daddy. In fact, all day, our biggest disappointment had been that he wasn't
there to share it with us. As we were gathering up our things to get on our way, I happened to
look up. Right above the Capitol, was the cloud you see photographed below. No kidding.
There has been no photo-shopping or any other form of alteration of the picture. Right above
the kids' heads, I saw this beautiful, perfect cloud heart. I decided it was proof that our day
had been perfect, and that we'd done it all with love. After all, if the Great Sculptor can make a
heart for us - who are we to question it? As with the Capitol, I think Aurora and I took dozens of
pictures of it. Sometimes, you can barely believe what you see with your own eyes. And
sometimes....its magic to just give in to it.
So, with a cloud in our heart, and lots of great memories...we wound our way back to Union
Station. Our purpose in DC was over. Now, we were free to embrace the fun.
them), the one thing I would NEVER accuse her of is being disrespectful to adults. (with the
glaring exception of her dad and I - normal teen stuff) She had been willing to give up her
chance to see the Capitol, to stay at Anne's with Anam, and allow us to have a peaceful day.
The entire lobbying effort was very meaningful to her, so accusing her of being "improper" and
"disrespectful" was so far from the truth, it seriously hurt her feelings. Second of all, the
supposedly-sacred-hallway wasn't even one of the main halls. It was a side hall - one of
virtually no traffic. She was sitting under the stroller's handle - as inconspicuous and
out-of-the-way as she could possibly muster. The verbal assault by the security guard was
uncalled for, and downright nasty. But I wish that was the end of the story...
When we left the office, we, obviously, found Aurora standing by the stroller. She couldn't
usher us out of the hallway fast enough. Now, Aurora is certainly no stranger to foul people -
we've run across our fair share of them. She's also not easily rattled. Yes, the nasty guard
hurt her feelings and perplexed her, but she was behaving far too oddly if that was the only
issue. She refused to talk until we were a good distance from the hall - but wow...when she
did, I have to say I'm glad she waited.
It turns out, the power-happy female guard was the least of Aurora's concerns. It was a male
guard at the end of the hallway that really freaked her out. She said that after the female
guard had admonished her, she realized the male guard was staring at her. At first, she
thought he might feel sorry for her, because the other guard had been so nasty. Then, she
said she kind of felt creepy, like the hairs on the back of her neck were standing up. The next
time she glanced over at him, he was licking his lips at her! She said she honestly couldn't
believe it. She reported having to look his way several more times to really "get" that he was
making the gestures and faces he was at her. Funny enough, she said she first looked around
to see if he was doing it at someone else. Then, she tried to convince herself he had dry
chapped lips... But, um....no. He continued with suggestive, out-of-line licking and other
expressions until we exited the office and rescued her. Her jumpiness, and his excessive
staring as we walked by suddenly made sense... And here, I'd thought he was mad about the
sitting-in-the-hallway thing too. I don't think I've ever wanted to go back and crotch-kick
someone more. Thank heavens for tight schedules and important business...it may very well
have saved me from jail time...
With the truckload of Ugly behind us, we headed to Rep Boehner's office. Having just left the
hole-in-the-wall-gang, walking into Rep Boehner's office was nearly hysterical. Rep Boehner is
an elder statesman, with lots of power and oodles of connections. His digs were the
mahogany, powerful-Trump-like posh leather luxury that I had been expecting all day. His
office is so large it has a small conference table, sofa, and chairs in the reception area, not to
mention the large conference room and well-appointed staff area. In a word, it was fabulous.
At Rep. Boehner's office, we were greeted by a friendly staff person, and even offered drinks
as we waited for our appointment. After hours of traipsing around Capitol Hill and endless
talking, a cold drink was nearly a religious event. I'm not sure we could say, "Yes, please!" fast
enough. In a few minutes, Rep. Boehner's Deputy Chief of Staff, S. Milburn, came out and
welcomed us into Rep. Boehner's personal office. It was a crazy day, and with other areas of
the office suite already spoken for, we were lucky enough to get to see his personal space.
Again, a solitary word comes to mind, beautiful. As soon as we sat down, we were sure to
thank Ms. Milburn profusely for the generous offer of the drinks. I'm sure it wasn't too difficult
to see how tired we all were, and Ms. Milburn was gracious in her recognition of that.
Of all the meetings today, I have to say, this one will always stand out as the most 'important' to
me. Its not that we hadn't met outstanding people - we had. We were honored to share our
stories with each of the people I've described. I was pleasantly surprised again and again, at
how knowledgeable and supportive the Ohio delegation was. We were honestly on a bit of a
'contact high' when we walked into Rep. Boehner's office, but it didn't begin to prepare me for
what happened next. I don't know that anything could have.
As I said earlier, we spent the day lobbying with friends of ours, from our home hospital. We
know these wonderful people, because our children were in treatment at the same time, and
we frequent the same local pediatric cancer charities. I dearly love Rourke and Jessica, and
am honored to consider them "friends", not merely casual acquaintances. As such, I'm acutely
aware of how difficult this entire day was for their family. Losing Rourke's daughter, Eden, is a
pain that is unimaginable for most parents. Revisiting the places they'd all gone together last
year, to try to help those kids who will come after her...its a heart-wrenching struggle that I
know I wouldn't have the strength to do. The day was difficult for them, but they care enough
about their fellow man to make the effort. Besides, as they told all the representatives, its the
last thing they can do for Eden, make sure her life mattered.
Rep. Boehner's office was one stop they were not necessarily looking forward to. During the
push last year to pass the Conquer Childhood Cancer Act, Rep. Boehner's office had been
one of the places they met with the strongest resistance. To be fair, there were others, but this
one had been notable.
Returning to today, I believe things have changed now. We entered Rep Boehner's private
office, and took up residence on the couches, chairs, and floor. We were, again, without two of
our lobbymates, but our remaining 3 adults, 2 teens, 4 elementaries, and 1 toddler, were still a
formidable bunch. After thanking Ms. Milburn for the kindness of the drinks, Jessica mentioned
that Ms. Milburn looked familiar. They discussed it for a minute, and realized that Ms. Milburn
was, indeed, the same liaison they had met with last year. Jessica thanked her for seeing them
again, saying it was nice to see at least one familiar face, since everyone else had been new to
them. And that, is when history changed.
Ms. Milburn answered Jessica that she did remember them from last year. She then said, "But
if I remember right...didn't you have another little girl with you too?" After the briefest of
pauses to gather themselves...Jessica went on to explain that yes, they did have another child
with them last year, Eden. She went on to explain that they'd lost Eden on Dec 29th, and were
here to lobby in her honor, and in her memory. As painful, and awful as those words will
always be...in that moment...they were life changing. I had the privilege of being the observer,
watching as Ms. Milburn's entire demeanor changed right in front of us. Suddenly, in the blink
of an eye, and the heartache of a family...all of our kids became real for her. There was no
more someone-else's-problem or there's-not-enough-of-them-to-worry-about. Cancer kids
were no longer something you read about, or change the channel to get away from. In an
instant, our children were very real to her, and very, very personal. Actually witnessing that
transformation was unfathomably humbling. It wasn't the expressions of condolences, or
apologies for not knowing (how could she possibly have known?) that impressed me. It was
how her whole 'being' changed. I don't know if I'm possibly explaining this well at all. I'm sure
words can't do it justice. All I know, is that I was honored to see the exact change I hope to
inspire in people. I know it can happen, and I applaud Ms. Milburn for her open heart in
embracing it.
The rest of the meeting was wholly positive. Ms. Milburn asked great questions, and seemed
genuinely interested in what the kids, themselves, had to say. We discussed current research
trends, and how innovative and impressive the researchers are in pediatric cancer. Ms.
Milburn seemed to connect with our beliefs that ped-onc researchers may hold the key to adult
cancer research - not so much in their direct projects, but more in leading-by-example. If adult
researchers would take note of the cooperation among ped-onc factions, we'd be much further
in our cancer strategies. All in all, the meeting exceeded all our expectations, and certainly
sent us forward with a renewed sense of hope.
After leaving Rep Boehner's, we decided to split from Jessica and Rourke for a while. We had
quite a bit of time before our next meeting, and they wanted to go out and about with the kids.
We chose to head on over to Canon, and wait in the bathroom of the hallway where our next
meeting would be. We knew the bathroom had a couch in the vestibule, and figured security
guards wouldn't yell at us for resting in there. With temps in the high 80's outside, an
air-conditioned john seemed like the best port in the humidity-ridden storm. OK, so potties are
not normal vacation locales...then again, we weren't your garden-variety lobbyists. With tired
kids, a frustrated teen, and a sleeping toddler, it all seemed to fit somehow.
Because I didn't have Jessica's cell phone number, I periodically peeked out in the hallway to
see if our partners-in-crime had made it to the building yet. On my first peek, I ran into the
CureSearch photographer. Earlier in the day, she had been supposed to meet us at Rep
Kilroy's office to take photos of us chatting with the liaison. But, the secretary had mistakenly
told her there was no meeting scheduled - so she'd headed out before we got there.
(remember, I said they'd forgotten we were coming) So, here she was, waiting outside our
refuge bathroom for the same meeting we were - hoping to get some pictures. I cautioned her
about sitting on the floor - relating Aurora's earlier berating. Turns out, Aurora really had met
Cruella de Powertrip. The photographer had spent the entire day alternately sitting on the
floor of every Congressional office building on the Hill, as she had in previous years. She was
incredulous that anyone would say anything about it, much less be nasty to a child. Ah...if she
only knew about the other half of that equation.
After briefly pestering the photographer, I returned to my bucket o' children and their bathroom
paradise. We talked about the day, and about all we had learned. I had oodles of fun
describing the sumptuous lobbyists' bathroom and how much of a stark contrast it was to the
bare-bones ugliness we were holed up in. Seriously, the bathrooms of the congressional office
buildings were U G L Y (and they didn't have no alabi....I say they're ugly..yeah, yeah, they're
Ugly!) As with the hallways, the best I can describe them is like an old,
never-been-refurbished high school. (hence my little football cheer - if you didn't get that!) It
was actually laughable! The crappers of the people who-are-the-most-full-o'-BS are absolutely
hideous. Then again, this was the pit stop for the low-life office staff and liaisons for
those-who-are-professional-crapsters. The truth is, I bet the 'throne rooms' the congress
actually uses in the Capitol are damn near gilded. C'mon....would those royal butts place their
keesters on anything less than perfection? I highly doubt it. After all...they know how full-of-it
they are...
Eventually, Anam woke up and joined our little 'going-place-get-together'. We bribed him with
food and beverage - and wiled away the hours... OK, so maybe not hours. It would have been
hours, but I received a phone call from Jessica. It turns out, we were asked to not attend the
final meeting of the day. The two lobbyists who had not come to meetings #4 and #5,
requested to go to meeting #6 without us. Meeting #6 was with an actual representative, and it
happened to be the one from their home district - so they asked to go it alone. Fair enough.
Besides, that meant we got our get-out-of-jail-free card an hour or so early. Wahoo! After
giving the hallway-sitting-photographer the heads up (she's a rebel!), we all headed out
together. We parted ways at the exit, but had a lovely chat on the way out. She's a dear,
talented woman, and I hope we cross paths again.
Once out of the building, I called Jessica back to thank her for tracking us down. Somehow,
CureSearch did not have mine or Aurora's cell phone numbers. So, when they called Jessica
to tell she and Rourke about the change in plans, it was up to them to find us. They seriously
out did themselves! First, they called the hospital back in Ohio to try to find a number for us.
They were given my sister's cell phone (our emergency contact) - but she never answered.
Next, they called back and begged for Nick's number. They tracked him down at work, and got
our numbers from him! I'd say that's WAY above and beyond the call of duty. Like I said, I
definitely consider them friends, in every sense of the word. Thank you, Jessica! You rock!
After gaining our early release, we all decided we were hungry again. Actually, Anam was
closer to starving, since he'd snoozed his way through lunch. We headed across the street
from the congressional office buildings, and found a beautiful tree in a grassy space near the
corner of the Capitol. We had an impromptu picnic under our tree, while we watched security
guards and bomb-sniffing dogs check out incoming traffic to the Capitol. We tickled, chased,
ate Nerds, and thoroughly, 100% enjoyed just being together in this time and space. I'm glad
we don't have the money for expensive restaurants. I can't imagine I'd ever appreciate meals
there as much as I do a granola bar under a tree...
We were not alone for lunch. We were soon joined by a man-eating Stalker Squirrel. I'm
telling you, I'm nearly positive that this thing was an undercover CIA operative. He was
cunning, ballsy, and downright pushy! All that and an attitude to boot! He nearly snuck into
the stroller, got within inches of my back, and actually went into our picnic tree to recruit
back-up troops. When we 'dared' to deny him any part of our repast - he left us, only to return
with reinforcements - and "yell" at us from their tree fort! I'm serious. They came down the
tree - to our eye level, and scolded us like we were jaguars on the hunt. I know they were
swearing at us in Squirrel-ese...you can tell. Foul mouthed little vermin. We threatened to
feed them to the bomb-dogs - but I think they knew better. Heck, they probably work for him on
commission...
We finally decided our lives were worth living, and that they were in jeopardy as long as we
shared space with commando-squirrel. So, we headed out toward Union Station. As we wound
our way back around the Capitol, Aurora and I took an obscenely large number of photographs
of it. Its just so picturesque. Every few steps, a new angle brings something new to capture. I
won't lie, we were total dorks. I won't lie even more...it was fun!
When we got to fountain at the rear of the Capitol again, I hornswaggled the kids into taking
more "We love you Daddy" pictures. As I described earlier, the pictures were part of a master
plan to make a really interesting Father's Day present for him. As with earlier that morning,
getting little man to cooperate was less-than-easy. Not to mention how hot it was, or how
terribly the sun was blinding everyone. But they were good sports, and did their best to make
great pictures for Daddy. In fact, all day, our biggest disappointment had been that he wasn't
there to share it with us. As we were gathering up our things to get on our way, I happened to
look up. Right above the Capitol, was the cloud you see photographed below. No kidding.
There has been no photo-shopping or any other form of alteration of the picture. Right above
the kids' heads, I saw this beautiful, perfect cloud heart. I decided it was proof that our day
had been perfect, and that we'd done it all with love. After all, if the Great Sculptor can make a
heart for us - who are we to question it? As with the Capitol, I think Aurora and I took dozens of
pictures of it. Sometimes, you can barely believe what you see with your own eyes. And
sometimes....its magic to just give in to it.
So, with a cloud in our heart, and lots of great memories...we wound our way back to Union
Station. Our purpose in DC was over. Now, we were free to embrace the fun.