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Our
Journey:
Journey:
Avalon's Army of Angels
| December 15, 2008 Statehouse visit and the CBJ |
Once inside the statehouse, we found the tour
guide waiting at the desk, just as he was supposed
to be. Mr. Stan (I couldn't reproduce his last name
if my life depended on it) was immediately
fantastic. He engaged the kids, and treated each
entirely age-appropriately. When he found out the
tour was for Ambrosia's classwork, he was kind
enough to direct most of his queries and
information to her. He gave such excellent
information that Aurora and I still learned things,
but he definitely did his best to interact with
Ambrosia the most. As tour guides go, he was a
gem.
Part way through our tour, we were joined by
another family. They had been doing a
self-guided tour, when they stopped to listen to
what Stan was telling us about the rotunda. We all
invited them along with us, and I'm so glad we did.
After the rotunda, we headed to the House
Chambers. Typically, you can visit the House and
Senate chambers - even if they're in session. (in
fact, attending sessions is highly encouraged)
However, Stan had taken a lot of time, explaining
to us what a special day this was at the
Statehouse. As everyone knows, we don't actually
vote for the president. We vote for our choice of
the president, and the majority winner in each
state is awarded that state's electoral votes.
Today was the day that Ohio's electors were
casting their votes for the president. Isn't that
odd? I was shocked to hear its so long after the
popular election.
We also learned that this was a truly rare
occasion, as the current governor, Ted Strickland,
is also an elector. Therefore, he was present in
the Senate Chambers for the elector vote
proceedings. Stan spent a great deal of time
explaining to Ambrosia, that governors are not
permitted in the House or Senate chambers unless
expressly invited, and those invitations are rare.
He took great pains to discuss the branches of
government and checks and balances - all of
which were review of what we had done in school
last week. But watching movies about it, reading
about it, and having mom explain it is one thing.
Hearing about it again, in such a real way, while
sitting in the House Chambers...that's entirely
different. I can say I'm pretty sure my 7 year old
has a good solid grasp on the concept of
legislature versus executive branches of
government. I'm thinking its time to call in some
favors and go tour the courthouse to complete the
picture.
While we were in the House Chambers discussing
all sorts of things, we made it to the topic of the
gallery. Both chambers were built with large
galleries, to encourage people to attend sessions,
and to remind the politicians who they work for. I
asked how often people attend, and our guide
answered, "Not often enough." He said that for
hot topics, the place might be full, but for boring,
everyday things, its often empty. In all fairness
though, the chambers have real time cameras that
are accessible on the internet - so classrooms can
watch proceedings, without the expense of a field
trip. You can bet we'll be trying to do that soon.
guide waiting at the desk, just as he was supposed
to be. Mr. Stan (I couldn't reproduce his last name
if my life depended on it) was immediately
fantastic. He engaged the kids, and treated each
entirely age-appropriately. When he found out the
tour was for Ambrosia's classwork, he was kind
enough to direct most of his queries and
information to her. He gave such excellent
information that Aurora and I still learned things,
but he definitely did his best to interact with
Ambrosia the most. As tour guides go, he was a
gem.
Part way through our tour, we were joined by
another family. They had been doing a
self-guided tour, when they stopped to listen to
what Stan was telling us about the rotunda. We all
invited them along with us, and I'm so glad we did.
After the rotunda, we headed to the House
Chambers. Typically, you can visit the House and
Senate chambers - even if they're in session. (in
fact, attending sessions is highly encouraged)
However, Stan had taken a lot of time, explaining
to us what a special day this was at the
Statehouse. As everyone knows, we don't actually
vote for the president. We vote for our choice of
the president, and the majority winner in each
state is awarded that state's electoral votes.
Today was the day that Ohio's electors were
casting their votes for the president. Isn't that
odd? I was shocked to hear its so long after the
popular election.
We also learned that this was a truly rare
occasion, as the current governor, Ted Strickland,
is also an elector. Therefore, he was present in
the Senate Chambers for the elector vote
proceedings. Stan spent a great deal of time
explaining to Ambrosia, that governors are not
permitted in the House or Senate chambers unless
expressly invited, and those invitations are rare.
He took great pains to discuss the branches of
government and checks and balances - all of
which were review of what we had done in school
last week. But watching movies about it, reading
about it, and having mom explain it is one thing.
Hearing about it again, in such a real way, while
sitting in the House Chambers...that's entirely
different. I can say I'm pretty sure my 7 year old
has a good solid grasp on the concept of
legislature versus executive branches of
government. I'm thinking its time to call in some
favors and go tour the courthouse to complete the
picture.
While we were in the House Chambers discussing
all sorts of things, we made it to the topic of the
gallery. Both chambers were built with large
galleries, to encourage people to attend sessions,
and to remind the politicians who they work for. I
asked how often people attend, and our guide
answered, "Not often enough." He said that for
hot topics, the place might be full, but for boring,
everyday things, its often empty. In all fairness
though, the chambers have real time cameras that
are accessible on the internet - so classrooms can
watch proceedings, without the expense of a field
trip. You can bet we'll be trying to do that soon.
| Ohio's Governor Ted Strickland He's a really nice guy! |
OK, lots to tell about today - you might as well sit back and get comfy...
In the spirit of "conservation" - this was a kill several birds with one stone kind of day. I'm fully
aware (Hallelujah!) that gas is no longer $4/gal. However, I figure it can't hurt to act like it is -
so we're still trying to plan accordingly. Translation: if you're going downtown to the hospital,
add other downtown/way-to-downtown things onto your day.
Can you guess we had a "downtown" kind of day?
We started out by meandering slightly off course and stopping by Cat Welfare on our way into
Columbus. CW is a local no-kill shelter for cats. I've been supporting them for nearly 20 years
now. Since I've never exactly been high in the coin department, my support has always had to
be inventive. When they built a new facility years ago, they created a space where they have a
permanent "garage sale" every Saturday. For as long as the facility has existed, it has been
the final destination for anything that has reached the end of its residence with us. I know lots
of people that donate to Good Will, or the Kidney Foundation, or AmVets. Me? Cats. Anyone
who knew us when we had 10 cats, won't be terribly surprised by that. This trip? Well, 7 lawn
and leaf bags should tell you A) how long its been since we've made the trip, and B) how much
we purged the other day. Yay for the kitties!
From Cat Welfare, we zoomed downtown to the Statehouse. Apparently, our guardian angels
followed us and stood guard at the bone perfect on-the-street parking spot directly across from
the entrance we needed. All would have been bliss, had I remembered that all of my parking
meter change was neatly tucked in a bag with my other normal dashboard junk - at home. We
recently had the van worked on, and my husband had seen fit to EMPTY every stinking thing
out of it, but not put it back. Nifty. Several frantic searches later, we managed to find enough
change to give us 1 hour and 5 minutes on the meter. Since tours were supposed to take
45-60 min, and the next one started in less than 5 minutes, we knew we'd be cutting it close. It
was a sacrifice though - I had to part with an Alaskan quarter I'd hoarded for our quarter
collection. Rat farts.
While our parking place was truly directly across the street from the entrance we needed, its a
rather bad idea to jay-walk on one of the busiest streets in the city. We headed down to the
cross walk, fussing the whole way about the craziness of walking away from where we needed
to be, only to have to walk back. Worse, as we got to the corner, we were hit with evidence of
the age of the area, and the incompetence of the Columbus sewers. The corner was flooded
out - to a depth of 4-6 inches or so. Enough - that the water would have definitely been deeper
than Avalon's lights on her wheels. Bat farts.
We waited for the light, and actually entered the street - a good distance from the cross walk -
veering madly back toward the cross walk, before a renegade truck driver offed us. That's
when it happened, a snowman tragedy. In my efforts to simultaneously run and veer, I kicked
off the head of a snowman. Ack! As the little head rolled away, all I could think of was - OH no!
It'll get run over! So I ran to grab it. Think about that for a second. If I'm the one who kicked it
while veering, then I'm the one who was driving the wheelchair..... Oh yeah, I let go of my
daughter to chase down a plastic snowhead! AAAAGGGHHHH!!! I think my sister said it best,
"I thought there was supposed to be some genetic thing in moms to tell them to protect their
children at all times, not plastic!"
Before you call Children's Services on me, Avalon was fine, she grabbed her own wheels, and
Aurora popped back to grab her too. Not to mention that I only let go for a few seconds and
darted a few feet (with no cars anywhere near!). But good gravy, its guaranteed I'll never live
this one down. As they wheel me into the home in 40 or so years, I'm sure whomever is
pushing me will briefly let go and remind me of my horrid transgression on the streets of
downtown Columbus..
In the spirit of "conservation" - this was a kill several birds with one stone kind of day. I'm fully
aware (Hallelujah!) that gas is no longer $4/gal. However, I figure it can't hurt to act like it is -
so we're still trying to plan accordingly. Translation: if you're going downtown to the hospital,
add other downtown/way-to-downtown things onto your day.
Can you guess we had a "downtown" kind of day?
We started out by meandering slightly off course and stopping by Cat Welfare on our way into
Columbus. CW is a local no-kill shelter for cats. I've been supporting them for nearly 20 years
now. Since I've never exactly been high in the coin department, my support has always had to
be inventive. When they built a new facility years ago, they created a space where they have a
permanent "garage sale" every Saturday. For as long as the facility has existed, it has been
the final destination for anything that has reached the end of its residence with us. I know lots
of people that donate to Good Will, or the Kidney Foundation, or AmVets. Me? Cats. Anyone
who knew us when we had 10 cats, won't be terribly surprised by that. This trip? Well, 7 lawn
and leaf bags should tell you A) how long its been since we've made the trip, and B) how much
we purged the other day. Yay for the kitties!
From Cat Welfare, we zoomed downtown to the Statehouse. Apparently, our guardian angels
followed us and stood guard at the bone perfect on-the-street parking spot directly across from
the entrance we needed. All would have been bliss, had I remembered that all of my parking
meter change was neatly tucked in a bag with my other normal dashboard junk - at home. We
recently had the van worked on, and my husband had seen fit to EMPTY every stinking thing
out of it, but not put it back. Nifty. Several frantic searches later, we managed to find enough
change to give us 1 hour and 5 minutes on the meter. Since tours were supposed to take
45-60 min, and the next one started in less than 5 minutes, we knew we'd be cutting it close. It
was a sacrifice though - I had to part with an Alaskan quarter I'd hoarded for our quarter
collection. Rat farts.
While our parking place was truly directly across the street from the entrance we needed, its a
rather bad idea to jay-walk on one of the busiest streets in the city. We headed down to the
cross walk, fussing the whole way about the craziness of walking away from where we needed
to be, only to have to walk back. Worse, as we got to the corner, we were hit with evidence of
the age of the area, and the incompetence of the Columbus sewers. The corner was flooded
out - to a depth of 4-6 inches or so. Enough - that the water would have definitely been deeper
than Avalon's lights on her wheels. Bat farts.
We waited for the light, and actually entered the street - a good distance from the cross walk -
veering madly back toward the cross walk, before a renegade truck driver offed us. That's
when it happened, a snowman tragedy. In my efforts to simultaneously run and veer, I kicked
off the head of a snowman. Ack! As the little head rolled away, all I could think of was - OH no!
It'll get run over! So I ran to grab it. Think about that for a second. If I'm the one who kicked it
while veering, then I'm the one who was driving the wheelchair..... Oh yeah, I let go of my
daughter to chase down a plastic snowhead! AAAAGGGHHHH!!! I think my sister said it best,
"I thought there was supposed to be some genetic thing in moms to tell them to protect their
children at all times, not plastic!"
Before you call Children's Services on me, Avalon was fine, she grabbed her own wheels, and
Aurora popped back to grab her too. Not to mention that I only let go for a few seconds and
darted a few feet (with no cars anywhere near!). But good gravy, its guaranteed I'll never live
this one down. As they wheel me into the home in 40 or so years, I'm sure whomever is
pushing me will briefly let go and remind me of my horrid transgression on the streets of
downtown Columbus..
| Ohio House of Representatives Chambers |
| In the gallery, overlooking the House Chambers |
| Grinning with "the Gov" |
As we were on the subject of the gallery, the mother of the other family asked if she could
interrupt Stan for a moment. She turned to me and asked if I home schooled. When I
answered, "Yes" - she said she knew it, she'd home schooled her youngest, and could
recognize the level of interest in Ambrosia. She went on to tell a fascinating story of home
school legislation that had been brought up in those very chambers back in the early 1990's,
when she was teaching her daughter.
This family was from Oregon. They only recently moved here, to be closer to grandchildren.
The home school legislation she was discussing, had made an impact nationally, and had set
precedent all over the country. She said it had been a huge topic in Oregon - what was going
to happen in OH. It seems that the legislation that was introduced would have made home
schooling very difficult in Ohio. The bill had a tremendous amount of support from teachers'
unions and the like, as anything counter-public-education usually does. The day of the House
vote, it was a miserable, cold, snowy day. Yet...the gallery was packed full, to standing room
only, with overflow filling the halls of the statehouse....with home school families. No one from
the opposing side showed up. When the vote came to the floor, the representatives
recognized the commitment of the home school families, to have come from all over the state
on such a day. Their presence made such an impact, that the house voted down the
legislation, and has never revisited it. A government by the people, for the people, actually
worked that day. Can you have imagined a more perfect scenario to explain that concept to
Ambrosia? I was stunned.
During our chat in the House Chambers, Stan explained that the number one complaint he
hears from Representatives, is that they don't hear from constituents often enough. He told
Ambrosia that the Reps want to talk to the people they represent, and that they really do pay
attention to letters people write. He said that a personal, particularly handwritten, letter carries
multitudes more weight with them than mass emails or those postcards that campaigns have
you sign and mail. He encouraged Ambrosia to write her own letter to her Representative if
she had something she felt strongly about. I took a second and reminded her how we always
attend the Statehouse Rally for Childhood Cancer, and that our attendance and the rally are
yet another way of reaching out to our Reps and Senators. Stan agreed.
As we were leaving the chamber, the woman who had spoken about the home school
legislation came over to me. She apologized for being forward, but asked if, by chance,
Avalon was a cancer survivor. I said, "Yes." She then went on to say that their granddaughter
had cancer, and was being treated at Nationwide Children's! She's four and has
osteosarcoma. Of course we knew her doctor, he's one who did a lot of hospital time with
Avalon. We briefly discussed how wonderful the Heme-Onc department is, and how lucky their
children are to live here. They were thrilled to meet another ped-onc family, and to know that
kids do survive, even if they're slightly different that what you dreamed they would be. Can
you believe it? How could anyone not see a hand of fate in putting these exact two families
together today? I've said more than a few quiet, "Thank Yous" for it.
From the House Chamber, we had to route back to the rotunda for a brief stop outside of the
governor's office. With the wheelchair and stroller, we required a bit of backtracking to get
from place to place - because of needing the elevator. It was odd, but we were grateful our
guide was willing to do it. As we stood at the top of the stairs that lead to the governor's office,
Stan described the office, and the historical furniture that it holds. Abraham Lincoln was sitting
in that office, when he received the telegram that he had been elected president. How neat is
that?
As Stan continued with more great facts, we looked up, and saw that the governor had
emerged from the Senate Chambers. He was, of course, stopped by television crews - but the
kids thought it was neat to see that he was "real". About that time, Stan was ready to head off
on the next leg of the tour. Sadly, our time (and parking meter!) had run out - so we explained
our problem to our tour mates, and excused ourselves to go save the car and head off to our
Christmas party at the hospital. We wished our new friends much luck, and good health for
their granddaughter, and began to gather ourselves to head toward the elevator.
Then next thing we knew, a very sweet man was approaching us, commenting on Avalon's
rather fantastic wheelchair, not to mention her Christmas outfit. The governor went out of his
way to come up and chat with each of the kids. And I have to say, he actually talked to them.
We've done enough publicity stuff and fund raising events over the past 4 years, to have met
more than our fair share of phonies. I'm here to report, Gov. Strickland was actually very nice,
even when there was no one to see it but us. His aides were obviously irritated he stopped,
but he ignored them completely. Kudos to the governor!
As he was about to walk away, it occurred to me that I happened to have my camera with me,
because we were headed to the Christmas party. Being the ever-so-shy person I am...I told
him about the camera, and asked if there was any chance we might take a picture with the
governor? He grinned and said, "Absolutely!" completely ignoring the eyerolls of a couple of
his "handlers". When I got the camera out, I started to walk around in front of he and children.
He snatched the camera and delegated one of his guys to take the picture, saying, "Oh no you
don't! You've got to be in here too." He then put his arm around me, gave me a big squeeze,
and grinned like it was his job.
I believe I'm smitten with the governor.
interrupt Stan for a moment. She turned to me and asked if I home schooled. When I
answered, "Yes" - she said she knew it, she'd home schooled her youngest, and could
recognize the level of interest in Ambrosia. She went on to tell a fascinating story of home
school legislation that had been brought up in those very chambers back in the early 1990's,
when she was teaching her daughter.
This family was from Oregon. They only recently moved here, to be closer to grandchildren.
The home school legislation she was discussing, had made an impact nationally, and had set
precedent all over the country. She said it had been a huge topic in Oregon - what was going
to happen in OH. It seems that the legislation that was introduced would have made home
schooling very difficult in Ohio. The bill had a tremendous amount of support from teachers'
unions and the like, as anything counter-public-education usually does. The day of the House
vote, it was a miserable, cold, snowy day. Yet...the gallery was packed full, to standing room
only, with overflow filling the halls of the statehouse....with home school families. No one from
the opposing side showed up. When the vote came to the floor, the representatives
recognized the commitment of the home school families, to have come from all over the state
on such a day. Their presence made such an impact, that the house voted down the
legislation, and has never revisited it. A government by the people, for the people, actually
worked that day. Can you have imagined a more perfect scenario to explain that concept to
Ambrosia? I was stunned.
During our chat in the House Chambers, Stan explained that the number one complaint he
hears from Representatives, is that they don't hear from constituents often enough. He told
Ambrosia that the Reps want to talk to the people they represent, and that they really do pay
attention to letters people write. He said that a personal, particularly handwritten, letter carries
multitudes more weight with them than mass emails or those postcards that campaigns have
you sign and mail. He encouraged Ambrosia to write her own letter to her Representative if
she had something she felt strongly about. I took a second and reminded her how we always
attend the Statehouse Rally for Childhood Cancer, and that our attendance and the rally are
yet another way of reaching out to our Reps and Senators. Stan agreed.
As we were leaving the chamber, the woman who had spoken about the home school
legislation came over to me. She apologized for being forward, but asked if, by chance,
Avalon was a cancer survivor. I said, "Yes." She then went on to say that their granddaughter
had cancer, and was being treated at Nationwide Children's! She's four and has
osteosarcoma. Of course we knew her doctor, he's one who did a lot of hospital time with
Avalon. We briefly discussed how wonderful the Heme-Onc department is, and how lucky their
children are to live here. They were thrilled to meet another ped-onc family, and to know that
kids do survive, even if they're slightly different that what you dreamed they would be. Can
you believe it? How could anyone not see a hand of fate in putting these exact two families
together today? I've said more than a few quiet, "Thank Yous" for it.
From the House Chamber, we had to route back to the rotunda for a brief stop outside of the
governor's office. With the wheelchair and stroller, we required a bit of backtracking to get
from place to place - because of needing the elevator. It was odd, but we were grateful our
guide was willing to do it. As we stood at the top of the stairs that lead to the governor's office,
Stan described the office, and the historical furniture that it holds. Abraham Lincoln was sitting
in that office, when he received the telegram that he had been elected president. How neat is
that?
As Stan continued with more great facts, we looked up, and saw that the governor had
emerged from the Senate Chambers. He was, of course, stopped by television crews - but the
kids thought it was neat to see that he was "real". About that time, Stan was ready to head off
on the next leg of the tour. Sadly, our time (and parking meter!) had run out - so we explained
our problem to our tour mates, and excused ourselves to go save the car and head off to our
Christmas party at the hospital. We wished our new friends much luck, and good health for
their granddaughter, and began to gather ourselves to head toward the elevator.
Then next thing we knew, a very sweet man was approaching us, commenting on Avalon's
rather fantastic wheelchair, not to mention her Christmas outfit. The governor went out of his
way to come up and chat with each of the kids. And I have to say, he actually talked to them.
We've done enough publicity stuff and fund raising events over the past 4 years, to have met
more than our fair share of phonies. I'm here to report, Gov. Strickland was actually very nice,
even when there was no one to see it but us. His aides were obviously irritated he stopped,
but he ignored them completely. Kudos to the governor!
As he was about to walk away, it occurred to me that I happened to have my camera with me,
because we were headed to the Christmas party. Being the ever-so-shy person I am...I told
him about the camera, and asked if there was any chance we might take a picture with the
governor? He grinned and said, "Absolutely!" completely ignoring the eyerolls of a couple of
his "handlers". When I got the camera out, I started to walk around in front of he and children.
He snatched the camera and delegated one of his guys to take the picture, saying, "Oh no you
don't! You've got to be in here too." He then put his arm around me, gave me a big squeeze,
and grinned like it was his job.
I believe I'm smitten with the governor.
From the Statehouse, we headed toward the
hospital, with a brief stop off at Wendy's to pick
up lunch. I've learned lately to allow ridiculous
amounts of time to find parking, if you hope to be
able to leave your car somewhere. With a 300
bed hospital, doesn't one small 20 space
handicapped lot make perfect sense to you?
NOT.
We ate lunch in our much-coveted parking
space, and headed in to the hospital about 1/2
an hour before the party. We were hoping to
catch some time with a Hospital Foundation friend
we haven't seen for a long time. Once inside, we
found we weren't allowed into the Family
Resource Center where the party was being held
- it was closed until the exact time of the party.
We headed to the main lobby to wait it out, and
were soon joined by lots of friends. The one
good thing about the multitude of departments
Avalon's been seen in, is the familiarity its given
us. I honestly think its been years since we've
walked down a hallway and not seen someone we
know. It makes going to the hospital like visiting
friends, rather than the chore it could be. Avalon
never complains about having to go, I think
somewhere, deep down, she knows it means
she'll get a least one hug from someone who
loves her.
The main lobby ended up being a party in and of
itself. Our friends Christina and Lisa joined us,
as did Nancy and Will. We chatted with some
passing Heme-Onc nurses, and laughed with one
of the hospital photographers. Overall, I couldn't
have asked for a nicer wait!
I have to interject here, it kills me how people act
around the Blue Jackets players. OK, how
people behave around any form of "celebrity".
Now this may sound odd coming from the woman
who had taken pictures of the governor less than
an hour before...but I hope you'll get my point.
I'm endlessly shocked at how people see
celebrities as pieces of meat. As we families
were sprawled all over the lobby, you saw very
little interaction between the families and the
hospital employees that had invited them there.
Instead, a pack of employees were waiting at the
front doors, stalking the CBJ players, ready to
pounce on them. As soon as the guys walked in
the doors - the manhandling began...
Meanwhile, the families continued visiting and
laughing. You would have thought it was a
country social, not a gathering of pretty sick and
fragile kids. I guess that's the beauty of meeting
up with other medical families, we forget about
the fragile stuff, when we're all in the same boat.
Eventually, it was "time", and we all headed, en
masse, back to the Family Resource Center. Of
course they didn't open up punctually, why would
they? If we're late checking in for appointments,
we can be bumped. But why would time matter to
anyone else? Grrrr...
OK, so eventually they did open the doors, and
we all headed in. Here is gripe number two about
celebs and the common folk. Why on earth are
people so batty about autographs?! For the life
of me I don't understand it. So Mr. Blah can sign
his name. OK. This is truly impressive, Why? I
mean people actually buy and sell signatures -
what on earth for?!!! Don't get me wrong, we've
had a tremendous amount of fun meeting
"famous" people over the years (even before
Avalon was diagnosed), but I truly have never
given two hoots about their signatures. I'd far
prefer chatting for a few minutes or a hug. I'll
take a personal memory over something to show
other people any day.
Yet, here we were, standing in line to meet the
three players that were stationed in the FRC for
the party. As with other events, we didn't bring
anything for them to sign. (see above rant)
However, part of the party was giving the kids
CBJ pennants to have the players sign. OK, here
we go.
I played photographer for myself, and my friends
Lisa and Nancy - both had forgotten their
cameras. The nice thing was, even if I hadn't had
a camera, the hospital had a great thing set up.
They had two digital printers, and two or three
digital cameras. As children met the players, a
hospital child life worker took their pictures, then
every couple of kids, docked the camera, and
another worker printed out the pictures. Isn't that
neat? The families were tickled pink.
The three players present were ones we don't
know. We've seen Rostislav Klesla at one or two
previous events, but never had a chance to really
talk to him. R.J. Umberger and Jiri Novotny were
entirely new to us and therefore kind of off the
kids' radar screens. As I often tell the players
we've become friends with, yes - because we've
met them, we've become hockey fans. But the
truth is, we don't like the people we do because
of their jobs, that just happens to be how we met
them. We adore Ole because he's funny, witty,
and an all-around sweet young man. He
happens to play hockey for a living, but I would
have liked him just as much if he were a ditch
digger. He's got a heart as big as the
Lillehammer mountains he loves. So, while it was
nice to "meet" new players, I can guarantee we
weren't nearly as impressed as the people who
were impatiently waiting their turns to get their
autographs.
The girls grinned for the pictures, then headed
off to hug Stinger, whom they adore. We've been
at several events with Stinger, and he's always
perfectly wonderful to the kids. He makes a
special effort to interact with Aurora. I think he
realizes how left out the older sibling of a medical
child can be. He's always done a great job of
making Aurora feel special.
Speaking of being kind to Aurora, our favorite
photographer, Greg, was at the party too. This
man is one in a million. He took Aurora under his
wing last year, and has done a world of good for
her self confidence and attitude. He is the same
photographer that took the legendary picture of
Aurora with Gene Simmons (the one in Gene's
book). So he is "Aurora's" friend, in a constant
sea of people who revolve around Avalon, the
cancer "hero". While I do not for a single second
dispute that cancer kids are true heroes, I do feel
people fail to recognize that their sibs are heroes
too. The sibs are the ones who get dragged to
appointments, give up activities due to patient
limitations or scarce funds, and have to relinquish
parent time. Siblings of medical children have to
grow up way too fast, often in the face of losing
their brother or sister. In my mind, they deserve
hero status as well. Greg has been kind enough
to treat Aurora like that, and I'm eternally grateful
for it.
It didn't take Ambrosia and Avalon long to head
to the back room for craft time. The craft was
ingenious! Do you remember doing sand art? It
was huge in the 70s, when I was a kid. I had jars
of it all over my room, from various trips to the
state fair, or other vacation spots. (it was a
cheap souvenir) You put colored sand in layers
in a small bottle of some kind. You could use
toothpicks to make silly waves, and do all sorts of
things like tilting the bottles to get neat wave
patterns in the color bands. Anyway, here sat my
girls, making sand art! Except this was waaayyyy
better. Rather than using expensive colored
sand, which is difficult for moms to find, they were
using salt! You put good old cheap table salt in a
bowl, and use a stick of sidewalk chalk to color it.
You kind of "color" the salt with the chalk, mixing
and smushing a bit. Its fantastic! When their
creations were done, they topped the sand off
with a thick layer of Elmer's glue and screwed on
the lid, until the glue oozed out. Viola! Instant
art. How cool is that?!
The uncool part was watching Avalon trying to do
the project. To be perfectly honest...it was awful.
Her little hand shook while she tried to scoop the
salt and spoon it into her cup. She would try
several times before she could manage to spoon
up salt, kind of like a toddler aiming at Cheerios
for the first time. In fact, that's a lot what it was
like. Remember the first time a baby tries to work
a spoon? They know where it goes, and what its
supposed to do, but they can't quite work out the
logistics of it. That's Avalon. She tried to do
what the other kids were doing, but it was painful
to watch. The other kids and parents were
oblivious. If anything, the hospital workers were a
tad annoyed, because she took so long, for no
"apparent" reason. I'm quite sure any of her
docs or nurses would have seen exactly the
same thing I did. And honestly, probably have
been as heartsick as I was. Damn it. Its just not
fair... A five year old should be able to spoon salt
into a cup. Its not right.
From the salt craft, the girls bebopped over to a
foam picture frame craft. Avalon had lots of help
with the glue, so that wasn't quite as bad.
Besides, gluing on snowflakes isn't as exact as
working a spoon - its much easier for her. I
stayed out of both the craft activities. I do so
much with the kids at home, I think its vitally
important they learn to work with other adults.
Whenever we're at functions like this, I'd rather
they get help from volunteers, so they learn to
interact with people. Ambrosia loves it, and so
does Avalon - in the hospital setting. Its funny,
even the paralyzing paranoia she's developed
since the operation, isn't too bad at the hospital.
Children's is so familiar to her, its like home - so
she's much "free-er" here than other places. I'll
take that as a good thing.
While the girls were off to craft, I happened to
look over to where the players were. There they
stood, utterly ignored. I've seen this time and
again, but its still always amazes me. People will
kill themselves to get to a player for an autograph
and a picture - then act as if they're invisible.
People pay hundreds of dollars to attend events
with the players, so they can say they were there.
But at the events? No one barely speaks to
them. I had seen a glimpse of that at last year's
Blue Jackets fashion show. When I asked Ole
about it, he said that most of the time that's true.
People want to be in the same room with them, to
stare at them, and maybe get an autograph, but
after that, they're nothing. Sure enough - here it
was, happening again. The real killer to me were
the hospital employees. Even the people that
had stalked them down at the door, were now
ignoring their existence. I find it appalling.
Being the ever-so-shy person that I am (see a
pattern here?) I walked up and started talking
with them. I asked them if it stunk having people
kill themselves to "get something" from them,
then completely ignore their existence. Jiri's
English wasn't great enough to understand my
smart-alecing, but the other two laughed. We
started talking about which kids were mine, what
Avalon had, etc. We hadn't been chatting for too
long, when Ambrosia and Avalon appeared,
complaining they were bored. They asked if they
could play a board game, while they waited for
Ole to come down. I said sure - and why don't
you ask these guys to play? They're bored too.
So....they did!
"Will you play with us?" "Puh-lease???? Will you
please come play with us?"
Jiri's a giant teddy bear. He caved in a hot
second. So off he goes, being dragged by a 5
and 7 year old. Next thing we know, he's on the
floor, opening up some Nemo board game I've
never seen before. According to a teenage
friend of ours, the directions were insane - it
would have taken anyone a long time to figure
out. And here you had a man whose command
of English is less than perfect, being helped by a
2 year old, a brain-damaged 5 year old, and a 7
year old who's only been reading for a few years.
Oh yeah - this got really funny, really fast.
Rusty and R.J. were laughing hysterically. A
patient's grandfather who happened to be sitting
in the little couch area with us was giggling too -
and announced that he was pretty sure Jiri was
going to lose. When I assured them all that he
was, because my girls cheat, they all dissolved
into fits of giggles. R.J. chastised me NOT to
save Jiri, to let him sink, it was way funnier that
way. I agreed, I'd had no intention of saving him,
this was way better entertainment.
Pretty soon, Jiri was telling the girls they needed
to convince Rusty to come play. He told them
they were cute, and he wouldn't say no to them.
Sure enough, a couple of batted eyes, and Rusty
was in for the game too. I think R.J. nearly hurt
something laughing - it was all too funny.
About that time, I briefly got sidetracked talking to
Greg, our photographer friend. I had wanted to
thank him profusely for how nice he's been to
Aurora. Well, he got called away about the same
time R.J. came to tell me about the "game".
Somehow, in the midst of them playing, the
camera crews that were filming the party decided
they needed to film this. OK, so having it
recorded does show that these guys have huge
hearts. But honestly, I would have been happier
to keep this as our own memory. Last year, our
beloved Danny crammed himself at a little kids'
table to play etch a sketch with the girls. When
Jason Chimera teased him, the girls
horn-swaggled Jason too, and the two of them
ended up in etch a sketch competition. No one
but us knew about it, or filmed it, and its a happy
family memory. Again, its not about the "who
knows" - its about wonderful times we spent with
friends, that we hold in hearts.
This time though, the cameras were there. In all
honesty, I don't know how I thought they'd miss it.
We'd hooted and hollered so much, we must
have been quite the riot. The latest guffaws were
solidly due to the players themselves.
Apparently, Rusty had asked the FSN
videographer if he could borrow his microphone.
Then, he gave it to Jiri, telling him to "interview"
all of them, about "how the game was going" -
aka, intermission style at a hockey game. Too
funny! They even "interviewed" Anam, who
answered with his typical, "glab uckity blah oober
goo ba bacccc..." You get the idea.
The cameramen were in absolute hysterics. If
any of the video turns out, it will only be thanks to
stabilizers in the cameras. Not a chance they
were actually holding still. I asked the guy if I
could offer to sell a leg to get my hands on a
copy of the raw footage, and he said he wished
he could, but no go. I think I'm going to try to find
a way to call FSN and ask if I can purchase a
copy of the tape though - it really was painfully
funny.
All too soon though, the powers that be
demanded the boys report for duty - and leave
the hospital. And unfortunately, the players that
toured the floors, weren't allowed to come down
to the resource center when they were done.
We'd stuck around waiting for lots of Christmas
hugs, and the guys had been unable to come
visit. Cat farts.
Worst of all, the day ended on a pretty sour note.
The girls began noticing that the other children
were all carrying around toys. I overheard a child
explaining to her mom that the CBJ people had
given her the toy, that they said all heroes were
getting them. Funny, there sat my kids, with the
players, and they were the only ones missed. In
light of recent events, I wasn't surprised. I asked
a child life person that I know, if I had heard
correctly, or if it was my imagination. Sure
enough, I was spot on. She said the hand out
had been poorly organized, so they had decided
to give toys to the sibs too, to keep from having
hurt feelings. She then asked if one of my kids
had been missed, to which I had to answer, "No,
all of them were. As well as the teenager who
was with them." She was upset, and offered to
go ask about it, but I told her no, they didn't need
anything - I had just been curious.
However, apparently, she was curious too - and
went and asked about the toys. As we were
leaving, a CBJ staff member came out, asking the
childlife woman, what family it was for. When she
gestured to us, the look on the CBJ woman's face
couldn't have been much more sour, nor could
her words. Ah....so it hasn't been my imagination
- we have been blacklisted somehow. That's
when I went and did it, I decided to call her out.
Now, you know me, I'm ever-so-shy. (quit
laughing) In truth, in the past I might have
avoided conflict. But with age, comes wisdom.
(thank God, it helps balance the wrinkles) And
with wisdom, came a strict sense of purpose for
me. I do not lie, not under any circumstances.
(unless it involves gift giving, and those aren't
lies, those are happy fibs) I do not abide by liars.
I do my best to be a caring, friendly person and I
work my tail off to help, if I at all humanly can. Am
I universally loved and appreciated? Nope. See
that honesty clause above. Face it, some people
don't cotton to the truth, so I do periodically
offend people. However, age brings humility too,
and I'm the first to apologize if I've unwittingly
offended someone. If I've offended you
intentionally...well, that's a different story.
The above paragraph was meant to explain this.
The woman in question above, had lied to me
several weeks ago - and it was a whopper. I
decided that, obviously, we were on her "out" list,
so I may as well call her out on the fib-o-mundo. I
point blank asked her about it. What ensued,
was a string of lies so pathetically tied together, it
wouldn't have slowed down a geriatric fly. I gave
her several opportunities to dig herself out, and
the falsehoods continued to flow freely. Ahhh...I
suddenly had my answer and my closure. OK,
association with the foundation over. No
problem. Guess I'll volunteer my time elsewhere.
While this may all sound like sour grapes,
shockingly, that's not why I'm sharing it. True, it
did hurt my feelings. After all, we've put in a
considerable amount of time and effort for this
person, and the Columbus Blue Jackets
Foundation as a whole. And also true, I wish
whatever the real reason is for the sudden
mistreatment had been honestly reported, so I
could have done something to try to remedy it, if I
have any responsibility for it. After all, isn't that
how civilized adults are supposed to act? But
shockingly, I'm not that distraught over the whole
fiasco, there's too much to learn from it.
First of all, I have to return to my Everything
Happens for a Reason mantra. Maybe we had to
be shut out of this charity, so we had more time
to give elsewhere. When one door shuts,
another one opens. Maybe this wasn't something
I said or did, maybe its about the person, or
someone else, and we were the fall-out guys.
Who knows? But when all is said and done, this
doesn't physically harm my family, so its just not
that important.
Am I sad? Sure. Avalon's life is difficult every
day now. Any chance to let her have some
special fun, is something we jump at. The world
(and hospital) seem to think that because she's
done with chemo, life is rosy and simple and she
no longer needs the distractions that cancer
patients do. Oh, mon ami, the opposite is true.
Life for her is much worse now than on chemo,
and it may never improve. I would gladly give up
any and all special events to watch her be able to
run, and skip, and bounce with abandon like a
normal 5 year old. I would live in a box, if it meant
she could push her wheelchair to the curb
forever. I would give my own life, to know she
was going to grow up to be all that we dreamed
for her when she was born. Well, none of that is
going to happen. She will continue to fight, and
continue to fade into the background as she
ages, no matter how much her struggles
continue. She will always be our heart and soul,
but will fade from other's minds long before her
battles end. It is what it is. So to have one of her
avenues of distraction suddenly shut, yes, it does
stink. But it certainly won't beat us, we've fought
too hard to keep her to surrender to something
so trivial.
I guess that's the point I'm trying to make in
sharing this. I've struggled with this the past
month. I've had sleepless nights wondering what
on earth I did or said that made them rob Avalon
of fun times? The answer is: it doesn't matter.
The time and energy I've wasted on worrying
about it, wasn't worth it. We all have
disappointments in life. Tough. The key is, to
learn to see disappointments and rough times, as
the spoils of the good times. Don't see negative
events as bad/awful/destroying - try to see them
as proof that good exists. You can't have good
without bad. If everyone was nice all the time,
you wouldn't appreciate it. For every nasty
person, or unkind comment I've run across, I can
name 50 positive, life-affirming things to
counter-act them. I wouldn't treasure the good
people, if I didn't have the "badd-uns" to compare
them too.
Case in point, even as I was being "snow-jobbed"
- a friendly face was waiting to take the place of
the scowl. As the CBJ staffer walked away, I was
greeted with a bright smile, and a "Where are
your children?" Once I shook myself out of my
funk, I recognized a wonderful Worthington Police
Officer that we met while volunteering at a game
last year. She is just charming, and we've been
lucky enough to meet up with her at a few events
during the year. So as one woman was unkind
and pushed my heart down, another one was
right there to pick it right back up again.
Whenever one door closes - another will open,
even if you don't immediately recognize the
doorman. At the time, I was too flummoxed to see
the yin and yang of it all. But you can bet I'll be
emailing her soon with a thank you.
So no, we'll likely not do anything else with the
CBJ Foundation. But you know what? That's
OK. We helped raise tens of thousands of
dollars last year. We helped raise money for
Easter Seals, Adventures for Wish Kids, Kids N
Kamp, the Sibling Support Program at
Nationwide, the Children's Miracle Network, and
lots of other charities that the CBJ Foundation
gives too. I refuse to see that as anything but
positive. In addition, we met our wonderful
friends Doug and Lori through the Foundation.
They have been special blessings sent to us from
Heaven. If our dear Fireflowers are the reason
we were supposed to interact with the foundation,
so be it. Thank you, foundation, you increased
the size of our family, and we're grateful. And if
we never meet another hockey player, that's OK
too. We found Ole and Guro, and maybe they
were the people the universe intended we meet
all along. I have a sneaking suspicion they're
poised to be fully adopted by us as well. And
Danny? Oh Danny, he gave Avalon purpose,
when no one else did. He did his job in the
universe, and pulled a little girl out of the
darkness. We owe the foundation an awful lot for
that too.
So, was I pleased that our wonderful day ended
on a sour note? No. And I fully admit I obsessed
about it the entire way home. Finally, it was the
hospital, with a brief stop off at Wendy's to pick
up lunch. I've learned lately to allow ridiculous
amounts of time to find parking, if you hope to be
able to leave your car somewhere. With a 300
bed hospital, doesn't one small 20 space
handicapped lot make perfect sense to you?
NOT.
We ate lunch in our much-coveted parking
space, and headed in to the hospital about 1/2
an hour before the party. We were hoping to
catch some time with a Hospital Foundation friend
we haven't seen for a long time. Once inside, we
found we weren't allowed into the Family
Resource Center where the party was being held
- it was closed until the exact time of the party.
We headed to the main lobby to wait it out, and
were soon joined by lots of friends. The one
good thing about the multitude of departments
Avalon's been seen in, is the familiarity its given
us. I honestly think its been years since we've
walked down a hallway and not seen someone we
know. It makes going to the hospital like visiting
friends, rather than the chore it could be. Avalon
never complains about having to go, I think
somewhere, deep down, she knows it means
she'll get a least one hug from someone who
loves her.
The main lobby ended up being a party in and of
itself. Our friends Christina and Lisa joined us,
as did Nancy and Will. We chatted with some
passing Heme-Onc nurses, and laughed with one
of the hospital photographers. Overall, I couldn't
have asked for a nicer wait!
I have to interject here, it kills me how people act
around the Blue Jackets players. OK, how
people behave around any form of "celebrity".
Now this may sound odd coming from the woman
who had taken pictures of the governor less than
an hour before...but I hope you'll get my point.
I'm endlessly shocked at how people see
celebrities as pieces of meat. As we families
were sprawled all over the lobby, you saw very
little interaction between the families and the
hospital employees that had invited them there.
Instead, a pack of employees were waiting at the
front doors, stalking the CBJ players, ready to
pounce on them. As soon as the guys walked in
the doors - the manhandling began...
Meanwhile, the families continued visiting and
laughing. You would have thought it was a
country social, not a gathering of pretty sick and
fragile kids. I guess that's the beauty of meeting
up with other medical families, we forget about
the fragile stuff, when we're all in the same boat.
Eventually, it was "time", and we all headed, en
masse, back to the Family Resource Center. Of
course they didn't open up punctually, why would
they? If we're late checking in for appointments,
we can be bumped. But why would time matter to
anyone else? Grrrr...
OK, so eventually they did open the doors, and
we all headed in. Here is gripe number two about
celebs and the common folk. Why on earth are
people so batty about autographs?! For the life
of me I don't understand it. So Mr. Blah can sign
his name. OK. This is truly impressive, Why? I
mean people actually buy and sell signatures -
what on earth for?!!! Don't get me wrong, we've
had a tremendous amount of fun meeting
"famous" people over the years (even before
Avalon was diagnosed), but I truly have never
given two hoots about their signatures. I'd far
prefer chatting for a few minutes or a hug. I'll
take a personal memory over something to show
other people any day.
Yet, here we were, standing in line to meet the
three players that were stationed in the FRC for
the party. As with other events, we didn't bring
anything for them to sign. (see above rant)
However, part of the party was giving the kids
CBJ pennants to have the players sign. OK, here
we go.
I played photographer for myself, and my friends
Lisa and Nancy - both had forgotten their
cameras. The nice thing was, even if I hadn't had
a camera, the hospital had a great thing set up.
They had two digital printers, and two or three
digital cameras. As children met the players, a
hospital child life worker took their pictures, then
every couple of kids, docked the camera, and
another worker printed out the pictures. Isn't that
neat? The families were tickled pink.
The three players present were ones we don't
know. We've seen Rostislav Klesla at one or two
previous events, but never had a chance to really
talk to him. R.J. Umberger and Jiri Novotny were
entirely new to us and therefore kind of off the
kids' radar screens. As I often tell the players
we've become friends with, yes - because we've
met them, we've become hockey fans. But the
truth is, we don't like the people we do because
of their jobs, that just happens to be how we met
them. We adore Ole because he's funny, witty,
and an all-around sweet young man. He
happens to play hockey for a living, but I would
have liked him just as much if he were a ditch
digger. He's got a heart as big as the
Lillehammer mountains he loves. So, while it was
nice to "meet" new players, I can guarantee we
weren't nearly as impressed as the people who
were impatiently waiting their turns to get their
autographs.
The girls grinned for the pictures, then headed
off to hug Stinger, whom they adore. We've been
at several events with Stinger, and he's always
perfectly wonderful to the kids. He makes a
special effort to interact with Aurora. I think he
realizes how left out the older sibling of a medical
child can be. He's always done a great job of
making Aurora feel special.
Speaking of being kind to Aurora, our favorite
photographer, Greg, was at the party too. This
man is one in a million. He took Aurora under his
wing last year, and has done a world of good for
her self confidence and attitude. He is the same
photographer that took the legendary picture of
Aurora with Gene Simmons (the one in Gene's
book). So he is "Aurora's" friend, in a constant
sea of people who revolve around Avalon, the
cancer "hero". While I do not for a single second
dispute that cancer kids are true heroes, I do feel
people fail to recognize that their sibs are heroes
too. The sibs are the ones who get dragged to
appointments, give up activities due to patient
limitations or scarce funds, and have to relinquish
parent time. Siblings of medical children have to
grow up way too fast, often in the face of losing
their brother or sister. In my mind, they deserve
hero status as well. Greg has been kind enough
to treat Aurora like that, and I'm eternally grateful
for it.
It didn't take Ambrosia and Avalon long to head
to the back room for craft time. The craft was
ingenious! Do you remember doing sand art? It
was huge in the 70s, when I was a kid. I had jars
of it all over my room, from various trips to the
state fair, or other vacation spots. (it was a
cheap souvenir) You put colored sand in layers
in a small bottle of some kind. You could use
toothpicks to make silly waves, and do all sorts of
things like tilting the bottles to get neat wave
patterns in the color bands. Anyway, here sat my
girls, making sand art! Except this was waaayyyy
better. Rather than using expensive colored
sand, which is difficult for moms to find, they were
using salt! You put good old cheap table salt in a
bowl, and use a stick of sidewalk chalk to color it.
You kind of "color" the salt with the chalk, mixing
and smushing a bit. Its fantastic! When their
creations were done, they topped the sand off
with a thick layer of Elmer's glue and screwed on
the lid, until the glue oozed out. Viola! Instant
art. How cool is that?!
The uncool part was watching Avalon trying to do
the project. To be perfectly honest...it was awful.
Her little hand shook while she tried to scoop the
salt and spoon it into her cup. She would try
several times before she could manage to spoon
up salt, kind of like a toddler aiming at Cheerios
for the first time. In fact, that's a lot what it was
like. Remember the first time a baby tries to work
a spoon? They know where it goes, and what its
supposed to do, but they can't quite work out the
logistics of it. That's Avalon. She tried to do
what the other kids were doing, but it was painful
to watch. The other kids and parents were
oblivious. If anything, the hospital workers were a
tad annoyed, because she took so long, for no
"apparent" reason. I'm quite sure any of her
docs or nurses would have seen exactly the
same thing I did. And honestly, probably have
been as heartsick as I was. Damn it. Its just not
fair... A five year old should be able to spoon salt
into a cup. Its not right.
From the salt craft, the girls bebopped over to a
foam picture frame craft. Avalon had lots of help
with the glue, so that wasn't quite as bad.
Besides, gluing on snowflakes isn't as exact as
working a spoon - its much easier for her. I
stayed out of both the craft activities. I do so
much with the kids at home, I think its vitally
important they learn to work with other adults.
Whenever we're at functions like this, I'd rather
they get help from volunteers, so they learn to
interact with people. Ambrosia loves it, and so
does Avalon - in the hospital setting. Its funny,
even the paralyzing paranoia she's developed
since the operation, isn't too bad at the hospital.
Children's is so familiar to her, its like home - so
she's much "free-er" here than other places. I'll
take that as a good thing.
While the girls were off to craft, I happened to
look over to where the players were. There they
stood, utterly ignored. I've seen this time and
again, but its still always amazes me. People will
kill themselves to get to a player for an autograph
and a picture - then act as if they're invisible.
People pay hundreds of dollars to attend events
with the players, so they can say they were there.
But at the events? No one barely speaks to
them. I had seen a glimpse of that at last year's
Blue Jackets fashion show. When I asked Ole
about it, he said that most of the time that's true.
People want to be in the same room with them, to
stare at them, and maybe get an autograph, but
after that, they're nothing. Sure enough - here it
was, happening again. The real killer to me were
the hospital employees. Even the people that
had stalked them down at the door, were now
ignoring their existence. I find it appalling.
Being the ever-so-shy person that I am (see a
pattern here?) I walked up and started talking
with them. I asked them if it stunk having people
kill themselves to "get something" from them,
then completely ignore their existence. Jiri's
English wasn't great enough to understand my
smart-alecing, but the other two laughed. We
started talking about which kids were mine, what
Avalon had, etc. We hadn't been chatting for too
long, when Ambrosia and Avalon appeared,
complaining they were bored. They asked if they
could play a board game, while they waited for
Ole to come down. I said sure - and why don't
you ask these guys to play? They're bored too.
So....they did!
"Will you play with us?" "Puh-lease???? Will you
please come play with us?"
Jiri's a giant teddy bear. He caved in a hot
second. So off he goes, being dragged by a 5
and 7 year old. Next thing we know, he's on the
floor, opening up some Nemo board game I've
never seen before. According to a teenage
friend of ours, the directions were insane - it
would have taken anyone a long time to figure
out. And here you had a man whose command
of English is less than perfect, being helped by a
2 year old, a brain-damaged 5 year old, and a 7
year old who's only been reading for a few years.
Oh yeah - this got really funny, really fast.
Rusty and R.J. were laughing hysterically. A
patient's grandfather who happened to be sitting
in the little couch area with us was giggling too -
and announced that he was pretty sure Jiri was
going to lose. When I assured them all that he
was, because my girls cheat, they all dissolved
into fits of giggles. R.J. chastised me NOT to
save Jiri, to let him sink, it was way funnier that
way. I agreed, I'd had no intention of saving him,
this was way better entertainment.
Pretty soon, Jiri was telling the girls they needed
to convince Rusty to come play. He told them
they were cute, and he wouldn't say no to them.
Sure enough, a couple of batted eyes, and Rusty
was in for the game too. I think R.J. nearly hurt
something laughing - it was all too funny.
About that time, I briefly got sidetracked talking to
Greg, our photographer friend. I had wanted to
thank him profusely for how nice he's been to
Aurora. Well, he got called away about the same
time R.J. came to tell me about the "game".
Somehow, in the midst of them playing, the
camera crews that were filming the party decided
they needed to film this. OK, so having it
recorded does show that these guys have huge
hearts. But honestly, I would have been happier
to keep this as our own memory. Last year, our
beloved Danny crammed himself at a little kids'
table to play etch a sketch with the girls. When
Jason Chimera teased him, the girls
horn-swaggled Jason too, and the two of them
ended up in etch a sketch competition. No one
but us knew about it, or filmed it, and its a happy
family memory. Again, its not about the "who
knows" - its about wonderful times we spent with
friends, that we hold in hearts.
This time though, the cameras were there. In all
honesty, I don't know how I thought they'd miss it.
We'd hooted and hollered so much, we must
have been quite the riot. The latest guffaws were
solidly due to the players themselves.
Apparently, Rusty had asked the FSN
videographer if he could borrow his microphone.
Then, he gave it to Jiri, telling him to "interview"
all of them, about "how the game was going" -
aka, intermission style at a hockey game. Too
funny! They even "interviewed" Anam, who
answered with his typical, "glab uckity blah oober
goo ba bacccc..." You get the idea.
The cameramen were in absolute hysterics. If
any of the video turns out, it will only be thanks to
stabilizers in the cameras. Not a chance they
were actually holding still. I asked the guy if I
could offer to sell a leg to get my hands on a
copy of the raw footage, and he said he wished
he could, but no go. I think I'm going to try to find
a way to call FSN and ask if I can purchase a
copy of the tape though - it really was painfully
funny.
All too soon though, the powers that be
demanded the boys report for duty - and leave
the hospital. And unfortunately, the players that
toured the floors, weren't allowed to come down
to the resource center when they were done.
We'd stuck around waiting for lots of Christmas
hugs, and the guys had been unable to come
visit. Cat farts.
Worst of all, the day ended on a pretty sour note.
The girls began noticing that the other children
were all carrying around toys. I overheard a child
explaining to her mom that the CBJ people had
given her the toy, that they said all heroes were
getting them. Funny, there sat my kids, with the
players, and they were the only ones missed. In
light of recent events, I wasn't surprised. I asked
a child life person that I know, if I had heard
correctly, or if it was my imagination. Sure
enough, I was spot on. She said the hand out
had been poorly organized, so they had decided
to give toys to the sibs too, to keep from having
hurt feelings. She then asked if one of my kids
had been missed, to which I had to answer, "No,
all of them were. As well as the teenager who
was with them." She was upset, and offered to
go ask about it, but I told her no, they didn't need
anything - I had just been curious.
However, apparently, she was curious too - and
went and asked about the toys. As we were
leaving, a CBJ staff member came out, asking the
childlife woman, what family it was for. When she
gestured to us, the look on the CBJ woman's face
couldn't have been much more sour, nor could
her words. Ah....so it hasn't been my imagination
- we have been blacklisted somehow. That's
when I went and did it, I decided to call her out.
Now, you know me, I'm ever-so-shy. (quit
laughing) In truth, in the past I might have
avoided conflict. But with age, comes wisdom.
(thank God, it helps balance the wrinkles) And
with wisdom, came a strict sense of purpose for
me. I do not lie, not under any circumstances.
(unless it involves gift giving, and those aren't
lies, those are happy fibs) I do not abide by liars.
I do my best to be a caring, friendly person and I
work my tail off to help, if I at all humanly can. Am
I universally loved and appreciated? Nope. See
that honesty clause above. Face it, some people
don't cotton to the truth, so I do periodically
offend people. However, age brings humility too,
and I'm the first to apologize if I've unwittingly
offended someone. If I've offended you
intentionally...well, that's a different story.
The above paragraph was meant to explain this.
The woman in question above, had lied to me
several weeks ago - and it was a whopper. I
decided that, obviously, we were on her "out" list,
so I may as well call her out on the fib-o-mundo. I
point blank asked her about it. What ensued,
was a string of lies so pathetically tied together, it
wouldn't have slowed down a geriatric fly. I gave
her several opportunities to dig herself out, and
the falsehoods continued to flow freely. Ahhh...I
suddenly had my answer and my closure. OK,
association with the foundation over. No
problem. Guess I'll volunteer my time elsewhere.
While this may all sound like sour grapes,
shockingly, that's not why I'm sharing it. True, it
did hurt my feelings. After all, we've put in a
considerable amount of time and effort for this
person, and the Columbus Blue Jackets
Foundation as a whole. And also true, I wish
whatever the real reason is for the sudden
mistreatment had been honestly reported, so I
could have done something to try to remedy it, if I
have any responsibility for it. After all, isn't that
how civilized adults are supposed to act? But
shockingly, I'm not that distraught over the whole
fiasco, there's too much to learn from it.
First of all, I have to return to my Everything
Happens for a Reason mantra. Maybe we had to
be shut out of this charity, so we had more time
to give elsewhere. When one door shuts,
another one opens. Maybe this wasn't something
I said or did, maybe its about the person, or
someone else, and we were the fall-out guys.
Who knows? But when all is said and done, this
doesn't physically harm my family, so its just not
that important.
Am I sad? Sure. Avalon's life is difficult every
day now. Any chance to let her have some
special fun, is something we jump at. The world
(and hospital) seem to think that because she's
done with chemo, life is rosy and simple and she
no longer needs the distractions that cancer
patients do. Oh, mon ami, the opposite is true.
Life for her is much worse now than on chemo,
and it may never improve. I would gladly give up
any and all special events to watch her be able to
run, and skip, and bounce with abandon like a
normal 5 year old. I would live in a box, if it meant
she could push her wheelchair to the curb
forever. I would give my own life, to know she
was going to grow up to be all that we dreamed
for her when she was born. Well, none of that is
going to happen. She will continue to fight, and
continue to fade into the background as she
ages, no matter how much her struggles
continue. She will always be our heart and soul,
but will fade from other's minds long before her
battles end. It is what it is. So to have one of her
avenues of distraction suddenly shut, yes, it does
stink. But it certainly won't beat us, we've fought
too hard to keep her to surrender to something
so trivial.
I guess that's the point I'm trying to make in
sharing this. I've struggled with this the past
month. I've had sleepless nights wondering what
on earth I did or said that made them rob Avalon
of fun times? The answer is: it doesn't matter.
The time and energy I've wasted on worrying
about it, wasn't worth it. We all have
disappointments in life. Tough. The key is, to
learn to see disappointments and rough times, as
the spoils of the good times. Don't see negative
events as bad/awful/destroying - try to see them
as proof that good exists. You can't have good
without bad. If everyone was nice all the time,
you wouldn't appreciate it. For every nasty
person, or unkind comment I've run across, I can
name 50 positive, life-affirming things to
counter-act them. I wouldn't treasure the good
people, if I didn't have the "badd-uns" to compare
them too.
Case in point, even as I was being "snow-jobbed"
- a friendly face was waiting to take the place of
the scowl. As the CBJ staffer walked away, I was
greeted with a bright smile, and a "Where are
your children?" Once I shook myself out of my
funk, I recognized a wonderful Worthington Police
Officer that we met while volunteering at a game
last year. She is just charming, and we've been
lucky enough to meet up with her at a few events
during the year. So as one woman was unkind
and pushed my heart down, another one was
right there to pick it right back up again.
Whenever one door closes - another will open,
even if you don't immediately recognize the
doorman. At the time, I was too flummoxed to see
the yin and yang of it all. But you can bet I'll be
emailing her soon with a thank you.
So no, we'll likely not do anything else with the
CBJ Foundation. But you know what? That's
OK. We helped raise tens of thousands of
dollars last year. We helped raise money for
Easter Seals, Adventures for Wish Kids, Kids N
Kamp, the Sibling Support Program at
Nationwide, the Children's Miracle Network, and
lots of other charities that the CBJ Foundation
gives too. I refuse to see that as anything but
positive. In addition, we met our wonderful
friends Doug and Lori through the Foundation.
They have been special blessings sent to us from
Heaven. If our dear Fireflowers are the reason
we were supposed to interact with the foundation,
so be it. Thank you, foundation, you increased
the size of our family, and we're grateful. And if
we never meet another hockey player, that's OK
too. We found Ole and Guro, and maybe they
were the people the universe intended we meet
all along. I have a sneaking suspicion they're
poised to be fully adopted by us as well. And
Danny? Oh Danny, he gave Avalon purpose,
when no one else did. He did his job in the
universe, and pulled a little girl out of the
darkness. We owe the foundation an awful lot for
that too.
So, was I pleased that our wonderful day ended
on a sour note? No. And I fully admit I obsessed
about it the entire way home. Finally, it was the
| Can you tell we love Christina? |
| Hard at work. Boy are those pumps familiar... |
| Some sissy help |
| Nope - not going to hug you... |
| Struggling with the spoon... |
| Photographer Greg, teaching me about "composition" |
| OK, you're cool. |
| I am so tired of that stupid camera... |
| I'm not! |
| Proud as proud gets |
| I love you, Stinger!!! |
| 'Playa Stinger' - "How you doin'?" |
| I will NOT be out-cuted! |
| ...but I'm pretty sure he like it. :-) |
| Jiri's in deep trouble... |
| Rusty has been sucked in, and Anam's there to help! |
kids who drop-kicked me back to reality. They LOUDLY reminded me to stop whining, we'd had
a wonderful day. They also reminded me of several of my own words (who knew they were
listening?) and forcibly shoved me off of my high horse cliff, back down to the valley of reality.
They were right. We've had a lot of fun, we've met great people. No regrets. Life's too short
for those anyway.
Immediately after the party, I might have given today a C. Once my children smacked me back
to reality, I have to admit - the whole thing was an A+++++ day. We met the governor, hugged
on old friends, made salt art in urine specimen cups, played hysterical games with new friends,
and Aurora won a door prize at the party. A solid A day. No wonder Avalon slept the whole way
home!
a wonderful day. They also reminded me of several of my own words (who knew they were
listening?) and forcibly shoved me off of my high horse cliff, back down to the valley of reality.
They were right. We've had a lot of fun, we've met great people. No regrets. Life's too short
for those anyway.
Immediately after the party, I might have given today a C. Once my children smacked me back
to reality, I have to admit - the whole thing was an A+++++ day. We met the governor, hugged
on old friends, made salt art in urine specimen cups, played hysterical games with new friends,
and Aurora won a door prize at the party. A solid A day. No wonder Avalon slept the whole way
home!