Sacred Places and Bourbon

We all have our sacred places.

In what has become something of a weekly ritual, I am sitting at TaZa Coffee Shop in Westover Hills after my church choir gig doing my best job of NOT working on what I was originally supposed to be doing and basking in the glow of serendipity. I feel very comfortable here and when I want to be alone and/or do some work (or write a blog post), this a good place.

I've often quoted (and mis-quoted) the line from Kung Fu when Caine says, "when a man finds his way, Heaven is gentle." (Here's the video. The quote is very near the end at 9:47 but the entire episode, even though it's edited, is a good watch) That's kind of been working on many levels for me lately. Along with all the darkness this month brings us, there has also been plenty of light and doorways leading me, seemingly, to where I'm supposed to go.

For example, as I settled in to my coffee and bagel here at TaZa, I noticed some people messing with the art on the walls and after the initial "STOP THIEF!" impulse passed, I realized they were the actual artists. Wasting no time, I obnoxiously jumped up to talk to them and see if we could get some pieces for the Art Auction on Sept. 30. They didn't bat an eyelash and they all agreed to figure out something to donate!

But what about the heading of this blog post? The concept of "Sacred Places" has been haunting me in both bright and dark ways recently. I love historic sites and being in the same place Patrick Henry spoke or performing in the same place someone like Jon Hendricks or Tony Bennett have performed really gets me "geeking." Same thing for places where I feel a connection because of Charlotte.

So it really should be no surprise that there are places that are important to me on a spiritual level and I feel pulled to them for one reason or another. One of the oldest places I feel that pull is my Grandma's (Gramsies) old house in Denver. I remember spending a huge amount of time running around that couple acres or so of land. I often thought to myself how happy I was just being there.

It was inconceivable to me that I would ever see the time when I wouldn't be able to go back. So when she sold it to the neighboring college and they knocked down the houses, my concept of reality was shaken to the core. I remember going back for the first time afterward and being very disturbed by what I saw.

We all have our sacred places.

Another is the short stretch of Lee Davis Rd in Mechanicsville which runs in front of the house where Charlotte used to go to Hanover Montessori School. She really started to shine there and it's that crowd of her friends and their families that became a cornerstone of our support "Network" after she was diagnosed. I often drive that stretch of road on my way way home from Romp n' Roll. It helps me feel the connection to her.

It's actually very difficult for me to drive that little bit of road but I've always thought it was ridiculous to avoid places or take unnecessary detours because of memories so my rebellious side sticks my tongue out and goes that route anyway.

Of course, aren't I altering my path because of memories already? Silly boy.

Speaking of Romp n' Roll...One of the places I feel closest to Charlotte is where the Virginia Center Marketplace store was located. For me, her spirit permeates the entire area from Target ("There's ALWAYS something to buy at Target!") to Chick-fil-a and everywhere in between. The old Romp n' Roll location, which is now an Original Mattress Store, still has her energy imprinted there. She was our official greeter and many times, the first person some of our oldest customers met was Charlotte. I pop my head in there sometimes just to be there. I think I'm starting to freak out the employees a little.

So a mattress store is now one of my sacred places. Go figure.

Then there's COSTCO. Another oft quoted conversation is: Me: "Charlotte, what do we get at COSTCO?"

Charlotte: "Pizza and ice cream!"

Yep, it was one of "our places." Charlotte and I would shop there and sometimes she would push the cart from way down below. I can still vividly see that tiny little kid trying to push when the cart was full of stuff. We would usually get pizza or ice cream while we were there (sometimes both; sometimes a hot dog) and I always remember being so worried about her falling off the bench. It was my little bit of obsessive parenting.

I took her there several times after we had started the journey and she was always the absolute best kid at those times. I had more than one person make comments to me about how obvious it was that there was a strong bond between us. I live for those memories.

COSTCO definitely has "sacred place" status.

I go there these days as much to "commune" with Charlotte as to shop for stuff. Yesterday, the concept of that really hit me as Rachel and I were there together. It was really crowded and it seemed most of the people there had become partially unhinged for some reason. I might have felt very angry that people were acting as stupidly as they were but for the fact that I was thinking about Charlotte a lot which makes most situations better.

We did NOT get pizza or ice cream this time but that's ok. It still served its "sacred place" purpose.

Then, a little later, a chance encounter with a fellow Cubs fan at Martin's finished the job of renewing my piece of mind. At least for a little while. Martin's is not a sacred place but that old man who noticed my Cubs hat made it move a little higher on the list.

Last but not least, as I was singing at my choir job today, Pastor Donna's message was about "Sacred Places." I kid you not. My highest compliment to any priest, pastor, guru, therapist, imam, qoph, monk, or any other person who claims religious leadership is that they make me think. Ed did that at St. James The Less as did Kent at Trinity in Fredericksburg. So did that Buddhist monk on the airplane so many years ago. Donna sure did that to me this morning.

Those doors keep opening. I'm probably rationalizing on a massive level but I'm going to keep going with it.

Now for the "Bourbon" part:

Let me go back a few weeks to a link sent to me by one of our many amazing supporters (my brother, Vance, in fact) which announced a giveaway by bourbon maker, Buffalo Trace. They had produced 174 bottles of top-shelf straight Kentucky bourbon from what they called the "Millennium Barrel" and were allowing non-profit organizations the opportunity receive one bottle each for fundraising purposes. These gift boxes will probably be valued at over a hundred dollars if not many hundreds of dollars.

I was a little leery at first about using something alcoholic to fund raise for a children's based organization but given the unique nature of the bottle, I got over it pretty quickly, especially after tasting it at our board night out at Lemaire. (PS There are still two Mondays in July remaining to benefit CJSTUF if you need a great excuse for a fabulous meal.)

I went ahead an submitted our application with the thought that we might receive it in time for our Art Auction. It's not "art," per se, but it's a very high-quality item and our event will be a good venue for a special item like this; very adult (which is another reason we don't have a problem with it).

After a few days, I received an email from Buffalo Trace letting me know they were reviewing our application but in the meantime, I might be interested in another opportunity being offered by another brand under their umbrella, Eagle Rare. They also make and sell high quality bourbon but this time, the idea was to have people submit stories of friends, family, etc...who live "Rare Lives." The grand prize winners will win $20,000 to be donated to the non-profit of their choice and several runners up will have $2,000 donated. The qualities they listed as those exhibited by deserving nominees are courage, leadership, survival, devotion, character, and heroism.

So I nominated Rachel. I mean, duh!

The thing is, I'm not known for being the most thorough reader of things the first time through so I didn't catch the part about how winners will be decided by people voting at the Eagle Rare website. I thought there would be a panel of judges or something or I might not have done it. We had sort of sworn off voting contests after the Kindermusic Grant fiasco (Pepsi is sending me regular emails inviting me back to the new-and-improved Pepsi Refresh contest but I've been resisting) and even now, I'm a little gun shy about promoting the contest.

That was until I checked back on the Eagle Rare Life page a few days later and saw that Rachel had already received over 100 votes with very little promotion.

That convinced me that it was a good idea to continue. If Rachel (and in turn, CJSTUF) should win the $20,000, then CJ's Meal Fairies can really get off the ground, and even if she finishes as low as 7th, $2,000 is four (4) families helped.

As of 1:30 Sunday, we were already at 400 votes. Voting lasts until January 5, 2012 and people can vote once every day.

So in closing, I return to Kung Fu. Not with video of the deep quote of the day but of probably the worst sword fight ever choreographed for film. Enjoy! http://www.youtube.com/watch?v=PktNLnPEApw

Very quick update. CJ is doing OK. Just OK.

Very quick update. CJ is doing OK. Just OK. Definitely not thriving but hanging in there. She's still pretty tired although she has been eating and walking around a bit more.She slept nearly all day on Wednesday which meant she woke up at 3am on Thursday morning. Mommy had to work all day Thursday so I took CJ duty. We read books, watched Finding Nemo, ate some...I took her to the clinic to get her Velcade and to get her dressing changed. Nurse April is so good at it, Charlotte didn't even whimper once as she pulled of the cover. Nurse Debbie talked at length with me about how she's doing and whether we should continue the IV fluids overnight (we will).After clinic, we went to People's Bank to drop some more paperwork for the stimulus loan and drop off a $1550.00 check we got from a bazaar held at a church in Charlotte's honor. Thanks so much everyone. We are increasingly having to use CJ funds for things like PT, OT, possible leftover bills from the proton radiation treatments, etc...so it is being utilized. While we were there, Charlotte ate plain M&Ms. (Won't touch the peanut ones)After the bank we went and got "PIZZA AND ICE CREAM!!!" (well only pizza really) at COSTCO. CJ ate about 1/3 of a piece which is pretty good and then we went shopping. I bought her the Snow White DVD set so if anyone was thinking of getting that for her for Christmas, sorry to foil your plans. After an afternnon nap for both CJ and Daddy, we watched it and she watched the whole thing even the scary parts.This morning, Mommy got to get up about 5:30 to take care of the pump. CJ was eating waffles when I came down."Her Devon"is in town and will be visiting sometime today. Should be a bright event in a rainy day.Gotta go play...I mean work.

Since it's rainy and cold today and most of you (at least in VA) are stuck indoors, I will give you all a second update for the day! Lucky you!First of all, good news and not so good news about some of our friends. Our friend Halle's latest MRI was today and it was clear. Hooray! Unfortunately, our friend Alex also had an MRI today and his is showing regrowth. He will probably have another surgery soon.These are both kids (and their families) that we met while in Texas. We will think positive thoughts for both of them!Also, Reese has given up her wheelchair and continues to improve each week. We are so happy that she is on the road to recovery. When Roger was at the clinic yesterday, he got our photo of Charlotte from the Kourageous Kids exhibit. We also got about 8 copies of the Kourageous Kids flyer that features a wonderful picture of Reese on the cover, a great story about her families journey with ASK, and then photos of all the other Kourageous Kids. What is really funny is that on the same page as Reese's story, there is a picture of Charlotte that was taken at the Head Shaving Party (wearing her "Bald Chicks rock" tee). I'm not sure why they used it unless they saw it on Reese's website and thought maybe it was a picture of her (???) but it's a great picture of CJ and a fun surprise for us. Charlotte was up around 5:30 this morning with the beeping of the IV pump. She was awake until about 10 AM. Watched TV for about 3 hours and then just pooped out again.Speaking of poop, a little extra laxative helped the girl along so that is one less worry for the day.I am expecting "Charlotte's Devon" any minute now for a visit so I'm hoping her almost 2.5 hour nap will have been enough to refresh her so that she can be a little bit social. Tomorrow there will be a Bake Sale at the West Park Ukrops (across from Costco on W. Broad Street). Ladies from Richmond Mommies (many of whom are also Romp n' Roll customers) have come together to bake and organize this fundraiser for Charlotte. There will also be Charlotte Bracelets sold there. Please come out from 1-4 PM (brave the weather) and support these fabulous ladies!One of the churches that my parents are involved in (Ebenezer Lutheran in Central Florida) is also holding a rummage sale/bazaar this Saturday for Charlotte. Funds raised will also be matched by Thrivent (a Lutheran Fraternal organization) so they are hoping to raise a good deal of $$. From what I understand, the community has really rallied around Charlotte and especially my parents at this difficult time. We have already been blessed by notes and gifts from members of this church and we are very grateful for their compassion and generosity. My brain keeps gearing up for the (as yet to be scheduled) MRI that will be coming our way in a few weeks. I am trying not to get too worked up about it but I know that this will be a very important scan that will most certainly set our direction for treatment for the next while. One day at a time...I guess that's all I have to say for now. It looks like it will be a cold and rainy weekend in VA so I hope everyone stays warm and dry. I can't believe we had to turn on the heat before October 15th!Rachel

Another "grand adventure" for us here in Texas

Another "grand adventure" for us here in Texas. We certainly can say that we are making the most of our time here. It was another day to sleep in and after breakfast, Charlotte and I headed out on the buses again. This time I had the route planned and we left right from the stop in front of RMH. Our first stop was Rothko Chapel. It is on the campus of the University of St. Thomas. The chapel was commissioned by Dominique and John De Menil (I have no idea who they are) and built/designed by Mark Rothko, a well-known abstract expressionist artist. The space is unusual, serene, and interesting. The outside looks very plain (just a nondescript brick building). The interior is a round(ish) shape with 14 large, dark painted panels placed around the room. There is natural and artificial light coming in from the top of the chapel. When you step in, the space seems rather dark. But as you stay within the space, the light fills up the room. It is almost like dawn taking place within the room as you sit there. It is a very quiet space designed for prayer and contemplation. The center celebrates all faiths and based on information on their website, they have frequent special events. The place is also open to the public daily for prayer or meditation. There are benches and kneeling pillows within the chapel. The interesting thing to me about the painted panels was that they were a great focal point for meditation. Each one was unique and some of them had brush strokes that evoked images or designs, even though they were basically monochromatic panels. It was almost like looking at clouds and finding shapes within the brushstrokes. I am sure that everyone would see something a little different. We stayed in there for a little while and Charlotte did a great job being quiet. She even whispered "tweet tweet Mommy" when she wanted to get my attention. From there, we hopped on another bus and headed over to the movie theater that was across the street from (DUN DUN DUN...) COSTCO. So we had lunch (pizza and ice cream, of course) at Costco and then went to the 2:00 movie to see Ponyo. If you haven't seen this movie yet, put it on your list. Roger and I have been fans of Miyazaki (the writer/director) since we saw Spirited Away and we have since seen many of his other great movies (Howl's Moving Castle, Kiki's Delivery Service, My Neighbor Totoro). Each one is a visual masterpiece and the stories are sweet fairy tales. This one is his version of The Little Mermaid. Charlotte was mesmerized and really enjoyed the story. There was one part where the boy was looking for his mother after a storm and when he couldn't find her, he began to cry. Charlotte started to actually get upset too but I assured her that everything was ok (and the mom appeared in the next scene...All good!)After the movie, we hopped back on the bus(es) and just got home. What a full day! Back to the grind tomorrow with proton at 8:30. Let's pray that everything goes according to schedule this week with no machines breaking down. That would be good!!Rachel

An Update

Very good day overall yesterday.

Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...

Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!

We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!

Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!

Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!

A Couple Days Off

Wow, a day off. A couple actually. I'm planning to have quite the weekend with Charlotte if she'll let me. I actually have a little planning to do.

Harry Potter was very good. They really messed with the ending so if you're planning to go see it, don't expect the book. There were at least two major plot revisions and one sizable inconsistancy that I think they did on purpose. We'll see how they resolve it in the last movie.

Merrilee said Charlotte was nigh on perfect and the easiest babysitting gig ever. I'm not surprized.

After the movie, I accidentally (there are no such things as accidents, right?) took the other exit out of the parking garage and found myself needing to turn around to head back to The House. I figured I'd just turn at the next light and head back in that general direction. That's when I saw the COSTCO. I found a COSTCO! And it was beautiful. Bananas, really good bread, Horizon organic chocolate milk, cheese, more cheese! AH! Some people need chocolate, some need drugs and alcohol. COSTCO helps me cope.

There's a carnival today after lunch and I'm thinking there's some mini skeeball in our future.

Charlotte is resting at the moment. Not sleeping but doing her quite, self amusement thing she does sometimes. She didn't want to leave the room today so I honored that. Her appetite sure isn't what it used to be lately. I did at least get her to eat a cup of applesauce. Fluids aren't a problem. The apple juice (thanks Merrillee) and the chocolate milk (thank you, COSTCO! Thank you! Thank you! Thank you!...ahem...sorry) are flowing liberally and the diapers are heavy. No luck potty training but at least she's now letting me brush her teeth every day. Small victories.

I did laundry last night which makes me feel good. Especially the folding part. Very zen. I picked that up from Gregory Hines. Well, not PERSONALLY. He said it in an interview on 60 Minutes or 20/20 or something like that many years ago and it stuck in my head.

Gotta go plan the weekend.

Another Great Day for Charlotte. She is Amazing!

I am changing the time zone to "Hawaii Time". Maybe that's wishful thinking...
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel

Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?

Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.