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

Snow!!!

The snow just kept coming down last night! I am not sure about exact levels but I have not seen snow like this fall in a one-day period in the Richmond area in a LONG time. We will surely set some records here.

It is almost 9 AM and it's still snowing! It's been going pretty steadily since 5 PM.

Those of you who live in the Richmond area know that while snows like this can happen, they are rare and far between. When we do get snow like this, it is typically in January or February, not December. Here's where I am going with this: this snow is a gift for Charlotte! I am sure it will be her last snowfall and while she won't be getting out and playing in it, she can see it from her window. Is it also a coincidence that Frosty the Snowman was on TV last night? I think not! I have asked everyone on the CJSTUF facebook page to build a snowman for CJ today (if you live where there is snow). You can upload a "fan picture" on the Facebook page as well so we can see your creations.

It's the little gifts.

Charlotte woke up about 11 PM last night as I was giving her meds and she drank a good bit of chocolate milk again. She's been drinking and stirring off and on all evening. I went to sleep about midnight but Roger was up with her and did her 3 AM meds. I woke up to find that two police cars were in our cul de sac (called out to one of the houses for some reason). With all the snow, they actually got stuck! Roger went out at one point and tried to help dig them out. A snowplow came through (which I am sure was a result of the policemen calling them out. There is no way they would come to our street at this point.) but it didn't seem to help. Anyway, at some point, the cops got everything fixed and were able to leave. THAT's how crazy this snow is!

I stayed up with her after 3 and got some sleep on the trundle bed next to hers. I put the Spa Radio channel from Pandora (on my iphone) on and the music was so relaxing. We were both snoozing.

We had some good mother/daughter moments around 7 this morning as I gave her next dose of meds. We have the morphine pump but I told our nurse to take her time getting out here today. I know the weather has made things nasty and we are doing ok.

A few folks did sign up for early morning reading but the weather has canned that as well. All is good! If you have signed up for any time this weekend and cannot make it due to weather, please just come when you can. You may call or email us ahead of time if you want to check. We completely understand. On the other hand, if you live in the neighborhood and want to venture out, come on down to Slash Court! We'll have a coffee/cocoa party!

She has been drinking the chocolate milk off and on and I actually stepped away from posting this for a bit because she has started talking pretty well. She is fairly alert and saying little things to us, answering questions and smiling. She is comfortable. That is good!

I had posted yesterday that we found a group of people (three separate people, actually) step up to help the family in Denver. Well, I received a great email last night from my high school friend Cara in Florida about this and I had to share. Her email text follows:

Just wanted to share six degrees of CJ that gave me chills today.

My good friend Katie lost her mom to lung cancer on December 22nd last year, so we've been talking some lately about doing something to honor her mom in some way, and Katie really wanted to find someone struggling through a similar situation that she could help in her mom's name. Of course Charlotte came up when we were discussing all this. Remembering that Katie and her family lived in Denver for years, I mentioned the family that you had "shouted out" for thinking Katie might know someone up there who could help out.

Today was a half day at my boys' school, so we met Katie and her 3 kiddoes at the mall for lunch and a Santa visit. Katie told me about her best friend from Denver, who is a mom of twins and who's "Moms of Multiples" group had money to give burning a hole in their pockets. Katie GLOWED when she was saying how her friend jumped onto the opportunity to help the family you know from Houston. What are the chances that these things happen? (This, to me, is how God works).

So a mom from Richmond who grew up in Port Orange travels to Houston for treatment for her little girl, and meets a family from Denver in desperate need. A high school friend of the Richmond mom has a friend raising her kids in Port Orange but who lived in Denver for years. This friend lost her mom last Christmas to lung cancer, and was searching for a way to pay it forward and honor her mom. So she calls her Denver best friend and hooks her up with the Denver mom thanks to the Richmond mom's thoughtfulness and caring in her OWN time of desperate need.

Thanks to Charlotte. And you.

Did you follow all that? This is what we want CJSTUF to be about. This is "where it's at". I am constantly amazed at the way the Holy Spirit works within our lives and within our communities to help us help each other. Complete strangers have been drawn together from all over the country and all over the world. Now they are not just helping us but reaching out to help others. Charlotte is the catalyst but YOU are the engines. The Holy Spirit is the fuel to keep that oil burning! And it never runs dry!

There's your Guideposts spiritual moment for the day. If you are somewhere there is snow, stay home if you can and be safe if you must go out. If you are somewhere sunny and warm (or at least sunny), enjoy the day and think Frosty the Snowman thoughts!

HUGS,
Rachel

As Good as it Gets

Today has been an ok day (so far). She slept pretty much through the night and only roused at about 6 AM. I administered her needed meds. At first, she was not able to open her mouth to talk or eat but after the medications got into her, she actually took a sip of chocolate milk and then proceeded to drink a full 8 oz (a rompy cup) full. She talked to Roger a little bit too. The day has consisted of:

Visits from friends, schoolmates, and Noah's Children staff to read, sing, and talk to her (and us).

Administration of medications (all timing related so lots of tracking involved)

Awaiting the snow and now watching it fall. It is coming down pretty well right now and anyone in the Richmond area (or those keeping an eye on the Weather Channel) know that we are headed for some good snow. I guess it's a good thing that everyone bought out the grocery chains and filled up their gas tanks.

She has been sleeping, dozing, sometimes slightly awake, and even occasionally responsive to questions with head nods and appropriate waves, etc. Sometimes she is even snoring. She hasn't eaten anything since this morning but she genuinely seems comfortable and content. That makes me happy.

The visits have all been wonderful and I was really amused when one of her preschool friends said, "Her hair grew back!" and another one said, "And her face got a lot bigger!" I love the innocence of children. I think they had a good visit. At the same time, I think Roger had almost as much fun entertaining the kids who visited. It's good therapy all around.

They will be delivering a pump for the morphine tonight and we will get it started tomorrow. This will hopefully even out her morphine dose while allowing us to "push" some extra if she seems in distress. It's hard to say where things will go from here (there are multiple possibilities) but I doubt she will be alert on a regular basis from this point forward.

I have VERY good news on the Denver front: I have had THREE people contact me about helping with our family in need that lives in Golden. I have sent out an email to everyone, putting all in touch with one another, so hopefully the ball is ROLLING. Be on the lookout. We may use this blog or our website as a vehicle to help with PR or networking as we help this family. Thank you to those of you who have agreed to help. Lara Lombardo, a friend of Roger's from high school (Denver North!), helped to organize a bake sale in Denver recently for CJ and they raised a little over $400. We have asked them to pass these funds directly on to the family in Denver in CJ's honor. Thanks to any of you who participated in that. The CJSTUF network is working already! THIS is what it's all about!! (No, Roger, it's NOT the Hokey Pokey!!)

OK, I understand dinner is on its way so I plan to go watch the snow, enjoy my daughter, enjoy a meal, and stay safe and cozy indoors. Y'all do the same!

Rachel

Settling In

Our return trip was easy and relatively uneventful. At least the traveling part.

The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.

We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.

As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!

We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.

This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.

Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.

Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.

Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.

The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.

After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.

Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!

Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.

Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.

Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.

I think that's it for now. I will sign off and wish you good evening. It's good to be home.