Amazing Stories

Our Chick-fil-A Birthday Dinner

As you know, we marked Charlotte's 7th birthday on Monday.  The day included laughter, tears, hugs, an honorary mention on WCVE, dinner at Chick-Fil-A, a chocolate milk toast, and a showing of Finding Nemo. Roger and I were touched by the sweet messages we received as well as the generous donations made to the foundation in her honor that day. 


On Friday morning, I turned to Roger and said, "Wow! It sure has been a long week. Monday seems like a long time ago."  He agreed.  Between the emotional exhaustion at the beginning of the week, the Wine Down event on Wednesday in which we raised $1000 for CJSTUF (hurrah!), and the normal business of our jobs, it had proven to be a very long week, indeed.  


Then came Friday.  I ventured off to my job at the Dominion School and Roger had the opportunity to participate in the Moriah McNeil Celebrity Golf Classic to benefit ReeseStrong.  One of the generous patrons of the organization had bought an extra foursome and donated it for use by dads of pediatric cancer patients.  Roger joined Reese's dad and a few other guys for a beautiful day on the links.  

Roger, Walter Klauer, & Emanuel McNeil

Moriah's dad, Emanuel McNeil, is a former NFL football player. He lost his daughter Moriah to cancer in 2004 and organizes this charity golf tournament every year in her honor.  The proceeds benefit a different children's charity annually.  With these connections, it made sense that quite a few NFL players would be hitting the links.  It wasn't until Roger reached the tournament, however, that he realized some of these guys were the same football players who came and sang Frosty the Snowman to Charlotte on a hot summer day when we were holed up in the ASK clinic for a treatment in 2009.  The visit had been a huge hit with Charlotte and had even been featured on the CBS news (briefly).  As Roger talked about this with the football players, many of them mentioned remembering Charlotte.  Then one guy pulled out his phone and showed us this video.  

He has had this video on his phone since 2009.  Roger was floored! 

In the meantime, among my many meetings of the day, I was scheduled to interview a potential instructional assistant for the Dominion School.  The young lady arrived at the scheduled time and we began to talk about her work history and why she was seeking employment with us.  I asked her to say a little bit about why she liked her job and she told me this story. She works at Build-a-Bear. 


"I really love being able to see the happy faces on the children.  A few years ago, I had the opportunity to work with a family that came into our store.  The little girl was about 3 or 4 years old and she was sick.  She came into the store after hours with her best friend and together they made creations for her, her parents, and her best friend. We were so touched by this little girl and found out a few weeks later that she had passed away.  I still think about her a lot and how we were able to make her happy."

Our creations from Build-a-Bear,
including Frosty the Bad-Ass

As I sat there listening to her story, I realized where this was going.  I was near tears as I listened to her accounting of our very own Build-a-Bear visit.  I was thinking, "Should I say something? Is that appropriate?" Finally, I realized I needed to tell her.  I said, "I hope this doesn't upset you, but I need to let you know, that's my daughter you're talking about." I pointed towards the picture of Charlotte on my desk and the girl's jaw dropped to the floor.  She said, "Oh my goodness! That's her! We have her picture in our office at the store and I still think about her and talk about her all the time!"  We both started crying.  


Eventually, we composed ourselves and carried on with the rest of the interview.  On my way home from work, I got a message from Roger that he had something interesting to tell me.  I told him that I had a great story for him as well.  We met up and recounted these stories to each other in disbelief and amazement.  


I don't always believe in "signs" or messages, but perhaps these simple, touching stories delivered to both Roger and myself on the same day are a way of showing us that Charlotte continues to touch people's lives as much in death as she did in life. Of course, I think of our girl every single day. But it warms my heart in unimaginable ways to realize that she had such a profound impact on people who are virtual strangers.  


That, my friends, is the best birthday present anyone could ask for.  Don't you agree?

This Is Why We're Here

We here at CJ's ThumbsUp Foundation often post photos of financial assistance grants going out in the mail with the caption, "This is why we're here" or publish updates about this event or that, trying to keep everyone energized about the mission of CJSTUF.org.

But that's only part of it.

A large chunk of why this non-profit exists is because of a little girl named Charlotte Jennie who was born on July 9, 2005, seven years ago today.  SHE’S why this thing exists at all.

So many of you already know about Charlotte (CJ) that it seems ridiculously redundant to retell the story but what we will say is that because of this amazing, adorable, courageous, intelligent, curly-haired girl, and the way she charmed everyone she met (still seems to), we are moved to try and keep that energy moving forward.

It is very difficult to think that our little Monkey Butt would have just finished her second year of school, that she would now be swimming or going to camp, that we would be taking trips to see grandparents…

But that’s not the reality with which we’ve been entrusted.

The reality is that at any one time there might be upwards of 70 families of children receiving treatment on the 7^th floor of VCU/Children’s Hospital of Richmond and so many others moving through the various outpatient clinics.

The reality is that we just sent out 10 more Financial Assistance Grants totaling $5,000 and that just barely brought us even with demand FOR NOW.

The reality is that there are many, many other parents, grandparents, siblings, and caregivers all struggling to keep it together right now, at this very moment, through the worst nightmare imaginable.

The reality is that, because of Charlotte’s inspiration, upon which we draw every day, you have been moved to support our mission which, in turn, gives us a very strong coping mechanism allowing us to face each day as it comes.  Please believe it when we say that some days the act of getting out of bed seems like more than we can bear.

Today is one of those days.  But we WILL get out of bed because of Charlotte and what this Foundation has become to those who have built it and to those who have benefitted from it (some of the same people fit into both categories).

So Rachel will go to her first day of school at The Dominion School For Autism as principal and Roger will meet donors and do his show at WHAN Radio.  Many will raise a chocolate milk toast and watch Mary Poppins or Finding Nemo or Lady and the Tramp or one of her other favorite movies (she had several).  A listen to the Curious George Soundtrack is in order as well. Or giving "five" to Snook from "Big, Big World."

Hopefully all will be inspired to be more than they are right now and keep growing from there.

This is why we’re here.

Happy Birthday, Baby Girl.

CJSTUF Spotlight: Rachel Reynolds

Position: Executive Director, Co-Founder, CJ’s Mommy

Rachel Reynolds is originally from Daytona Beach, Florida where her mother, Gayellen, and stepfather, John, currently live.  She grew up listening to the roar emanating from Daytona International Speedway and working at her godmother’s hotel on the beach.

An exceptional student, Rachel participated in the International Baccalaureate program at Spruce Creek HighSchool in Port Orange and graduated second in her class.  She entered the University of Miami in Coral Gables as a Music Therapy Major and graduated with her Bachelor’s Degree in 1997.

While at “The U,” Rachel met a long-haired, wild dressing, authority bucking jazz vocal graduate student named Roger who eventually, somehow, talked her into marrying him and running away to Richmond, Virginia.  It just so happens that she conveniently had an internship waiting for her at the Virginia Treatment Center For Children so it worked out ok.

After two years in Richmond, they picked up stakes and moved to Boone, NC where Rachel started graduate studies in Speech Language Pathology at Appalachian State University.  After earning her Master’s, Virginia called again and they moved back; first to Fredericksburg and then finally to Ashland where they bought their first home and where they still reside.

Rachel began working at Commonwealth Autism Services in 2004, left in 2007 to run a small business, and returned to CAS in 2011.  She specializes in ABA Therapy and recently began her run as principal of The Dominion School For Autism.

Right in the middle of all that (2004 to be precise), Rachel found out she was pregnant and on July 9, 2005, gave birth to Charlotte Jennie Reynolds who became the center of Rachel’s life.  Charlotte was a beautiful, sweet (mostly), curly-haired little girl who learned quickly that “being adorable gets you stuff.” She had an amazing little voice that melted hearts and made everyone fall in love with her.  She was, indeed, very special.

In 2009, an ultimate burden was placed upon Rachel and Roger when CJ was diagnosed with a primitive neuroectodermal tumor (PNET) in her brain.  Rachel was pushed to the limit of what a parent should endure and was pushed past it when Charlotte lost her battle on January 7, 2005.

Despite the nightmare, Rachel has been able to continue her life, co-founding CJ’s Thumbs Up Foundation with Roger, acting as executive director.  And through the pain, she has retained her ability to laugh even so far as joining an improve comedy troupe in her tiny amount of spare time.  Because she knows, first hand, the healing power of laughter.

And so, through the sadness and tears, she can also smile as she answers “4-1/2 Questions.”

Four And A Half Questions:

1)      Q: What is your favorite food that you’ve never eaten?

A: Lobster

2)      Q: What is your day job?
A: Principal of The Dominion School For Autism/CAS

3)      Q: What is one of your favorite things about Charlotte?
A: Her laugh and her voice (which is technically 2 things but we’ll let it slide).

4)      Q: What is your top goal for CJSTUF.org?

A: Be recognized nationwide.

            ½)   Q: Wouldn’t it be cool if…
                        A: a celebrity played for CJSTUF on Jeopardy?

For more information on her journey through the world of pediatric cancer, check out her book: Four Seasons For Charlotte on Palari Books or follow her personal blog, I See What You Meme.

Oh! The Chafing!

At the risk of slighting those of you in the “over 21” age range, I am rarely inspired by grownups anymore.  Not that grownups don’t do amazing deeds all the time, it’s just that on average, those deeds pale in comparison to what “our kids” achieve daily.

Len on the road

                This weekend, I was inspired by a grown up.  His name is Len Forkas and he (along with many others) got on a bicycle in Oceanside, California and pedaled nearly 3,000 miles across the United States, all the way to Annapolis, Maryland in what was called the Race AcrossAmerica.  Not only that, he won his division (50-59 years old) and placed 10^th overall, edging out riders much younger than himself.

                Len had a bucket load of inspiration as he was using the event to fundraise for Hopecam.org, the non-profit organization he founded that connects homebound children undergoing treatment for cancer, and other life threatening illnesses, with their friends, families, and schools using laptops, high speed internet, and web cameras.

                Charlotte received a Hopecam notebook computer while she was undergoing treatment and we used it for Skyping, emailing, writing Caringbridge updates, and most importantly, for the Reading Vigil. We played recordings of friends/family reading books to CJ and people Skyped in from all over including our friend, Dr. Karen Massar who, while sitting in The Netherlands, read to Charlotte in Dutch.  It’s still one of the most beautiful things I’ve ever heard.

                One of the methods employed for keeping the purpose of the ride front and center (not to mention keeping Len pumped and focused), was to dedicate each day of his ride to one of the many children who have benefited from Hopecam’s endeavors.  On that day, Len would be read descriptions of the child as he rode. Charlotte got day 8 and a video dedication.

They also invited Rachel and me to Annapolis to be among the cheering crowd as Len crossed the finish line.  The wonderful people at Hopecam, including interim Executive Director Jennifer Bond, took very good care of us, paying for the room at The Doubletree Hotel and breakfast Sunday morning. When it became clear that Len was going to get in much later on Sunday then they had anticipated, they offered to pay for another night at the hotel so that we could stay and still see Len cross the “FINISH” line Sunday evening.

We didn’t mind since Annapolis is a beautiful town and was calling out to be explored by us. We figured we could leave early Monday morning in order to get Rachel to work in time.

So after a full day of walking, we settled at the courtyard into which the cyclists would be riding and waited.  There was a rather long time in between finishers which gave us time to network with people in the Hopecam crowd and with other riders’ crews.  One Canadian rider, nicknamed “The Hammer,” actually got hit by a car in Arizona yet was relatively uninjured and finished the race in ninth place overall.  One member of his crew had the torn up jersey he had been wearing at the time of the crash and waved it as he crossed the line.  There are many other stories and not nearly enough space.

Len hoisting his bike in celebration

We finally got word that Len was on his way and the large Hopecam crowd excitedly gathered around the finish line.  When he came around the corner in the dark with his various lights shining and blinking like a big rig on the highway, the crowd went nuts, us included.  When he got off that bike and immediately bent down to greet all the children who were assembled up front (and there were a LOT of them), it showed, even in his exhausted state, where his priorities lay.

Shannon

Soon, the emcee brought Len on stage to receive his medal, given to him by two time survivor and Hopecam beneficiary, Shannon Eastman.  Len wasted no time making sure everyone knew who the star of this event was.  “I just finished the toughest bike race in the world but it’s peanuts compared to what Shannon has had to do.” With Shannon standing close on the stage, he said, “I could stop at any time, Shannon couldn’t.  She had to finish.”

Throughout the evening, I found myself wondering over and over again, “How can I do something like this?”  It wouldn’t be easy.  Just thinking about the amount of time and effort it took to train Len, assemble the crew, plan who was going to do what and where, not to mention feeding everyone, is enough to make a lot of people quit before they even begin trying.

Roger, Len, and Rachel

But you know us; especially when we’re inspired.

Anyone wanna go for a bike ride?

Share your memories with us

Saturday January 7th will mark two years since Charlotte emerged from her consuming chrysalis and flew away as a beautiful butterfly. 

We will remember the day with friends and family at 1 PM in our cul-de-sac. Anyone local is welcome to attend. We will have plenty of balloons and blank notes so people can write and send messages to Charlotte.


If you cannot attend our Remember CJ event, we invite you to remember sweet Charlotte in your own way. Please leave a message in the comments, either here in the blog or on our Facebook page, telling us how you have marked the day, a favorite Charlotte memory, or anything else you would like to share.


We appreciate the love and support that we feel from our community at this time. 


With much love,


Rachel & Roger

If you have tissues handy, you're invited to watch this video created by our friends, Julia Dollison & Kerry Marsh, in honor of Charlotte. It's a beautiful tribute to our girl.  

Radiance from Julia Dollison on Vimeo.

About the music: transcribed from Keith Jarrett's improvised solo piano recording in "Radiance Part 8", vocal a cappella arrangement by Kerry Marsh, lyrics by Julia Dollison, performed by Kerry Marsh & Julia Dollison.

Lyrics:

Sometimes in her sleep, she smiles.

Is she dreaming? is she far away?

Sometimes in her sleep, she laughs.

Is she happy? does she wish she could stay?

Sometimes in her sleep, she cries,

and you hold her and pray.

Morning comes, and she'll forget -

Things we dream about never make much sense.

Then the sun shines in, so bright,

just like her radiance.

All these moments fly by so quickly,

but she never seems to mind -

as long as you're by her side.

Sometimes in her sleep,

She awakens to find you were there all the while.

With a smile, she returns to her dreams.

Remembering CJ

For anyone interested in helping us remember Charlotte on the day of her death, we are going to have a small get-together at our house at 1 PM. We will have some helium balloons to release with notes to CJ. You may bring your own balloons/notes as well (no mylar please).  Then we'll have some fellowship time with coffee and hot cocoa/chocolate milk for all.  Anyone is welcome. There is an invitation on Facebook if you would like to RSVP

If you live far away and can not attend, you are welcome to remember Charlotte in your own way. Please feel free to share your remembrances on 1/7 on the CJSTUF facebook page or on our blog. We will set up a special page on January 6th and you will be able to add comments to that post with your memories of Charlotte or ways that you are remembering her that day.  


Thank you,



Rachel & Roger

August Business of the Month

Do you need a cake for a special occasion?

Kalico Kitchen can help! As our Business of the Month, Kalico Kitchen will give CJSTUF 20% for any cake reserved this month.

Jeni made Charlotte's 4th birthday cake and I can tell you that it was not only beautiful; it was delicious as well!

 So what are you waiting for? Call Kalico Kitchen at  804-262-1966.

While we're talking about birthdays and other special occasions, this would be a great time to remind you that you can hold a Birthday Party for CJ any time of the year. Children (or adults) of any age can request donations to CJSTUF in lieu of presents and we will provide you with fun goodie cups filled with adorable swag PLUS a t-shirt for the birthday boy or girl. 

 Stay tuned for more information on our September business of the month. We just partnered with a local representative from Gold Does Good for an amazing opportunity. Imagine helping our foundation and getting paid for it! Stay tuned for more details in future blog posts as well as on our Facebook site.


PS Did you get our August newsletter?  If you're not already on our mailing list, it's easy to sign up.  It's the best way to stay hip to all the latest news (besides this blog, of course).

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

July 9, 2011

The roller coaster has been in high gear this week.

Can it really be Charlotte’s 6^th Birthday? Can it really be a year and a half since she flew away? Yesterday, I was talking with one of our friends about it and she asked “Doesn’t it just seem…so…” and couldn’t finish the question because it’s such an unfathomable thing to contemplate.

I still see her everywhere and think about her all the time. One weird thing is that I haven’t dreamed about her much lately. In fact, the last dream I had about Charlotte was where I was a Dr. looking through several charts and I realized one was hers. I never actually saw her but she was there somewhere.

A common fear that grieving parents have is that they will forget how their child smelled or what they looked like. I have all that but my biggest fear is not remembering her voice and laugh. For a while now, I could feel that slipping away from me and it was adding to the stress and down side of what has become a pretty violent roller coasted ride. Fortunately, not long ago, and for no reason that I can comprehend, it all came flooding back to me. Her laugh, her crying, that sweet little voice telling me about a book or movie…clear as a bell in my head. We have a good amount of recordings of her so her voice will always be around but I like remembering her actually saying these things.

I’ll be heading down to Ashland Coffee and Tea a little later to have what I had hoped would always be our traditional birthday chocolate shake. Susan Greenbaum is performing tonight. I hope you do something like that today to help you remember my amazing little baby girl. Rachel posted 6 things you can do if you need inspiration. I especially like the “Read A Book” idea.

Another wonderful event today is the celebration of my brother and sister-in-law, Vance and Lynne’s zillionth wedding anniversary (it’s actually on the 4^th). They are having a big blowout in Denver and we wish them the absolute best. I guess there will be about 100 people there including their two totally awesome kids, Joefish and C-Weed! Congrats Bro!

By the way, did we mention that my brother-in law, Mark, is going to have a kidney transplant in August and Vance is his donor?!? I have such an awesome family!

We have become day sponsors on Public Radio WCVE 88.9fm for today and have told them to plan on us continuing to do so on an annual basis. It comes with several announcements throughout the day so if you listen, either on-air or via the internet, you might hear it. I just did.

The bus is heavy on us today but we know we are loved and supported. Thank you all.

Happy Birthday, Monkey Butt. We love you and miss you very much

Six Ways to Honor Charlotte

Hello friends! First of all, for those of us who follow this blog, we apologize for the relative lack of updates. We continue to update our Facebook page and if you have not yet subscribed to our monthly newsletter, I encourage you to sign up. It's probably the best way to stay "in the loop". 

Now that the business stuff is out of the way, let's talk about the calendar. Tomorrow, July 9th, would have been Charlotte's 6th birthday. Understandably, it's been a difficult few weeks as we have anticipated the arrival of this day. Roger is going to post some of his thoughts here tomorrow and I will be sharing more on my personal blog in the days to come. 

For now, I would like to say Thank You for the support that you continue to provide to Roger and myself. Many of you have asked how we plan to honor Charlotte's birthday and how you can help. To that end, I offer you Six Ways to Honor Charlotte.  (special thanks to Chaplain  Sallye at Noah's Children for the inspiration)

1. Read a book. Charlotte loved to read and look at books from an early age. While some children fall asleep with a bed full of stuffed animals, Charlotte would sleep in a bed full of books. 
2. Wear pink or purple. Or both. Capture your inner princess, even if it's only for a day. 
3. Drink a glass of chocolate milk. Charlotte liked to say "Chocolate makes everything better."  We agree. 
4. Watch one of Charlotte's favorite movies. The movies that never left the queue included Finding Nemo, Mary Poppins, The Little Mermaid, and Frosty The Snowman. I can't think of a better thing to do in the heat of summer than think cool thoughts with Frosty.
5. Make a meal for a family in need. When Charlotte was sick, we were blessed with many friends and neighbors who cared for us by supplying an extra meal (or two). It's a special gesture that means so much to a family in crisis.
6. Help us honor Charlotte's memory with a donation to CJSTUF. Every little bit helps. If each of our 2800 (or so) Facebook fans donated only $6 in honor of CJ's birthday, we would be able to provide 33 $500 financial assistance grants to families in need. 

 
Thank you, Charlotte, for blessing us with your time here on Earth. 
We miss you. Every day. 

Radiance from Julia Dollison on Vimeo.

Two Thumbs Up

First, a heartfelt thanks to our friends who supported us in honoring the anniversary of Charlotte's death.  Our day of remembrance was full of friends and comfort.  We had about a dozen (or so) who stopped by to help us release some balloons (and attached messages) to the sky.  Noah's Children, an organization that continues to support us in so many ways, brought a chocolate cake.  Hot chocolate was enjoyed by all.   

And it snowed.

Some of you may remember that it snowed the night that Charlotte died as well.  The snow on Friday was reminiscent of the light dusting we had received the previous year on the same day.  It seemed a poetic ending to a bittersweet day. 

The events that followed in the next 24 hours in Tucson have continued to rock our world this week.  Our thoughts have been with the families of those who were injured or killed during the tragic shooting.  Most especially, we have thought a great deal about Rep. Gabrielle Giffords and her family.  I have found myself leaking quite a bit this week.  Maybe even more so than last week.   It just hits very close to home. 

It is hard to believe that almost two years ago, we faced our own encounter with neurosurgery.  The brain is a delicate, complex, and amazing organ.  I have thought many times this week about Charlotte's first surgery on 1/22/09.  The doctors explained all of the risks as we learned about the dangers of inflammation and infection that followed any type of brain surgery.  We were warned that while the neurosurgeon would do his very best to repair that which needed fixing while preserving that which needed to remain, it was a complicated process and there were a lot of unknowns.  After all, it is brain surgery.  We were warned to expect slow recovery, paralysis, permanent weaknes, blood loss, and, of course, the risk of death. 

When Charlotte emerged from her surgery, one of the first things she did was give Dr. Tye the thumbs-up.  After everything we had been told, we knew this was a good sign. This image became an enduring symbol of Charlotte's strength and courage.  It led us to the inspiration that became CJ's Thumbs Up Foundation. 

Needless to say, it warmed our hearts and gave us hope when we heard the promising news that came over the airwaves Monday that Rep. Giffords had also given her thumbs-up. We know that she has a long road ahead of her in terms of recovery.  We also know the incredible strength that comes from surviving something of this magnitude. 

Every day, there are families who fight these battles.  Whether they face chronic illness, terminal disease, or a tragic accident, we know that the road for some is a long journey and an incredible battle.  As Roger likes to say, go hug your babies a little tighter tonight. Never forget that Every Day is a Bonus. 

Today We Remember

Today we honor the memory of an amazing little girl.  She loved books, chocolate milk, penguins, and Frosty the Snowman.  Her favorite colors were pink and purple.  She touched many lives with her amazing spirit.  

Her legacy lives on through our foundation.   

If you were privileged to know Charlotte, we encourage you to remember her in your own way on January 7th.  Wear pink or purple (or both).  Share a "Charlotte story" with a friend.  Release a balloon, sing Frosty the Snowman, or drink some hot chocolate in her honor. 

For those who are interested, her Memorial Service is still available for view on our website. 

Here we share a beautiful song written and performed by our friends Kerry Marsh and Julia Dollison that was inspired by Charlotte. 

She is gone but she will never be forgotten. 

Charlotte Jennie Reynolds

7/9/2005-1/7/2010

Radiance from Julia Dollison on Vimeo.

Rest and Remembrance

Roger and I have had some opportunity for rest and relaxation over the last few days.  For those of you who don't know, we retreated to the VA foothills (Charlottesville area) for some time at a B&B.  It was nice to have not much of an agenda and to truly rest and regroup.  We got to visit a few wineries in the area and re-stocked for the year.  I must say that I love living in Virginia!

As many of you know, the anniversary of Charlotte's death is January 7th.  We have decided that we would like to mark the day with an informal moment of remembrance.  This will not be anything fancy or super-structured.  Sunset is at 5:07 PM and given that Roger and I both need to work earlier in the day, we will be holding "the moment" at 4:30 PM in front of the Butterfly Bush (at our house).  The plan is to release a few pink and purple balloons, sing a song or two, and maybe share some memories. 

Anyone who would like to attend is welcome.  We have an official invitation on our Facebook site.  Maybe we'll have some hot chocolate afterwards.  Contact us if you have any questions. 

If you do not live close by or cannot attend and want to hold your own Moment of Remembrance, we encourage you to do whatever you feel is right.  If you release a balloon, please use natural twine if possible (it's more eco-friendly). 

Mood Swings and The Double Marathon Challenge

Roger here,

Our trip to Colorado was really wonderful and I can't tell you how great it was to see my beautiful niece, Cerisa, walking down the aisle all grownup and stuff. She's a married woman now. Congrats C-Weed! It was an honor to sing at your wedding.

There were some very bittersweet parts, though for obvious reasons. CJ should have been there.

Coming back to Virginia was actually kind of tough on me for some reason and I'm still not completely over it. I've had quite a few "moments" the past few days and it's been harder than usual to think about Charlotte and what she had to go through. Tuesday was the worst day I've had in a long while. It all started when I was looking for a template of the CJSTUF letterhead and came across the letter I wrote to Disney. It was all downhill from there. I was loosing it at the drop of a hat and really feeling a distinct lack of self control. I had to sit in my car in front of Romp n' Roll for a few minutes and let it all out of my system before going in (probably feeling a little sorry for myself, I must confess).

The strange thing is, the moment I walked into Romp n' Roll, I started feeling better. Rachel was teaching my Babies! class because I had to come in late and it was so nice to see everyone laughing and playing. All the positive energy really bolstered me.

Another thing that doesn't help is that it popped into my head how we used to gauge Charlotte's pain level. The scale of 1-10 and the happy-to-sad face graph really didn't work for her but she would respond pretty accurately when we asked her if her pain level was "a little" (thumb and forefinger apart), "a lot" (hands spread several inches apart), or "alotalot" (hands spread wide apart). I so hate the fact that we had to use that system. Any system at all for that matter.

I've had a few more ups and downs since then but nothing like Tuesday. I'm sure it's just my every six month meltdown that comes about once a month or so now. I'm sure getting back into running will help that.

Hey I think I smell a segue!

Some of you may have heard about my "Double Marathon Challenge" (or "Double Marathon Madness" as Rachel calls it) where I will be running the Chicago Marathon in October and then the Richmond Marathon in November all to raise funds for CJSTUF. Well, training begins on Saturday! How would YOU like to be involved?

We'll need TEAM CJ members for spirit groups along the routes of both marathons and if anyone else wants to run in any of the races (there's also the McDonalds 1/2 Marathon, HCAVA 8K, and a Kids Fun Run in Richmond), let us know. Anyone raising $1,000 or more will get registration fees reimbursed!

I'm tweeking the pledge form to include a few extra choices. (More on that later but think "VT vs UM!")

It's a three day a week program that worked very well for me a couple of Richmond Marathons ago. Anyone is invited to come running with me. I will be running every Tuesday, Thursday, and Saturday morning bright and early Starting at 7am. Short runs to start off adding mileage as time goes by.

If anyone isn't part of an official training team, feel free to come out and mosey a while with me. I might be going slow but at least I'll be going.

I would love for some Richmonders to come with us up to Chicago and/or Chicagoans to come down to Richmond for the respective races. It'll be a heck of a party in both cities!

Did I mention my goal is $10,000? I really have no fear that we won't reach it.

Here's a great idea that I'm shamelessly stealing: PLEDGEWARS! I think most of you know that Rachel and I are both graduates of the University of Miami and when I'm not bleeding orange and blue for the Denver Broncos or green and yellow for the Packers, I'm mixing them and bleeding orange and green for the "U." For some strange reason, I have run into a certain amount of resistance from people in this part of the country; especially from those turkeys in Blacksburg. Well, to be fair, I want to give all you Virginia Tech fans the chance to show me who's boss, I'm throwing down the gauntlet. If VT fans raise more money than UM fans then during the Richmond Marathon, I will wear either a turkey outfit or neck-to-toe, including socks and underwear, Virginia Tech garb (I shudder at the thought!). The hat will be a pink or purple Charlotte hat no matter which side wins.

C'mon Canes! You must save me from this fate. We will be keeping a running tally going and we'll have to see what colors I wear on November 13th! Stay tuned.

Here's a GREAT memory we have of Charlotte: When we would say, "We've got some Canes over here," we taught Charlotte to say "Whoosh! Whoosh!" If that's not inspiration for you, I don't know what is.

Last but not least, Coco's Chocolate Dream Chocolatiers, the company letting us use "Chocolate Makes Everything Better," has begun making butterfly chocolates! I don't think I ever told her about the butterfly connection. Please go to her website and thank them or just say hi from a CJ fan. If anyone wants to do a "Chocolate Stand" as a FUN-raiser, let me know and we'll get it set up.

Thanks for letting me rant. I'll keep searching.

What I MEANT To Say Was...

Here is the text of what I was trying to say at the service today. I did a little on-the-fly editing so it's not exact but most of it is there and some stuff I left out.

I'll let Rachel post her own. Thank you all for coming and being a part of our CJ Celebration.

There Was Just Something About Her

Can’t say it much differently than that. Charlotte Jennie Reynolds was an amazing presence, and continues to be even now. She touched so many people from all over the world whether you knew her personally and got to spend time with her or just met her once or even those who merely saw her picture and heard about her only after she got sick.

We’re not talking a Nobel laureate, world leader, or some guy who did something to get into a history book. We’re talking a 4_ year old kid. One who was no more precious to her parents than these kids down front are to their parents (Maybe our experience has helped them to be more so). There was just something about her.

We all wanted to pour ourselves into her one way or another and one that seemed very popular was her name. Or “names” shall I say.

Charlotte was named after the spider in the classic book, Charlotte’s Web by E.B. White. It’s one of Rachel’s favorite books and one of the first movies I ever remember seeing as a child. Jennie came from the grandmothers. My grandma’s name is Jenny, Rachel’s great-grandma’s name was Jennie and it is her middle name as well. I remember being so proud to tell my Gramses (My nickname for Grandma Jenny) Charlotte’s name.

Even before she was born, she had names.

Once we discovered we were pregnant, we decided we didn’t want to learn the sex so most of what we called “it” was gender neutral or at least both masculine and feminine were given equal time.

I’m sure Rachel will correct me if I’m wrong (and of course I’m wrong, I’m the husband), but I think our first name for her was “Peanut” for multiple reasons. Ya know when you open the peanut shell and sometimes you get three instead of two? That third peanut is an unexpected bonus and we liked using that as kind of an inside joke when something good would happen, like finding a five dollar bill, like finding out we’re gonna’ have a baby. “That’s a third peanut!” It also described kind of what she looked like in the first ultrasound. Others have used it as a name for her independent of our journey.

Next was the “Little Jumping Bean” because as this thing grew inside Rachel’s belly, it became pretty active even before I could feel anything from the outside. As time went by, she would sometimes react pretty strongly to various types of music. (More about that later)

We wanted to reveal the baby news via our annual Christmas letter so we were going to have to keep it quiet for a little bit. Not something at which I excel. I wanted to at least let Grandma Jenny know so I called her up one night to tell her. Well Jaybird (which is another one of her nicknames) was in bed recovering from a recent stroke and I guess I should have waited when there weren’t so many people hanging around her bedside. I told her I had something to tell her and that she couldn’t tell anyone else yet. She said “OK” but when I let her know, she let out such a whoop and a holler that just about spilled the bean right there. Everyone present guessed what I had told Gramses but we still didn’t want to ruin the surprise. So “Zazou” was born.

I went out to Farmington, NM for an early Christmas that year and started weaving a deception for which I’m still proud! I slowly began leaking the news that I had auditioned for The Lion King – The Musical and had won the part of Zazou in the European touring company and we would be moving there for three years starting in the spring. I don’t even know if there IS a European touring company! I have just enough credibility with the few connections I have in the music and theater world that with repetition, I think I got most of the family off the baby track.
Then of course I went and confirmed everyone’s original suspicions the night before I left. After that, CJ was often referred to as ”Zazou.”

Still not knowing what sex Charlotte was, we came up with “The Creature”. That was actually a term of endearment we had for a monstrous tomato plant we had back in Boone, NC when we lived there but that’s another story. What’s important is that the name moved with us and stuck to CJ in utero.

Charlotte LOVED music before she was born. Surprising? J We played Miles Davis’s Kind Of Blue for her (among other things) and often went to concerts where she would boogie in Rachel’s belly like she was dancing the Can-Can. For example: Once at a choral concert at Randolph-Macon College, Zazou was quiet throughout the Chamber Singers and Concert Choir sections of the performance but once the Jazz Vocal Ensemble started up, she started jumping around in there making mommy’s life very interesting! Not sure if she liked the music or not.

So we started calling her the “Can-Can Dancing Creature” which somehow morphed into “Zazou, the Amazing Can-Can Dancing Creature.”


“Mater” was a gift from our friend, Dr. Anna Madland. Charlotte was due around July 25th but due to complications, the docs at St. Marys induced Rachel with Pitocin on Friday, July 8th. I was at WHAN the radio station getting ready for our live broadcast at the Tomato Festival the next day, when Rachel called me and said, “Guess what? We’re having a baby! Today!!!” So I never did that broadcast and Charlotte was born the next day around 1:30pm. Right in the middle of the "Mater Festival!” So that’s where that came from. If you would ask her what ‘Mater was afraid of, she would shout out, “THE GHOSTLIGHT!!!” in her best ‘Mater voice.

And speaking of WHAN, I used to do an afternoon show every weekday and I would often take Charlotte with me. Most of the time, she was very quiet and well behaved. Then again, sometimes, she would just be the wonderful wild and crazy girl that she was and I couldn’t help but put her on the air. Sometimes, she got on accidentally like the time I forgot to turn off the microphone and she went over the airwaves right along with the latest version of Whisky For Breakfast. A gentleman named Charlie I Cry Taylor would come into the station every once in a while to visit and promote one of the many events with which he was involved and, fell in love with CJ. It was he who came up with “CJ The DJ.” Definitely one of my favorites.

Rachel sometimes called her “Doodle Bug”. No real reason that I can tell except that it’s really cute. Just like CJ!

Her preschool friends had a few nicknames for her like, “Char-char” or just “Char” for short and “Custard” which is Strawberry Shortcake’s cat!

She was “Princess Charlotte” and “The Drama Queen” to everyone at Romp n’ Roll

“My Baby Girl” had various permutations but it’s probably the one I used the most. “I love my Baby Girl” or “Yes, my sweet Baby Girl?”

Then there’s “Monkey Butt” which, I must admit, came by much less organically. I think it was the host of Survivor (or was it American Idol? Not sure) who was on The Ellen DeGeneres Show one day and he mentioned that he called his daughter “Chicken Butt.” I thought, “That’s cool! If I ever have a kid, I want to call him/her that!” Unfortunately, Chicken Butt never really seemed right once Charlotte came around and it evolved into “Monkey Butt” somehow. No idea. But “Monkey Butt” it was and she would tell you proudly that that was what I called her. And now I understand the Ululating Mummies have a song called “Monkey Butt.” How exciting!

The last two are known to most of you and probably how she will be remembered forever: “The Caterpillar” and “The Butterfly” The story was simple and thought up while negotiating a rough spot during CJ’s Make A Wish trip to Disney World. We had stopped at a playground in the Magic Kingdom where dozens of kids were running around, playing, climbing, etc... I know Charlotte wanted to go play but she knew she couldn’t do most of what all the other kids were doing and I could feel a very deep sense of frustration coming from her. I felt helpless and kind of just pulled the infamous “Butterfly Analogy” out of my shoe on the spot. I made sure she knew what happened with caterpillars and butterflies and then told her that she was like a caterpillar and that soon she would be changing into a beautiful butterfly but first a cocoon had to close around her. It was already starting to close around her and one day she would go to sleep and when she woke up, she would be a beautiful butterfly. I told her most of us won’t get to be a butterfly for a very long time but she gets to do it before almost everyone.

That must have done the trick because she was fine with just about everything for the rest of the trip. Whatever muse touched me on the shoulder and put that analogy into my head deserves a beermosa. (HA!)

We talked many times after that day about how she was changing. She even occasionally substituted her ongoing Dora, Diego, etc… video plot-point recaps with the announcement that she was a caterpillar and would soon change into a beautiful butterfly. Always preceded by, “Daddy?” Then me: “Charlotte…”

While she could still answer me, I would ask her, “Are you my caterpillar?” and she would nod.

“Are you excited about becoming a beautiful butterfly?”

Nod

“It’s hard changing into a butterfly isn’t it?”

Nod

“I’ll bet you’re going to be the most beautiful butterfly that ever was.”

Nod

“We probably won’t be able to see you, but will you come visit us when you’re a beautiful butterfly?”

Nod

“Want a boot to the head?”

Shake head

That’s about the gist of it.

There are probably many others I have left out or never knew. I’m sure I’ll be hearing of other people’s special, secret CJ nicknames for some time to come.

Gives me something else to look forward to.