Friday, December 30, 2011

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

Sunday, December 18, 2011

It's been a good day


I don't think I spend enough time talking about the good moments we have. Lord knows I copiously inflict my bad ones on everyone when they come along.

Here are a few good things:

Today has been pretty good so far. The dark side has been trying to crowd out my happy memories (as it always does) but it has been kept at bay pretty emphatically. Lots of good things going on in our lives.

Rachel's doing more and more writing (the book is getting closer every day thanks to her work and some very capable editors), I'm even doing some freelance stuff for the local paper, we keep getting VERY generous donations for the year-end challenge match (which you all blew away, thank you very much!), and we feel very loved and supported from all over Tarnation.

A baby was baptized this morning and she was so adorable! I was reminded of when we baptized Charlotte up at Trinity in Fredericksburg. I especially remembered that purple silk Chinese outfit she wore. It was very slippery and I was constantly afraid that I was going to drop her. All of it filled me with a warm feeling. No leaking this time.

Another thing that has made me happy was the result of the Christmas Jar campaign at Westover Hills United Methodist Church. Last year, Donna introduced the concept to the congregation and they ran with it. People saved their change all year in Mason jars and then turned them in last week. There was an anonymous donor who agreed to donate $1,000 if 20 or more jars were collected. I believe at last count, there were 22. Those jars alone brought in around $1,000 which was distributed to the YWCA, a local elementary school, and some local at-risk youth among others programs.

I might have to steal that idea for CJ's Birthday in July. What do you think?

The Foundation Is looking very strong for next year and our amazing Board has had a huge amount of impact on that. The original founding members and the new ones coming on board have us feeling euphorically optimistic. We come across so many horror stories about "bad boards" that we are in awe of how awesome ours is.

As we all continue moving through the season we hope you can be comforted and find some peace and hope via the work you've enabled us/CJSTUF.org to do. Rachel and I certainly take refuge in it and will selfishly do so for the foreseeable future.

Don't be strangers and don't let the the energy wane,

Rog

Wednesday, December 14, 2011

Time for the annual posting of the "Disney Letter."

Time for the annual posting of the "Disney Letter."  'Tis the season and all that...


February 12, 2010
Disney World Corp.
Magic Kingdom Guest Services
311 World Drive
Lake Buena Vista, FL 32830

Dear All At Disney World,

I’m sure you receive letters like this frequently enough that you don’t really need me to write you another one but it is very important to us that you know about our trip and the events leading up to it.

On January 20, 2009, while Barack Obama was taking the oath of office, I was in a hospital emergency room with my then 3-year old daughter Charlotte Jennie learning that she had a very large tumor in her brain. We were admitted to MCV in Richmond, VA that day, she had a full MRI the next morning, and had her first of four brain surgeries on Thursday, Jan. 22.

We have chronicled our experience on www.CJSTUF.org so I won’t go into too much excruciating detail about that.

In the spring, we were approved for a Make-A-Wish trip. When asked what she would do if she could do anything in the world, she answered, “Go where the princesses are.” (Meaning Disney World, of course). We were planning to go possibly after the first of the year, after the majority of her current treatments were finished but in November we learned the worst. After all the surgeries, chemo, and radiation, the tumor was still growing. And it had moved to the brainstem. We were out of options and it was the opinion of our medical team that we needed to think in terms of weeks and not months.

The main goal in all of our lives was refocused to getting Charlotte to Disney World as soon as possible while she could still enjoy it. We contacted our local MAW chapter and they got on it, securing us a week at Give Kids The World Village Starting Dec. 1.

We arrived safe and sound and headed off to the Magic Kingdom the next day (Wednesday, Dec. 2). We were told the Disney staff would offer extra help to MAW families. We had no idea how deep Disney’s commitment to MAW would be. We were ushered to the front of lines all day and given preferential treatment everywhere we went. Characters went out of their way to visit with us and cast members seemed to seek us out to ask if we needed anything. We felt very well cared for.

Topping the list of amazing events for us were the character visits with Mickey and Minnie and then with the Faries Silvermist, Tinkerbell, and Rosetta. We arrived at the area to see Mickey and Minnie in the morning and toured both of their houses first. When we walked into the “barn,” it was almost an accident. This was our first experience with bypassing the long lines and we couldn’t believe it when we were actually walking into the room with Mickey and Minnie after waiting less than 10 minutes.

The visit was wonderful and both Mickey and Minnie conveyed to us, even without words, the care and concern they felt for us with extra long hugs for Mommy and Daddy from Minnie and multiple extra firm handshakes from Mickey as if he was trying to let us know through the glove how much he sympathized.

Charlotte was doted upon and given more time to be with them than I ever thought would be possible. We walked out on a cloud.

Not thinking we could top that for the entire trip (and it was the FIRST thing we did on the FIRST day there), we headed up to see what there was further in the park. We eventually found ourselves at the Fairies and Princesses venue and since we were having lunch at Cinderella’s Castle (generously donated by a friend), we decided to see the Fairies. The sign for wait times was set at 45-min but we got to go in the “other” way, which had us waiting about ten.

The following events are etched into our brains forever and we will keep them close for as long as we live.

As we neared the room where the fairies were waiting, we got Charlotte out of her chair and had her walk in. I held her hand as she was rather unsteady. She was greeted by Silvermist, who took her other hand and began to lead her over to a large flower to discuss the color similarities between the petals and CJ’s pink tutu. As Silvermist took her hand, Charlotte immediately let go of mine and totally forgot about us. It was as if she and Silvermist were best friends from long ago. It was truly magical! We had a video camera but seeing CJ so incredibly happy after all she had to endure made us completely forget to tape anything! It’s ok. We got lots of photos. We just watched and cried as Silvermist called Tinkerbell and Rosetta over to discuss matters of great import like what talent Charlotte might have. I believe they decided she had multiple talents.



Tinkerbell was Charlotte’s absolute favorite and they got to spend a lot of time together. CJ told her about all the other fairies and what they all did. All three fairies were so amazingly attentive and gentle with her. All the while we never felt hurried or pushed into leaving. Charlotte got to spend as much time as she wanted with them and when we finally left, we knew we had experienced something very special.

It wasn’t even noon yet. Did I mention this was the first day?

The next major thing was lunch at Cinderella’s Castle after a quick visit with Ariel (CJ’s absolute favorite princess!) in her grotto. I think I was looking forward to the lunch as much as anyone. When we walked in, Cinderella was greeting people in the front room and, of course, we were ushered right up to her. Charlotte had a wonderful visit with her and soon after, we were called up for our table.

This was another wonderful experience. The princesses all came in and made the rounds and CJ was in heaven! One humorous part was that when Belle (another of Charlotte’s favorites) came around, it was the exact moment the food arrived. CJ was very hungry and that hotdog was calling to her but at the same time, here was Belle! I’m sorry to say Belle didn’t get nearly the reception she would have normally received.

By the way, the food was divine!

CJ crashed after that and we headed back to GKTW for the rest of the day.

Day 2: (Thursday, Dec 3) We basically retraced our steps and did the exact same thing in the morning. Some cousins who came up from south Florida joined us. We toured Mickey and Minnie’s houses and got to see them again. This time we were in a different room but with the same results. They were wonderful again. Mickey pulled out a new trick and made his nose wiggle which CJ found very amusing. Again with the long visit and the extra care and everything. Oy! It was great.

The wait for the fairies was over an hour this time. We only waited 10 minutes again. Mommy was also ready with the video camera and it was rolling when Charlotte walked in. We were greeted by the same Rosetta who was there the day before. The first word out of Rosetta’s mouth was, “Charlotte!” The fact that she remembered CJ and the things they had talked about took our breath away. Again, it was like old friends getting together.

Rosetta was very cool and made sure the other fairies (the same Tinkerbell but a different Silvermist, we think) knew that CJ had been there before. “Hey look, it’s Charlotte who was here yesterday, REMEMBER?!? (hint, hint)”

It was another magical visit and this time Rosetta got the lion’s share of Charlotte’s attention. They were nuzzling forehead to forehead and talking quietly about the things the fairies and princesses do. I felt such a strong sense of affection between CJ and all the fairies and I can only think that they show the same to all the guests who come through.

Later in the trip, we went to Animal Kingdom and got to see Finding Nemo, The Musical. Charlotte was very tired and had been just lounging in her chair for most of the morning but as soon as the performance began, she was attentive, alert and watched the whole thing sitting up on my lap. We all particularly loved the bit with the penguins! It was very funny and penguins were CJ’s favorite birds.

One last item of note was when we went to Rafiki’s after the safari. Rafiki was greeting kids when we rolled in and his assistant told us he was just getting ready to go on break, which was fine since there weren’t that many people around and we had just arrived. We figured we’d talk to him when he came back out. Well, he caught sight of us and made a bee-line for Charlotte. I don’t think he got much of a break that time.

It is a testament to the talent and training of all the cast members that we had such an amazing trip. I sincerely hope they know that their job means much more to people like us than they could ever possibly imagine. It is evident even in the elderly street sweeper I met outside the bathrooms who showed me his very efficient technique for scooping up little bits of things. It was kind of cool and it stuck with me enough for me to mention here.

Charlotte Jennie Reynolds passed on Thursday, January 7, 2010 at home surrounded by stories, music, and love. It was a beautiful passing and Disney was a part of it.

I can’t imagine that this letter might make it’s way to the specific cast members with whom we came in contact but if so, please let them know that they have touched our lives and become permanent pieces or our memories forever. I’m sure they do it everyday and yet might not realize their impact.

Sincerely,
Roger and Rachel Reynolds (Charlotte Jennie’s daddy and mommy)
www.CJSTUF.org

Tuesday, December 13, 2011

The Challenge is On!

Earlier this month, we told you that we have thirteen families on the waiting list for Financial Assistance Grants. Today, we received an amazing challenge from a family that wishes to remain anonymous.


If we can raise $2000 before December 31st, the family will match the donation with an additional $2000.  That will allow us to give eight families on our waiting list a financial assistance grant before January!


You can find out more about the great things we have done this year by checking out our Annual Report for 2011.  With your help, we can continue our progress into 2012. 


Who's up for the challenge? No donation is too small (or too big!)


Please donate using the special challenge badge on our website

Monday, December 5, 2011

"One G*# D*&#ed Chocolate Chip Cookie"

Or better yet, "That Damned Kiss." - A Mighty Wind

Or slightly more diffused, "You know you've ruined it for me..." - Out Of Africa

We all have had events in our lives where one little detail eventually became more than just a detail in the overall fabric of our experience.  It morphed into an major element of the plot, influencing further development and screwing up your plan for where you thought you were going.  This butterfly did that to me:


A few days ago, Rachel came in the house and said, "Have you seen the new butterfly?"

We both went out and she showed me the purple butterfly that someone had covertly attached to Homer the Pine Tree overhanging CJ's Butterfly Bush.  We occasionally find things on or around CJ left by people we didn't see and they are always appreciated but I think I must have been in a certain frame of mind to receive this certain butterfly because it changed the course of my psyche.

Rachel and I had just come back from our vacation (it was fabulous, in case you hadn't heard) and I wasn't ready to get back into reality.  On top of that, I had been having lots of little "moments" that were weighing me down.  Moments brought on by the weirdest things.  Like hearing a song or being in a place where Charlotte had been. The bus was certainly back, parked squarely on my chest, and my "woe-is-me" song writing machine was picking up speed.  And a part of me was ready to stay on that path for a while. There's value (at least to me) in feeling the pain.  At least when I feel the pain, I know I'm remembering her. (I hate "at leasts")

And then I saw that damned butterfly.  It wasn't like the weight was lifted or anything too dramatic like that but it reminded me that people are thinking of us, which is comforting, and that I need to get my head on straight.  It even altered the direction of one of the songs I had been working on for a long time.

The problem is that it was fixing to be a pretty good sad song before then.  Now it's all confused and I may have to break it up into two different songs that sound a lot alike.

Be that as it may, the song writing machine (along with my attitude) has come out of its nose-dive and has leveled off for now.  The moments are still there, nothing has changed in that respect, but I'm at least able to deal with them for the time being.

Thanks to whoever placed that damned butterfly.

In other news, the Foundation is ending the year with both good and bad news.  The good news is that we were able to help 30 families, one way or another, to the tune of $14,000. That takes the total amount of aid since incorporation to around $27,000 in two years.  (We thought we were closer to $30K for a while but it still ain't too shabby)

The bad news is that we still have 13 families on the waiting list.  That's $6,500 if you want an amount.  We're really hoping that some last minute fundraising opportunities will help narrow that gap.

One not-so-last-minute FUN-raiser is the Ukrop's Monument Avenue 10K on March 31, 2012.  TEAM CJ will be in effect and there are different ways you can get involved:


1 - Join TEAM CJ, collect pledges, and run in the 10k.  If you commit to raising $500 or more, CJSTUF will give you a code to register for free!

2 - Go to MY fund raising page and make a pledge.  My goal for all of TEAM CJ is $10,000 but if I could do that personally, wouldn't that be totally cool!?!  The Mother Runners are going to be involved somehow. We haven't solidified details but there may be a pink running skirt involved! :-)

3 - Be a cheer-er for TEAM CJ along the route.  We need spirit, we know we do! We need spirit, how about YOU!?!

By the way, there are new racing shirts (real running shirts!) for all Team CJ participants!

GO TEAM CJ!!!

January will also be "Remember CJ Month" when participating stores will be donating up to 5% of sales for the month to CJSTUF.  Our first participant will be the Bed Corner in Stonewall Square in Mechanicsville.  Come buy a bed or mattress in January and help CJSTUF!

If you own a business or know of one that would be interested in participating, have them contact us asap.

I think that's all for now.  I'm sure Rachel will be back on with something I've forgotten.

Bye for now,
Roger

p.s. If you want me to explain the chocolate chip cookie reference, please let me know.