Sunday, January 31, 2010
This has actually been a pretty good birthday. The snow yesterday certainly didn't hurt. It's also great that Rebecca (My "Punkin") Connelly came into town for a visit. She's one of Rachel's very bestest friends from U of Miami (mine too actually) and we haven't seen her in quite a while. She flies out today.
We were kind of snowed in and we've had to cancel/reschedule Birthday Bashes all weekend but what can you do? The 6" or so they predicted turned into 14"+! I got down to the store yesterday before it got too bad but by the time I got home, the snow was at the bumper in our unplowed cul de sac. I made it all the way to the edge of our yard and then got stuck. While I was digging a place to park the car against the curb, I left the lights on and the battery dies! Dopey me.
Nothing a quick jump couldn't fix. AAA was working hard all night I'm sure! Also, hats off to all the plowers who gave up their weekend to clear our roads and parking lots.
We had fun digging out today and it was great to see the neighborhood helping each other out. Dr. Dan came up the road with chocolate chip cookies for my B-day. Three of us dug out Granny Dot's driveway. The guy across the street brought his 4-wheel drive truck over and gave us a few tire tracks in the driveway as a starting point for getting Rachel's car out. Gotta love a small town. (Hopefully it wasn't restricted to just small towns.)
Rachel and I wrestled a bit in the snow. She lost but in a helpful way in that when I threw her into the snow, it was in a place where we needed to pack it down. She also made a stellar snow angel for CJ.
We also got Kolbey's car out. It does surprisingly good in the snow. I even tried my best to get it stuck but it wouldn't let me.
A while back, I posted the lyrics to a song transcribed/arranged by Kerry Marsh and Julia Dollison. It's called "Radiance" and today I got a video/recording of the tune from them (and Julia's sister) for my birthday. Please get some tissues and think good thoughts about CJ: "Radiance"
Of course I thought about her all day. Mostly very good but I did have my moments. It's always worse at night. (Think I've said that before)
It was awful nice to get all the birthday wishes from everyone via Facebook, Email, phone, and even a few of those old fashioned things called birthday cards! I really appreciate it.
Finally, tonight Rachel and I went to see the movie "Up In The Air" starring her boyfriend, George Clooney. Excellent movie. Almost as quirky as "About Schmidt" but much funnier.
In the end I guess people want to know if I had a happy Birthday. The answer is "yes, mostly." This is my kind of weather and I felt very much in my element getting out there and puttering around in the snow. But it wasn't the same without Charlotte. I know it won't ever really be.
On the other hand, beyond the constant sadness running deep inside us, we're doing ok. Rachel and I cried on each other's shoulders when we watched the "Radiance" video. We had fun in the snow. We had fun at the movie.
We just keep going.
Thursday, January 28, 2010
The latest forecast seems to be on the lesser side in terms of accumulation and that's just fine by me. We have a full slate of birthday parties this weekend at Romp n' Roll and I'd rather not reschedule them!
Speaking of Romp n' Roll, Roger and I are back in the saddle and couldn't feel better about it. The past two weeks have been great. We have been energized by the kids and feel so supported by our families. Plus, spring registration is rolling so we are excited about that.
Roger's birthday is this weekend and we have a friend from our old college days (Becky!) coming to visit from Chicago so we are excited. Aside from our normal work obligations, we are planning to take in a concert by the Atkinsons at Ashland Coffee and Tea and probably just do some hangin'.
Everyone keeps asking us how we are. I surprise myself every time I say, "I'm ok." but I really am. I have those moments where I miss her (every day) and those moments when I think about her (at least once an hour) but I'm not in a puddle on the floor and I guess that counts for something. Staying busy definitely seems to help, my new exercise routine seems to help (hooray for the Wii!) and working on the FOUNDATION definitely helps but otherwise there is no way that I can truly explain how or why I feel the way I do. It just is...
I can't remember if we've posted this yet, but mark your calendars for the THUMBS UP BALL on Saturday, February 13th from 4-7 PM. This is a family dance for all ages at the Shady Grove Methodist Church in Mechanicsville and will be a great fundraiser for CJSTUF. The Moms Club of Mechanicsville is organizing it. There will be a silent auction, live music by Triad, and a visit from the Dance Fairy! Kids are encouraged to dress in their festive attire! Tickets are $10 and available at any Romp n' Roll location. There is an event link on our FACEBOOK fan page and more details will be posted on the CJSTUF events page soon (we're fixing some link stuff...). You can contact me or Roger if you have further questions. The event hall holds about 1000 people and we would love for this to be a SELL OUT!
Ok, I think I've babbled on enough and need to get back to work. Hope everyone has a good weekend.
Saturday, January 23, 2010
Aunt B mentioned CJ doing her princess wave as we walked by the 7th floor lounge at MCV. I had almost forgotten that. I was so freaked out inside that my head was feeling fuzzy (the way it does when I REALLY get upset). I remember feeling that I needed to keep it together as we walked down the hall to the elevators. I'd seen this scene before in countless movies and TV documentaries wondering which way the dramatic shoe was going to fall at the end. (Does my life completely revolve around mass media!?) The real terror is light years worse in person, believe me.
Down in the pre-op area was where Mommy sang Frosty to her just before they wheeled her into surgery.
I remember shaking inside. Not shivering like being cold but more like a constant vibrating; like there was a humming going on inside me. Weird, I know.
I also remember feeling so completely helpless.
So that's what Jan 22, 2009 was all about.
On to other things...It's great to commemorate, bad to dwell.
Here's my Facebook post from 4:00-something this morning:
"Yesterday was halfway decent, considering... Spiritually, musically, financially, geographically, gastronomically... I'll do a full blog post later today but I just got back form Shepherdstown, WV and I need sleep." Can't believe I could even type at that point.
Spiritually - I was ready to be very mopey, grumpy, and unhappy all day yesterday. Just didn't happen. I thought about Charlotte all day and had a "moment" on the road just south of Shepherdstown, WV but for the most part, I was moderately cool.
Musically - Uptown had a workshop/gig at Shepherd University yesterday which went VERY well. The workshop was supposed to be aimed at the vocal students. They don't have a jazz vocal group yet but seem very ready to jump in and try. Ginny and I were going to split the time with me giving some fundamental, before-you-form-the group homework and Ginny guiding the group singing portion. We were also asked to touch on the career aspect of music, being honest but not terrifying the students! :-)
Well, of course, I kind of got on a roll talking shop and hogged most of the time. We did the other stuff but it was more like 80% Rog and 20% everything else but the students were responding and we were learning stuff. Some were even TAKING NOTES!!! Uh-oh...
Funny side note: I also spread the Pomplamoose word. I was doing the shortest possible bit on improv and mentioned that the easiest way to start getting licks under the belt was to sing tunes they already know with just syllables. I started with quick examples like the ABC song, Happy Birthday, etc... Then I started "scatting" "All The Single Ladies" which really seemed to amuse them. Then I digressed, as I usually do, and told them about Pomplamoose's version. (Jack and Nataly, I'll expect a check (or maybe just a bar of soap) within the week.)
The evening concert went very well and we got a standing "O!" There was also good, moderately healthy food in the dressing room including a bag of Gala apples! Yum! (That's the "gastronomic" part)
Because of circumstances I'll go into later, I drove myself up to the gig. I ended up taking Highway 340 into Shephardtown which unexpectedly found me in Harpers Ferry. I was inspired and pulled up "Tom Burleigh's Dead" by Eddie From Ohio. I think I listened to it 4 times in a row. Perfect! Here: You should too! :-) OK So it's only a snippet - Go buy it for Pete's sake!
By the way...what a GORGEOUS area of our country!
To close out the musical portion of this epic, here is a message I got from Julia Dollison. Though you'd might like to see it.
"Thinking of you lots today...
Kerry and I just finished tracking a cappella vocals for his transcription of Keith Jarrett's live (improvised) solo piano recording of "Radiance 8" (commissioned by Long Beach Poly). I added lyrics to it this past fall, but now that we're finally laying it down, it occurs to me that they're really about CJ.
As much as I wanted to post this on your wall, I didn't want to take up that much space, but you're welcome to share it if you wish. We'll send you our recording as soon as we mix it down... :)
(Roger's note: Kerry and Julia are mutants! In a good, musical way, of course)
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."
Beautiful. I'll leave you with that for now. More later.
Friday, January 22, 2010
And what a difference a year makes.
This has definitely been a crazy week. More good than bad, I think. Getting back to work has been rejuvenating, energizing, and positive in so many ways. I have enjoyed it but, man, am I tired! I have had a lot to do and, fortunately, the to-do list is slowly being whittled down.
I miss Charlotte. I see her everywhere. Not in the creepy ghost-like sense but in everything I do. I go shopping and see clothes and toys that I will never buy her. I pack my lunch and realize that I don't need to pack hers. I plan my day and realize that I don't need to pick someone up from preschool or make sure we have a babysitter when Roger and I both need to be at the store. I realize how much time and energy goes into being a parent and what an empty space has been left by her departure.
I think of that song: "There's a hole in my heart that can only be filled by you..."
At the same time, I am realizing what a drain Charlotte's illness has been on us in this past year. Charlotte herself was not a drain. She was a JOY but the CANCER and everything that it involved SUCKED our time, our energy, our sanity, our money.....it sure SUCKED. Now that she is gone, the pain is still there but we are going about the process of reclaiming that time and energy (and sanity?).
Last night, we had another CJSTUF board meeting. It was wonderful! Our current board is filled with very talented, intelligent, and motivated individuals. I know that there are many more of you looking to participate in our organization and activities. Do not despair: there will be a place for you! Keep your eyes and ears peeled for news in the coming weeks.
Two final notes before I trot off to a FULL day at Romp n' Roll: Meriwether Gilmore writes the news for the Town of Ashland that appears in both the Herald Progress and on her blog. She wrote a wonderful tribute this week to Charlotte describing her memorial service. Thank you, Meriwether, for a beautiful article! I was moved!
Finally, the only downside to a huge network is that you have many people who want to make sure you are supported. That doesn't sound right as I type this but what I'm trying to say is: I know that many of you have called, emailed, and offered support in multiple ways this week. If I haven't responded, please don't be offended. I am feeling the love but haven't gotten around to returning your correspondence! I have more offers to drink beer/margaritas/wine than my liver will allow and more offers for trips and getaways than my schedule will currently allow BUT I am appreciative of all of them and I hope to be able to follow up on many of these offers in due time.
Stay warm and dry and think sunny thoughts. It's gonna be a dismal day in Central Virginia.
Wednesday, January 20, 2010
Today was the one year "anniversary" (although that sounds far more festive than I felt today) of finding out that Charlotte had a brain tumor.
If you don't know the story, I took CJ to the pediatrician because these headaches she'd been having hadn't been getting any better. Dr. Webber looked her over and then stepped out for a moment. He came back in with another doctor who looked in her left eye for a very long time.
"Yep, there's something there" are not the most encouraging words a parent can hear. Still, I wasn't panicked. Just concerned. They told me to take her to St. Mary's ER for a CAT scan.
When we left, before we went over to the hospital, I stopped off at the nearby convenience store to get her a bite to eat since she hadn't eaten much and I wasn't sure what to expect at the hospital. There was also a tiny little, worried dad voice in the back of my head telling me it may be a good idea to enjoy this time with her a little bit extra.
I got her a hotdog. The rest is history.
Back to today: I tried to engage in things that make me feel better (running, playing with the fireplace, etc...) It helped a little.
Always looking at myself to gauge my mental shape, I'm finding myself wanting to be alone more (knew I would) so be prepared for disappointment if you're looking for some quality time with Rog. Haven't really seen many of the symptoms the Abilify commercials say I should have to be depressed (except the chronic hallitosis) so I'm still not too worried.
Most of my recent quality time has been spent with the kids at Romp n' Roll. That has been my biggest success story of late. It's been great to be back and I think Rachel feels similarly. I just would like to start making some money at it someday.
The planning for Monument Ave. 10K continues. TEAM CJ continues to grow. I'm going to put a Jan 31 deadline for letting me know you want to run/raise pledges since the price of registration goes up Feb 1. We're at 50 runners/walkers so far so it should be a big purple and pink hoard. The "Spirit Group" is being organized as well. Come cheer us on.
Gotta go to bed to start the next year off right.
Sunday, January 17, 2010
Can I say it again? WOW!
Everything was fabulous and I know that it did not happen magically. There are many people to thank (most of whom are listed in the program). HUGE kudos to Kim Thies and Meredith Hayes for orchestrating the multiple volunteers who helped in all kinds of ways. Much thanks as well to the many talented musicians who made the music happen. Much thanks to Rev. Ed Tracy and Rev. Kent Rahm for their words, time, and talent. Much thanks to our families for being here with us (both here in VA and virtually online).
If you want to see some of the pictures from yesterday's event, you can check out Beth's photos.
There are also links to her Disney and Mary Poppins pics on the same site. Deb Harper was also taking pictures and I am sure we will post those soon.
I know that I saw and spoke to many people yesterday and there were even more who I probably did not get to see and thank and hug. Roger and I were separated for much of the reception so I hope that he got to talk to everyone to whom I didn't get to speak.
I was so happy to see so many children there. Our goal was to make this event as child-friendly as possible and I think we accomplished that.
We spent the rest of the afternoon/evening hanging out with the family. The food (and wine) were copious and there was much laughter and sharing and talking. Much of the family will disperse today and tomorrow and Roger and I are starting to gear up for a busy week ahead.
Just so everyone knows, the website is not going anywhere and neither is the blog. Our board will be meeting this coming week to plan our next steps for CJSTUF. We already have multiple fundraising events and efforts in the works so keep your eyes and ears peeled. There will be opportunities for everyone and we plan to use this forum to keep everyone in the "loop".
A few people have asked us about a DVD of the service. We will definitely have one available and I hope to have more information about that within the next week as well.
Roger posted the text of his speech at the memorial service so I thought I would post mine as well. I will close for now but you'll hear from me again soon, I promise!
Every child is special. Every child is a gift from God.
Charlotte Jennie was something else. Something beyond words.
Those of you who know Roger and me well know that there are few things that we prize in terms of material possessions; however, our books and our music are very dear to us. Our music collection rivals that of a small radio station and I can never, ever throw away a book. It is difficult to even give one away and I rarely walk out of a bookstore empty handed.
Needless to say, Charlotte’s life was full of books as well. I guess the reading vigil was just a natural extension of her spirit (and ours). Her name actually was drawn from a favorite childhood story, E.B. White’s Charlotte’s Web. The story of an eloquent spider that helped a pig discover his own talent, one word at a time.
It goes without saying that Charlotte was a verbal child. She devoured language. She consumed it. She was speaking single words before her first birthday and could speak in small sentences at 18 months. Her vocabulary reflected that of much older children and she always spoke with that clear, sweet, innocent voice that just made you stand up and take notice. She was always attracted to books and could sit and have people read to her for HOURS. I think Granny’s record in one day was 46 books.
I could spend hours telling you stories of her verbal abilities, funny sayings, and parrot imitations. Instead, I want to share some pieces of literature that always bring Charlotte to mind. In these, I see her spirit and in these I will always keep her memory.
Charlotte: The little spider with the big vocabulary and the big heart. She was a friend to all and while her life on this planet was short, her legacy lived on in those whose lives she touched.
Matilda: The Roald Dahl story of a precocious little girl whose love of books and learning was never appreciated fully by her family. She found a teacher who helped harness her talents to their full potential. Matilda discovered that she was powerful, indeed.
Olivia: The pig who is never afraid to speak her mind. She always marches to her own beat and has very patient parents who support her creative endeavors.
Ariel: A mermaid with an innate curiosity about the world beyond the sea. Her determination and spirit help her to get her one true wish: she finds legs on which to stand her ground.
Emily Elizabeth: Clifford the Big Red Dog’s human owner. Her love was what made Clifford grow to such a large size. Charlotte’s love brought people together from around the community, around the nation, and around the world. It is a size beyond measure.
The Very Hungry Caterpillar: In her final days, the steroids that helped continue her life caused Charlotte to eat (and eat) (and eat) like that caterpillar whose appetite would not be satiated. That caterpillar was just preparing for the next part of the journey. And then she slowly crawled into her cocoon to become a beautiful butterfly.
Finally, Frosty the Snowman. I do not know why Frosty became Charlotte’s favorite song. Somewhere along the line, though, she developed an attachment to the tune and it stuck like glue! At three and a half, she already knew most of the words by heart and by four, she could sing the entire song better than many adults. It was a constant source of comfort for her during those weeks and months in the hospital. We began our journey in the chills of winter and our journey took us through all four seasons back to winter’s snow. Even in the triple digit heat of a Houston summer, Frosty the Snowman was sung by employees at the Proton Therapy Center in Houston with great enthusiasm. Somewhere in the process, I realized what the words of the song were saying to me. They were Charlotte:
Making just a few adjustments to the lyrics, I can see her in the song completely:
CJ the wonder was a jolly happy soul.
With blond curly locks and a button nose and two (dark brown) eyes made out of coal
Just like Frosty, our Charlotte knew that her time would be short on this earth. She wanted to “run and have some fun” before she melted away. She didn’t waste time with naps or resting. She just wanted to go. To learn. To BE in the world and soak it up with her curiosity.
Unfortunately, one day in January, that traffic cop came out and hollered “STOP!”.
CJ the wonder had to hurry on her way but she waved goodbye saying, “Don’t you cry. I’ll be back again some day.”
My final source of inspiration actually came through friends of friends, as many of our recent connections have this past year. During the December snowstorm, we were trying to keep the reading vigil going as best we could. One mom wanted to come but the weather just would not allow. Since she couldn’t share stories in person, she emailed me to tell me that she was looking to Shel Silverstein (one of my favorite poets) for inspiration. While looking in the index of Where the Sidewalk Ends, she found a snowman poem on page 65. It goes like this…
Twas the first day of springtime
And the snowman stood alone
As the winter snows were melting
And the pine trees seemed to groan
“Ah you poor sad smiling snowman,
You’ll be melting by and by.”
Said the snowman, “What a pity,
For I’d like to see July.
Yes I’d like to see July, and please don’t ask me why.
But I’d like to, yes, I’d like to, oh I’d like to see July.”
Chirped a robin, just arriving
“Seasons come and seasons go,
And the greatest ice must crumble
When it’s a flower’s time to grow.
And as one thing is beginning
So another thing must die,
And there’s never been a snowman
Who has ever seen July.
No they never see July, no matter how they try.
No they never ever, never ever, never see July.”
But the snowman sniffled his carrot nose
And said, “At least I’ll try.”
And he bravely smiled his frosty smile
And blinked his coal black eye.
And there he stood and faced the sun
A blazin’ from the sky--
And I really cannot tell you
If he ever saw July.
Did he ever see July? You can guess as well as I
If he ever, if he never, if he ever saw July
Thank you all for your love and support and thank you Charlotte for letting me be your mama. I am blessed.
Saturday, January 16, 2010
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?”
“It’s hard changing into a butterfly isn’t it?”
“I’ll bet you’re going to be the most beautiful butterfly that ever was.”
“We probably won’t be able to see you, but will you come visit us when you’re a beautiful butterfly?”
“Want a boot to the 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.
Thursday, January 14, 2010
1. To Whom Should I make a donation in Charlotte's honor?
There are a number of worthy causes that have benefitted us this year. Besides CJSTUF, donations can be made to Make-A-Wish Foundation, ASK Clinic at MCV, or Noah's Children. Other worthy causes not mentioned in the obituary include ReeseStrong, Connor's Heroes, Ronald McDonald House, and Caring Bridge.
2. How can I make a donation to CJSTUF (or any of these other organizations)?
You can bring your donation to the memorial service on Saturday. There will be a lockbox at the service and reception with the logos of all the organizations that have benefitted us (as well as CJSTUF). Donations can be accepted there. All cash donations will go to CJSTUF unless otherwise specified.
A donation link will be set up on the website soon (we are working on this). This will allow for online donations via PayPal. Other donations to CJSTUF can be sent to our home address: 9 Slash Ct, Ashland, VA 23005. Checks should be made out to Charlotte or to CJSTUF.
3. Are donations to CJSTUF tax-deductible?
While we are an officially incorporated organization, we do not yet have 501(c)3 status. Donations are NOT currently tax deductible; however, our board is pursuing tax-exempt status and we expect to have this before the end of 2010. We will definitely make sure everyone knows when we have tax-exempt status.
4. I work for a company or volunteer for an organization that raises money and/or matches funds for other organizations. We would like to help CJSTUF. How do we go about this?
We would love to work with you and your company/organziation. Most companies or other organizations require that a benefitting organization be tax-exempt or have tax-exempt status in order to qualify. CJSTUF is not going anywhere and we would be happy to work with you once we reach tax-exempt status! Just keep your eyes and ears open.
Thank you, again, for the momentum and energy and giving spirit that has been put forth in Charlotte's name. We are humbled and appreciative!
Rachel and Roger
I gave blood yesterday simply because it was time and I promised the bloodmobile coordinator I would since I couldn't be there for the Give Back event at Romp n' Roll. Talk about clueless. I knew about the devastation in Haiti but didn't connect it to my blood donation. Now, I'm going to guess that VA Blood Services keeps its blood units in the state but the American Red Cross is a different matter and all the blood donation services are in serious need. I don't know how all that works but it can't hurt to roll up your sleeves and donate blood to whoever will take it. Do it in Charlotte's name if you like. If you go to the VA blood Services office at Insbrook, ask for the lady with the many names (Renee, Erica, a couple others). She got me in and out in 25 minutes!
OR! If a monetary donation is more up your alley, we are more than happy for you to temporarily divert you resources away from CJSTUF and direct them toward Haitian relief.
But be careful! Unfortunately, there are many scammers out there just dying to get their hands on your money.
I'm including links to the donations pages of the American Red Cross and Doctors Without Borders.
It's a real mess down there and they could use the help.
On another front, I've learned that there is a contest at the Ukrop's Monument Ave. 10K for best "Spirit Group." First place gets $300 and there are smaller prizes as well. If you are not planning to run/walk but wanted to come cheer on TEAM CJ, might as well be goofy and make a fool of yourself in an organized format, eh? :-) Reesestrong is doing it too so let's make sure one of us wins first place and the other takes second! Let's keep it all in the family!
The pledge form is in the special events section of the website and if anyone still wants to sign up to run/walk and haven't told me, please do. I'm going to have to get some more registration codes because we've sold out of the original 30!!! YAY!
All pledges can be sent to:
Charlotte Reynolds or CJSTUF
c/o The Reynolds
9 Slash Ct
Ashland, VA 23005
Here's the usual disclaimer: CJSTUF.org is still waiting on non-profit status (Soon...very soon) so as of this posting, donations are not yet tax deductible.
Aunt Phyllis is here and the New Mexico Contingent comes in today along with Dad and Juanita Bonita. Gonna be a monstrous weekend. Aunt Phyllis tried the Wii last night...I think both she and Rachel came close to busting a gut laughing a time or two. It was very good to hear.
Jay got the live streaming worked out and those of you who can't be here can watch it live on the world wide web. There will be a link on the home page soon.
I can't believe what an event this is becoming and we had very little to do with it. It's the amazing network again combined with the faculty and staff of Randolph-Macon College, Duncan Memorial United Methodist Church, the various mom's and dad's groups of Richmond, etc...mind blowing; simply mind blowing.
The good, healthy food is flowing (Wendy, you just HAD to bring those chocolate chip cookies, didn't you? YUMMY!) and we are feeling the love all over again.
Can't thank everyone enough.
Tuesday, January 12, 2010
Also, forgot to post this before but Kate Hall, founder of RichmondMom.com posted a wonderful tribute to CJ the other day. You may remember Kate's website from the Richmond Dad and Richmond Mommy Makeover contests that Roger and I both won last year. We were very touched by her blog post about Charlotte.
That is all...for now...
Saturday evening (before our retreat officially began) Roger and I went out on a "real" date. Our first date since Charlotte had passed. We went out to dinner and then went to see Avatar in Imax 3-D. Since the 7 PM show we intended to see was sold out, we hung around Barnes and Noble and Target until we made our way to the movie. The movie was wonderful! We had a really good evening out.
Since we didn't make it home from the movie till almost 2 AM, we took our time getting things going on Sunday. We left the house at about noon and set out towards Nelson County. We meandered and stopped at a few wineries along the way, arriving at Bryan's Oasis at about 5 PM.
Don't know if we've posted about this yet, but Bryan's Oasis is a 2 bedroom cottage in the middle of the George Washington National Forest. The Graeser family started this retreat a few years ago in honor of their 21-year old son Bryan who died from cancer. They work in partnership with Noah's Children to make this possible for grieving parents.
We were free to do as we pleased while we were there while having meals cooked for us and a roaring fire kept going in the wood stove. It was peaceful and relaxing. On Monday, we took a scenic drive around the area and Roger actually "got his line wet", doing a little fishing. I did a lot of reading and relaxing.
This afternoon, it was back to reality. Once we got to I-64 we finally had our email and phone access back. Fortunately, there were no emergencies and only a few emails to attend to. Now the real work begins. I think we are both ready to begin jumping back into work and "real life". We're going to try to keep our control and go in baby steps!
Seems like plans are coming together for the Memorial Service. The first of the family will start to arrive tomorrow and more will be coming in over the next few days.
Saturday, January 9, 2010
I have been doing surprisingly well considering everything. Like Roger, I have those weird moments when I feel I should check on her or look for her or that neither of us can leave the house unless someone's here to watch her...stuff like that. And I have a few teary moments when I think of her and I'm just very sad. For the most part, though, I'm ok. It helps that this did not come out of the blue. We have been grieving for a long time already and we were ready for her to go. Near the end, she was not the daughter that we knew and loved. She had become a shell of herself. That did help me let go.
The last few days have been a flurry of catch-up. I have fallen so far behind in all those mundane things in life that just have to get done (paying bills, organizing life, etc.). Fortunately, my aunt will be here next week and has volunteered to help with the task of setting things aright (at least mostly). I have a few more things to do before we retreat for three days but I'm almost there. Interestingly, my energy level seems to be growing as well. That's a good thing.
As Roger mentioned, we have been Wii-ing things up and that has helped my energy level as well. As most of you know, we have not been the picture of health or physical fitness during this last year and I vow to resolve that in 2010. The Wii is so great because I don't run and it's too cold to be outside much right now. It's fun and I LOVE being able to track my progress from day to day. I think I finally found an exercise program in which I'll get my money's worth!
One final note about the service next Saturday: I don't have final details yet, but it looks like we will most probably have a live webcast of the service available. That means that whether you are in Mechanicsville, Munich, Merritt Island, Marin County, or Miami, you should be able to view the memorial service as it happens. Our tech gurus are working out the details but I will post more info when I know it. SOOOOO...if you have been sad about not being able to attend the service, stay tuned. The other great thing about the webcast is that if Blackwell gets full, we will be able to simulcast the service next door in Duncan Memorial's sanctuary so there will be plenty of space (I hope!).
If it hasn't been posted here yet, I wanted everyone to know that we also have access to Duncan's preschool and nursery rooms and we will have volunteers who have agreed to watch younger kids (infants/toddlers) during the service. If that has effected anyone's decision to come/not come to the service, I wanted to make sure that was known.
That is all for now.
Only thought about her 1,000 time or so yesterday; give or take a few. Pretty much all day. But mostly good, happy memory type of thoughts. The magnitude of Charlotte not being here has hit a few times and I sit and am flabergasted for a bit and then I go back to what I was doing. It really nailed me once last night before bed. I also woke up again this morning thinking I had to go check on CJ. Habits, habits, habits.
Service an reception plans are progressing forward at warp speed. I have very little idea what's happening anymore (that's a good thing).
No dreams about Charlotte but I did have a dream that I was somehow, miraculously allowed the last spot on the PGA tour and had to tee off first in the dark in a big tournament. The first hole was a par 4 and my first drive was short but straight. With a bent 3 wood (no idea) I hit it up onto the green and into the hole for an eagle! For one hole, I was in the lead of a major PGA tournament. I called my Uncle Terry to have him look at the leaderboard because I was certain I wouldn't be there for long! :-) It was a fun dream.
I've started running again. Yesterday and this morning couldn't have been more of a contrast in workout success.
Yesterday should have been titled, "How Not To Run Your First Mile After A Break."
Cold Not prepared for it.
Music while Mark Knopfler's Ragpicker's Dream is a great album and I love "A Quality Shoe," it's not a very good running album. What's worse is I think I've already tried it before and learned nothing!
Pace Started out at my "in-shape" pace when I'm pitifully out of shape. Thought I was going to bust something very early on.
Today was much better. It was colder this morning than yesterday (28 degrees!) but I was ready with layers. Soundtrack provided by local Richmond heavies, Agents Of Good Roots (the album is One By One and totally ROCKS!) Took my time, ran twice as far in almost the same time, thought a lot about Charlotte and how cool it will be to run in a small sea of pink with TEAM CJ in the 10K (Don't worry, getting registration info updated today!)
Tomorrow, if I get up early enough, I might go three miles before we leave for our retreat. Anyone care to join me at 9 Slash Cottage at 7am? (how do you make an evil laugh emoticon?)
In case you didn't know, we invested in a Wii. Got it at Target and what with the sale, coupons, gift cards from the pharmacy, etc...We got it for much cheaper than we could have found it at Costco which is saying something.
Rachel and Kolbey are tearing it up. Kolbey's strength seems to lie with bowling at the moment. Rachel is the hula hoop queen and is getting pretty good at the boxing program (Should I be worried?) I'm still trying to get my head around the tennis trainer. One thing is for certain, and it backs up my earlier opinion about these game consoles, it gets you up off your butt and moving. Not much better for depression than that, I say. (Well, actually, I'm sure it was said long before I got around to it).
Kathy Lesher (from Noah's Children) is leaving for her trip to Thailand and took the time to check in with us before she left. We wish her safe and very interesting travels. Don't fall off the elephant.
Michael and Babz Barnett, founders and still current bigwigs of Romp n' Roll, were on ABC's Shark Tank last night looking to secure an investor. We watched with excitement as the Barnetts stood up the the panel of millioniares and didn't cave when they demanded 51% of the company. They ended up not securing the capital but did show everyone watching how passionate they are about Romp n' Roll (and they looked DAMN good on screen too!). The millioniares discounted the power of the internet and the Mommy Network. We know better, don't we? :-)
Speaking of that, if you saw the episode, please go to:
and vote for which product you thought was most interesting. We'll show them!
For our addicted followers, we know it may be tough to go three days with no update so I would like to suggest you surf some other sites and send your tremendous energy to other families who are also in "the soup" as it were. A good start would be to return to the Caringbridge site, fish around and revisit our closest friends like Reese, Mikayla, Halle, Mackenzi, Maddie, Allie etc... There are also Gage, Casey, Kylee, Abbie (although she has to approve visitors, she's very much worth knowing), Owen (who has a 5k run coming up in May), "The Zachs) as I like to call them, and many, many others. Some great success stories and some heart breakers. They all could use a good word or two.
Need to get to work on the 10K stuff.
Friday, January 8, 2010
I don't feel nearly as sad this morning as I did yesterday. Strange but even with all the preparation and seeing it coming from a mile away, Charlotte's death hit me much harder than I thought it would. I sat on the bench in the back yard (where I sat to smoke a cigar, yeah, I actually went and got a good one that day, when I came home after CJ was born) and cried as hard as I've ever cried in my life. I felt a little better afterward; at least composed enough to call people and let them know.
Rachel and I talked it over and she reminded me how seriously sleep deprived we both are and have been for months. That definitely has had an impact. Good wife. So we got some good sleep and in the same bed for the first time in a long time.
The snow last night had a very healing effect as well and the messages you all have been posting haven't hurt. We feel the "Love Network" closing around us, supporting us.
Plans are progressing nicely for the service. We haven't had to do much. One of us just says, "this need to be done" or "let's do it this way" and it gets done. Can't express our appreciation enough for those hashing out the details.
We will be heading out to our retreat on Sunday for a couple days. It's REALLY rural so I don't think we'll be in contact with anyone much. There is a landline and we will probably check in for messages but don't expect prompt responses.
Last but not least, we found the perfect urn for Charlotte's ashes. It's sort of a bio-degradable thing that can be used to plant a tree. I can't think of a better way to remember her. Just have to find the best possible plant/tree to foster butterfly activity and a space. Rachel tells me there's an actual butterfly bush. No need to offer suggestions, Gramps is a master gardener and will know exactly what to do.
For those asking about the Monument Ave 10K: If you're going to fundraise for CJSTUF, please don't register until I give you the super secret code. We have reserved spaces for TEAM CJ and I don't want you to pay for the race unless you really want to. The pledge form is in the Special Events section of the website. Just print it off and have at it. The training teams are all you. There are several, YMCA, Sportsbackers, The Beermosa Allstars (THERE I DID IT!!!)
Thanks so much for everything. (The thanking will continue whether you like it or not.)
Thursday, January 7, 2010
Tuesday, January 5, 2010
I just wanted to make everyone aware that Charlotte's memorial service on 1/16/10 has been moved to 1 PM to accomodate other events at RMC.
Thanks for the offers to help with the reception. As expected, they are pouring in and I am forwarding everyone's info to Kim and Meredith. I think we have all the musicians lined up.
If you are an amateur videographer (or professional for that matter) and would be willing to offer your services, please email Roger. I think we would like two or three camera people so we can get a few angles. We definitely want to be able to send a copy of the DVD to family and friends from out of town who cannot attend so we want to be able to capture the service as closely as possible. From what I understand, we will have a sound-tech there.
As the afternoon has waned, her breathing has become a bit more labored and erratic. We have actually given her a few boost doses of Atavan and Morphine. These seem to be easing any discomfort. Her color is changing (more gray) and her skin is much cooler. With every hour, we feel that she is closer to heaven. I think she is still very comfortable. Stay tuned...
Charlotte is still here. Dr. Archuleta came to see her today and his latest assessment is that she is slowly changing. There is definite progression in her breathing, color, skin tone, etc. It's just a slow process and she keeps hanging on. He is hypothesizing that it should be anywhere in the next 24-48 hours. That would fit in with the 7-10 day window since her last bit of "substantial" nutrition. We did tell him that if he was wrong, after the 48 hour window passed, we are going on a trip to Aruba and HE can stay here with her till she finally decides to get those butterfly wings out.
We have tried every possible permutation in this vigil. We have sat at her bedside and held her, we have sung to her, we have given her quiet, we have left the room (and even the house), we have told her repeatedly that WE are ready for her to fly. She will go when she goes and there's no changing that. I feel that our life is at an odd standstill. I find it hard to do so many things, not out of grief but just because I feel like I can't move on in many ways until she finally passes.
Roger and I did go out briefly (together) yesterday and it was refreshing. Kathy L. and Kolbey stayed with her while we went out to lunch and ran a few errands. It was so nice to be out of the house and it really energized me. We had planned a date for earlier last week and it got delayed when her condition seemed to change and we thought we were on the verge. I'm glad we didn't procrastinate much longer as I was going a bit stir crazy.
I apologize to anyone who had hoped to read to Charlotte and did not get their chance. We decided to put the reading vigil on indefinite hold and I think that at this point it is probably finished. While I loved having the energy in the house, the contrasting quiet and relative lack of visitors has been refreshing in its own right. I think that the tone set in the house has been perfect in each case. Now is a time for more quiet. Thank you to everyone who was able to come (or Skype) in and thanks to those who continue to leave us notes of encouragement on Facebook or via email. We appreciate the constant "vigil" that has been created in support of us as well.
Plans are coming together for her memorial service and I will share some of that information with you now (especially for those of you that are planners). The service is scheduled for Saturday January 16th at noon at Blackwell Auditorium on the Randolph-Macon College Campus in Ashland. Rev. Ed Tracy (from St. James the Less) and Rev. Kent Rahm (from Trinity Episcopal in Fredericksburg) will be officiating. There will be a reception to follow at Duncan Memorial church (next door). Kim Thies and Meredith Hayes are heading up the organization of the reception. If you would like to help in any way, please contact me and I will give you their contact information. (I don't want to publish their phone numbers on our blog directly). They have spoken with us and know what our wishes are in terms of the reception, etc. and we are letting them run with it.
As a reminder, the service and reception will be as kid friendly as possible. We will have children's activities and space for the kids (art activities, etc.) as well as a few people who have already volunteered to watch kids during the service if needed. The service will hopefully have a very celebratory tone to it so please feel free to bring children if you are comfortable with that. Also, the dress code is PINK and/or PURPLE (no somber black allowed).
For anyone who is out of town or cannot make it, we are hoping to have the service videotaped so we will make DVD copies available as soon as possible. We hope that anyone who wants to can attend but we also understand that not everyone will be able to make it. Some of you have already said your goodbyes to dear Charlotte and your efforts have been recognized.
I think that is all the news I have to report. Thank you, dear friends and family, for your constant vigil. We love you!
Monday, January 4, 2010
She is breathing so shallow, I can't believe her organs can function on the tiny amount of oxygen she's getting. Her heart is compensating by beating furiously to get enough blood through her circulatory system. Nurse Patty said that Rachel and I must have Energizer Bunny in us and gave some to her.
There seems to be no struggle going on, she has a tiny little cough that comes out very rarely but it's really not much of anything. It's her heart that's keeping her here, both literaly and figuratively. As Heather's (Wyatt's Heather) dad quoted, "She's strong like bull!"
New definition of surreal: Walking into CJ's room to check on her breathing and being almost disappointed when I find out she still is. I mean, WTF is that?!
Probably just selfishness. Or me trying to impose my insignificant expectations on such a deep and mysterious event. As long as she's comfortable, I need to just sit back and be awed.
We'll keep reading her stories, singing her songs, holding her hands, and giving her Eskimo, zebra, butterfly, etc...kisses until she's ready.
Sunday, January 3, 2010
Last night Rachel and I took turns holding her. We sang songs, rocked her, and enjoyed a quiet evening. We even got Granny to Skype in a story. We were having some issues connecting to her all day and then all of a sudden, it worked!
The lower amount of traffic through the house was a nice change. We still had plenty of people come by like Pastor Ed, Auntie 'Retta, Nurse Patty, etc... and lots of stories were still read but the people who agreed to Skype instead of come in person helped us have more "close-time" with CJ.
Today is going to be quiet as well. Rachel is sleeping in a little. I slept moderately well too which is a nice change. With all the "goodbye-ing" we've been doing, the idea of waking up and Charlotte being gone doesn't freak me out like it would have in my last lifetime. It would be just a matter-of-fact kind of thing now.
We really appreciate all the compliments people have given us concerning "how strong we are," and "I don't know how you're doing it," etc...and I hope we've had a positive (or at least calming) influence on someone but as we've said before, we haven't done it alone. Here's a story about that...
When we lived in Boone, NC, our dentist died suddenly while he and his family were on a cruise. He was a pretty popular guy in town and I was working at the local AM radio station so I got the job of talking to his wife to get details for a news story. What really touched me was how composed she was only days after he had died (this was before the funeral even happened) and how completely at peace she was even though it had to have been quite a shock. She was very nice and answered all my questions, adding answers to a few I forgot to ask, and seemed genuinely touched by the support and love she was receiving from the community. I've met a few others like her in my travels but she's the one who stands out in my mind. I give people like her at least some credit for my outlook on this situation. It's the old standing-on-the-shoulders-of-giants thing. Norman is in Ireland. (or was that, "No man is an island?")
A sense of humor doesn't hurt, either.
Gotta go look at my stubborn little girl.
Friday, January 1, 2010
I know that when she finally dies, I will be a mess for a while but for the most part, I can't believe how calm and accepting both Rachel and I are. At this point, we've been going through the mourning process for months and it's just time.
The word "surreal" keeps coming back over and over again. And it keeps taking on new meaning. Just lately, "surreal" is the fact that there is very little left of that all-over bodyache that has weighed me down over so much of the past year. I'm just so ready for her to be free. Almost impatient. Tell me that's not surreal. The phrase, "My daughter is going to die" is something I say to myself every now and then for the purpose of testing my grasp on reality. It still kind of jolts me but doesn't leaving me heaving on the floor like it might have before.
I still have my moments when the pipes leak and that can happen at anytime (like when Susan Greenbaum was here yesterday and sang The House At Pooh Corner at CJ's bedside. Not a dry eye in the room) but I think we have a much better grasp on things than those who haven't had the chance to be here with CJ and say their goodbyes the way they may want.
I will do this again, I'm sure, but I would like to thank everyone who has supported us through all this. Most recently, for those who have participated in the "reading vigil," it has been more successful that we ever could have imagined. This morning, The Gruffalo was read to CJ in Dutch, Skyped in from Holland by a high school friend. This afternoon, another high school friend, whom I haven't seen since 1984 or so, Skyped in from Denver (I think that's where she was). We've had many children come read and at one point yesterday, we had something like 12 people in the house. Oh yeah, and Mary Poppins showed up early this morning in her jammies! Carting coffee and scones no less.
All this together has helped us deal with the situation so much healthier than we could have otherwise. I am feeling that this is the way we, as a culture, should deal with death. It's not nice and on the surface seems so unfair that a child should have to die so young but this seems, here's the other word of the day, "healthy." At least as healthy as one could expect.
When CJ passes, we will call Noah's Children so someone can come out to pronounce her body. Then we will call Nelson Funeral Home to come get the body for cremation. Because of our amazing network, we've already started planning the memorial service. As details get sorted out, we'll let you know.
Thank you to our most amazing network and family. We love you and we feel the love you give to Charlotte and to us.
Peace and blessings...