Sunday, May 19, 2013

We have moved!

In case you hadn't noticed, the CJSTUF blog has been moved! 

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Thursday, January 10, 2013

Yes, And...

Some stuf:  Part of the ComedySportz Improv Theatre mantra is, "Yes, and..." which, to me, means that when I am presented with a challenge, I accept it and add to the development of a resolution.  Even if I am a tiny cog in the machine, my little part might help things along.

So we need a "yes, and..."

We need banks/financial institutions/check cashing stores in the Central Virginia Region willing to waive check cashing fees for our families.  We want ALL of our financial assistance grants going to the families and their actual bills.

First Community Bank will do this because they are our bank and the checks are drawn on our account with them so that's normal but there are families who don't live near a FCB and don't have a bank account anywhere so they have to go to a check cashing store which charges 5-10%.

If you are affiliated with an organization that can help with this, please let us know.

There's nothing to gain for the organization.  It's just the right thing to do and we will be very appreciative.  I'll be more than willing to come in and meet with you or your manager to discuss options.  Just let us know.

Yes, and... (I hand it off to you)

Monday, January 7, 2013

Three Years (Pt. 2)

What can we say about January 7, 2010 that hasn't already been said?  Not much.  Doesn't make us think about it any less.  Doesn't lighten the load of remembering. Doesn't convince the bus driver to go park somewhere else.  It still pretty much sucks.

So what I'd like to do on this third anniversary of Charlotte Jennie's metamorphosis is to offer you music that reminds me (Daddy) of her.

The Great Remember from the CD Rare Bird Alert is the latest tune that has her spirit all over it.  The moment I saw this video of Steve Martin playing his original clawhammer banjo composition during his tour with the Steep Canyon Rangers, I thought of her. It has a beautiful, yearning melody and yet there are still wonderful elements of Martin's humor as he tunes before he plays.

Radiance is a vocal version of a Keith Jarrett improvisation recorded by Julia Dollison and Kerry Marsh.  I believe Kerry's sister put together the video slide show.  It's heartbreakingly beautiful and very difficult for me to watch.

Charlotte certainly loved Dora The Explorer.  She learned several Spanish words and phrases watching Dora and after her first surgery, when she started being able to speak, she counted to 10 in Spanish for us.  It meant an awful lot to hear her do that.

The Chanticleer version of Franz Biebl's Ave Maria is another heartbreakingly beautiful piece and I can't hear it without thinking about Charlotte and becoming a blubbering mess.  (The link comes complete with fireplace)

I believe someone introduced us to  "Two Thumbs Up" by Johnny Bregar after Charlotte died or near thereabouts.  It has become one of our official theme songs and Johnny has been tremendously generous to give us permission to do pretty much whatever we want with his recording.  We promise not to abuse that trust.

Here's another song that someone sent to us after Jan 7, 2010.  It's Jonatha Brooke's version of Woody Guthrie's, "New Star."  The lyrics are actually fairly odd but it came to us at the right time and now it has all kinds of meaning Woody never intended, I'm sure.

Of course, you didn't think I was going to leave out the Disney angle, did you?  Let's start with the last movie Charlotte saw in a theater, The Princess and the Frog.  There isn't a tune on the soundtrack that DOESN'T make me think of Charlotte and there was a time when I would obsessively listen to it every morning when opening up at Romp n' Roll (much to the chagrin, I'm sure, of the rest of the staff); however, I will include my favorite song from the movie, "Gonna Take You There."

How about some Little Mermaid?  "Part of Your World" seems so ubiquitous; so completely over played but it's a Charlotte song so I don't think I will ever get tired of it.

Next comes Mary Poppins.  I don't remember exactly when this movie became one of Charlotte's favorites but all of a sudden, it was all she wanted to watch.  So here's "Let's Go Fly A Kite" which has become one of our unofficial theme songs.

Last but not least by any stretch of the imagination, here's Charlotte's favorite version of Charlotte's favorite song, Frosty The Snowman by Dan Tyminsky.  We actually have a video of Charlotte dancing and sort of doing karaoke to this song.  We also have video of several former NFL players singing this to her on her birthday on July 9, 2009 in the the Nelson Clinic at Children's Hospital of Richmond.  THAT was something to see!  Waddya know? You can!  Here!

I'm sure I've left off dozens of songs and I'll probably be adding a tune here and there for days.  Please feel free to add your own song if it reminds you of CJ.

Today, we invite you to have a chocolate milk toast in honor of Charlotte and if you'd like, eat some "dadoo" (Cheerios or "round cereal") and mac n' cheese.

We love you so very much, Monkey Butt and miss you every day.

Sunday, January 6, 2013

Three Years (Pt. 1)

On January 6, 2010, CJ's Thumbs Up Foundation was officially incorporated, the first step in our process towards 501(c)3 status.  In the three years of our existence, CJSTUF has provided assistance (financial, material, and emotional) to well over a thousand people (children with chronic and life-threatening illnesses, their caregivers, and families).

We couldn't have done it without the support of our fabulous and generous Network.  You have answered every call for votes, donations, and time and for that we are grateful beyond measure.  We blew away all of our budget/revenue projections for the year and are extremely stable heading into 2013.

More importantly, you have helped us ease the burden of many families facing the worst scenario anyone could imagine.

The future is looking extremely bright for the Foundation and our pipe dream goals are seeming a bit less like pipe dreams than they did before.  Please stay tuned for some great upcoming events including CJ's Thumbs Up Ball in February, TEAM CJ's participation in the Monument Ave. 10K on April 13, and CJ The DJ's Bluegrass (Mostly) Boogaloo on Sat, July 20.  There will be a few surprises as well so pay attention.

Thank you, also, for helping US deal with our own grief as well.  Doing what we do is as much therapy for us as it is beneficial for our families.

We wish you peace for the coming year but hope you will also help us partake in a little excitement for CJSTUF along the way.

Roger and Rachel
Charlotte Jennie's Grownups

Wednesday, December 12, 2012

A reminder of our mission

This week, I had the opportunity to give $4000 to families in need.  Thanks to the incredible generosity of our donors and supporters, CJ's Thumbs Up Foundation has had a wonderful year.  At the December board meeting, our Board of Directors voted to award all eight families on the waiting list with Financial Assistance Grants.  

This means that, to date, CJSTUF has provided over 100 families with financial assistance, either through grants or emergency aid since its founding in January 2010.  These families face incredible challenges.  One child has a breathing tube and g-tube (feeding tube) and relies on round-the-clock care by her family and nursing support.  One girl is less than two years old and is facing multiple open-heart surgeries.  Half of the recipients are battling cancer, facing multiple hospitalizations with intensive medications and therapies.  

While $500 will not solve any family's financial woes, that amount of money can make such a substantial difference.  These grants are providing assistance to pay utility bills and rent. One grant will help a family place a deposit on a new apartment.  They have been living with other family members for over a year.  These grants also help provide assurance to our families: they are not alone.  The community cares about their needs.  We are here to help. 

On a selfish note, these grants give me a way to pay it forward.  We keep Charlotte's spirit alive through the work of the foundation.  Every time I write a check to these families and address their envelopes, I think of my own inspirational butterfly. 

Thank you for helping to make all of this possible. 


Co-founder & Executive Director

Monday, November 26, 2012

Some VERY quick announcements!

Roger will be wrapping gifts at the Chesterfield Towne Center Barnes & Noble from 10am-2pm today!  There are other dates as well and some need a volunteer or two.  You can go to the website and sign up if you'd like to help out.

Today is also "Cyber-Monday" so please surf the web on over to HandmadeHomies4CJ which is our Business Of The Month for November.

If you are planning travel in the next year and can wait to book until February, the BOTM will be right up your alley.

Rachel and Roger will be travelling to Tiffin, Ohio this weekend for a multi-pronged event at Tiffin University.  Roger will be guest-performing at the annual "Christmas At The Ritz" concert on Saturday, Dec 1 and MIGHT be doing a vocal improv clinic for the students.  Rachel will be doing a book signing at the TU Bookstore as well.

The concert is a fundraiser and CJSTUF will be one of the beneficiaries.

Besides Black Friday and Cyber-Monday, another new trend is "Give Back Tuesday" where people are encouraged to donate to the charity of their choice.  Here's the DONATE button.  Why wait 'til Tuesday?

Monday, November 12, 2012

We Still Mourn, But It's Different

It never really ends.  We think about our beautiful baby girl every day; several times a day.  Sometimes it's pretty much constant.

Our adorable little ladybug
Take Wednesday, October 31 for example.  Throughout the day, as many of our friends and family were posting photos of their kids' costumes and discussing preparations for the evening's festivities, we were constantly reminded of the four Halloweens we were fortunate enough to spend with Charlotte.  One of our strongest memories is of Charlotte's second Halloween when she dressed as a ladybug and was quite possibly the cutest thing that EVER walked this Earth!  We took her to Randolph-Macon College to trick or treat in the dorms and it was so amazing to watch her figure out that when she knocked on doors and babbled something, the smitten students would give her stuff.  It was the first time I felt that parental melancholy that comes with knowing she'll never be this small again.

This year, we set up our traditional table out by the street and had a great time handing out goodies and seeing all the kids and great costumes; all the while thinking of our little peanut.

CJ on Election Day 2008
Or take Tuesday, November 6.  Election Day.  This was always a BIG day for us.  Both of Rachel and I were determined to teach Charlotte about the democratic process and to encourage her to develop her own voice on whatever issues she would face as she grew into an adult.  We always brought her with us when we voted, even in the local elections.  I would schedule my day around when I would be able to take Charlotte to the polling place and often she would "vote" twice in a day.

She filled our thoughts as we participated in the 2012 election.

And now we head into the Holiday Season and a new round of memories are poised to take over, keeping the mourning front and center.

It never really ends.

And yet, it's a little different now.  There are more of those good moments.  Like last Thursday at the Lunch Bunch which CJSTUF  facilitates at Children's Hospital of Richmond at VCU in conjunction with Connor's Heroes Foundation.  The food was catered by Christopher's Runaway Gormay (SO yummy!) and we served 71 people a good, moderately healthy meal when they might have had to visit the vending machines or resort to paying for fast food downstairs.  We know from experience that is something families should NOT have to deal with while facing a child's health crisis.

We also meet new friends every time we serve meals which lets them know about resources and provides us more reason to continue to expand the program.

Then there was November 10.  I ran the American Family Fitness Half-Marathon (part of the Richmond Marathon) and Rachel did a book signing at an arts and craft show where she sold some books and connected with several supporters.

Saturday morning, I almost decided not to do the half-marathon at all since I had popped something in my knee last Monday and it had been hurting all week.  I wasn't sure if I could even finish the race.  Then, of course, when I thought of Charlotte and what all the other families have endured, I put my whining away and suited up.

Good thing I did because it was probably the most fulfilling race I've ever run!  I got a lot of extra motivation right at the start line when I saw a man wearing a t-shirt that read, "13.1 Is Still Easier Than Chemo." Amen, dude.

Throughout the event, my mind was full of thoughts of Charlotte and so many others whose paths we've crossed.  I thought of Abbie Waters as I passed her old school, I thought of CJ's Godparents as I passed their house, I thought of the Klauers, the Goodmans, the Hubbels...lots of others.  I met a woman within the the first two miles from Newport News who was running her first half and only the third time, "in front of people."  I fell in with a small group of people at around the halfway point, many of whom just happened to have leg and knee issues.  There was a lot of self deprecating humor being passed around but we all finished!  And all along the way, were the occasional shout-outs to CJ's Daddy (on my bib) or Team CJ (on the shirt) or people who recognized me and shouted encouragement. I can't tell you how much that helps!

Kristin Mudd's Funky Shoes
Kristin's Funky Shoes Flipside

I finished (the main goal!) in about 2 hours and 40 minutes, the knee held out, and crossing the finish line, I let out a "WHOOP" like I never have before.  It was a great moment.  Then I caught up to Kristin Mudd and her funky shoes!  It was her first half EVER!  Kudos to her.

And CJSTUF continues to grow.  Thanks very much to Rachel's very capable Executive Directorship, our wonderful board, and support from the Network, we are having a tremendous year of fundraising and providing resources to our families.  We just had a very productive Strategic Planning Session and we have homework to do, after which, we will be ready to take a step up to the next level of operation for 2013 and beyond.

At Positive Vibe Cafe
So the therapy continues and, quite possibly, it's working.  Maybe.  Just a little.