Sunday, January 16, 2011

The Worst Day Of My Life, Parts 1 & 2

Roger here...I apologize ahead of time for this dark post but it's where I am right now.

We've been using this blog mostly as a way to update everyone about CJSTUF activities and events and Rachel has started her personal blog which has been a great creative outlet for her. It's very well written and I highly recommend it.

Be that as it may, I will still be using this blog for my own occasional ramblings. And boy! do I need to ramble for a bit.

So about that title...What do YOU think would be the worst day of my life? The day Charlotte died? Believe it or not, no. Although it really does suck overall, we were already mourning her even before Nurse Cathy from Noah's Children let us know she had officially gone. Every day she held on at the end was almost torturous for us. We were ready for her to be free of the cocoon. So no, January 7th, 2010, while still being very bad, wasn't the worst.

Was it the day we found out there wasn't anything else we could do? That all treatment options had been exhausted? That day was horrible too but, again, we pretty much knew what Dr. Tye was going to tell us. We had seen the signs and just knew. What I can't believe was that I actually tried to teach at Romp n' Roll that day. Not one of my smarter decisions. I can only chalk it up to being in an altered state of consciousness due to stress and sleep deprivation. I don't even remember what that date was and I don't really care to remember. Rachel could tell you, I'm sure.

Well, (and I don't think this is brand new information to most) The Worst Day Of My Life, Part 1 was Tuesday, January 20, 2009; the day Charlotte was diagnosed. I remember almost everything about that day even to the hot dogs we had at the gas station convenience store by the pediatrician's office. (The counter we ate at is gone now, by the way. I was sad when I realized that.)

It was short lived, though, as two days later, we had to let go of our baby girl and give her away to the pediatric neurosurgery team at MCV Hospital so they could try to "take the headache out of [her] head." Another thing I've already said multiple times is that watching them wheel her down the hall away from us and into surgery was the absolute hardest thing I've ever done and just thinking about it makes me "leak" (as Rachel likes to call it).

THAT was The Worst Day Of My Life Part 2 and through the surgeries, the chemo, the radiation, the traveling, the sleeplessness, the uncertainty, the stress, the anger, the sheer terror, and even through having to deal with the realization that there was nothing else we could do for our Charlotte, Thursday, January 22, 2009 remains the worst day of my life. Which is coming up soon enough which is why it's on my mind.

Which makes January, my birth month no less, a month that could disappear any time. Maybe since they adjusted the Zodiac signs (even adding one, I guess), they might suddenly realize they didn't need January so much.

But who am I kidding? January ain't goin' anywhere and I guess I have to have a birthday sometime. Might as well be January. Stay tuned for more on that...

The past couple months have been pretty tough for both of us, I'll admit it. Everyone's rule-of-thumb is that the first year is the hardest. God, I hope so.

We've spoken before about the odd things that will blindside us and the latest thing for me has been how I won't be able to teach Charlotte how to search for her own answers to really big questions. Like, "Why is Huckleberry Finn banned?" and "Why are people mean to each other?" I won't be doing that now. It was one of the things I was most looking forward to doing with her.

Yet with all the moping and "leaking," there have been instances of "amazingness" (yes I said "amazingness").

Like how our lives seem to be re-coalescing into something similar to something called a "normal" life. It's not there yet but it's on its way.

Another very touching surprise was a note I received from a friend who had just attended the JEN (Jazz Education Network) National Conference in New Orleans. She described how Julia Dollison and several other vocalist friends performed in a project called Vertical Voices (Julia and her husband, Kerry Marsh, are the ones who arranged, wrote lyrics to, and recorded their version of Keith Jarrett's Radiance Part 8 which appears on

Well, here's a bit of the note we received:

"...the reason I wanted to write, besides letting you know you were missed, was to share with you that Julia's group Vertical Voices performed with Jen Shelton Barnes, Kerry and Greg Jasperse. Julia dedicated Sky Blue to You and Charlotte before they sang it and it was achingly beautiful. Totally transcendent and gorgeous. Just wanted you to know that you are thought of and loved, as is Ms. Charlotte remembered and cherished."

I read that as I was cleaning up Romp n' Roll To Go at a local daycare and I pretty much lost it right there. I'm glad the kids had left to go on a field trip. Another broken record message that keeps coming back is how many totally cool people we are privileged to know. Thank you Julia and Kerry (all at the JEN Conference this year).

What added to that effect was something that happened earlier during RnR2Go. one of the girls whose family knows our story interrupted my opening spiel to say, "My mommy told me that Charlotte died." I'm used to that and I love talking about Charlotte so I said, "Yes she did and that's why wear this pink bracelet to show how much I love her." Just then, a boy who is also an RnR regular said, with an intense sincerity that just floored me, "I love her too."

Talk about "amazingness."

So I was something of a mess for a while after getting that note.

More stuff going on:

We hired a real honest-to-goodness employee at CJSTUF! That's actually very exciting to us. You've already met her but I also want to welcome Michelle Alford. We're hoping for great things from her.

We've started the ball rolling for TEAM CJ in the Monument Ave 10K so if you want to run, walk, or cheer, come on down! The intent and pledge forms are here and we're going to try for the Hirschler Fleischer Spirit Award again this year. Please come be a part of it.

I've started training for the Big Sur International Marathon in May, It will be the first official out-of-state FUN-raiser for CJSTUF. If anyone is interested in participating out on the left-coast, let us know. Thanks to Shelley Wilkinson for helping to organize details out there. Besides a straight benefit to CJSTUF, we also hope to leave a portion of funds raised right in the Monterey area.

Wow! As usual, this is really long.

I leave you with the hope that many of you can come out to The Station Cafe in Ashland to help me celebrate my "splangle" (45th) birthday on Jan 29th. As with most of our life these days, what isn't dedicated to Romp n' Roll gets focused on so there will actually be an admission fee! I guess we have to call it a "suggested donation" or something to satisfy the lawyers or whoever. $5 will get you coffee/tea and there will be cake by Mo Cakes! YUM!

Last thought (my new mantra): "Conquer your fear and you're done."

Miss you, Monkey Butt

Thursday, January 13, 2011

Two Thumbs Up

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

And it snowed.

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

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

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

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

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

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

Thursday, January 6, 2011

Today We Remember

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

Her legacy lives on through our foundation.   

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

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

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

She is gone but she will never be forgotten. 
Charlotte Jennie Reynolds

Radiance from Julia Dollison on Vimeo.

Wednesday, January 5, 2011

January News

January is off to a great start. 
There are so many exciting things to report!

First, we are excited to announce the recent hire of Michelle Alford as our new Foundation Administrator and Event Coordinator.

Michelle will be working with us to plan fundraising events and campaigns as well as assist in recruitment and organization of volunteers. If you have signed up to help us as a volunteer, you may hear from her soon!

Next, our Business of the Month for January is The Station Cafe.  Located at 113 Railroad Avenue in Downtown Ashland, The Station Cafe is donating 10% of sales in January to CJSTUF if you mention our organization when you place your order. The restaurant is open Monday-Friday 7 AM-3 PM and Saturday 9 AM-5 PM. Their menu features coffee drinks, gourmet hot dogs, ice cream, and other family-friendly fare.

PLUS we will be celebrating Roger's birthday at the Cafe on Saturday January 29th from 6-8 PM. Admission will be $5 and the event will feature cake, ice cream, and a music jam (bring your axe!).

Finally, we need your VOTE!

We are in the running for another grant that will help fund the CJ's Meal Fairies program. Please go to the Kindermusik website and search for our grant (CJ's Meal Fairies). Voting is active from January 5th-February 9th. Each individual can vote up to 10 times per day. Please spread the word to all your friends!

Saturday, January 1, 2011

This is how we help

A note we received from a recipient of one of our Financial Assistance Grants:

"As I sit by S.'s bed preparing for another round of MRIs at [the] hospital...the same knots appear and churn in my belly.  I'll never get used to this even though we've done this countless times just to check the size and shapes of the tumors throughout her body.  But then I think of you and your Charlotte and realize that "EVERY DAY TRULY IS A BONUS".  Thank you for taking your pain and turning it into something positive.  Thank you for giving out of your tremendous loss.  Thank you for reminding me to never give up and to do all I can with [my daughter].  Thank you for CJ's Thumbs Up Foundation and your Gift of Love."

Thank YOU to our supporters who helps us carry out our mission as we move into year two!