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


  1. I have never found the words to say to express my deepest condolences to you and Rachel. I guess it's because all I want to do is to be in some way uplifting but I just know that nothing I could ever say or do would be enough.
    I just want you to know that your family has remained in my thoughts in prayers ever since I first learned of your loss and that you always will. So many people love you and you, Rachel and Charlotte have touched so many lives and I truly admire your courageous strength and endurance.xoxo

  2. Not exactly sure how I wound up here, but here I am. My first son lost his battle with a particularly nasty congenital heart defect on January 20, 2003. I hate January. I too have to deal with it being my birth month. Every year I face down my worst day of my life to turn around and try to not snip, snap, and smack everyone trying to wish me a happy day 10 days later. My heart reaches out to you. Thank you for the courage and strength to put your thoughts to words. I feel like I wear my grief everyday, but here 7 years later, I've discovered there are people I work with that know nothing about Caleb and the person I was before he stole my heart.


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