On the road again

This afternoon, Roger and I are headed to Denver for a much needed (and to toot our horn I'll say much deserved) few days away. His niece Cerissa is getting married on Thursday and we are very excited. I am sure it will be quite the celebration.

The move is completed. Romp n' Roll-Mechanicsville is OPEN for business and let's all exhale... There are still a few polishing touches to do but now the main thing is to just fill the place with kids. We have had overwhelming positive reactions from the Mechanicsville community as well as from our current customers so we are excited by that. Summer session starts in three weeks so tell all your friends and neighbors in Mechanicsville to hop on over and sign up for a class, camp, or birthday party. That's my shameless RNR plug of the week...

In CJSTUF news, our board met last week. While we don't have any major activities planned right now, there are some potentially large projects in the works for fall. Look for some CJSTUF merchandise to launch this summer (T-shirts, mugs, diaper pads...). Ok, maybe not diaper pads. These will be available on the website. In addition, Sarah Blankenship of Crystal Paintbrush is making some original jewelry designed exclusively for CJSTUF. It will feature lots of pink, purple, and butterflies! She is making a limited number of pieces and they will all be unique. We are hoping to launch this in September...just in time for the holiday shopping season. I saw a preview yesterday and was thrilled with the results!

In just a week we will launch our Home Based Biz of the Month. The business for June will be Tupperware! Dot Heffron and Jody Harmon will be the local reps handling this sale. I will post an update in the next week with all the details and we will update the website accordingly so stay tuned. This program is currently booked through August. July will feature Stella & Dot as well as design services by Reflections Interior Design. August will feature Mary Kay cosmetics. If you have any interest in any of these products, stay tuned for more information because a good portion of proceeds from the sale of these items will be donated to CJSTUF. We appreciate these entrepreneurs for their generosity.

If you have a Home-Based or Small Business and would like to be a featured fundraiser for CJSTUF, contact us and we will get you on the docket for the fall.

Once we return from Colorado, Roger will also be launching his official training schedule for his Double Marathon Madness this fall. He will run both the Chicago Marathon (in October) and the Richmond Marathon (in November). He has an ad hoc committee working with him on fundraising plans and events with a goal to raise $10,000.

Finally, soon after we return we will be distributing our first set of Financial Assistance Grants to 10 families served by MCV. I am excited that everyone that submitted an application qualified for funds, including two families that have two children (each) with a significant health need. We are very excited that we are able to do some GOOD WORK for the community this early in our development! The second set of applications are due October 1st so if you know anyone who would qualify, please encourage them to submit an application now.

On the personal front, I appreciate the many people who have inquired about our mental and physical health and well-being over the past few weeks. Roger and I continue to have our ups and downs on the emotional front. I was able to get away to NYC for a few days for Devon's graduation and that was a big help in the stress relief department. I'm really glad the opportunity presented itself. (Congrats, Devon!)

Preparing for this trip has been particularly emotional for me. Getting ready to fly on a plane just hearkens back all those memories of last year: commuting back and forth to Houston, the Disney trip, all of that travel with a very sick child. And now we fly alone. I don't need to tell anyone with kids that flying (or traveling) anywhere with a kid is an adventure in patience. Your packing style is different (why bother bringing a book to read? you won't need it!), there's so much more to think about. And getting on this plane without her is just another reminder that she is gone. Last year at this time, we were in Houston for the first time. We were meeting a new set of doctors, exploring options, wondering about the future.

Now here we are. This is our first truly "pleasure" trip in almost two years (I don't count the Make-A-Wish trip. As wonderful as that was, it was truly bittersweet and I'm not sure traveling with your terminally ill daughter qualifies as a vacation). We're traveling with one large suitcase for two people, a laptop, and a camera bag. Sometimes I think we're forgetting something. I hope that in these next few days we can just relax and recharge. I'm very happy that we can leave the store in such good hands. Our staff is amazing!

I'm sorry to leave you with sad news but we found out early this morning that Casey DeSombre passed away from Leukemia overnight. We never met Casey or his family but they were Caring Bridge folks who we have journeyed with for over a year. Casey was not quite three years old. Despite many innovative treatments and all the best care, he lost the battle. We pray for peace for his family at this difficult time. Cancer sucks. No other way to say it.

One Month

Yep, yesterday was a month (It was also Peter Gabriel's Birthday). As Rachel says, it seems a lifetime ago. What has been happening to me, lately, has been that I'll look at a picture of Charlotte and be surprised, "Woah! She's gone, that's right. Man, that's weird." The "moments" are always there.

Her stuff is still in her room, no real need to do anything with it just now, kids at Romp n' Roll still ask about her including one at a Birthday Bash yesterday who I didn't even know had met CJ, and I still think about her constantly.

The child yesterday asked, "Where's your kid?" Who knows, maybe it was just a generic question kids ask. They do that sometimes. Mom was very cool about it. Sometimes, parents who know our story whither in embarrassment when kids do that but I have no problem with it. I love talking about Charlotte.

I answered the child, "Well, here's a picture of her." and showed her the picture box Annette made with CJ's framed picture and all the great quotes (Thanks, again Annette. You're so amazing!) And that was it. I think kids just need to be reassured sometimes. About what, exactly, I'm not sure. Just being "present" counts for a lot.

We really didn't think a lot about the actual month out thing although it did cross our minds. Mainly because we were SO busy. We held classes at RnR, Rachel and Emily organized (I escaped that!), I got a replacement coat for the one that started falling apart on me, and there were two Birthday Bashes, one of which was a 2-hour party instead of our normal 90-min.

Both parties were a blast and very therapeutic. Every moment I spend in classes or parties at RnR seems to help me deal.

The weekend weather made us cancel Saturday morning classes for the second week in a row. There will many makeups to schedule.

Also as Rachel said, CJSTUF is moving right along! We seem to still be doing things the right way and when we finally get our official non-profit status, the flood gates of activity should open wide on all fronts. It just takes a while to get everything in place and thanks to our wonderful advisory council, it IS being done the right way.

That brings me to the latest CJSTUF stuff. The Monument Ave. 10k planning and TEAM CJ organization is progressing. We have a good problem which I might have already mentioned. Some enthusiastic members actually registered more runners/walkers on their codes than I had planned so if you have not registered and have trouble once you try, please let me know. I'll bet it's getting close to full.

I officially registered for the Chicago Marathon in October. That means I'll be doing Chicago in October and Richmond in November. Oi! No fundraising for these yet. We'll let you know. If anyone wants to do either one/both of these with me, let me know.

Thought I'd let you all know about the efforts and sentiments of others:

James Staudte is a friend from U of Miami and has been training like a mad dog and collecting pledges for CJSTUF. He's been blogging about his experiences on his own page.

We also got a wonderful note from a member at Romp n' Roll which pretty much recounts several stories we've heard about Charlotte and her activities when we weren't looking. With her permission, I've pasted it below:

"Dear Rachel and Roger,

My thoughts and prayers have been with you for the past year. And it is with a heavy heart that I sit down to write to you how deeply sorry we are that Charlotte has passed. While I have no way of understanding what you are going through and will continue to go through as you grieve, I can share with you my memory of your sweet daughter.

Molly and I were visiting Romp n Roll for one of the first times at Open Gym. We were the only ones there until a charming little curly-headed girl bounded into the room. She immediately introduced herself…not waiting for me to initiate. When I learned she was your daughter, I thought what a lucky little girl to have parents who own this awesome kids’ gym. (The only thing cooler would be if you lived in a castle and owned a pony farm. J) Molly was just a baby so she wasn’t able to do much in the gym. And Charlotte took it on herself, as the proud owner, to show us how to utilize each piece of equipment. The funniest part was that she used her impeccable charm and manners to ask my assistance in “spotting” her or giving her piggy-back rides. I can still clearly see her adorable smile and hear her angelic “please”. And it worked. Almost to the point that I kept temporarily forgetting about baby Molly just sitting over by the little rompers area. Through her exuberance, Charlotte was able to show me what fun being a toddler was! I wanted to take her home with us. I couldn’t wait for Molly to get to toddlerhood so we could laugh and play like sweet Charlotte did!

So it’s a simple and brief moment in your child’s life that I am recounting for you. But I am sharing it because I want you to realize what a lasting impression she made on me in that brief 30 minutes or so. I imagine that’s how she lived her four years…to the very fullest when she could; charming people along the way. Charm is not always easy to find in other people’s children. Cuteness, sweetness…yes. But charm is a sign of someone special. How fortunate you are to be Charming Charlotte’s parents! And I know you realize that every day.

With our deepest sympathy,"

We LOVE stories like these. Please keep sending them if you have them.

Charlotte is still here, sort of.

She's reacting less and less to questions and her breathing goes through these periods of slowdown and then it comes back up. I'm sure this will increase.

Nurse Cathy checked her out today. She said CJ's heart rate is slowing and her body is to the point where it won't take any food/water and wouldn't know what to do with it if it had some. Her blood pressure is very good which means she's in no distress or pain. Cathy confirmed for us that Charlotte would probably pass within the next few days. There will be noticable additions to the website when that happens so that everyone will know without having to read the blog because who knows what shape we'll be in?

Charlotte and I have a certain way of holding hands that I think she got from watching the movie, Wall-E. The concept of holding hands and interlocking fingers became a major theme and Charlotte developed this way of wanting to hold hands with me. I'll assume she did that with others but I'm not sure. Yesterday, she initiated that with me which made my day.

I quite possibly heard her last words the other day as well. I may have already mentioned this but at one point, she actually opened her eyes and said, "Daddy?" (preparing to tell me a plot point from one of her books or videos the way she had done so many times in the last few months)

Just about falling off the chair, I sputtered out something like, "Yes dear?" or "yeah, Baby?" or "Charlotte?" or something like that. I was pretty flustered by hearing her little voice which was raspy from dryness and lack of use.

"Marianna (I think) put on her crown and ..." didn't understand the rest. I asked her to say it again but the moment was gone. Haven't heard her speak since then except to grunt "Mm Hmm" (yes) once when we asked her if she wanted some chocolate milk.

The reading vigil continues and it's become so much more than I ever imagined. I came up with the concept to have voices filling Charlotte's last few days with stories because books/words are her favorite thing in the world. Since she couldn't manipulate the books very well anymore and I knew we weren't going to be able to read to her all day so I figured we'd get other people to help.

What has happened is people from all over, some we've never met before, have come in/Skyped in at all hours of the day and night. Some of you have brought your children and have used the opportunity as a very healthy way to introduce them to the concept of death. Some of you have sent in recordings or videos of yourselves reading stories and the energy of this house has remained. The only thing missing is a Skype from Holland. (Let us know when you're available Karin. Needs to be soon.)

The food, which has become healthier (mostly), keeps coming in and the wine bottles have been multiplying. Rachel and I are determined to bring our physical selves (fat tubs of goo) back up to the level of our spiritual selves (growing ever more peaceful).

I helped with Winter Camp at Romp n' Roll this morning which was great. It was a total parade of cuteness and it was so nice to feel the warmth of the kids when they saw me. Next week we start back big time and I think I'll be taking over some of Rachel's classes for a little while. I think Samantha, Annette, and Emily (who have taken over the lion's share of work at Romp n' Roll) can't give up the responsibility and extra hours fast enough!

Speaking of Emily, she's gone and done a very cool thing. She is a student at Randolph-Macon College in the Drama Dept. and is directing the upcoming production of Alice In Wonderland. She has coordinated with Prof. Joe Mattys to donate all ticket sales to Charlotte's fund!

So go see it! :-) It runs March 17-20, 2010 at the Black Box Theater on R-MC's campus. Tickets are $5. Can't beat it with a stick! I'm thinking we might pick one of those nights to be CJSTUF Night Out At The Black Box. We'll let you know. Call(804) 752-7316 to reserve your tickets. It's a small venue and large crowds are expected every night.

Here's another thing coming up for runners/walkers. For anyone who wants to use the races for fund raising, we will have registrations available for the Ukrop's (What are they going to call it next year?) Monument Ave 10K in March and then more for the Suntrust Richmond Marathon, McDonald's Half Marathon, and HCAVA 8K in November. All those interested in participating who raise $500 or more in pledges will receive their 10K registration free. Not sure what the limit will be for the Nov races.

For the 10K, we will have pledge forms available very soon or you can make your own. Make sure all checks are made out to Charlotte or CJSTUF. For the November races, we hope to be a little more technically advanced. We're working on our own race accesories and everything.

Please let me know if you're interested in participating and what race(s) you want to be in. I'll be doing the 10K, the Richmond Marathon, and probably a few other races during the year. I even want to try the very questionable act of running the Chicago Marathon in October as well.

That's all for now.