Family Spotlight: The Hamiltons

CJSTUF caught up with one of our favorite grant recipient families, The Hamilton Family, to talk about how their lives have been impacted by their son Ethan’s diagnosis, treatment, and how CJSTUF has helped make their days just a tiny bit easier.  Even though life is never dull, Ethan’s mom Laura took some time out of her day to answer a few questions for us!

Ethan shares a smile!
Ethan shares a smile!

Can you summarize Ethan’s story for us?

Ethan was born 6 weeks premature with multiple birth defects. At the age of 3 months he had the first of 10 surgeries to repair urological birth defects.  After traveling to three different states, participating in 37 different genetic tests and being a patient at the National Institute of Health, a diagnosis of Mitochondrial Disease Complex I and ATR-X Syndrome was diagnosed.  Both diseases are rare and both limit your lifespan.

How did you learn about CJSTUF?

Our family followed Charlotte’s story through friends and social media.  We became aware of the foundation while attending a birthday party at Romp n Roll in Mechanicsville.  At the time Ethan was almost one and we decided to have a “Birthday Party for CJ”.  Instead of gifts we asked friends and family to make a donation to CJSTUF in honor of Ethan’s first year of life. We were honored to give back to the community but little did we know that one day we would end up benefiting from CJSTUF as a Financial Grant Recipient.

How do you feel CJSTUF has supported your family?

CJSTUF supported our family with financial assistance that allowed us to purchase an iPad.  The iPad has been used for comfort for Ethan during his many hospital visits and appointments. He also has been using it as a learning tool and has helped Ethan improve his communication skills.  Not only did the grant allow our family to purchase something for Ethan to help comfort him but it allowed us to do something for Ethan that was “fun”.  Children with chronic and life threatening illnesses often do not get “extras” because of the extremely high cost of healthcare including medications, equipment and hospital stays.  The grant allowed us to give Ethan a bit of sunshine in a time of dark clouds.

What do you think is the biggest challenge for a family of a child with a story like Ethan’s?

I would say the biggest challenge for a family like ours is dealing with the reality of what our life will be like in the future without our child while living in the present and enjoying the child we have today.

What would be one thing you wish people knew about CJSTUF?

I wish people knew how amazing Charlotte’s parents are.  Not because they had and lost a child with cancer but because out of the terrible pain and loss they made something so beautiful and helpful for other children and their families.

If you are interested in keeping up with Ethan and his family, you can “like” his Facebook Page called “Energy for Ethan.” 

Announcing Our April Biz of the Month

Are you looking for an opportunity to work with a fabulous professional photographer for your family pictures?
Eight Richmond-area photographers have donated a 30-minute photo session and 10 digital pictures with unlimited printing rights. During the month of April, every $10 donation will be entered as a chance to win a photo session with a participating photographer.   
Special thanks to our participating photographers:
 
To enter the giveaway, make a donation to CJSTUF online between April 4th and April 30th. Cash or check donations will also be accepted at Romp n’ Roll-Mechanicsville. Each $10 donation will equal one entry into the raffle. (i.e. a $100 donation = 10 entries) 
For more information, check out our Biz of the Month page on our website. 

70 Days and Counting


The Big Sur International Marathon is 70 days away. Gonna be rough. My knee is still healing and my miles are not increasing like they should be. My “spring” cold-thing and covering for sick employees at Romp n’ Roll didn’t help either. Well, since I already plan to finish dead last, I have nothing to worry about!

The temps are warming up in the mornings, though, so I’ll get out more this week. I also went to see Dr. Anna for an adjustment and some electro-stim on the knee which helped. One funny thing is that I turned the electro-stim up so high that it gave me a blister on my leg. Felt kinda good, though.

The main reason I’m writing is to post a link to a story about the organization with which we’ve teamed in the Monterey area. The more I learn about the Children’s Hospice and Palliative Care Coalition, the more I think we’ve made a good choice. The article definitely gave me a “moment” while reading in the living room tonight.

This is a group making a difference in families’ lives and it’s actually saving money in the surreal world of California economics.

On another note, if you’re in the Richmond, VA area on Saturday, Feb 26, and you’ve been longing to get more involved with the Foundation, please come by our house at 9 Slash Ct. in Ashland at 4pm for the big “Volunteer Recruitment Event.” There will be refreshments, productive assignments, and a dozen trained monkeys knitting humorous cummerbunds for all.

Ok, one of those things isn’t true.

Last but not least, I now have my own FUN-raising page for Monument Ave 10K and Big Sur!!! Please click on the link, laugh at me in a pink skirt, and donate if you’d like.

Enjoy the end of winter and don’t forget to hug your babies.

I don’t feel old…or do I?

It’s been a busy week. I celebrated my 35th birthday yesterday.  I’m not sure if I feel my age.  I mean, what does 35 feel like?  I guess it depends on the day.  Most days I don’t feel like that is an old number.  Then I look at everything that’s happened to me in the last year…5 years…10 years.  Wow! 

We just hired a few a new staff member at Romp n’ Roll.  She was born the year I went to college!  It’s only when I hear things along those lines that I feel old.  Anyway, it was a good birthday.  As low key as I would like with well-wishes from many friends and family.  As with any holiday this year, though, something was missing.  A pretty big something.  I suppose that is the most difficult thing about life these days.  No matter how good things get, you remember that something (or someone) isn’t there to share the experience. 

Earlier this week, Roger went down to the James Center where ASK launched the Kourageous Kids exhibit, showing all the courageous cancer warriors who are being served through the clinic this year. The theme this year was “Hats Off for Kourageous Kids” and we donated one of CJ’s hats to the cause.  Another reminder that September is Childhood Cancer Awareness Month.  Also, it’s not too late to register for the ReeseStrong 5K this Saturday, 9/18, in Mechanicsville.  Roger will be running in his Team CJ pink and purple.  Feel free to join him!

Richmond Rocks books are selling at Romp n’ Roll-Mechanicsville all month to benefit CJSTUF.  Books are $14.95+ tax and 30% of the proceeds will benefit our organization.  This is an adorable children’s book written and illustrated by local Richmonders.  Not only does it support CJSTUF but it also supports local small businesses!  You can pay for the books with checks, cash, or credit card so get your autographed copy today!

We received some more donations this week towards Roger’s Double Marathon challenge.  So far, the vast majority of the donations are going towards the University of Miami Hurricanes side of things.  Are there any Hokies out there that want to see Roger run in a turkey suit?  If they are, they’ve been vewy vewy quiet!  The challenge continues till November 13th so let’s see if we can meet the 10K fundraising goal!

Busy week ahead with Board meetings for the foundation.  By the way, if you haven’t noticed yet, you can now access this blog directly through our website.  We’ve added a tab at the top of the page and the blog will feed there every time we update it.  Thanks to all our supporters who continue to follow us on Facebook and through this blog. 

I told you August would be busy!

So the Wine Down Wednesday last week was a BLAST!  Final total for the fundraiser was $575 and it was a great way to get the word out about CJSTUF to a new crowd of people.  A huge thanks to Kate Hall from RichmondMom.com and the folks at Skirt magazine for sponsoring and promoting the event. 

As the saying goes, time and tide wait for no man so we are headed for MORE fun events this week.  As mentioned in the previous blog post, our Business of the Month for August is Mary Kay cosmetics and Nichole Frise is our Mary Kay representative.  Here are the details:

As you can see, there are opportunities to order online, in person (at the Fall Frenzy party on 8/12 or at the summer concert), or by phone. 

Speaking of the Summer Concert, make sure you have your calendars marked and join us for this great event.  We just added a new sponsor this week: Richmond BMW!  We are excited that they have contributed to our efforts.  Can’t wait to see the sample car that they bring to the concert.

Finally, our PayPal account has been re-activated so the DONATE button on our website is fully functional again.  Spread the word!

With everything we have going on, you might be wondering how Roger and I are doing.  As might be expected, we are both extremely busy, easily working about 60 hours a week at the three jobs we are each balancing.  Roger and I can go for a day or two without even seeing each other.  Thank heaven for text messages and email!  I think we’re both pretty exhausted and there just isn’t enough time in the day. 

Thankfully, Roger’s gig with Kings Dominion should end soon and we are slowly transitioning my Romp n’ Roll duties to others.  We kind of see a light at the end of the tunnel (September) and hopefully things will calm down a bit.  Until then, we just keep pluggin’.  We are in the process of assembling a team of individuals who will compose our CJSTUF Advisory Council for the end of 2010 and going into 2011.  This team will work with us and our board to plan events, help with publicity, and help us organize and coordinate other volunteers.  Are you interested?  Some of you have already told us that you are. If we haven’t called on you formally yet, don’t fret.  BUT…if you want to make sure that we know you want to help, please go to the volunteer section of our website and become a part of our database.  I will be using this information over the next month to pull together some committees and get organized!

Roger and I had a chance to work a birthday party together today for the first time in months.  As usual, Roger was completely engaging and silly with the kids and we made a good team.  We had an interesting moment when one of the guests at the party turned out to be a little blonde girl of 4 or so named Charlotte…wearing a t-shirt with a purple butterfly design.  She really didn’t look anything like CJ but it was a funny coincidence all the same. 

AUGUST is gonna ROCK!

So who is ready for a fabulous AUGUST?

Now that we have our non-profit status, we are gonna rock the tax-deductible world! Bring it on!

A few of you have asked about our “official” address for reporting to the IRS. Our official address is: 9 Slash Ct. Ashland, VA 23005. I am guessing that they will also recognize our PO Box 854 address as well.

Roger is working feverishly to repair our PayPal account (must send in needed documents, etc.) and then we hope to have the donate button and online ordering available for our CJSTUF products. Remember, you can still place local orders (or even out of town orders) and pay with a check. I understand that a Bald Chicks Rock shirt has already made its way to a cancer patient in Memphis! Awesome!

August seems to be skewing to the ladies with some of our upcoming events. This Wednesday (August 4th) is the Wine Down at the Wine Loft. $5 admission gets you a raffle ticket, great appetizers, and access to a fabulous cash bar with unique and tasty wines. Additional raffle tickets are available for $1 each and I know that Kate Hall from RichmondMom.com will bring some fabulous swag to give away. There will be a brief presentation on CJSTUF (courtesy of moi) as well as a presentation by the authors of Feng Shui Love, a new book that tells us how to keep the “love corners” in our lives uncluttered. Bring a friend! Bring a date! Bring your neighborhood! (FYI, while the event is geared towards ladies, men are certainly welcome.)

Our Business of the Month for August is Mary Kay cosmetics and Nichole Frise is leading the charge. About 40% of each sale will come back to CJSTUF so now is a great time to get pampered, stock up on some of your favorite products, or even get a head start on your holiday shopping. You can get more information about how to order on the Business of the Month section of our website. Nichole has scheduled a pampering party on August 12th so make plans to attend!

Nichole will also take Mary Kay orders at the Rompy’s Summer Concert featuring VINX! on August 19th. A huge thank you to our sponsors, including:

Atlee Chiropractic Center
Jade Enterprises
C&F Bank
Michelle Donachy Photography
Stroller Strides of Richmond
Renovation Resources
Clearsight Ultrasound
The Caboose of Ashland
Battlefield Auto Service Center


Each sponsor will have a table distributing information and/or selling merchandise to raise funds for CJSTUF. The concert is FREE but we will be selling CJSTUF t-shirts and decals. We will also have kids activities, opportunities to donate blood to VA Blood Services, firetrucks and ambulances for the kids to check out (courtesy of the Hanover Fire and Rescue) and tons of other fun stuff. It will all take place in the Stonewall Square parking lot (home of Romp n’ Roll Mechanicsville) on Thursday, August 19th, 5:30-7:30 PM.

Very soon, Roger and I will be purchasing our airline tickets to Chicago for the Chicago Marathon on 10/10/10! As football season approaches, don’t forget to take a pledge form (downloadable from our Double Marathon page on the CJSTUF website) to all your tailgate parties and football watching gatherings.

I think that the VT crew is leading the charge but there are plenty of UM folks who won’t stand for Roger to wear the Maroon and Orange (even though he would look cute in a turkey suit)! Furthermore, I know some Cavaliers who don’t take too kindly to Hokie colors either. Roger’s goal is to raise $10,000 with these two marathons. Let’s make it happen!

More blogging…because there is more news!

You don’t often get two blog posts in 24 hours but there is definitely much to report.

First of all, I hope everyone who was interested in attending the Stella & Dot Trunk Show got the notice that it has been rescheduled for NEXT Thursday, 7/22. We hope you can make it. As before, online orders will also be accepted (go to the link above for more details).

Secondly, for those of you who haven’t heard it through the Grapevine, I am starting a new job on Monday. I was recently hired by The Faison School for Autism to work about 4 days a week as a speech language pathologist. Yes, I am excited to work for one of the best programs for Autism in the Richmond area. It seems that they are excited to have me as well. It’s definitely bittersweet as the job has been necessitated by current economic issues at romp n’ roll. The summer has just been way too slow and we are still catching up from expenses brought on by the move.

I will still be teaching at Romp n’ Roll a few days a week (Wednesdays and weekends) as well as continuing my regular administrative duties with the business but a lot of work will now fall to Roger and the rest of our excellent team. I am confident that our level of quality will remain stellar. Not so sure how I will balance Romp n’ Roll, CJSTUF, AND the new job but I am learning to be a better delegater.

We do have some exciting CJSTUF events on the horizon. Mark your calendars for August 4th. We will be the benificiaries of Wine Down Wednesday at the Wine Loft in Short Pump. This is a super fun event and a great “girls night out” opportunity. I went to last night’s event (benefitting Hugs & Kisses) and it was so much fun! The $5 admission goes straight to CJSTUF. In addition, they will be selling $1 raffle tickets for great prizes (all the raffle money goes to CJSTUF as well). I think we’ll probably have some CJSTUF swag available plus some romp n’ roll goodies. Lots of other prizes as well. There is a cash bar for great wine, free appetizers, and a cozy but elegant atmosphere. I will remind everyone about the date later in the month but definitely plan to attend and bring a friend. I will be speaking briefly about the Foundation but it’s mainly a great social time and a good opportunity for networking.
I guess that will do for now. Talk to y’all more soon!

Ready For A Novel

Oh, let’s, shall we?

I have an afternoon where I don’t have to run somewhere or work, I’m not exhausted, and there is much to write. Sit back.

First order of business, answering the running question: “How are you doing?” Both Rachel and I have been alternating between completely sucking to not sucking quite so much with the rare good day here and there. We’ve been under a great deal of stress with the Romp n’ Roll move to Mechanicsville, facing some serious financial challenges, and now actually thinking what we’re going to do for Charlotte’s Birthday (yep, July 9 is less than a month away). And somewhere in there Father’s Day looms which really hasn’t bothered me that much yet. (I’m always going to be a father and I feel pretty honored to have been Charlotte’s daddy. I don’t think I will let it get me down too much. At least no more than I already am.)

So we’re not so good these days. As usual, we keep ourselves busy and the kids of Romp n’ Roll really help us cope but at best we’re treading water.

It’s not all gloom and doom. Only mostly.

I’ll start with the business. As most of you know, we’ve been in a really bad recession the last few years and we’re into year three of owning Romp n’ Roll. We signed the papers on Nov 30, 2007 and the experts tell us the recession started in December. So we’ve been pretty much hemorrhaging money ever since. We’ve been fortunate in that we had a cushion to hold us for a while, a banker and franchisor genuinely interested in keeping us afloat, members very dedicated to the Romp n’ Roll idea, and very supportive families.

Then Charlotte was diagnosed and a deep layer of “awful” was added to our lives; the 50,000 ton boulder if you will. We had to take time off away from the business to attend to Charlotte and, although our staff was amazing as always, we weren’t there and it didn’t help. The recession kept going and it seemed people were waiting to register for classes until they heard whether or not we were going to keep the store.

Once we made it very clear we were keeping it, things actually started to improve. We started the year 2010 with a very good first quarter and with the recession seeming to ease just a little, it looked like we were finally on the way to getting a handle on things.

Then we announced the move from Virginia Center Marketplace to Mechanicsville.

The faucet simply shut off. Our rent at VCM was very high and we couldn’t continue to pay that and have any hope of staying in business. We found the space at Stonewall Square and the owners bent over backwards to accommodate us. Rent is lower, over half of our customers are from this area, the parking lot is vastly superior for our needs…I mean, how could we refuse?

So we didn’t, but we had no idea it would put many people in a summer planning holding pattern. It also didn’t help that the build-out cost almost twice as much as everyone assured us it would. The second quarter is going to end up looking very bad on paper. When we look back on it in a year or so, if we last that long, we’ll shudder. In 5 years, we’ll laugh nervously.

We opened the new Mechanicsville store on May 17th and it is beautiful. Everyone who worked in the new store really did great jobs. But boy, did things start out very slow. All the predictions of people banging down the door and full classes just as soon as we opened to doors never materialized. We have our core of loyal fans but we weren’t getting the word out like we wanted to new families. Turns out we weren’t just imagining it. It seems the postcard campaign for which we paid a lot of money went astray. Way astray. Like Virginia Beach astray. They were supposed to go to nearby homes. At least they re-sent them out to the correct zip codes but not until we went two full weeks wondering why no one was responding to our postcards (which usually get at least SOME response).

So that brings us to recent events, most of which are actually very positive. We have recently set up a Romp n’ Roll To Go type program at the American Family Fitness right across the street where parents can drop off their children while they work out. Last Tuesday I went in as an experiment and we had 30 kids. 26 on Wednesday. Hopefully we can keep it growing. That will be a very welcome and urgently needed financial shot in the arm.

We’re also developing relationships with merchants all around the area including Firehouse Subs, Primo’s Pizza, Battlefield [Auto] Service Center, Batteries Plus, CiCi’s Pizza, Ruby’s Nails and Spa, and there are others pending. I can’t believe how open everyone out here is to partnering. Over at VCM, it was always like pulling teeth to even get people to talk to you. Chick-fil-a was an exception and will always be a Romp n’ Roll-Mechanicsville partner. (By the way, the new spicy chicken sandwich is very good!)

We have several local preschools and daycares taking advantage of Rompy’s Monday Funhouse for field trips.

I’ve recently been asked to bring an RnR2Go type program out to a private kids party in August which should be very fun.

Our Grand Opening/Open House (pt. 1) was yesterday. It was very well attended and there were many faces I had never seen before. There were Hanover County Firefighters there with their trucks, “Big” Rompy playing with his friends, and arts & crafts for everyone. We didn’t do quite as many registrations as we had hoped but the Birthday Bash bookings are really starting to improve. We have the second part of the Open House today from 3:30-6:00pm and I’ll bet there will be more of the same, including another appearance by “Big” Rompy.

Although Romp n’ Roll is still struggling financially, things do seem to be improving ever so slowly. We just need to survive the backside of this storm. The classes are still completely awesome and I have no qualms about flaunting our Best Of Richmond Awards from the last year. We have the best staff, the best customers, and the best “product” around, bar none. If you disagree, let me know so we can fix whatever you don’t like. That’s definitely one thing we have not compromised. There’s no use. We’re pretty sure that as the word gets out even more, we’ll be doing very well. Just gotta’ survive the short-term. That’s kind of become our mantra. We are thinking of seeking out a partner to help with the short-term issues. Anyone interested?

To try to improve our income stream, I’ve had to take a part-time job in the finance dept. of King’s Dominion. Basically, I count money. I’ve worked there before and it was one of my favorite jobs I’ve ever had. The hours are flexible and convenient, I get work with very interesting (wacky?) people, and although it doesn’t pay a ton, it’s the best paying dept in the park. Oh, and Charlotte’s Devon is one of my bosses! Kinda’ cool. Mister Joe (Mattys), Devon’s dad, works in the park as well so there are good connections there.

One surreal thing is how money ceases to mean much when you’re staring at piles of it all night. One co-worker dropped a strapped wad of cash on the floor and I nonchalantly picked it up for her. It was a banded bunch of $100’s. It seemed so strange to me that I was holding $10,000 in cash in my hand like it was pack of gum or something.

We work in the evening, sometimes into the wee hours of the morning, and the other night, I had a “moment” because of my music. I was listening to my iPod on shuffle and “A New Star In Heaven” by Johnatha Brooke came on. I’m sitting there, counting money, and trying to keep it together. A little while later, some “CJ Babble” came on. That’s stuff I recorded when Charlotte would come into the radio station with me. I so glad I did that because those almost never fail to make me smile and this time in Cash Control was no exception. You’d think THAT would set me off but no. It kind of offset the Johnatha Brook tune.

This new job also helps make me very aware of the petty little things people complain about. I seem to still have very little patience with those who do. I want to say, “REALLY? THAT makes you mad? THAT’S what bothers you?!? Let me REALLY ruin your day…” Of course I very rarely do. I’m just going to do what I’m there for and try not to screw up too much if I can help it.

As far as CJSTUF goes, the Foundation is jammin’. (Would that our personal finances were going so well.) Most of you know we sent out the first ten checks to families and will be sending out the next batch in the fall. We keep having meetings, making decisions, planning events, and waiting for word from the IRS about our non-profit status. We have a ton of folks wanting to help us and there’s no shortage of ideas for FUN-raisers and such.

The biggest and most immediate thing is the Double Marathon Challenge. We haven’t heard yet from anyone about the U of Miami and VA Tech pledge war so it’s anyone’s guess as to what colors I’ll be wearing for the Richmond Marathon. Feel free to drop us a line and let us know any amounts you have at your fingertips. Don’t forget my overall goal is $10,000. On measly little wad of strapped $100s. Pledge forms are available on the website.

If you want to train with me, I’m going to be starting at 6:00am in front of the Ashland Library near Charlotte’s Brick on Tuesdays, Thursdays, and Saturdays. I’ll be going small distances at first but growing as time goes by.

I started official training last Saturday and I’ve been doing pretty well I think. I’ve enlisted the help of a real trainer to help keep me on track. Her name is Rachel Pustilnik and she runs her own franchise of Stroller Strides here in Richmond. She has set me up with a running schedule and a place to get my feet/stride analyzed. I need to get over there eventually. Not sure when. I’m trying to get AISICS to sponsor me but that’s a fat chance kind of thing.

Dr. Anna has also agreed to be TEAM CJ’s official chiropractor. Now I need an official ice cream sponsor, Lexus, BMW, or Audi sponsor, and super nice men’s clothing store sponsor. Still looking for those. 

When I started training for real last Saturday, I felt pretty good. The weather was so perfect on Monday, I just had to run even though it wasn’t on my schedule, Tuesday was the same again and I almost let myself start thinking about life being somewhat “normal” again. I’ve been running pretty fast (for me) and with little difficulty. Wednesday and Thursday brought me back down to the “new normal.” Nothing new. Just the same old extreme stress coming back out to bite us in the ass. Thursday’s run was still pretty good though.

I’m taking a grant writing class at VCU at the moment and hopefully, I’ll be able to do that halfway well by the time our non-profit status comes through.

CJ’s Butterfly Bush is growing like crazy in spite of the bugs trying to eat it, other plants trying to crowd it out, and the heat trying to bake it. Check it out on its own Facebook site.

We have had several friends in the cancer world either pass away recently or, on the flip side, finish treatment and start their own dealing of whatever “normal” means to them. Reese is doing great as are Abbie, Lizzie, and the mountain of other names on the list. Others are still mourning their loved ones. “Zachary Zoogle” passed away on June 10th, 2009 and his family was dealing with that anniversary. All the stories are making me sad at the moment. Or more accurately, making that constant ache come up to the surface more often. I can’t not see/hear them. I’m drawn to them in fact. I sometimes wonder if I’m somehow addicted to that feeling.

So that’s kind of how we are. I’d love it if we were a bit more stable. I’ll take what I can get and try to do better.

Mood Swings and The Double Marathon Challenge

Roger here,

Our trip to Colorado was really wonderful and I can’t tell you how great it was to see my beautiful niece, Cerisa, walking down the aisle all grownup and stuff. She’s a married woman now. Congrats C-Weed! It was an honor to sing at your wedding.

There were some very bittersweet parts, though for obvious reasons. CJ should have been there.

Coming back to Virginia was actually kind of tough on me for some reason and I’m still not completely over it. I’ve had quite a few “moments” the past few days and it’s been harder than usual to think about Charlotte and what she had to go through. Tuesday was the worst day I’ve had in a long while. It all started when I was looking for a template of the CJSTUF letterhead and came across the letter I wrote to Disney. It was all downhill from there. I was loosing it at the drop of a hat and really feeling a distinct lack of self control. I had to sit in my car in front of Romp n’ Roll for a few minutes and let it all out of my system before going in (probably feeling a little sorry for myself, I must confess).

The strange thing is, the moment I walked into Romp n’ Roll, I started feeling better. Rachel was teaching my Babies! class because I had to come in late and it was so nice to see everyone laughing and playing. All the positive energy really bolstered me.

Another thing that doesn’t help is that it popped into my head how we used to gauge Charlotte’s pain level. The scale of 1-10 and the happy-to-sad face graph really didn’t work for her but she would respond pretty accurately when we asked her if her pain level was “a little” (thumb and forefinger apart), “a lot” (hands spread several inches apart), or “alotalot” (hands spread wide apart). I so hate the fact that we had to use that system. Any system at all for that matter.

I’ve had a few more ups and downs since then but nothing like Tuesday. I’m sure it’s just my every six month meltdown that comes about once a month or so now. I’m sure getting back into running will help that.

Hey I think I smell a segue!

Some of you may have heard about my “Double Marathon Challenge” (or “Double Marathon Madness” as Rachel calls it) where I will be running the Chicago Marathon in October and then the Richmond Marathon in November all to raise funds for CJSTUF. Well, training begins on Saturday! How would YOU like to be involved?

We’ll need TEAM CJ members for spirit groups along the routes of both marathons and if anyone else wants to run in any of the races (there’s also the McDonalds 1/2 Marathon, HCAVA 8K, and a Kids Fun Run in Richmond), let us know. Anyone raising $1,000 or more will get registration fees reimbursed!

I’m tweeking the pledge form to include a few extra choices. (More on that later but think “VT vs UM!”)

It’s a three day a week program that worked very well for me a couple of Richmond Marathons ago. Anyone is invited to come running with me. I will be running every Tuesday, Thursday, and Saturday morning bright and early Starting at 7am. Short runs to start off adding mileage as time goes by.

If anyone isn’t part of an official training team, feel free to come out and mosey a while with me. I might be going slow but at least I’ll be going.

I would love for some Richmonders to come with us up to Chicago and/or Chicagoans to come down to Richmond for the respective races. It’ll be a heck of a party in both cities!

Did I mention my goal is $10,000? I really have no fear that we won’t reach it.

Here’s a great idea that I’m shamelessly stealing: PLEDGEWARS! I think most of you know that Rachel and I are both graduates of the University of Miami and when I’m not bleeding orange and blue for the Denver Broncos or green and yellow for the Packers, I’m mixing them and bleeding orange and green for the “U.” For some strange reason, I have run into a certain amount of resistance from people in this part of the country; especially from those turkeys in Blacksburg. Well, to be fair, I want to give all you Virginia Tech fans the chance to show me who’s boss, I’m throwing down the gauntlet. If VT fans raise more money than UM fans then during the Richmond Marathon, I will wear either a turkey outfit or neck-to-toe, including socks and underwear, Virginia Tech garb (I shudder at the thought!). The hat will be a pink or purple Charlotte hat no matter which side wins.

C’mon Canes! You must save me from this fate. We will be keeping a running tally going and we’ll have to see what colors I wear on November 13th! Stay tuned.

Here’s a GREAT memory we have of Charlotte: When we would say, “We’ve got some Canes over here,” we taught Charlotte to say “Whoosh! Whoosh!” If that’s not inspiration for you, I don’t know what is.

Last but not least, Coco’s Chocolate Dream Chocolatiers, the company letting us use “Chocolate Makes Everything Better,” has begun making butterfly chocolates! I don’t think I ever told her about the butterfly connection. Please go to her website and thank them or just say hi from a CJ fan. If anyone wants to do a “Chocolate Stand” as a FUN-raiser, let me know and we’ll get it set up.

Thanks for letting me rant. I’ll keep searching.

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.