The most stress-full-est week ever

Wow! I can't believe it's been so long since our last blog post. At the same time, we've been a little busy. I will try to update everyone.

First of all, a big thanks to the Mechanicsville Moms for the Used Book Sale last week. We raised almost $300 for CJSTUF which is not bad for a bunch of books priced at $.50 and $1 apiece. The remaining books were donated to the Ashland Library for their annual book sale at the Hanover Arts and Activities Center (July 4th....mark your calendars!).

Secondly, the Cow Drop raised a little over $1000 for CJSTUF. That will help two families! How great! I didn't win the Disney vacation or the Romp n' Roll birthday party (oh, wait...) but Roger had a great time at the event. Huge kudos to Pam and Sharon, the Virginia Center Chick-Fil-A marketing gurus who help to make this event a success year after year. Much thanks to them for including CJSTUF in their in-store sales.

In the middle of all these foundation events, we have been armpit deep in moving the business. Anyone who has ever built a house knows the stress that comes with construction. Take that and magnify it a few 1000 times when you move a business. Not only are you trying to get everything up and running in a timely manner, but you still have a business to run, vendors to pay, and a staff to manage. We're getting there but this is not my favorite thing in the world. I have HUGE thanks to offer to:

My parents: Not only did they help with painting and moving but they always had dinner (or lunch) ready for me and for Roger when we came home each night. Plus they're always good for a laugh or two!

Our Romp n' Roll staff: They roll with the punches and have displayed their many talents in this process including painting, shop-vacing, and packing.

Our many helpers and volunteers: Along with our paid staff, we have recruited a few volunteers to help with loaning us LARGE vehicles and painting and hauling and unbolting shelves and hanging bulletin boards and....

My husband: Roger is a pretty handy guy and he is doing a lot of the "grunt work" these days. I, in fact, have felt pretty useless lately and he is just a bundle of positive energy. I really appreciate all his hard work.

So, yes, this past weekend was Mother's Day. I pretty much tried to ignore it. At the same time, I felt extremely loved and supported by many friends and family. I think between keeping myself busy and the many positive notes, small gifts, and other gestures of kindness that were nudged my way, I made it through. The extra stress in my life certainly doesn't seem to help with my wanting to cry (or scream) at the drop of a hat. Today we had to take the cat to the vet (more on that in a moment) and as I was waiting to pick up Mr. Tigger, this other woman comes out to the lobby to pay her bill and makes an off-hand comment about "having to sacrifice her first born child" to pay the vet bills. I almost let loose with a snarky comment like, "You think vet bills are bad...try REALLY sacrificing your first born child to brain cancer." but I held my tongue. I know the woman meant nothing by the comment. In another age, I probably have made comments in the same vein and never thought about the actual words.

So why, you might ask, did I have to get Tigger from the vet? Well, Roger came home earlier today to get a needed tool and grab some lunch and found Tigger very injured. Apparently, he had tried to climb a fence (or something like that) and seriously hurt his foot. The tendon was actually exposed! Roger dropped everything and rushed him over to the vet (did I mention how wonderful he is?) and they took him in for surgery. Now he's wearing a funny cat collar and has to stay isolated in a room for 10-14 days. Oh, and we get to give him kitty meds. Goodie. The ladies at the vet's office said he was a really good boy and when I picked him up, he was meowing at about 100 decibels. He's resting in the spare bedroom right now, looking awfully pitiful.

In Foundation news, we have received our applications for Financial Assistance Grants. We do have at least 10. We will review them at the board meeting next week and we will be very excited to award the $500 grants to our recipients in early June. More on that to come. Roger is talking with a local business and we may have some great PR events lined up soon.

Also, we are slightly further along in the process of getting our nonprofit status. Still nothing official but we're one step closer. AND I think that within the next month (or two) we should have some SWEET CJSTUF t-shirts and other merchandise available for purchase. Stay tuned.

So, in closing, please keep the positive vibes flowing for our move. We are aiming to be open by Monday with a ribbon cutting at NOON on 5/17. Come on out if you're around. You can always become a fan of our new location on Facebook for the latest updates and moving pics. If you haven't heard, we are dedicating our moving week (this week) to ReeseStrong. 10% of any birthday bookings or summer class/camp bookings through Saturday will go back to this Mechanicsville based organization that is very dear to our hearts. SOOOO...if you live in Mechanicsville or know anyone that does, check out our Romp n' Roll website and call us to register today (shameless plug, I know, but it's for a good cause!).

Where does the time go???

With everything Roger and I have going on, time for blogging has been difficult lately. Being busy doesn't even begin to explain it. Things are definitely gearing up with Romp n' Roll's move to Mechanicsville. So far, so good. Everything seems to be running on schedule and in line with only a few minor glitches here and there (all manageable). It's still a LOT of work. I don't even want to imagine what it would be like if we didn't have things moving smoothly.

For those who haven't heard, we will be closing the Virginia Center location on May 9th and using that next week to move our equipment and any remaining furniture over to the new site. Those of you who offered trucks: that's when we'll need 'em. We'll be contacting you. We are slated to open for business in the new location on May 17th. Mark you calendars and cross your fingers.

The CJSTUF Benefit Concert at RMC was last night. I didn't make it until near the end. It was kind of a small crowd BUT they raised over $450 for us. Thanks to Mu Phi Epsilon and all the musicians for their work on this endeavor.

Today and tomorrow is the Kid Stuff Yard Sale at St. Thomas Episcopal Church. You can get more info about it in the last blog post but if you're in the market for any maternity, baby, or kid stuff, head over there tomorrow morning. Proceeds benefit many local charities, including CJSTUF.

Slightly further down the horizon is the Moms Club Used Book Sale on May 6th. This will be at Romp n' Roll (right before we move!) from 3-7 PM. If you're a book lover like I am, you will want to check it out. They will have books for all ages plus some videos and other media.

Not long after that is the Chick-Fil-A Cow Drop. Have you bought your tickets yet? If not, you can stop by Chick-Fil-A at Virginia Center any time. You do NOT have to be present at the Cow Drop event on May 8th to claim your prize, but if you DO come out to the Hanover Airport, you're in for a treat. The event is always family friendly and fun. There is more information about the Cow Drop on our website.

Speaking of which....if you haven't heard or seen, we have a newly remodeled and relaunched website for the foundation. Included on the site is the new video, updated information about our fundraisers and events, as well as the applications for our financial assistance grants. I think we've worked out all the bugs and broken links, but if you find anything amiss, just drop me or Roger a line.

If you know of any families served by VCU Children's Medical Center (MCV), please let them know that our applications for the first round of grants are due (postmarked by) May 1st. We want to give away $5000 by June 1st so spread the word. The application process is very simple (only two pages and no financial information is required).

Future developments with the website will include the CJSTUF merchandise area (CJ STUFF...), ways to hook into our volunteer database, and more. Stay tuned! Big thanks to Jay and Ruth Campbell at Jade Enterprises for all their support in hosting our server and developing the website.

In family news, my parents are coming for a 3-week visit starting next week. We are very excited to see them and in true fashion, we will put them to work straight away on long-delayed home projects and help with the romp n' roll move. We never cease to appreciate their generosity and their talents! Hopefully they will get to relax a little too.

Before we know it, Roger and I will be heading out to Denver for his niece Cerissa's wedding at the end of May. We are very excited for her and Patrick although Roger has a very hard time realizing that his niece is all grown up. This might be our only "vacation" for a while so we are definitely looking forward to it from that perspective as well.

Ok, I'll end this now because...guess what? I've got more work to do!

Happy Weekend, everyone.

Insurance Hilarity...And a day tinged with sadness.

Ok, so you may think from the title that I am going to wax poetic again about health insurance.

NO!

The only thing I have to say about the health insurance front is that I think we are (mostly) done with medical bills from Charlotte. I did get one last bill from MCV for some leftover doctors visits. I had been round and round with Humana and MCV and I think they billed it incorrectly. Supposedly it was fixed but then I got another bill....

The upshot of all of this is...I will pay the bleepin' bill. In the grand perspective of things, it's nothing. Charlotte racked up over $700,000 (yes, those zeroes are correct!) in medical expenses last year and I think we paid for less than 10% of that out of pocket so I'm not going to nickel and dime the insurance company any more.

As a small aside, Roger and I have been most impressed by those in the medical community who have followed our story and contacted us in the last few weeks "just to see how we are doing". We have received cards and phone calls from my OB-Gyn, Charlotte's pediatrician (Dr. Weber who made the initial diagnosis), many of the staff from MCV including those who never even worked directly with us, people from our health insurance....the list goes on. It just feels good to be more than a number in their eyes. I know from working in health care that sometimes you have to do your job with a certain lack of emotion. If you get too caught up in it, you will go crazy or burn out (and I never even worked in a field with life or death situations like emergent medicine or oncology). That being said, it is so touching to know that these people didn't just look at Charlotte (and us) as just another cancer family. Or, hopefully, we are just another cancer family and this is how they treat everyone. These people deserve all the support, respect, and praise we can give them. It's a tough job!

Ok, I'm getting distracted. Back to the insurance story. I had to make some phone calls about a general liability policy for the Foundation. During one of my calls, I spoke with the man who answered the phone (the agent) and told him what I was looking for. He started asking very probing questions about the Foundation. What is it for? Who will it help? Do you and/or the members of your Board have any experience with nonprofit organziations (Um, yes sir. A combination of at least 50 years experience just in nonprofits alone. Not to mention the years of experience in organizational management and general quality business practices.)

The interrogation continued: What do you do for a living? What is your background? What does your husband do for a living? What is his background?

Are you getting the picture?

Then the questions got a little more inane. Actually, they weren't even questions but statements:

Him: Well, you know, it takes a lot of money to start a foundation like that.
Me: Um, yes sir. I am aware of that. It's all part of the plan.

And then it got interesting...

Him: So how did you decide to start this Foundation?
Me: Well, my daughter was very sick last year and when she passed away we decided to start a Foundation in her honor.
Him: Your daughter died?
Me: Yes, sir.
Him: That's TERRIBLE!
Me: Yes, sir.
Him: No, I mean, when a child dies that's just about the worst thing in the world!
Me: Yes, I can pretty much agree with you there.
Him: How old was she?
Me: She was four years old.
Him: Are you kidding me? That's just terrible. Horrible. That's just so sad.
Me: [Truly at a loss for words. I mean, really. Am I supposed to be comforting HIM???] Um, yes sir.

Fortunately, the conversation kind of shifted at this point. We talked coverage needs and policy parameters. All that objective stuff. He got a few more points of information from me, including my date of birth and Roger's date of birth just in case the underwriter needed it. At this point he says. Hmmm....you sound a lot younger on the phone. I suppose I will take that as a compliment. I guess I sounded like a young kid just starting a Foundation "for kicks and giggles" until he realized how old I really was.

So there's your amusement for the day.

I need some amusement. As I mentioned before, the emotions have been riding high lately. It's very difficult to explain because I'm obviously not incapacitated by grief. It's like a low-riding hum. I just cry a lot. At silly, small things. I miss her. I miss going to the store and filling my cart with Macaroli and chocolate milk and anything princessy. I go to the Hallmark store and see cards that say "Happy Birthday Mom" and it makes me cry. And it's not even my birthday! I just realize that I won't get one of those. At least for a while. That's when the emptiness hits. Nobody bother me in May, please. I will be a MESS. I can already tell.

Fortunately, I have wonderful friends who take very good care of me. Well, us. People still bring us meals every once in a while. I've gone out a few times for drinks with friends. I get care packages in the mail (Amy, you're the BEST!). It all helps in small ways. It doesn't take away the sadness but it helps me cope...and sometimes I can forget.

Changing subjects, I just got a freelance gig with VOPA: The Virginia Office For Protection and Advocacy. Someone in their office got my name from the presentation that I did in Lynchburg last fall on Augmentative Communication and they have brought me in as an EXPERT to consult with them on some issues with adults in state facilities. Yes, the word EXPERT is actually listed as my title in the contract. I find that highly amusing. The project will be about 3 months with meetings, site visits, and some collaborative training so I think it will be interesting as well as a good way for me to keep my professional chops up.

The most interesting part about this to me is that I met with them WAY back in November. It was right after Charlotte's condition was deemed terminal. I went to the meeting not knowing where it would go and I never told them about Charlotte. They asked for a proposal and we traded emails back and forth after the meeting. I let them know that I would be away for a few weeks for vacation and then, of course, the holidays happened. When I talked with Roger about it, he advised me to just take it one step at a time. If they wanted me to do something and I wasn't able, I could just tell them at that point. So I didn't say anything. The holidays came and went. I didn't hear anything and by the end of January I just assumed that they had decided to go in another direction. Sure enough, I got a call last week from their office saying that they apologized for the delay but they were still interested and wanted me to come in to review and sign the contract. So whaddaya know?

My final topic for the day (you're getting a nice novella today, aren't you?) revolves around fundraisers. Some of you have contacted us about using your business as a fundraiser for CJSTUF (Usborne books, Tupperware, Pampered Chef, etc.). I know that some of these are already in the works but I think I may have lost a few emails.

First of all, if you contacted me or Roger and we never got back to you, please contact us again.

Our friend Erin is going to do an Usborne books sale at Romp n' Roll on March 11th. More details to follow.

Also, our friend Susan Ferguson is hosting a Pampered Chef party at her house on March 16th with Jessica Pittman as the consultant. Jessica is a Romp n' Roll mom and also works under Marie Snyder who has always been my Pampered Chef consultant. (PS Happy Birthday Marie!).

Finally, one of the Moms Clubs will be hosting the Book Sale at Romp n' Roll again on May 6th. They did a used book sale in December to benefit CJSTUF while we were at Disney. I think this one will be even bigger and better!

All of these events will benefit CJSTUF.

We will get more details out to everyone once I have official details like times, etc. We will add them to the events calendar. Again, if you have an business or organization that would like to raise funds for us, please go for it and let us know. We will be happy to help promote it in any way that we can. Please also know that the Foundation isn't going anywhere. If you need to wait to hold a fundraiser until we reach nonprofit status (goal: by July!), that's ok. We will always have the need for fundraisers and I don't want people to get burned out on asking for money in CJSTUF's name in the first six months or year. It's like a marathon...you 'gotta pace yourself.

Ok, the carpal tunnel is kickin' in so I am really going to wrap this up.
Spring is coming. I can feel it in the air. Let's just get through the rest of February!

Days on the Beach

As usual, the last few days have had their ups and downs. Mostly ups.

Grandpa (my dad) got in Tuesday and the three us met Rachel’s godmother, Mary Ann, and Bob and Phoebe Smith at a local Italian restaurant for dinner (Bob is the pastor who married us). Granny kept watch over CJ. The food was amazing and adult conversation was very nice to have.In the economically devastated area known as Daytona Beach, Florida, there are some very bright lights in the darkness. Aurelia’s is one of them. It’s back in the original location after forays elsewhere in the area and Aurelia (The owner), who is energetic and vibrant in spite of her age, still cooks all the food after all these years and comes around to all the tables to visit if she can.

We had a couple of “receptions” (for want of a better word) in the event room at the Caribbean (where we’re staying) on Wednesday evening and Thursday afternoon. People were invited to come by with books to read to Charlotte and nosh on goodies (mostly homemade by Granny). There were also custom made pink and purple M&Ms with Charlotte’s face printed on some as well as the phrases, “CJ ROCKS” and “THUMBS UP.”On Wednesday, I wheeled CJ, all dressed up in her brand new Cinderella outfit and looking FABULOUS!, to a spot next to some chairs with some good light overhead and left everyone else to pay attention to her. They did. Throughout the evening, many, many books were read to her and Charlotte loved it. There was this one duo of teenage girls who looked like typical teenage girls, wishing they were anywhere but there. I’m not sure of the back story but there was this discernable thawing of the façade the moment they met CJ. Charlotte was doing her typical thing and was telling everyone about Dora or Frosty or whatever was on her mind at the moment and charming the heck out of everyone. She started petering out right at the prescribed closing time and we headed back downstairs.Thursday was sort of more of the same except that CJ’s completely screwed up sleep schedule had her up at 3:30am which means she fell asleep sometime after 1pm. The second reception was supposed to start at 2. I let her sleep until about 2:15, got her dressed in her other, non-winged Tinkerbell dress, and we headed up.We made our fashionably late entrance and I parked her in the same place. I was worried she wouldn’t enjoy herself this time because she was still groggy from her nap but within a half hour, she was back in form.During both events, there were several people from Rachel’s far distant past (former teachers, family friends, etc…) who brought some wonderful books to read. A particularly engaging rendition of Five Little Monkeys Jumping On The Bed was done by Karen Ricks. Charlotte was all into it, finishing every line and then telling everyone the finer points of monkeys and their activities.

After that, the family retired to our unit and had some dinner. CJ and Tricia ended up watching videos in CJ’s bed and eventually, Rachel and I left Grandpa in charge and went for a walk. It was chilly and very windy on the beach and before long my ears started hurting. I felt the need for hot tea so we ended up at the local Dennys which was actually open. Seems silly but with all the vacant property around, there doesn’t seem much reason to keep stores open past 9pm, even if Dennys is supposed to be 24hr.Over tea and “pancake puppies” (very yummy, I highly recommend them!), Rachel and I had another one of THOSE talks. A “keepin’ it together” talk. We both always get a lot out of them and end up liking each other again afterwards.

When we got back, Charlotte was still awake and Grandpa was snuggling with her on the bed. We let him stay there and got a good amount of little stuff done (including getting a lot of photos onto the Facebook site). CJ ended up staying awake until 4:00 in the morning! We sent my dad to bed a bit after midnight and Mommy and I took our shifts. It’s now 9:20am as I write and CJ is still asleep. Her sleep schedule is sooooo messed up right now but it kind of doesn’t matter as long as the team effort holds out.

That’s one of the things that continually stays with me and I know I’ve said it before. We have such a great network and have rarely been left without help when we asked for it. What does a single parent do when this kind of thing happens? How about families with inadequate or no insurance? It boggles my mind. I’m really hoping we can make a difference with CJSTUF (or even with one of the many other wonderful organizations out there helping people out). I’m kind of counting on it.

A shout out to Annette who is taking some very well deserved time off on a Disney adventure of her own! A second shout-out to Ruth Campbell and the other Mechanicsville Moms. The Used Book Sale for CJSTUF raised over $350 last night. Word has it they are planning an encore in March 2010.

I think CJ is stirring so we will close this post...

So much to say...

So much to say! First of all, I have a feeling Roger is going to add his own two-cents regarding the last 24 hours or so. Just be ready for some double-postings.

Those of you who have been on Facebook, you've seen some of our pictures from the Baltimore trip. I will post a few here as well.

Sunday started EARLY. She woke up at 1:30 (AM!) and Roger got up with her. We tried to get it in gear for the Baltimore trip and I think we did ok considering our tired-ness. We made it to the Aquarium by 11 or so. It was amazing! There were so many different kinds of animals and lots of creatures to see. We also had lunch with a great view of the Harbor. I really enjoyed the jellyfish exhibit.

I need to detour on this post for a moment and just give a shout-out to the family who made this whole weekend possible. When I was growing up, we were close friends with the Hansen family. They owned a little mom n' pop motel (The Copacabana) on Daytona Beach and our families carpooled and did many activities together. I have fond memories of swimming at their hotel pool and playing with the girls (Summer and April). They were one of the stabilizing forces in my life after my dad passed away and we have always been grateful for their kindness.

Anyway, after high school graduation, I kind of lost touch with the girls but my mom has remained in contact with their mom (BJ). The motel has since been sold and the entire family is scattered far and wide across the country but we reconnected on Facebook right before Charlotte's diagnosis. Throughout this process, they have been one of the many "forces of good" helping us out. From across the miles, they have sent gift cards, meals, notes of encouragement, and (last but not least) set up this Baltimore adventure for us. Thanks to their connections, our tickets to the football game, hotel, and passes to the aquarium and other local attractions were all provided to us free of charge! It was amazing.

So back to the story...after the Aquarium, we headed over to the hotel. It was the Waterfront Marriott...right on the Harbor. We had a Hospitality Suite with full living room and kitchen on the 10th floor overlooking the Harbor. We also had a room with a King bed for us and another room with two beds for Devon and Patrick Mattys (our football guests!). I was only sad that we were able to enjoy the room for only a night.

We weren't there long when we met up with Devon and Patrick. Roger and Patrick headed off to the tailgating area and us "girls" followed along shortly.

After being up since 1:30 AM with only a light nap in the car, Charlotte finally petered out at about 5 PM...just in time for us to get to the stadium. That was ok because she slept until right before kickoff (almost 8:30). We all had a great time at the game. It was a PACKED stadium with crazy fans and lots of fun. Charlotte made it through the 3rd quarter and then we headed back to the hotel. Actually caught the last part of the game in our hotel room. When we got back to the room, we found a plate of cookies, milk, and a cute bear for CJ with a lovely note from the Marriott staff wishing us well. Very sweet!

Charlotte then stayed awake until 5 AM (!) with Roger and I taking turns with CJ duty. This morning we reversed the process and headed back to Richmond. We made it in 2.5 hours (not bad with just some traffic in N. VA and we stopped at Indulgence Salon in Ashland where Miss Heather and the rest of the staff spoiled us. First, they gave us a catered lunch along with some books and presents for the girl. There was a HUGE Frosty sign made by the kids at the Ashland Community Preschool with pink and purple handprints on it. Then, Charlotte got her nails and face painted while Roger and I got thirty minute massages and I got my hair washed and styled. It was a lovely day and the staff there were so generous and accomodating.

Then it was home (finally) where we have been making mad dashes to get all the last--minute stuff done before the trip. The limo will pick us up at 6:45 AM so I may not sleep much tonight but that's ok. I can wait till tomorrow to start vacation mode.

A few final notes before I sign off: 

1. The website is MOVING right along. It is going to be so great when it is done and I think it will be ready to launch before we get back from Florida. It will include a way to schedule our reading vigil for CJ so look for more info on that soon.

2. The Mechanicsville Moms are hosting a Used Book Sale for Charlotte at Romp n' Roll (Virginia Center) on December 10th from 3-7 PM. Please stop by to support these ladies.

3. Finally, Beth Boston held the craft sale a few weeks ago with all profits from Snowman craft sales going to Charlotte. She raised a nice chunk of change for us but she still has some "snowman soup" packets. These are very creative, very cute hot cocoa packets that make great gifts for teachers, friends, and family. Cute stocking stuffers! They are $2.50 for regular packs and $3 for sugar-free. These are local (Richmond area) sales only but if you are interested, please email her at bbunch05@gmail.com

Ok! I'll stop it now...I mean it! (Anybody want a peanut?)

HUGS, Rachel