Thanksgiving

It was not the best Thanksgiving on record but I can't complain too much.

First, let me back up to yesterday: we got Charlotte fitted for a larger stroller so we are now set for Disney and all our travels. In addition, all our travel documents and Make-A-Wish stuff arrived in the mail on Wednesday. We will have a limo picking us up at 6:45 AM on next Tuesday to whisk us off to the airport. We are already getting a tentative itinerary together for the friends and family who want to meet up with us while we are in Florida. I'm finally getting excited about the trip.

After Charlotte was fitted for the stroller, we actually managed to stop by Three Oaks Montessori to visit some of her friends. We needed to come by to sign the incorporation papers for CJSTUF (thanks and kudos to Kim for pulling all of this together in little or no time!) so Charlotte got to spend a little time with some old buddies. She was welcomed very warmly by the girls who knew her from her old school.

Later, we had some more visitors at home. Anja and Meredith came over for a playdate and finished watching Mary Poppins with Charlotte. They also shared a LOT of strawberries. Yum. Soon afterwards, her old teacher Ms. Christy (from the "Montessori House") came by for a very nice visit. She brought tons of books for Charlotte to borrow and read as well as a bottle of wine to share with me and Roger. We had a lovely evening socializing and Charlotte got to spend some very quality time with Christy.

My emotions have been all over the place the last few days. Mostly I'm just sad and the smallest thing can make it worse. Right now it's very difficult for me to be around other kids sometimes. I guess that's a good reason not to be back at work right now. I'll also see stuff on TV or in other places that will just spark something and then I'm a basket case (darn those St. Jude's Childrens Hospital commericals!). It is so bizarre to me to think that last year at this time, I would see something like that and think, "Oh, what a good cause." and now all I can think is, "That's MY kid!" It is truly strange to be on the receiving end of charities such as those and then see commercials or hear plugs for them in the mass media. You realize how important they are. The first time I realized it was back in March or April. I was at Costco and they were doing a fund drive fro the Children's Miracle Network. They did the standard plug, asking for a $1 donation to benefit the Children's Miracle Network at MCV. I normally do these things anyway but it was then that I realized: this benefits MY kid! I heard a plug today during the Macy's Parade for Ronald McDonald Children's Charities as well and it brought back all kinds of memories.

When I think of these things, I am reminded of that which I am truly grateful. It is a bittersweet Thanksgiving and I am pretty sure my mood won't change much by the end of the year. You might think it would be difficult to find a lot to be thankful for right now. I am grateful, though, for friends, family, and the extended family that we have built this year. Our network is wide and strong and it is the foundation on which I rest day in and day out. Without this network, I would be a blubbering fool hiding under the bed. I am grateful for the time that I have with my precious girl and I am grateful for my sweet husband who tolerates me and all my quirks.

The bulk of the day was very relaxing. We watched the Macy's parade and then Roger, Charlotte, Kolbey, and I went to Cracker Barrel for dinner. It was simple, inexpensive, and nobody had to cook or clean up. Everyone was happy. We came home and the boys and Charlotte watched footbal while I caught up on some paperwork and computer stuff. Charlotte had another marathon eating day. She took lots of laps around the house (with our encouragement and help) and, of course, read quite a few books.

Tomorrow I am actually going to work for a little bit. I'm leading a birthday party so wish me luck! This should be interesting.

Roger is currently downloading a lot of our old video of Charlotte into the computer for editing. I can't tell you how mixed my emotions are when I watch these old clips of her. She was so tiny! And it was easy to see from such an early age how smart she was...how much she just LOVED to learn. I think every other film clip has her reading or singing or jibber-jabbering in that sweet little voice. I'm glad that we have these memories.

Time for bed. Good luck to all you crazy shoppers out there! Take it easy.

Rachel

An Update

Charlotte sat on the couch and ate bon bons most of the day.

Not really.

She got to do a story time with her Montessori class via the Hopecam. That was very nice.

I went to Romp n' Roll to teach the Babies! preview class and it was very cool. There was also a Birthday Bash which was a total hoot!

Rachel sat on the couch and ate bon bons all day.

Not really. (She's dictating these things to me as she sits next to me)

She talked to insurance people trying to decipher whether or not the proton beam radiation procedure would be covered and where. Turns out MD Anderson IS in network but certain physicians (the important ones for us) are not. Shands in Gainesville, has a proton clinic in Jacksonville

(remember last time Rachel was dictating from behind/beside and I had to remove her spleen via her ear?!?!?!?)

So anyway, the Shands clinic in Jacksonville is in network as well. There are also hospitals in Boston, Indiana, and California. That's about all of that kind of news for now.

Rachel also went to the bank and deposited over $5000 into Charlotte's account! Thanks so much to everyone. The foundation plans are evolving ever so slowly but evolving they are.

She also got to get her toes done. Nice little distraction.

Aunt Phyllis and Meredith put up the special board next Cj's new table and that is looking very good. The rest of the house looks amazing under the cleaning and organizational skills of Phyllis.

Aunt Phyllis is an exceptionally intelligent and enlightened person. Imagine my horror when I turned around and she was actually watching, "What Not To Where!" Oh, the shame! :-) Oh well, I like "Primeval" so I guess I have no room to talk.

Obviously I'm rambling so I'll sign off and go clean my surgical instruments. (remember the spleen!)

Good Couple of Days

It's been a busy, productive and all around good couple of days.

The return trip home was easy and breezy. Another Houston Ground Angel (his name was Ty) shuttled us to the airport. He had his own interesting story and was quite the conversationalist on the quick trip to the airport.

Charlotte continued to get SO much attention during and after the flights. We had one good samaritan trade seats with us when we realized that our seats on the Atlanta-Richmond flight were not together. The flight attendants (yet again) spoiled her with cookies and other goodies. It was also interesting that since she was wearing her minnie mouse hat and carrying Mickey, everyone from the Atlanta flight and in the Richmond airport thought we were coming straight from Disney World....not yet....not yet...

We pretty much collapsed Saturday night and then actually made it to church on Sunday. It was so good to see our friends and Charlotte had a great time in the nursery (as usual). The rest of our day was spent working on domestic stuff. Roger and Charlotte took a shopping trip to Kohl's where they got some great deals on new running shoes for Roger and a few spring/summer outfits for the princess. She should be well outfitted for summer now, I think.

I stayed at home and proceeded to tackle the house room by room. It had become quite the disaster area recently with all the coming and going and none of the "domesticity" that we used to enjoy. Finally, two trash bags , two loads of laundry, lots of recycling, and a whole pile for the Goodwill store later, we have some restored order in the house.

To add to it, we are doing a bit of upgrading in the living room. Our friend Meredith came over last week and gave some advice on rearranging some furniniture to better suit our growing little girl. The table is on backorder, but once it arrives we will have a new workspace for her art projects as well as some storage ideas for the wall. Thanks for the advice, Meredith! If you ever need design advice, you must give her a call. She is practical and stylish all at the same time!

While giving shout-outs to Meredith, I must also thank her husband Mitch and the other folks who helped move our new piano. My other dear friend Katherine gave us a lovely upright piano. It is currently at Kolbey's house and I'm sure will be a treasured tool for our home. We have had an electronic piano since we got married so this is our first "real" piano. Can't wait till Charlotte gets to try some piano lessons!

At the moment, Charlotte is at a playdate with her Montessori friends.

All seems set for Charlotte's surgery first thing Wednesday morning. We will also be conferring with her physicians regarding the consultation we received in Houston. Roger's dad and Juanita should be here sometime tomorrow.

Many have asked if we need anything in the upcoming few days/weeks/months. We will be sure to update you if there are any tangible needs. I have a feeling that most domestic stuff will be covered by the near constant lineup of family and friends who plan to be here in the coming weeks. We are also VERY set in the toy, book, sticker, stuffed animal department. Your generosity over the past few months have left us wanting for NOTHING so please resist the urge to buy the princess any gifts. (I know how tempting it is...she is such a cutie). I will certainly be taking some of her favorite comfort items and activities to the hospital during her recovery and I think she will be set. I hope that this request does not make me sound ungrateful. We are MORE than thankful for all the gifts which have come our way. I just want everyone to know that right now, your prayers and postive vibes are probably the most important gift that you can send our way.

We are at a point where the freezer is less than half-full so if someone feels the need to make us a meal (especially one that is freeze-able), we will happily accept. We are not in desperate need but I know that sometimes folks find it an easy way to help out. It sure does come in handy when we are trying to keep everything together. We just had a tortilla bake last night that was YUMMY (thanks Miss Parker!). Headed over to Granny Dot's for dinner tonight as well.

I guess that's all for now. Hope everyone has enjoyed their long weekend.

Rachel

It's Roger's Turn

Hi everyone,
My turn. It's Sunday and the rain has been off and on pretty intense the last couple of days. Very much paralleling our emotions. I have that big weight on my chest again and the all-over body ache is creeping in. But Charlotte is, again, having a great time of it. She's being read to by Granny, eating strawberries, drinking chocolate milk with special green-tea supplements being added covertly (Thanks NM family). Anything to boost the immune system.

Speaking of that, I hope I don't disappoint anyone but CJ is going to become something of a germaphobic hermit the next few weeks. We really want to limit the number of visits and anyone who comes over may either be forced to wash hands and use hand sanitizer upon entry or may not even get to see her. She won't be going to any of the benefits organized in her honor the next couple weeks and we're working on getting a webcam setup between her Montessori school and home so she can at least see friends online.

Anyone else with webcams can visit with us then as well. Who knows? Maybe some of you will actually get to see Charlotte more than usual!

We are dealing with the latest "bump" (albeit a pretty big bump) on our journey. It wasn't entirely unexpected but we were REALLY hoping not to have to navigate this one. We both had something of an emotional crash yesterday evening and it was comforting to have each other within arms reach if we needed it.

We're dealing because we have to. What else are we going to do? We're certainly nowhere near the end of options and the docs working on her team are some of the best in the biz. If this detour doesn't work, then we look down another path, then another, etc...

One day at a time, right? Breath in, breath out, repeat.

Gotta go eat burritos.

Rog