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...

Animal Kingdom

Yesterday was our final day at GKTW. We checked out of our Villa and got the car all packed. We have a whole suitcase full of gifts from GKTW as well as a few souvenirs. Good thing one of her daily gifts at GKTW was a GKTW duffel bag! Before we checked out, we got to meet Leah. She is one of the event coordinators at GKTW and her dad is pastor at the church in Pierson where my stepdad (John) helps out from time to time. Small world, eh?

One of the coolest things about our checkout process was that they give us this passport. We have a full year to visit places all over the country that participate in the GKTW program. We can go to places like Hershey Park, Kings Dominion, Hyland Hills Water World, etc. for FREE with usually a week or two notice. What a great thing. At some point, I will list all the corporate sponsors and companies that make places like GKTW possible. These are businesses doing great things for families in need and they deserve your business!

After we said goodbye to GKTW, we headed over to Animal Kingdom. Again, we got the primo parking. We made our way into the park and headed off to the safari ride. Got to see lots of animals from crocs to hippos to lions. We then went on the Rafiki train ride and over at the Conservation Station we met Rafiki and Jiminy Cricket. Another great example of how Disney employees treat the Make-A-Wish families: as we were coming in to the Conservation Station, we saw Rafiki doing his meet and greet. We went up to see him and Rafiki's "assistant" told us that he was about to take a break and would be back in about 5 minutes. No problem. We were totally cool with that. Rafiki, however, had other ideas. He saw CJ (and probably Roger's Make-A-Wish tee) and stopped to greet her and take a few pictures. We got nice hugs from him too.
Later, when we went to see Jiminy Cricket, we pulled up to stand in line. It wasn't a very long line (maybe about 3-4 families) so we just pulled into the queue. One of the assistants looks over at us and says, "You know that you don't get in line. Come on over here!" And with that, we were bumped to the front. It was funny!

During the morning, Charlotte was very low key. She didn't really perk up and was very quiet. Roger and I weren't really feeling all that great either so it was kind of a rough morning. Things got better after lunch, though. We ate at the Yak and Yeti which was a Pan-Asian restaurant with cool Hindu decor. You felt like you were in a lodge in the mountains of India or Pakistan. Roger had a great meal of pan-seared miso salmon with rice and veggies. I had fried green beans with a chili-plum sauce and pan seared pork wontons with a lime soy sauce. Both were yummy!

After lunch, CJ seemed to perk up a bit and became much more talkative. We headed over to the Finding Nemo Musical show and we were AMAZED! First of all, we totally beat the crowds with our access pass. The musical was great and we were all entranced. They use puppets and live singers a la The Lion King musical. I think that was the highlight of everyone's day. CJ laughed at the funny parts and was entranced by the music.

From there, we went to see the 3-D bug movie (from A Bug's Life) and then found our stations for the parade. The parade at Animal Kingdom was not as interactive as the Magic Kingdom parade but there were great animal costumes, floats, and some of our favorite characters. From there, we left the park and drove to Daytona Beach. We had dinner with my mom and got settled in our condo. We are staying in one of my godmother's condominium units and it's GORGEOUS. 2nd floor...right on the ocean. I had forgotten how calming the sound of the ocean can be. We have had a nice night of rest and we have been enjoying the morning. Roger's dad drove down to spend a few days with us and we are planning to take the next few days VERY easily.

Roger noted yesterday that the extra steroid seemed to help with the tremors. We are already noticing those effects wearing off, though. The tremors seem to be coming back and we are debating the advantages of increasing the steroid versus letting things progress. May need to consult with the docs before the trip is over.

Before I sign off, one final plug for an event in the Richmond area:

The Mechanicsville Moms are holding a used book sale at Romp n' Roll-VCM tomorrow (12/10) from 3-7 PM. There will be books available for all ages. Please stop by. All funds raised will go towards CJSTUF.

Also, the CJSTUF website is LIVE. Go there and check it out. Huge thanks to Ruth and Jay Campbell who have worked so diligently to get this going for us. It looks great! There is an events calendar where we will post upcoming events of all kinds. There is also a "read with CJ" calendar. If you are one of the many who would like to read with CJ, please fill out the form (on the Contact Us link) and we will get back to you about dates and times. We will officially start that upon our return from Florida (on or about 12/16). You will also be able to read the blog and connect through Facebook via the website. More changes to come but this is a wonderful start.