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! Another shout out to Ruth Campbell and the other Mechanicsville Moms for organizing the Used Book Sale at RNR last night for CJSTUF. I believe a little over $350 was raised and they plan to repeat the event in March 2010.
CJ seems to be stirring so we will sign off...