It started out as a very cool day and has devolved into darkness.
Our neighbors down the street, led by their soon to be son-in-law, arranged for Sgt. Santa to make a very special stop at our house this morning. It was so awesome! A pink and purple tree appeared on our front lawn along with a pile of presents for Charlotte. Sgt. Santa came by around 9:45 and we sat CJ in her new stroller while he stood with her and we brought her several of the presents to open. She got things like a princess fleece wrap (like a Snuggie), lots of Princess dolls of all kinds, and, of course, books and chocolate. Even Mommy and Daddy got stockings.
It was chilly out and I didn't want her exposed to the wind too long so we adjourned things outside and moved into the house. Rachel even manhandled the tree indoors since the wind was trying its best to knock it over. It's now in our front hallway filling it up and blocking the way. We don't care. It's cool!
The rest of the unopened presents filled up the front living room (what I call the "library") and we've been opening them, slowly but surely, all afternoon (between eating sessions, of course).
The gifts have come from all over the east coast and the generosity is truely amazing. There were even some checks in the mix guaranteeing a wonderful time in Disney World; however, as we've unwrapped them, we've been faced with some stark truths. Most everything she has been given, CJ will never use. One gift is a wonderful fairy treehouse set with everything one could want for playing this sort of role-playing game. She'll never play with it. There were several dolls with clothes and other "accessories" that are beyond her ability to manipulate. It made us rather sad.
We have noticed a marked decline in her motor skills today (especially in her right hand) and she even told us that it was hard for her to pick up her "square macaroni."
I don't think this Disney trip is coming a moment too soon. If she makes it to New Years I'll be very surprised.
Most of the time, I'm relatively together but today has been very hard. I sometimes feel so sad and even as I write this I'm having trouble keeping it together. I feel I'm being very selfish. It doesn't help when I see the videos being imported into the computer. I see how verbal she was and how easily she communicated with us, especially in the sweet voice everyone always talks about. I keep looking for reasons that aren't there and my rationalizations start to crumble. My only hopes, as they have been for some time now, are that Disney is magical for her and that the end is swift, peaceful, and painless. After Disney, I don't know.
We are past the point of needing most advice. We don't need any more gifts unless it's books or donations to her fund. What we CAN use is the main thing you've been giving us all this time, the knowledge that you're there, thinking about us and wishing us the best Disney trip ever. "There are no words" keeps popping up and you're right. There are none. Even if you've been through something like this before, nothing helps. We just have to slog through it day by day knowing you all are out there, sending us good thoughts, wishing you could do more and that every day with her is still a bonus.
Tomorrow we go up to Baltimore and the Ravens/Steelers game. Charlotte's Devon is meeting up with us there. We have VIP passes to everything downtown so we're gonna whoop it up until CJ poops out. By the way, THAT'S not a problem lately. Just in case you're keeping tabs.
Charlotte is already asleep and Rachel and I are going to watch "UP" with the commentary on.
Another "by the way," I can't believe we're about to go over 200,000 hits on Caringbridge. I might have mentioned it before and it may seem strange but I pull solace from that.
Thank you all for everything.