Over the last few weeks there have been a lot of posts out there about what people have been doing to celebrate the holidays, how the holidays are hard and how cute their kids are in special holiday attire. So the holiday celebrating was supposed to start Dec. 1. For the second year in a row, I forgot to get candles for the Menorah so the Festival of Lights was off to a weak start, really I think 2011 will be my year, it is later in the month, which I am sure will help. We did however manage to pull off a few successes in the weeks leading up to Christmas. We took the girls out to look at the lights in Vasona park and they really liked it. Considering that the last time we did it Claire was screaming in the entire way through, followed by vomiting , which explained the screaming, this was a huge success.
We also put up a tree and had the sense to buy a fake one that was pre lit, so it even had lights. We only got four ornaments on it, I figure I need to leave something to improve on for next year. There was also a very successful trip to the Christmas party for where Claire rides horses. She was very excited to see Santa and as it turns out, Chloe was not. On the bright side there was a firetruck for her to play in so there wasn't too much crying.
Beyond that, we really didn't do much during the advent season. With that said, it has been a huge improvement from the last three years, so I am pretty excited about it. The thing that really made this year stand out over last year was that we got to be with family. Last year was a bit depressing doing Christmas just the four of us, Jared and I were the only two who could speak. Claire was hating life without her talker as we had just returned it from the trial and Chloe was more of a danger to herself because she could get into things but didn't have the understanding of what she was doing or consequences so she was a handful. What a difference a year has made! Claire has really started to be able to better express herself with her talker and Chloe has grown by leaps and bounds. Instead of sticking her hand in the fire she can now stop and say 'no that's hot no no no' which really helps, A LOT. We drove down to San Luis Obispo and met up with my parents and my brother. We took a boat ride on an electric boat in Moro Bay, Claire has always loved going on boats. This was Chloe's first trip and she wanted to get off and tried repeatedly to jump into the water, by the end of the trip she settled on steering.
Sometime after our boat ride Claire started having some extra weird neurological activity and that sorta put a damper on the cheer level for Jared and I. We tried and to just push through and enjoy the time with family and it was nice. It was the most fun we've had opening presents (my rett friends out there know just how horrible this activity is) since Claire was 1. I am guessing that night we just didn't get enough sleep or the month of advent caught up to us. But Christmas Day wasn't the smoothest of rides, although rather eventful. During the chaos of trying to keep both girls happy at the breakfast table,
Jared put the crayons in Claire's juice, which was a lot funnier than it was frustrating, only because he immediately labeled it a Captain Awesome moment. It was pouring rain outside so we had to stay in. Chloe made friends with many people as she went up and down the stairs and up and down the stairs. Claire fell asleep by the fire as I sat and cried, mourning all of the things that rett has taken from us, struggling to be thankful that at least she is doing well and still with us, thinking of the two families that had lost girls recently. We wrapped up the holiday with a family picnic in my brother's room. The only place in town was a taco shack and so that is what we had for dinner. It felt reminiscent of A Christmas Story and a small part of me wanted to break out into Deck the Halls with the ra-ra-ra from the movie, but I was too tired. We drove home that night, a little early. As we laid the girls down and got settled back in, it is good to be home, I am thankful for a lot and I am so happy that the holidays are over! Now onto fixing Rett syndrome in 2011, who's with me????
6 comments:
I am in!!!!
love you guys!
Lots of hugs to all of my Rett families out there. I love the picture of you and Claire on the boat ride! I can concur with the teary moments as I definitely had those as well. I think the holidays would be a good time to visit that Rett compound you were speaking of recently! :)
I am so in! I am so ready to leave 2010 behind! CHEERS to a better year!
I'm SO with you!!
I am so ready for 2011 and all the breakthroughs that are on their way! I had a crying meltdown a few days ago, too. I'm relieved the holidays are settling down and I can soon exit this emotional roller coaster.
I'm so in too! We need to have a New Years rettaway - that would be awesome!
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