1.23.2010

Pink glitter!

I think that a new tradition may have started around our house today. Typically, Jared takes Claire out on a date on Saturday mornings. First they hit the Verve for some coffee and a cookie and then find their way to a few different surf spots to practice walking, listen to waves and just enjoy time. Recently the local Ducati dealer relocated to being right on the way between our home and the coffee shop and surf spots. You can see from the picture where the two of them ended up. I am just in awe that Claire loves motorbikes so much. She is a very sweet girl but can be particularly impatient when the activity is something that is not to her liking. I do think that the pink glitter helmet had a lot to do with. If I had a crystal ball, I would guess that there will be many more pictures of Claire around various motorbike stuff and there will be glitter, in some form or another of each of them.

1.19.2010

Celebrating today

Mt optimism for this year has been tempered with reality, but still I am choosing to celebrate today. Our trip up to Oakland for clinic went well. I didn't get any really bad news that day, so it was an improvement over last year. Already there have been many hard days. As Claire grows and continues to amaze me the torment of the reality seems so much more. The brighter the day, the harsher the reality but I have to just keep praying and keep putting one foot in front of the other. I did get half the Christmas cards out and today I am mailing the rest. I used cards with a tree since we never put one up. It is so great to sit and reflect on the miracle of the birth of Christ away from the holiday busyness. Truly, it is today, every day that the birth of Christ becomes something amazing and worth celebrating. Without the hope that the birth brings, I can not imagine how I would get through today. So far I am aware of 6 girls with Rett Syndrome passing this year, two of them yesterday. I struggle every day that I want her to be free yet I am so blessed by her presence, I do not want her to leave yet. So we continue on with the constant emotional roller coaster between joy and grief, and with that I will just try to celebrate today.

1.08.2010

Almost Normal


Ah, a sigh of relief. It's a new year and I am so excited. Last year I was excited to, but I really do think that things are going to improve. Our latest new year tradition is a trip to Katie's Clinic at CHO for our annual every January. Last year I was almost in the parking lot when I got a call from my mom that my grandfather had passed. It seems like between that point and this point there were many more hard days and that is why I am so glad to say hello to 2010! We are headed there today and I am hopeful that it goes a lot better. It was the first week back in school and Claire got to school on time every day, which has to be some sort of world record. Yesterday afternoon we took a long afternoon stroll with some good friends. Coffee at Verve, happy girls in a stroller, the sound of crashing waves. I have to say that I think we are almost back to normal and I am really excited. So excited that I might even get the Christmas cards out in the next week, crazy I know, but it could happen.