I am loving February!

This will be short because typing with one hand takes forever! I knew that we just had to make it through January and that things would improve. I had no idea that they would get so good so fast! Claire and Chloe are both amazing and so much fun. I do miss caring for them very much. Only 5 more days until I am allowed to try to lift them, I am anxious and eagerly anticipate my recovery. I know that I won't be 100% right away, but now that the problem has been fixed it is nice to know that I am at least recovering and not just managing the pain. We got approval for the Eco Point and are just waiting for a denial from our primary insurance, which has never been hard to get. It is possible that Claire will have her computer to speak with in the next two weeks. Just the thought is so unimaginable! Chloe is certainly determined and full of energy. Her newest trick is pulling to high kneel. It looks like she will be pulling to stand soon, a feat that Claire is still working on. Such is my life, amazing levels of joy and grief in a perfect coexistence, even in the greatest month of my life. I have been taking pictures in an effort to replace the words that I don't have time to type. Please check my flickr page with the link on the sidebar. Their faces tell the story better than I can. I hope that you are having a great February and celebration of love, life and today!

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.

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.

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.

Sweetness

I am again in awe of life and how ironic it has been for me lately. A doctor noticed that Claire's spine has started to curve a bit so we were referred to a specialist to monitor the situation. The trip to the doctors office was the perfect storm of circumstances. My wrist was hurting, Claire needed to be in her chair (instead of our double stroller), Chloe was over tired and woke up as soon as we got out of the car. Then we waited forever, at least 30 minutes, while trying to feed two children, it felt like forever. Then we went back and waited more. After the first interview with the nurse practitioner it was decided that we needed an x-ray. Thankfully by that time the cavalry had come. Jared helped Claire to stand for the x-ray and back into a room we went to wait. Finally the doctor came in with nothing helpful to say. As we left I was so upset that Claire had to jump through so many hoops, all for somebody who didn't get her. He actually recommended a "real" wheelchair for her so that she could play with the wheels. I didn't know what to be mad at, him for such a crazy recommendation or me for being the pessimist that assumed that she couldn't benefit from reaching the wheels if she wanted. It had been a long day, I am still emotionally exhausted from Christmas, and I had just spent almost three hours at LPCH and had little to show for it but over tired girls. As I got onto the freeway Claire started to get more unhappy so I reluctantly put on "her" music. Her favorite song in the whole world is "Sweetness". As the song started she turned her head to look at me in the mirror with that slight "Mona Lisa" smile that she has. Then the best happy sound came out of her. I love it when a favorite song comes on and all my problems melt away and I love it more that Claire has this. As we drove home, Claire soaked in the beauty of the forest and bobbed her head to the music. I pray that some day she can dance to her favorite music on this earth, that day will truly be sweetness.

The Sound of Silence

It's not something that I hear much. I typically fall asleep while the dish washer is running or music is playing. When I am awake there is almost always a lot of things going on. But not today. Jared and Claire went to get coffee, watch the surfers and go shopping in Los Gatos. This left Chloe and I home and she took a great nap. I roasted some squash and made the baby food for the week. Then took a shower. Once I was dressed the most amazing thought happened. There was nothing pressing. Sure there are 4 loads of laundry waiting on the floor, the carpet needs to be vacuumed and the dished could use some attention. But the phone wasn't ringing, I wasn't late for an appointment, there was no child in need of my help. I sat down and the only thing that I could hear was a bird chirping, then it flew away. Then I heard a rattle in the crib and the phone rang, but it was a very nice moment. I am reposting as there was a comment that I wanted to remove and couldn't figure out how.

On My Drive to Work Today

It might sound odd as I am a stay at home mom, but I do feel like I commute every day. Claire goes to school five days a week at two different locations, each at least a ten minute drive from our home. Getting Claire a public education is indeed a full time job in itself. Enough explaining, on with my story. As we started our journey to school today I was thinking about all of the usual stuff. When should I call the County Office of Ed to discuss the next IEP, I have to call the district and find out what on earth they are thinking, when are we going to see the specialist about scoliosis the appointment is in Dec so it must be soon, the typical monotonous part of my job. As we got onto the highway the light was coming through the very thin layer of clouds, it was breath taking. Normally we go to school in a dark grey fog, this was more like low laying clouds. I told Claire that I felt like we were driving in clouds and we could pretend to be angels, I got a big positive yes to that! As we dropped getting closer to sea level the clouds cleared and the sky was so amazing, crisp and clear. I tried so hard to soak in the beauty of the morning. The trees were such a deep bright green since it rained a few days ago, the leaves were bright red and the blanket of light fog was slowly starting to reveal the dark blue water beneath it. I seriously have such a beautiful commute. It did help that both girls were sitting quietly smiling. Then we got to school. As I helped Claire to walk toward the classroom I discovered that she had puked inside her shirt, but I had a clean set in her backpack, so we are still up for the day. Now I need to get a referral to GI, another thing that I have been meaning to do.