Blue Sky Girl

Over the past few weeks and months I have in a way had my ear muffs on with most things rett. I half pay attention to the things that are close to home and graze over the rest. Last week, I finally clicked on a link that I had seen more and more people talking about on facebook. You can click here if you want to see it for yourself. It really struck a chord with me. A large part about why I dread October and rett syndrome awareness is it seems to have an edge of 'look how bad this is, we have to fix it now' and that is why I withdraw a bit. As much as I would rather Claire not have rett, there is still a lot of life to be had within it. The whole concept of the blue sky girls is creating an event that symbolizes their strength, will and what they CAN do. To see this out there really deeply encouraged my soul. So I wrote a note to the contact person to say thanks and let them know that we would be standing with them, just by ourselves out on the west coast. To my surprise and delight, they responded quickly,  it was Dr. Sasha Djukic! She is sorta famous in my mind, I have heard of people that journey to see her and the great advocate that she is for rett syndrome and I got an email from her, wow! She also sent a shirt overnight so that Claire could have it for the big day, how great is that?!?! Saturday morning came and on our way to the stairs that she would climb, Claire fell asleep. There was no waking her, only waiting, so wait I did. Jared and Chloe went to go pick apples and I drove around and took care of a few small errands. Eventually Claire woke and with the biggest smile on her face. Since we had to wait for the other half of our team, Claire and I opted to go get a power snack at Verve since it was close. Whip cream and carrot bread, how can you top that? You can top that with the smiles and encouragement that came from the girls working there. They cheered Claire on in her efforts for the day and even put extra chocolate sprinkles on her whip cream.
 Between her nap and the yummy snack, she was ready so again, we headed down to the stairs and the timing couldn't have been any better! Jared and Chloe got there ahead of us and had run into a friend. Being that he is in fact Captain Awesome, Jared got his friend to hang out and take video and pictures for us. We had asked a few different people but it being last minute, no one was available so we had given up on the idea of video or a group picture, so that we got this is super special. So here it is, the last bit of Claire's ascent to the top!
It has been such a nice way to spend a lovely October Saturday. This didn't seem like a rett syndrome thing to me. It was really more of us being us. We help Claire up the stairs all of the time, but today it was special because we did it with others that we couldn't see, joining together to celebrate the girls. It was also special because of the encouragement that we got from peoples paths that we just happened to cross. Even with our cool and gray fall weather, it was for sure a blue sky kind of a day!


So far, so good!

We've only had two weeks of October and already there has been so much good stuff. Here are some pictures from some of the highlights. We started with pumpkin soup and Chloe helped me clean and roast the seeds for a little snack.

We enjoyed some time by the ocean and had loads of fun at the boardwalk.

Captain Awesome was able to join Claire and her class for a field trip on the O'Niell Sea Odyssey, they couldn't have had better conditions!

I have gone through more than 40 pounds of tomatoes and made a lot of salsa, so now I have great spicy tomato juice to cook our kale in, yum!

The weather got warmer, so we indulged in ice cream and spinning in circles post sugar high.

Claire had another field trip with her typical class, this time I got to go and we went to learn about farms, which was good because I love farms and tractors.

Since the weather was still epic we went down and spent even more time by the water. They are making a movie so it was fun to see all the movie making stuff.
Just in case there hadn't already been enough fun, Chloe got her first skateboard ride, which she loved very, very much.
Despite the weather feeling more like summer than fall, October has been great so far, I'll take it! 


Not THIS October

 The last October that I remember enjoying was 2005. At the top of the list of fun activities was the harvest at V. Sattui including a lovely picnic under a lush tree, stopping by Prager (still thankful Uncle Jack gave us that tip!), walking across the Golden Gate Bridge and the day before Claire was born, I had the most amazing bowl of pumpkin soup of my life at the Ritz Carlton in Half Moon Bay. Then there was the birth of Claire, that was a really good thing too! Sad that it is 2011 and it has been that long since I really enjoyed the month of October, my favorite month of the year. I have been thinking about this a lot. I go back and forth but I am making my final decision, as of today, I am done celebrating rett syndrome awareness month. We had so much fun joining in on the celebration over the last weekend. We went to the NHS and saw our wonderful rett family. We got the incredible news that despite getting a lot taller Claire's BMI has stayed the same for a year (in rettland this is like winning the gold medal) We saw two amazing doctors that both said good job and not much more. We went to the 2nd Annual Nor Cal Srollathon and were overwhelmed by the support of so many that we are on this journey with. That was all wonderful and we absolutely love our rett family, I do not know where I would be without you guys! But Oct. 15th will mark the day that we got the call 4 years ago, the call we were never expecting, the one when they said that we should make an appointment to come back and talk since the test for rett syndrome came back positive. I will not spend an hour in the shower crying this month. I love October too much! I have let rett define me for too long. I know that it is a part of me and I don't want to change that, but I don't want it to define me either. I am sure that there will be some random day in December when I can't take it and the weight comes crashing down. Then I will hide and sob, but not now. While October is the official awareness month, I feel like I am aware of it all year long and constantly doing what I can to educate people. So this month I am taking off. I think I will start the celebration with another bowl of the pumpkin soup that I just made. After all, isn't that what October is all about? I will share one pic from our big fat celebration of rett syndrome awareness, this girl is amazing and that is sorta something to be celebrated every day.


For Claire

Since October is Rett Syndrome awareness month, I put together a little video to honor Claire and what she has been up to lately. I hope that you enjoy it.