Sorry, it's been a while

I am so glad to have survived October. Every year now, that month kicks my butt. Now that we are more than half way into November I am starting to recover. The time has been filled with lots of really great and fun times. It is really nice to have a little time to breath and stop and be thankful for it all. Claire is making a lot of progress right now and I am finding myself overwhelmed. I really didn't realize how I had stopped dreaming for her until she started to do things that I had never dreamed of and the process has been amazing. This morning she sat at the kitchen table with her talker. She kept playing her favorite song, stopping after 30 seconds and then starting it again. I really had hear the song enough so I returned to the usual running around in circles getting ready to get out the door. Since the shock value was gone she listened to the song in its entirety. Once it was done, I heard the talker say, put, put. So I went over and she had gone to the dress up screen on her own. Again she started "put silly hat" On the table in front of her was her new rainbow striped hat with purple flower ear flaps. She wanted it on for school. In her own 4 year old way she was getting through to me that she wanted her hat on for school, how typical is that! I love how she reminds me to take big pleasure in the small things. The other thing that she is teaching me is that God has a good sense of humor. I don't get computers, I don't like them. When it stops working I normally unplug it, walk away for a few hours and hope it is magically better when I go back. I am not a girly girl, never was. I wear jeans and a t-shirt whenever possible and might put makeup on twice a year, if you count lip gloss. Enter Claire, who wants to use her computer that reads eye gaze to discuss what dress up dress she will wear to the tea party with her dollies. I seriously don't think that I could feel any less equipped for this gig. Yet somehow, we make it through the days and most of the time we even have tons of fun. Who knew? Will try to be a bit better about posting, I always say that and never am, but I am trying.

Not typing

I just thought I would let you all know, I am not updating the blog much as it is currently very difficult to type. I am wearing a wrist splint on my left hand, which leaves me typing with one hand. I am going to hand therapy twice a week and hopefully I will be better with a few weeks. When I get it off, I will update more. I hope you all can enjoy your fall as much as we are!

October is Rett Syndrome Awareness Month

Good Morning! Today, October 1st, is the first day of Rett Syndrome Awareness Month. Rett Syndrome is a devastating neurodevelopmental disorder that happens almost exclusively in females. Girls develop typically from birth to 6 - 18 months of age. ... At some point after at least 6 months of age the effects of this syndrome begin to ravage our daughters. Our sweet Claire lost the ability to use her hands to feed herself over Thanksgiving 2007, weeks after she turned 2. The only word she said was Daddy, something we have not heard in years. She cannot tell mommy why she is so sad or when something hurts her, she cannot tell her daddy if something scares her, she cannot tell Gracie that she is her best friend. What she can do is look into your eyes, that look speak volumes, with that look she tells you THANK YOU and I LOVE YOU. When she giggles you can't help but giggle right along with her. She is determined. She is strong. She is happy. She, Miss Claire Olivia English is pure light, love and joy, our angel sent straight from heaven. Please help us spread the word and help us find a cure so that my beautiful girl can do all that she cannot do at this time.

September, where did you go?

August 26th was the first day of school (see pic to left) and then I woke up and somebody told me October was next week. What happened to September?!? School is going really well this year and I am so excited about all the things Claire is going to get to experience with this class. Somehow, things going well doesn't make much less work for me. I can only hope that October does not fly by in the same way, but I have a feeling it will, oh well. A lot of really important ground work was laid with the school in the last few weeks. Claire's teacher is awesome and the people working with her really get her, which is nothing short of divine intervention. October 1st we have a meeting at the school with the rep from Prentke Romich, who will be bringing the non-beta version of the eco-point. Click here for a demo video. We will have the device to try for 30 days, as soon as we can get one. There is a list, but everything is set for insurance to pay for it, once our name is up. Oct. 3 is even more excitement. We go up to Oakland for the study. A bunch of really famous people in the Rett world will be there and I hope to learn more about the IGF-1 trial that was announced earlier this week. We will also get to have some good rich down time with some of our favorite Rett families, which is always nice. Then Oct. 5th we have the IEP, which will certainly go better than last year, but we still have a lot to do to get ready for it. Fall is my favorite time of year and even though we have a lot going on, there is much fun to be had. I have a big pile of apples just waiting to transform into apple butter and baby food, that should make the house smell good. Chloe has just started to eat off a spoon and that process promises to be great fun, pretty much everything with her right now is great fun. We also plan to visit a pumpkin patch or two, just because it is such a good time. We are anticipating working with a "wish" team in the near future as we are in Stage 2 with Make a Wish. Oct. 17th we will journey to Chico for Alexis Dream, anyone is welcome to join us in supporting Katie's Clinic and IRSF. Then Claire turns 4! The big decision will be what flavor cupcakes to bring to school, I am pretty sure they will be pink, even if she is the only girl in her class. I am so excited, but I do for see being bad about updating the blog, sorry. I will get on when I can. It is far less motivating to do any sort of typing since my wrist is giving me a bit of trouble. Thanks for still checking in, even when I am worse about updating.

Feeling Blessed

Things are starting to slow down enough that I am able to think a little and feel as I move through the days. I hate it when I go through a day and know that there were a lot more blessings in it than I saw. Friday was a little intense. Claire got out of school two and a half hours earlier and the two previous night Chloe had kicked our buts. Then our nanny called to say that she was at the doc with strep and wouldn't be around any time soon. So I pretty much freaked out and felt so overwhelmed. Then, I assume by the grace of God, I found the strength to take a deep breath. So glad I did! I had so much fun with the girls that day. Then Saturday we went up to Oakland and had a nice relaxing morning at a street food festival. As I sat there feeding Claire, of coarse with people staring, I was thinking how blessed I am to be able to share my love of food with her. One of the suckier things about Rett is that often the girls have to get a feeding tube to keep weight on. Claire still has very good control of her mouth, so every day we try to put the yummiest food we can find in it. I am finding the richest and most amazing moments that I get to have each day come out of really hard things like this. I guess that has lead me to start to cherish the tough things, because ultimately, they truly lead to such sweetness. Like talking on the phone with my mom or watching Claire take 8 minutes to wiggle out of bed. Maybe they are just everyday things to most, but because of some hard circumstances they have turned into the biggest blessings. So I sit here this morning and think about my life and I just have to say how amazed I am that I have gotten so much blessing, far more than I ever could have imagined.

Food Rant!

I begin writing with such mixed emotions. It may seem silly to you, but I am very passionate about food. It gave me such joy today when I went to get my CSA stuff and I saw that I was getting a watermelon. A real watermelon, not one that is perfectly round, but one with flavor and character. After picking up my fruit, veggies, eggs and goat milk from the porch of a home a few blocks away, I stopped by Safeway to get some tortilla chips for Jared to enjoy the salsa that I made a few weeks back. Wow, what a different emotion that experience was. I almost felt violated. All of the rows of packaged food, stacked to the ceiling, yelling at me with their loud marketing. I am still in my 20's, it isn't like it has been that long since I have been in a market, but this was horrible. The package sizes and low quality ingredients just blow my mind. There was an open refrigerated case with single serving beverages as well as bottles of wine. I was not really surprised that the case didn't contain any decent wine but I was taken back by the other beverages. Who needs to drink 24ounces of Frappacino, nobody, ever! The soda was sold in 1 liter bottles, what happened to a 12 ounce can? Then there was the check out. I was aghast at the magazines degrading various famous people for whatever they are doing in their lives mixed with the convience foods put forth by the Hershey company. I almost ran out of the store crying. The poor people that go there regularly. Such a good reminder of how important it is to "Vote With Your Fork". It might sound crazy that we eat mostly beef and veggies, but we are blessed with those resources close to us, so that is what we eat. I know that I am not perfect. I have a bad habit of occasionally enjoying Panda Express (which I normally regret) or when trapped in the car with two sleeping girls going to a drive-thru for some french fries. I guess the part that makes me so sad is that so many people just don't realize what they are doing and the options that they really do have. Those that think that they are doing the world a favor by purchasing really small individually wrapped organic snacks are missing it. Eat an apple or a carrot! It is tragic to me that our nation is so missing the big picture on our food system. On the bright side, there is movement, momentum is stirring for a sustainable food system. I belong to a preservationist society. I am able to get tomatoes and cucumbers among other things in quantity almost directly from local farms. When their fields are brimming with food faster than they can get it all sold at market, an email goes out and I can put my order in for a Friday afternoon pick up. There are few things I would rather do than spend a Saturday at home with the girls, in and out of the kitchen and wind up with shelf full of salsa for the winter or strawberry jam. Actually, there is one other thing I would rather do, go to a festival celebrating food and it's place in culture. If you are in the Oakland area at the end of Aug. you might want to check out Eat Real, we hope to go, girls and weather permitting. So that is my rant, I feel better now, time to go make some fruit spread with all my fresh berries.

Claire and her Daddy

They got dressed for church matching, not even on purpose, how could I pass it up!