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.

Focus

That's right, when I go out I take four dates with me. Not really, we got to get out and go to the local Ducati Owners Club's bike night. The food was alright, the service was horribly slow, and the company was amusing. The sound of the older bikes as they went by made it all worth it. It is so easy to get frustrated when Jared works late another night. It was a good reminder to not take things too seriously. Yes, there is a lot of money involved and lots of other stuff, but in the end, it is the motorcycle business, it is cool. I am particularly happy with Ducati lately because of the love they have been showing to Claire and her friends with Rett Syndrome. I don't know if I can say at this time, but it is so nice that they want to do what they can to help. It is some much needed encouragement in this ugly time of IEP's and evaluations and all sorts of hoops and stuff. I cannot believe that it is so complex to have a three year old in preschool. I figure that in all, I communicate with almost 50 individuals for Claire and this Rett stuff. I am not counting her friends that she plays with, only business things like school, doctors and therapy. So I figure I have a bigger department than Jared and more on the line (if you value life more than $$$). So in theory, I should be more stressed than he is. Then it is like God hits me in the face with his truth. I need to be grateful for all of this, He made Claire like this, put her in these situations. Is is possible that in this big mess of preschool nonsense that God could be at work for a greater good, I suppose. I am trying very hard to take a new approach. To remember that with every interaction that I have, I am to love first. Before I am Claire's advocate, I am a sinner that was blessed by the mercy and grace of God. I know that I need to fight to get Claire in a good environment where she can learn and thrive. But I think that sometimes I start to limit God by thinking that I know what that is. How narrow minded of me. Funny, as I spent today focusing on how I can be quiet in this situation and listen for God to move, I was full of peace. It is so easy to loose focus each day of that. I guess that is why we go to bed every night with the challenge of waking up and making the decision each day, what will the focus be. Thank you to those of you that have been encouraging me through this walk. It has been such a blessing to have people whispering in my ear to stay focused.