just me being angry and rambling...

Good news is that Claire is great! She is in kindergarten, using her talker and even starting hippo therapy (a PT that uses a horse)! She is such a rockstar and tolerating all the new people who don't get her yet and making the most of the ones who do, I could learn from her. As for me, not so much the rockstar. Why can't I take a lesson from Claire and just make the most of what people give me. Let me back up a few days ago, I went to my first BSF (Bible Study Fellowship) where I didn't know anyone. Not true, I knew a few people, rather a few people there knew me. I don't know why I am so stuck on this, but I am so angry at the people who were "around" during the hardest and most challenging part that Rett Syndrome and life have dealt us this far. Sure, everyone has time and wants to be friends now that I have stabilized, but guess what, no! As I was leaving another mom approached me in the parking lot, she stopped to tell me that she recognized me, um, awkward. I didn't know her. So I threw out that I have an older daughter who used to go to Playschool (the private preschool that Claire went to, the one I cried every time I drove away because I felt like everyone stared at me) and she might know me from there. Yes that was it! The lady then remembered that my daughter just went on Friday's. I smiled and said see you around, because what else does one say? I got in my car and was overcome with rage. That period when the world felt like it was closing in, when Chloe was an infant and I was still trying to get things set with the school, I really needed support. I felt like a really bad car wreck, the one that everyone slows down to stare at and forgets about in a split second. Now that we aren't in crisis I would really like to just move on and love life, I really would. But here, all this stuff from the past comes and gets shoved in my face, guess I needed another challenge. I feel like saying, if you were in Vegas on Friday the 13th, walked on the cliffs with me, or spent at least 45 minutes a week with me on the phone, then you are in, anyone else, take a number. Then I see Claire, who puts on her best face even when the people who are working with her don't get it, they haven't yet learned how amazing she is. She could just go to sleep and wake up when the next person comes around that she likes, or she could scream and make their life hell. Honestly, she does a little of each, but she doesn't completely shut the door. She has faith in them, that if she keeps telling, quietly leading them along, they will get it, and for the most part they do. I know that I was never called to hate, rather love and i don't remember anything being said about it being easy. So I guess it will just be yet another process, another lesson and hopefully I can learn it without causing too much pain. I know this post was pretty negative, honest, I feel much better now, but I feel like I would be fake if all I ever put up is Claire is awesome and life can be a little hard, thanks for bearing with me.


Too Marvelous!

October is Rett Syndrome awareness month and I have a team for the strollathon, so I put together this little video to help promote my fundraising page. It certainly wasn't an easy process. Going through old pictures, remembering all of the things that Claire used to be able to do. How she would feed herself, hold her cup and push her little wagon around. It got me thinking about everything that Rett Syndrome means for me and our family. Sure, it is a pain because we have to do so much lifting and it takes forever for her to chew, meals feel like an eternity. Then I look at her, I love how she reminds that nothing has changed. Sure she can't talk or use her hands, but nothing has changed. Claire is who she is and today, other than allergies, she is doing very well, and I am so in love with her!



September 1st was not only the first day back to school for us, it was the first day of Kindergarten! How ever did that happen? It was also that first day that Claire rode the bus home. I am so proud of my brave little girl, she loves riding the bus and is really enjoying her independence. I am really enjoying two less trips all of the way down to school. Claire has therapy the three other days, so for now, it is just twice a week home. Once we get the classroom situation settled in, I think she just might even ride the bus to school, so exciting! The classroom situation, there always has to be struggle to make a story good, right? At the start of the year, Claire was slated to be in the same preschool/kindergarten class that she was in last year. The problem with that is there were a bunch of rookies that got moved up into the class and it was chaos in there. Claire really does pretty well in chaos, but this was a little much. So I asked to see the k-3 class. I was able to see it that Friday and the same day get confirmation that she could switch! I seriously don't think we have ever had anything happen that easy. Wait a minute, maybe that was too easy, it got more complicated. We were told that today would be her first day in the new class, but it didn't quite happen like that. You forget just how unique your kid is when there needs to be a complete state of the union before moving to the classroom on the other side of the parking lot. I am actually really happy that both the old and new team are taking the time to be sure that no details get missed, Claire is really surrounded by a lot of amazing people. So hopefully next week she will be in the K-3 class as her new home, then we will start integrating her into her mainstream class. Eventually we will get all settled in and it will be Christmas break, oh well!