1st Grade!

What?!?! 1st grade, how did that happen. I don't know how we ended up here so fast but I will admit that it has really been a wonderful transition. Claire's school started on Wednesday and due to fortuitous circumstances, Chloe was in school all week. This allowed Claire and I to have a really great last two days of summer and go out in style.
We went shopping for shoes.

Enjoyed one last treat from Verve.
Went down to watch the waves, we also worked on vitamin d intake and she walked up 22 stairs to get back to the top! 

She loved getting her hair cut, I assume because she loves attention and mirrors. 
Last on the agenda was pt, and she killed it! Those legs are getting so strong!
With all of that out of the way, Claire was ready for the big day. I was so nervous. I knew that our new aide was great, but new anything lends itself to the unknown. I was up late making her lunch, going through the packet of papers from parent night and trying to remember all of those little details that are involved with going back to school. Sure enough, Wednesday morning came and she was ready to go. She was excited but not too much, I think that she was just really ready.
After I dropped Chloe off at her school, got myself some coffee and took a nice long slow walk by the ocean, I stopped by Claire's class to answer any questions that had popped up in the first few hours. When I arrived Claire and Natalie (her WONDERFUL new aide) were just returning from her regular ed 1st grade class. Claire has a desk with her name on it and a really nice friend to sit right next to her. When Claire shouted out while the teacher was talking she rolled with it and took that as Claire shouting out the appropriate answer. I really couldn't imagine a better situation for Claire at this point. After I explained a few details and talked a bit with Natalie about how Claire works it was clear that I was no longer welcome. I tried to get a picture of the two of them and I got a little attitude, which I guess might be normal for any big 1st grader who's mom has stayed passed thier welcome.
Having given up on a smile for the picture I let the two of them get back to their first day of school business and went on my way. I had completely forgotten just how nice it is to be in a car without princess songs or Dr. Seuss playing and when I got home I even got to pick up the house faster than it was getting un-picked-up, it was great! As I waited for the bus I prepared myself to see an exhausted and unregulated Claire. After all, it was the first day of school and it can take a while to get in the groove of it all. I was honestly surprised when I found Claire getting off the bus with the most vibrant smile, clearly 1st grade agrees with her well and we are looking forward to a wonderful year!


That Was Hard!

I knew going into it that not using words would be hard and it was. I am so glad that I restrained myself because there was a lot to be learned in the process of not being able to do something as simple as share a story with more than just a picture. It gave me the slightest glimpse into Claire's world. She takes in everything, like any other little girl would. But it is so much harder for her to tell me those little things, the little details that only she could express. To have those thoughts and not be able to share them with you was really, really hard. It did help me to get down to Claire's level a little better. Instead of continuing to try and adapt her into the box that I expected her to grown into, I tried to be quiet and hear how she does it and try to speak to her at that level. We spent a lot more time together without using words, rather facial gestures and eyes. She is so much better than me at being able to articulate things with her body language and I really enjoyed being able to slow down and really enjoy that. About half way through my little experiment of trying to blog without words, I added the emphasis of beauty to my remaining picture posts. Again, I was blown away at how much I learned and grew through such a simple exercise. One of the things that I see as I look back is that I really am surrounded by beautiful and amazing things. There isn't a day that goes by that I am not grateful for the lovely climate here in California, for the ocean and for the towering trees that make up the forest that I enjoy so much. It isn't just my pleasing circumstances that make my life filled with beauty.  Even on the hard and truly challenging days (which I will say there was more than one) I found that when I looked up, I could see beauty all around. I am also surrounded by really beautiful people. Not just Chloe and Claire as they were my obvious subjects, but everyone else. I loved going through my days seeking beauty out because I saw a lot more of it everywhere. In the smile of the person handing me coffee, in the look of anticipation as the the surfers head to the water, as friends stroll sharing their lives in story and as a respit provider lovingly take a child that is having a rough day from a frazzled parent, beauty is everywhere! With that I will leave you with one last picture of what I percieve to be beautiful. As I stood loosing my thoughts in the waves, two v shaped formations of pelicans flew above me in opposite direstions, it was indeed beautiful and awe inspiring.


My Crescendo

I just needed to make it through Friday and I knew that I would have survived the summer, what I think might have been one of the hardest ones ever since I don't expect that Chloe will be a potty training toddler ever again :-) She has been doing really well. When I picked her up at school on Thursday they told me that she really did well in her big girl panties but that we might need to send a few back up pair. Great!!! I can do that! The problem was that we had only 5 pair of panties, which is about a days worth at the current burn rate, so we needed more. I want Maren and Erica to know that I thought of you both as I summoned the strength to take the girls into Target, one of the places you are least likely to ever find me. We had had a good morning. We got the honor of showing Claire's chair off to another family as they were working on making their big decision for the wheels they needed to move into. We went to Verve and shared a croissant. Then we drove over the hill to have lunch with Jared (who works right next to the big evil Target) on our way to ride horses. I just had to make a quick stop inside, get panties and enemas, which to me seemed really ironic and funny, but that is just where I operate at, so I laughed to myself about it as we put our items on the belt. As I paid, Claire gave me the signal that she needed to go to the bathroom. Still there had been no tantrums or gnashing of teeth, I was feeling pretty on my game, so we went for it. I get Claire on the toilet, take her wet pants off and ask Chloe to get me a clean diaper for Claire. She hands me an ipod. I then, while balancing Claire on the toilet, start to search through the back pack myself. Sure enough, I had used the last one and not noticed or remembered to put more in there. But on the bright side, while I had been rummaging around the bag, Chloe had taken all 10 pair of her new princess panties out and strewn them about the stall. All I had to do was convince her to share one pair with Claire (who I had asked if she wanted her own this morning and she said no, she prefers the security of the pull ups) and convince Claire to not freak out and to hold it until we could get to the car and a place where I could again change her. Those two goals were met with surprisingly little resistance, Claire actually loved laughing at me more than she was worried about an accident and Chloe is a very loving little helper. We loaded into the car, drove over to the parking lot behind Jared's office where we quickly corrected the situation and then drove on to horse therapy. Chloe slept in the car, Claire enjoyed her audio books and I nearly laughed out loud the whole rest of the day, at myself and the ridiculously disproportionate amount of time I spend in public bathrooms and changing diapers. But that is my life, I don't see it changing that much so it really is just best to laugh, because there are so many jokes to be made where Target, princess panties and enemas are all in the same sentence. On top of that, I made it! Claire rode stormy, Chloe played with the donkeys. We came home and danced to princess songs, had dinner and with that, I had made it!!! I didn't even get committed to the mad house or accidentally drive my car into or off of anything, but I did it and actually had a lot of fun in the process.


More than stickers

I know, here I am using words again...it does sort of make the point at just how useful they can be. I had an experience that was just too good to keep to myself, so here here is my story.

Funny how often, the best things happen when you aren't looking for or expecting anything. This is at least my recent experience. Friday was a tough day. Claire had a seizure after starting the meds which was for sure not what I expected, her spells of dystonia had gotten worse and the pulmonary specialist that we waited almost two hours to see told us that he couldn't help until he saw Claire sick and that there was no prevention at this point (not at all what I was hoping for!) We rolled with it all pretty well, kept looking for the bright spots and made the most of it. Saturday morning we opted for coffee out. Since it is summer there were a ton of people inside so we did the super cool local thing that none of the tourist knew about and went to the little cash bar in the alley way. Jared and Claire waited for our coffee and talked with the guy (turns out his name is Randy) who was waiting for his while I chased around after Chloe. Randy told Jared how much he loved Claire's beautiful smile and said that she should come down to his shop for some stickers some time and then went on his way. We got our coffee, took a nice walk and talked about how nice it was to chat with a stranger who was so friendly (honestly it happens often and I never tire of it). We had a nice low key weekend full of lots of down time and playing with the girls. Monday morning came and Jared didn't have to go to work (imagine the sound of angels singing) so we again had a lazy morning and found ourselves down at Verve getting coffee. It was pretty cold and wet (please don't hate me if you are somewhere where it is hot, I am honestly not trying to brag) and we weren't sure that was the best weather for a long walk, so we decided to take a short stroll up to the surf/skate shop that Randy works at to take up his offer for stickers. What happened for the next hour was unreal. He sat in the doorway (for the best light) and carefully worked with Claire to figure out the coolest way to trick out her wheels. Side note: Randy never asked what Claire's condition or disability was, the word rett never came up. Often when people are around Claire they talk to her but don't listen for her response or they talk about her as if she isn't listening, back to my story now. He talked with her as he tried to figure out what would work best, there was never a point where I had to translate, he talked with Claire and responded. The three of us made small talk as Randy carefully put the stickers on her wheel covers and Jared and Chloe discovered foosball and a table top skate park for finger skateboards. Claire sat there beaming as Randy's excitement grew with each sticker that he placed. I struggled to try to keep my composure. Part of me hated that I got so excited that somebody was treating Claire like such a normal kid, shouldn't that just be expected? Part of me was mad at myself for not doing it more often. But the rest of me was just overwhelmed with joy that it did happen, it was truly beautiful and a moment that I really absorbed and treasured. As I publish this, it is a week later and it has been such an encouragement to have those stickers on the chair. Everywhere Claire goes, people have commented on how cool her stickers are and have identified her as a local. Every time that something was said, she just beamed that warm, glorious, bright smile that transcends words and it has been good.



On our morning walk, there were dolphins playing in the kelp, hard to see in the picture, but if you click on it, they are pretty close to center. It was a lovely way to start Tuesday.


This is for Monday, I'm playing catch up :-)

Lazy Sunday

Having technical troubles, sorry for the delay.



As I am contemplating beauty, this is what I found on wikipedia:
Beauty is a characteristic of a person, animal, place, object, or idea that provides a perceptual experience of pleasure, meaning, or satisfaction.[citation needed] Beauty is studied as part of aesthetics, sociology, social psychology, and culture. An "ideal beauty" is an entity which is admired, or possesses features widely attributed to beauty in a particular culture, for perfection.[citation needed]
The experience of "beauty" often involves the interpretation of some entity as being in balance and harmony with nature, which may lead to feelings of attraction and emotional well-being.[citation needed] Because this is a subjective experience, it is often said that "beauty is in the eye of the beholder."[1] In its most profound sense, beauty may engender a salient experience of positive reflection about the meaning of one's own existence.[citation needed] A subject of beauty is anything that resonates with personal meaning.[citation needed]
The classical Greek noun for "beauty" was κάλλος, kallos, and the adjective for "beautiful" was καλός, kalos. The Koine Greek word for beautiful was ὡραῖος, hōraios,[2] an adjective etymologically coming from the word ὥρα, hōra, meaning "hour." In Koine Greek, beauty was thus associated with "being of one's hour."[3]

Here is my photographic interpretation of the word for today:

 take out!


Breaking my silence, but just for a moment

I know summer isn't over yet but I had to break my silence for just a moment. I wanted to share two really amazing blog posts, one from a close friend that you can read here and another from somebody who I don't know, but hit the nail on the head, you can read it here. Neither post is very long but the thoughts that they shared were truly a blessing to me and I hope that you will enjoy them as well. As for the rest of my wordless summer on the blog...I am changing the challenge to myself a little. The last few weeks have been hard, very very hard. I am continually reminded that even in hard and difficult circumstances, we live in a world where beauty abounds. So I am really going to post a picture of beauty each day until Claire returns to school August 24th. Here is my first attempt. I really debated on whether or not to post this pic. I was sitting in Verve with Claire after dropping Chloe off at school. The song 'Sitting on the dock of the bay' was playing, she was enjoying her cup of whip cream and I my cappucino. It was indeed a moment full of so much beauty. Then Claire had an episode that caused her body to contort and her to stop breathing for a few seconds just as we were taking my empty cup up to the counter. In that momment I was so mad that rett had to ruin my perfect happy moment with Claire, but today I am choosing to remember the perfect and wonderful calm before the storm by sharing this picture with you. Here is to seeing beauty every day for the rest of August :-)