With summer being in full swing I have been getting more time with Claire and that has really been a good thing. I wish I had words that accurately and adequately described how much better my world is because of Claire, but I don't, not sure that they exist. Along that line, being with Claire more, I have really started to wonder about the importance of words. When Claire didn't begin to speak it seemed that an inordinate amount of emphasis was directed at language development, access to language (the Eco2) and now we are onto emergent literacy. While they are all very good things to work on and we will continue to pursue them, I think that it kept me from seeing the part of the world that is outside of language. Over the last few weeks, Claire has slowly been showing me all of the things that are bigger than spoken word and it has been beautiful to start to see things from this non-verbal perspective. We were recently at the aquarium when I realized that you can sit in front of the tank and take it in without a single word being spoken. The awe and majesty of the ocean is just bigger than what words can express and she can take it in just as much as everyone else without a single utterance. So in response to this realization and as a attempt to honor my non-verbal child who truly understands and participates in the world without being restricted by words, I will be blogging for the rest of the summer in pictures.


Where to set the bar?

It had been a nice day. Pancakes with fresh strawberry sauce and bacon with the girls. Yummy coffee and then off to church. It was on our way home that we hit the snag. Some how, even having had coffee, I was exhausted so we decided to take the slightly longer scenic route home through the amazing redwood forest. There is something about looking at the light in the trees that is calming and energizing to me and the girls seem to enjoy it too. They were, until Claire lost it and started screaming and biting herself out of nowhere. My blood pressure shot up pretty fast but somehow I managed to stay calm for the 10-15 minutes of intense screaming. I suspected that it was because she had to go to the bathroom. I told Claire that if she would calm down, we would take her the second that we got home, but that if she continued to scream, she would get a time out once home before going to the bathroom. Suffice to say, we got home, she had her time out, I hid in our room with my good friends Ben and Jerry and eventually Captain Awesome talked with Claire about the time out and took her to the bathroom. As it turns out, she was dry, and she voided while sitting on the toilet, which confirms my two suspicions. 1. she was upset because she had to go bad 2. Claire is VERY  capable. This is something that I really struggle with. I often wonder how often I set the bar too low or expect too little of her. Most often it is selfish. Like when she is screaming in the car and I know she will calm immediately if I put on her favorite music, but I am pretty sure that would only teach her that I am a puppet that is easily manipulated. Then there are times that I am afraid to try to have a high expectation for fear that I am just setting her up to fail because she has a very legitimate disability that doesn't let her always do what she wants to. For example, I wouldn't want to say, hold it until we get home, because she really might not be able to. I am curious, how have you dealt with this? Do you ever find yourself feeling like she is capable of so much if you could just be better at supporting her?



"Good!" That is what our friend Emma said to me as we sat outside after having a lovely dinner together. You see, Emma has Rett syndrome just like Claire so I didn't really expect her to say anything to me with her words. Sure, she and Claire had been talking all night with their eyes, but this comment caught me a little off guard. I responded to her and made a big deal and both girls thought it was absolutely hilarious, there was a lot of laughing going on that night, it was indeed good. Let me back up, to give you a little more insight into just how good things have been. I will put my disclaimer out, they haven't been rosy or easy, but they have been good. It all started with the best 4th of July of my life, hands down. We somehow managed the parade, a fun dinner of sausages and corn on the cob and tailgating for hours before the fireworks all with both of our children being pretty happy the whole time. Holidays are often hard. We find ourselves celebrating very differently than the rest of the world and often dread it. Two years ago we would have never even tried to take Claire out, she would have screamed, we would have hated ourselves for it and we knew it, so we stayed home, which we also hated but was slightly less embarrassing. I am learning that it really does get better with time. I think that is why I enjoyed our time with Emma and her family so much. Emma is 8 and she has a little sister who is 4, so they are just about 2 years ahead of us. The day before we met up I got an email from Emma's mom. They were on a road trip style vacation and ended up 10 minutes from our home. While I was thrilled that it meant we got to meet up and hang out I must admit that I had the thought, 'who goes on vacation with their two children, for that long and without really knowing where you are going months in advance'. It wasn't so much a judgement but more of a 'you can do that?' I had no idea! When Claire was younger, it was so hard to travel that I think I just stopped dreaming about it all together. I actually remember telling a good friend that I had given up traveling all together in the same conversation that I told her about Claire's diagnosis, that is just as far as I could see. Spending time with Emma and her family was sort of like looking a little further down the road and I honestly think it is going to slowly get easier with time. The next amazing and good thing that we had on the agenda was a birthday party for our friend Avery. She too has Rett and was turning 5. I know her mom pretty well and am so incredibly proud of her for throwing Avery such a lovely birthday party. It was a small miracle that we were able to attend. For starters, they live and hour and a half away from us and on top of that, it was a pool party, at a country club. While that doesn't sound like a bad thing (and it really isn't) it isn't our thing and I knew that it might feel uncomfortable being so far out of our element. We were prepared for both of our children to start screaming within a few minutes of getting there and had a few different exit plans already worked out. In fact, we had a lovely time! We went to a real birthday party, all four of us and everyone enjoyed it. It did help that Katie was there to sit with us by the side of the pool and Chloe didn't crack her head open as we figured would most likely happen. As the party wound down we packed up our crew and headed up to Sacramento where we would spend the night and then see Kathy, the girls favorite Aunt. By this point Jared and I were just beside ourselves with excitement that we had done so much and it had gone so well. That was dampened slightly when Chloe screamed so hard for so long that she vomited all over and again when Claire was screaming as we walked through the lobby, went up the elevator and most of the way too are room. But through this we learned that we are getting better at clearing the hurdles, that a few intense moments don't ruin a day and that when everyone stays flexible, it is way easier to bounce back. Bounce back we did! Claire enjoyed watching motorcycle racing, we went shopping with Aunt Kathy and finished with a lovely dinner at Joe's Crab Shack and a stroll around the old downtown area. I even got to eat my dinner, at the table, at the same time as the other adults!!! Again, something that I hadn't even thought to dream of. So with a belly full of snow crab (amazing!) and two happy little girls, we made the drive home. I couldn't help but think that it is seeing the families that are both two steps ahead of us and one step behind us that really help me to appreciate where we are today, what we have come through and the possibilities for our future. It is indeed good.



A few weeks ago I did one of the hardest things I have had to do so far. I took my beloved DaVinci (the one sleeping on the cat tower) to the animal shelter to surrender him. I had hit my breaking point when Claire was having an episode where she was dystonic and as she came out of it, aspirating on her saliva and at the same time, DaVinci hair balled and Chloe went to play in it. After talking about it for a while, I finally resigned myself to the idea that it really would be better for everyone if he found a new home. I cried more on that day than I think I ever have. As I sat there waiting for my turn, I saw several people going in and out with excited children who anxiously awaited their new pet. It was one of those moments when the reality of rett syndrome really hit hard. I shouldn't be having to do this because Claire shouldn't be having these episodes. In fact, we shouldn't even have been home, we should have been out at the park or the beach, but we weren't. The fact is that I have been dangerously close to the edge of insanity. The back and forth of Claire having terrific days all while having these monstrous episodes is really more than a person can handle and stay in their right mind. As I have struggled to not fall over the cliff and lose it, the advice I get has been consistent, take care of yourself. Identifying that DaVinci was taking energy from me that I didn't have was one of the steps that I have taken on my journey of violently fighting to keep my sanity. While it was a hard thing, it was good. Recently Athena, our other cat who loved Claire very much pushed me harder than I could handle. We had kept her as she is so loving to Claire. If Claire is upset, Athena will sit next to her and just wait for her to feel better. Claire has gotten so good at reaching out to feel Athena's fur, which in rettland is a pretty amazing feat. However, she has taken to sitting on my pillow at 5am and yelling for food, this coupled with shrinking patience for Chloe, we felt it was time to say goodbye and let her go find a new home. I talked with Claire about it and to my surprise, she lit up. I am pretty sure it is part of her plan to get a dog as she knew we couldn't get a dog because of the cats. (It will be a few years before I am ready to entertain the idea of another pet with legs.) So today after our fun trip to the aquarium, I put Athena in her cage and headed back to animal services. I turned on the radio and Tubthumping came on. It was perfect. It is an anthem proclaiming "I get knocked down but I get up again. You're never gonna keep me down." I might keep getting knocks that I am not expecting, but I am going to keep going. I am going to continue to fight for my sanity and enjoy my days. I have to say as hard of a decision as this was, it really feels good. I am in control of some things and I think that I am making some good decisions with those things.