4.30.2010

Sweet Silence and Glorious Noisiness

Wednesday night I was allowed the supreme pleasure of cooking in silence! The girls were down and Jared was at church for a class, so I had a quiet kitchen all to myself, it was amazing! One of my favorite things about cooking are the sounds of all of the food in process. There is a distinct sound of cutting through mushrooms that I am particularly fond of as well as the sound of bacon crisping in the oven. To make this sublime experience even better, I was cooking for other people. We have a friend with a 2 month old baby and a very ill wife so Jared had offered to provide dinner for them. I had also volunteered to provide everything for gluten-free pizza's for the cooking class at Claire's school. I finally had a moment in life just like I had dreamed it would be, before I learned just how special Claire is. It took nearly two years, but I got it. The transition process into school was really hard for us. There was a lot of frustrating testing, people who didn't have a clue what to do with Claire, lawyers and quoting of federal law. It was nothing like I had imagined it would be when Claire was a baby. I am sure that this place where it all seems more normal is because I have had some time to adjust. Thursday morning came and I was no longer in my happy, quiet kitchen, rather running around dividing up the previous nights prep into their proper bag while dodging Chloe. I was granted permission (Claire is in a very closely protected autism preschool where there are already a lot of adults) to be there for the cooking class. When I arrived Claire was the first one at the table and she was sitting there beaming. Sandra, one of the most amazing aides ever!, led the group in each making their own gluten free pizza. Getting all of the kids to do this is quiet an accomplishment and in the process there was a lot of activity (it was a lot of noise). Of coarse with so much going on Claire was totally overwhelmed and to protect herself fell asleep before the pizzas came back from the oven. Poor little thing never got to eat hers, but she did get to smile so proud when everyone thanked Claire's mom for bringing pizzas and I got to feel like I have a typical life.

video

4.24.2010

I think most of the problem is that she has Rett Syndrome

I sit here on yet another beautiful sunny Saturday, windows open and a gentle breeze that fills the house with the sweet smell of the forest. So why is it that we aren't out having a ton of fun and enjoying all that is available to us? After Jared got home from his ride earlier this afternoon I had a meltdown. Neither of the girls had fallen asleep and they were both very tired. Claire had gotten so upset that she wet her pants that I had to put her arm splits on to keep her from biting herself, needless to say, I was at a low. I was ready to move our bed into the living room so that we could divide the girls into separate rooms. We live in the Santa Cruz area, people have done things more strange. Jared talked me down from moving the furniture immediately and let me cry myself to sleep, a real luxury as I typically just have to pull it together and march on. Twenty minutes later I woke to nothing but the sounds of a giggling Chloe, Claire had finally given in. Jared being the super dad that he is was just starting Chloe's dinner so I was able to take my time rejoining the world. As I got myself together I thought of how it was when Claire was little. My mind wandered to her time as a baby and the fun we had. She would get all dressed up to go out for a walk. She loved to laugh and play and be silly, granted she does now to, but it is different, it is exhausting. I started talking to Jared about how hard the weekends are and that is when I had my epiphany "she has Rett Syndrome", duh! I've been a little down and hard on myself that we have such a rigid and monotonous life. Then I remembered why, if we stray from our structure and routine it is exhausting because of all the extra stuff that Claire has from Rett. I am just amazed at what a relief this revelation was. I've heard the saying 'it's hard to see the forest from the trees' seriously! I have been to close to Claire, trying to make it all work that I forgot why it is so hard, because her body is really fighting against us. I love her sweet smile and all that she brings to my life, I'm just tired. So we got take out tonight. Claire loves the Smart car so she went with me. On the way home her hands were really going so I rested my arm across her lap to slow them down. She then, for the first time in 3 years squeezed my finger and looked at me with the sweetest smile. I feel like it was her little way of reminding me that she is fighting the Rett Syndrome too, that we are a team working together against it.

4.22.2010

The Sweet Sound of an Adult Male Voice


The day finally came, and two weeks early! Yesterday Claire's Eco2 with EcoPoint came and we immediately got it set up. Well, we at least got it turned on and her page set loaded. Claire loved just playing with the pages and checking things out yesterday. She went through several letters of the middle of the alphabet and was very impressed with herself as was I. The other thing that she kept saying was "put silly hat" just like she had when we did the trial in Dec. So I dug out the hat and had it ready for the morning. I wish that there were words to describe the sweet look on her face when we went in this morning, it was better than Christmas! I had positioned the device on the table so that she could talk while I fed her breakfast. Immediately she navigated through 3 pages to get to her music and she selected "Rockstar" to play. I have read about how this whole system is based on muscle memory but I had no idea that the map would be right there for her! This is what she did every morning during the trial, of coarse she did it right away. I gave her a choice of color for her outfit and after a bit of thinking, she chose purple, not too much of a surprise. She then reminded me of her silly hat. I just can't say how sublime it is that we have this and she can use it in such simple and practical ways. What 4 year old doesn't want to have a say in what they wear? I sometimes give her the choice between jeans or a dress, or two different t-shirts. But this has so much more potential! I think that the first programming order of business will be to make a morning page where she gets to pick colors for clothes, hair style and have options to talk about the day. I did already get her a female voice "Crystal" is the name and I slowed it down just a bit so that we can hear everything that she wants to say.

Chloe Loves Her Blanket














It might not seem like that big of a deal, but it is so exciting for me! Chloe will frequently go to her crib and reach in and pull out her blanket which she then plays with and drags around. Typically she sits on it as she reads her books, it is just too darn cute! I am so grateful for the fun and joy that she injects into life, Lord knows I need it!

4.11.2010

The Reality of it All

Isn't it funny how sometimes separate events in life all seem to work together. Yesterday we had the chance to go down to our friends house and play. They got chicks for Easter and Claire was just in love with them! Our friends also have an amazing little girl Leah who is almost a year younger than Claire. Of coarse things couldn't go too smoothly, after playing with the chicks Claire got very upset about something and the demon version of her took over. I sat there on the couch restraining her as she screamed and cried. We had been there less than 15 minutes and I was ready to leave. By leave, I felt like I was ready to leave not just my friends house but the outside world altogether. I hate that Claire does so well in our stable little environment but I know that it is not good to allow her to just stay in that security. We worked through it and I am so proud of her, after a bit of screaming she started to regain composure and we were able to have a lovely lunch eating pizza and green juice with Leah at the princess table in their kitchen. As we sat and I fed Claire, Leah would talk about all sorts of things. She was calling her mom on her play cell phone, reorganizing the jewelry in her purse and explaining how she liked The Cat In The Hat. Leah is just too precious! She gathered all of her treasures into a big bag and took them into her room to play with Claire. They dressed up in fancy Ariel dresses to wear as we read Cat In The Hat. As my friend Jess would read the story, Leah would interject the words that she knew as she has memorized the book in its entirety. We had a really nice time! So why did I cry most of the way home? After being around a typically developing child my mind wonders. I think of what silly things Claire would say if only her body would let her. What objects would become her prized possessions? Later that night after the girls were down I started to look through all the pictures that I just transferred from my old computer to my new one. I found pictures of Claire before her regression. Oh the pain of remembering when she would sit and feed herself, when she would crawl like lightening to avoid pj's after the bath, when our life was "normal". It was a lot of emotion for one day. I sobbed and sobbed and eventually fell to sleep in the early morning. I did pretty well in the morning, I was able to hide the tears from the girls. Then it was time for church. I knew that the topic today was the into to a series on pain and suffering which oddly enough, isn't a subject that I have ever struggled with. Dan did an amazing job handling the delicate topic. One of the things that he touched on that really caught my ear was that what we do have is a choice, that pain can make you harder or softer. It was then that I felt so validated, that my tears won't be wasted. I know that years ago, I was really hard, through this process I am slowly getting softer. As I sit here and type, I breathe a huge sigh of relief. I got through this round. The reality of the situation is that there will be many more rounds like this. I know that I will get through them all, somehow (I'm guessing by the grace of God). I know that the next few months will be particularly hard for me as I am entering the world of Chloe doing new things each day that Claire has never done and might never, so please forgive me if I sound a little down in my posts. I am going to be fine, it is just a very challenging (and super wonderful!) period for me.

4.09.2010

And We're Back!

Wow! We've been to Arizona and back in the last week and it is so good to be HOME! Many would consider Arizona to be home as we both lived there for the majority of our lives, but no. This trip made it ever so clear that we are where we belong for now. It was a pretty uneventful trip. We didn't go to any hospitals which was a very welcome change. Jared did throw Claire's lunch in the trash can, before feeding it to her, then had the pleasure of retrieving it so she didn't starve. We managed to see some friends and family and squeezed in some fun here and there. One of the absolutely most wonderful things was my parents dog Maggie. Let me be honest, I don't like dogs, I am not a dog person, never have been. We own two cats, because I don't like dogs. Enter Maggie, of all the well behaved dogs that are out there that might change my mind, she isn't on the list. Maggie is more of a grand-dog. My brother rescued her from a bad situation and then was working to much to keep her, so my parents got her still as a puppy. Technically she has been to school and my mom is working on discipline , in a you can do mostly whatever you want sort of a way. So we get there and what does the dog do, jump and lick and jump and lick. Here is the kicker, Claire loved it! Not only did Claire love Maggie, Maggie brought things out of Claire. Her hands were so quiet, her smile so wide, her spirit so calm. The first dinner I am pretty sure that Maggie managed to lick Claire's face after almost every bite that we fed her. Claire was in charge of taking her for walks while we were there and she loved it. We also took two trips to the dog park where Claire practiced walking and petting the dogs all at once. It was amazing at how regulated she was, which is really hard to do while out of town. As much as I love to say how I am not a dog person, Claire has changed my mind. Funny how she tends to change my mind on a lot of different things that I thought I knew about, but that is a whole new post. The drive home went much better than the drive there. I think that it helped that we didn't let a sippy cup get stuck behind Chloe's back like we did on the way there. I think that the hardest part of the trip was that we didn't get to leave Rett Syndrome at home. Vacations just aren't as fun when you have to bring all your baggage with you. Don't get me wrong, I love Claire exactly how she is. At home we have lots of systems in place to make her life as easy as possible. Take all that away and all the sudden you start to realize how hard it all is. So I guess we will just be stuck on the Monterrey Bay for a while, which doesn't seem all that bad at all!