I am not sure why, but lately I have been starting to have thoughts in French and German. I remember when I went to Guatemala I started to dream in German for the first time. I think it had something to do with hearing so much of another language that I didn't understand. I know, it is silly that I live where I do and I didn't learn Spanish, I really should have. So the question has been, why am I thinking in foreign language, that is so weird! The best I can figure out is that my days are filled with checking for the POS from CCS for the Lite Gait and emailing back in forth to coordinate the ABA therapy as well as hippotherapy. Along with that I am trying to integrate a computer that uses lasers to read glints of light off of Claire's eyes so that she can have a voice to speak with. Three years ago, I had no idea as to what any of this was. The plan was to love the child that I had. Not worry about if her naps were as regular as another baby or if she fussed a little in public. I really wasn't worried when she hadn't pulled to stand by 1. The doctors all told me that she would in her own time. Then all the sudden I wake up and I have a 4 year old and a 1 year old. Chloe can feed herself, but Claire doesn't have the hand use to do the same. I know that I have been over it a million times, she has a change on the MECP2 gene at amino acid 133 there is a p where there should be an r. They say this causes Rett Syndrome and that it is a debilitating neurological disorder. Somehow, in all of this , she is just sweet little Claire. I am still stuck on how it worked out that I, a classically trained cook who is really good with numbers became the defender of this little girl with such complex needs. Nobody that we work with knows how to work with her. They want me to tell them what to do, how on earth did that happen?!?! Before my mom had her stroke, I had no idea that there were disabled people out there. I knew that old people needed walkers and parking at the front of the store, but that was it. I feel so ill equipped for this. That must be why I am starting to think in German most of the time. Living in Rettland feels about as far away from normal life as Guatemala, granted it could be worse, it just makes my brain hurt
So I haven't been as good about blogging, but I have such a good excuse, two in fact. First, we moved my computer (I am one of the few with a desktop, crazy I know) from the living room into our bedroom. I had felt like it was too accessible and it was! Moving it out of there has been great. I can't believe how much I love not being online as much. Our pastor spoke last week on patience as a fruit of the spirit. One of the things that he discussed was recent research that points to email and the accessibility of having everything now is leading to people being more stressed and impatient. With the two girls I need all the patience I can get so I am dialing back the technology and I have to say that it has made a difference. Claire naps in my room while I put Chloe inthe crib in their room. That leaves me in the middle with no computer. The first day I took a nap and it was great. The second day I canned the raspberries from the CSA, plotting to bribe all of the people who work with Claire with yummy treats during winter when berries are no long growing and super expensive. So the excuse is, that I just can't get to the computer during afternoon naps when I typically blog. Here is the second excuse, I am really tired from having so much fun! Both Chloe and Claire are amazing and it is summer and I just want to enjoy them. I don't want to think about how hard Rett is if I can pretend it isn't that bad for a little while. I am sure I will be back here soon lamenting the horrors of Rett or stupid people that don't get it, but for now, I am just going to stay focused on having a fun summer. Here are some pics of what we have been up to.
I guess that I should have known this day was coming. In the past as Claire has sobbed after seething in anger, we have talked about how having Rett Syndrome isn't fair. Today Claire has been saying "long" and "hard" over and over. It has been a sort of riddle that we have been trying to solve, what's long, your hair, the holiday weekend. What is hard, uncooked carrots, your sister's head. We weren't getting a positive response on any of our guesses. Tonight at dinner we had a departure from the typical joking and silliness that Claire leads with her talker. It started with "long" "hard" then she added "live" and the light bulb went off in my head. Before I could say anything I else she said "bad". I asked her if she was talking about having Rett Syndrome and she looked me in the eye and smiled her sweet smile. Yesterday we went to see neurology. I talked with the neuro about how we want to be aggressive in working with Claire because I believe that there will be a cure in 5 years. At that point Claire smiled and I casually commented to Claire about how maybe when it is time for her 10th birthday (she had been talking about her b-day with the doc) she won't have to be bothered by Rett Syndrome any more. It has just killed me that since I told her that she has been telling me that she thinks that is a long time. As we talked about this her computer started to freak out and we had to reboot. Once it was back up I asked her some sort of question about being alright and she responded "do" which I took as a yes of sorts. Then she said "they will" to which I replied that they will find a cure. She then went on to tell me she was thirsty and that that I am slow and lazy like normal. It just kills me that all day she only said these two words as she was desperately trying to get what was on her heart across to me. On the other hand I am so grateful that we have this computer and that she had the release of saying that she thinks it is "bad" that she will have to wait so "long" and that it is "hard". If I could only describe the look on her face when I explained how lucky she is to know that a cure is coming and that a long time ago (3 years, even less) girls didn't know that there were doctors working on making a cure, but it was one of genuine concern for those girls. Yet again, Claire has used the perfect word to describe something that I so struggle to grasp "hard".
I remember that when I was young, kids would have pets like hamsters and gerbiles. I must admit I never got it, I didn't see them as cute and still haven't the foggiest as to why you would want them for a pet. In junior high I kept the class snake for a summer and got to feed it live rats, which honestly never bothered me, in fact it was a very interesting process. It has been a long time since I have even thought of such little things. Then in 2007 the world as I knew it blew up when Claire started to regress and was diagnosed with Rett Syndrome(RTT). As I scoured the internet, I found that there was a study that was just finished. Doctors were able to reverse RTT in mice. That was three years ago. Since then Claire has lost the ability to feed herself, hold a cup, to crawl and is unsteady while sitting and often just falls over without warning. Yesterday I had the honor of having one of the clinical doctors that works with Rett research and many of our girls in our home. She was telling me about how the day before that she was in the mouse lab at Georgetown where amazing things are happening. They gave the mice RTT and then an enriched environment and levels of BDNF went up. It is that simple, girls with RTT need more BDNF in their brains and you can get it by working with them. Here is the really super-dee-duper cool part about that. Researchers are working on a cure and it looks like we are about 5 years away. I have to keep pushing and fighting for Claire to get everything that she can in the way of access to therapy and life so that in a few years, when other mouse models all come together and there is a cure, we are ready to get up and dance and Claire will know that we believed in her. In the mean time you have a few different options of how you can help. 1. You send me a check for hydrotherapy so I can work with her in water and hippotherapy so that she can work with a horse to help her body move. 2. You sign on to facebook and vote once for the Chase Community Giving campaign for Girl Power 2 Cure by July 12th. 3. You can vote once every day the whole month of July in the Pepsi Good Idea campaign for Turn Research into Reality. Wow, look at that, I even have link right there on the side of this page. You can click on them and it will take you right to what you need to do. Honestly, I don't expect that anybody would send money because pretty much everyone I know barely has enough for their own needs, and I am alright with that. But really, who doesn't have an extra minute to vote online. I promise that even if you have to wait because the serve is slow or there is some type of technical error, it is way easier than using a computer with eye gaze to talk or sitting and staring at a cup of water when you are thirsty, hoping that somebody will notice. Thank you very much for your help and support. I look forward to the day that we can have a giant party and Claire will be able to get up and dance with, it just isn't going to happen if we don't fight for it.