The Beautiful People

Today was supposed to be the first day that Claire got to go to her inclusion class for an hour to start the day. Unfortunately, her aide that was trained for it couldn't be there today so we postponed the start until Tuesday next week. Side note, this works out well because Captain Awesome and Miss Amazing completely forgot to set an alarm and woke up an hour late today. When we decided to postpone yesterday, we completely forgot to tell the new teacher, Mrs. J, oops! So this morning I get an email from her, asking where Claire was, understandable. She also added that she wanted to be notified so that she can not make extra copies for Claire on days she will miss, today it was one piece of paper. I have to admit I was a little irritated by this. I have a sort of full plate, sometimes I miss things, I am after all human. So I responded and explained what had happened and offered to stop by after school to pick up the missed activity. Claire was very excited to show me her new classroom, she is over the top excited about kindergarten! The teacher gave me the activity and explained it. I verified that really, really, Claire is planning to come to class on Tuesday. It was then that the teacher politely reminded me that Claire should arrive at 5 minutes before 8 and that she is very strict about students coming late as it is very disruptive. I have to admit, at first I was a little mad. I have to drive 15 minutes to get to school and traffic is randomly very heavy, adding an extra 10 minutes. Claire has to have her meds in the am, stretch, walk, eat and get dressed before leaving for school. It is a miracle we make it on time as often as we do, on average about once a week. I really felt like this teacher had no appreciation for all the stuff that I have to do for this little girl, just to keep her alive and sorta well. Then it dawned on me, Mrs. J is no different than I was 4 years ago, back when I had a healthy 1 year old little girl and no idea about people with disabilities. My next thought was one of those huge, mind bending thoughts, that really made my brain stretch. She is treating Claire like all of the other kids, isn't that what I want? With that, both my brain and my heart exploded. This is real inclusion. The teacher is putting the same expectations on Claire and her mom as she is the other students, what an honor. I guess I figured that I would always have to fight for Claire, that people suck and don't get it and that life would be an uphill battle. I am so deeply humbled as I stand corrected. As I have been soaking in this idea of respecting other people enough to assume that they are not being disrespectful or malicious, I was hit again. Mrs. J replied to an email that I had sent. I had written a letter to go to the new classmates and sent it for approval. Her response was that it brought her to tears and that she would send it home with the students. She also invited Claire along on a field trip that is being planned for December. The class is going to the children's discovery museum. There is a visiting exhibit called accessAbility. She wrote "The concept is that kids can get an experience of what it is like to live with a physical difference and explore the similarities and differences in the ways we each participate in the world in." All I can think to say is wow, I am truly blessed. Claire is surrounded by a lot of really beautiful people. Looks like with my whine and cheese, I'll be having a big helping of humble pie too!

Ah, November at last!

Don't get me wrong, October was a lot of fun. It was just a lot! My poor little brain is still pretty sore from just how much was in October. It was mostly highs, with a few lows, it was just a lot. I am so glad that November has come, Thanksgiving has always been my favorite holiday and I find the transition at the end of fall to be remarkable. The last three Thanksgivings have been the exception. The last meal that Claire fed herself was Thanksgiving 2007. Ever since then, I have had a hard time even thinking about it. But Claire is doing so well right now, after the huge success of the birthday and our first year of trick or treating, I am thinking that we are on a role. It also helps that Chloe is coming into her own, for lack of a better way to say it. She has given good balance to our family. Chloe has also taken me to new levels of exhaustion as I struggle to balance making everything super accessible for Claire and out of reach for Chloe (certainly a battle I will forever loose). As the wind dies down and I attempt to savor the season and all of the wonderful that my life is, it is hard. I don't mean that it is hard to savor, I mean that life is hard. I am wrestling with the concept of living in a storm forever. Of coarse there are good days and bad days. But the good days aren't easy, we just smile and laugh more. So the question swirls in my head, how do I live in a storm. I have heard "Life's not about waiting for the storm to pass, it's about learning to dance in the rain." and I hate that phrase. It is cute and if it gives relief in a hard moment then great, honestly I love rain, the thought of dancing in rain makes me very happy. But storms are hard. Feeding Claire for at least 90 minutes a day is hard. Balancing everything that it takes to keep Rett Syndrome from eating her alive is hard. Trying to be something more than a caregiver is hard. I think I am getting to a good place where hard isn't bad, it is just hard. My hope is that I can take that, and enjoy the beauty of my storm. Much like the monsoons that I grew up with. There was awe inspiring lightening that would fill the sky. Water would blow so hard it would go under the doors, trees would blow over, cactus would be uprooted. It was such a demonstration of beauty and power. It was great to take in, but putting the yard back together was sure a chore. Replacing roof tiles, getting the furniture out of the pool and so on. I see the next few months as a bit of a monsoon for us. It comes around the same time every year, is fairly predictable, there is always wind and lightening and a terrible mess. That is what my life feels like on Rett Syndrome, a monsoon. However, I have learned that if it starts to hail, I will not put on my swim suit and go dance in it. Yes, when you live in Arizona weather really is that exciting, and I was young, but I learned my lesson.

October 24th

For the last 4 years I have hated October 24th. 2006 I was traveling home very ill after doing the Nike 1/2 marathon for my mom, who I thought was dying (Oct. 24 is also her b-day). 2007 we had just gotten the diagnosis. 2008 we were just starting school and in iep hell and a huge legal battle 2009 Chloe had started to shove in my face just how not typical her sister was. Aside from the 1st birthday, which I was required by grandparents to, I haven't done a real cake for Claire. It has been a friend or a small dinner party, but nothing really for Claire. 2010 was our year and I am hoping that this is just the start of the birthday celebration that just gets better every year! It was more of a long birthday weekend than a "day". It started after horse therapy on Friday. Our ABA conveniently canceled so we got to go to lunch with my parents who had just flown in and my cousin who was in town for hockey. We ate at The Counter and Claire got a milk shake and french fries (can you tell we are trying to fatten her up?) this was huge considering she typically gets organic whole grain pasta with grass fed ground beef, kale, eggplant, peppers and tomatoes. Saturday morning we did our usual trip to Verve for coffee, but Claire got a special treat, a whole cup of whipped cream sprinkled with chocolate shaving. Then we were off to the mall for shopping with Nana and ear piercing! A few weeks ago Claire announced "My birthday is October 24th presents earrings" how could I not give positive reinforcement to such wonderful and clear communication! We had a lot of fun shopping, she is very good at picking out clothes. Later Saturday we chose to open presents and then watch a movie before bed. Sunday was the actual birthday. We slept in a bit, played wii bowling and went out to breakfast all bundled up for the rain. I don't know why I am so consistently shocked, but Claire does so well eating out. She had a quesadilla with peppers, onions, mushrooms and some other stuff that looked really good, and she ate it up fast! A little later we did "the cake" which was a pretty big deal. Not only did she get a real cake, we hooked up a switch to the fan so that she could blow out the candles. So we ended up singing close to 5 times, just so she could keep blowing the candles out, it was such fun! For the final birthday feet, Claire took in a tray of gluten free cupcakes dripping in purple and yellow sugar crystals, the closest thing to glitter that I could find. Her class had a huge party for her and even gave her a present of a little toy cat to hold on her lap (it is super creepy but she loves it!) and some hair clips. All in all, I think that 2010 will go down in the books as a huge success!

HibOO d'Live : Mumford and Sons "Timshel"

Third time's a charm

Jared and I have always enjoyed music. Before we had kids, we enjoyed a lot of concerts. We still like to try to get out when we can. There were three concerts that we had wanted to go to within a two month period. I know it sounds crazy to go out three times in two months, but we were really going to try. First was Green Day. We had last seen them when I was 9 months pregnant with Claire, back when we had no clue that there was anything besides sunshine and roses ahead of us. Our sitter canceled at the last minute and it was the most disheartening process to try to find somebody to sit at our place while our kids slept. For one reason or another, no body was around. At the last minute, our dear friend Tim called to say he could come over, as long as they stayed asleep things would be fine and if not, he was strong enough to handle a full hour of both of them screaming while we rushed home. Sure enough they slept fine. We got to the concert just as they were starting. It was a good show, they were great performers and could really get the crowd going. It was fun, we enjoyed it and went home, tired. The next round was Jimmy Eat World, we couldn't find a sitter at all so I ended up going by myself. Which in hind sight, driving up to the city by myself with a dead cell phone to a venue that I had never been to, maybe wasn't the best idea ever. It worked out well, it turned out that our pastor was in the same box as I, small world! As always I enjoyed there show, it was actually at the exact time that the pepsi challenge closed and rett syndrome awareness month started. I have to say how great it was to hide from that all for a few hours. The music was loud and it was a lovely vacation as it always is. The third show we wanted to see was Mumford & Sons. We had only recently started listening to them and have fallen deeply in love with the album. So you can imagine how my heart sank when the sitter called to cancel the day before the show. I felt like Job as I thought, "Why do you forsake me?!?!" I knew in my heart that God had it and I couldn't see it all, but it really felt like he didn't care much about my need to get the smallest amount of a break. As it turned out, I wasn't all alone. Our friend Chris was able to spend the night at our place so that he could catch an early flight and we got to go without worrying about getting home on time, phew! Finally, third try and we left the house with plenty of time and weren't super stressed out and might even enjoy a show. I am really at a loss for what to type next. The show was amazing! I don't mean amazing in a well produced sort of a way. I mean amazing in a new way to experience emotion and feeling. It might sound crazy, alright, it most likely sounds crazy. I feel like a new person after watching that performance. There just aren't words for the blogosphere to explain what that night did to my soul, but it is good. I figured the best way to explain was to just share some clips I found on youtube. You have to remember that they don't touch the awe so seeing a guy play a guitar and belt out a song while using his feet to control a bass drum as well as a tambourine, but they will show a little sliver of what I saw that night. I am posting two videos. The one titled timeshel is for my rett family. I am forever grateful to have you along this journey. The other is one of my favorite songs with footage from a show. I enjoyed it so I thought I would post, just in case you might too. More to come on the whole feeling and emotion thing.

Mumford and Sons - Roll Away Your Stone

Perspective

Three years ago today the phone rang. I saw that it was LPCH and figured it was somebody to either set up an appointment or remind me of one that we had. You can imagine my surprise when it was Dr. Suttcliffe. She was calling to let me know that the test had come back for Rett Syndrome and it was positive. WHAT?!?!?!?!!!!! You see, three days earlier I had sat in our neurologist office, it wasn't that big of a visit. She had told me that the test for Rett Syndrome was negative and that Claire seemed to be doing well, so we could come back in a year unless we needed to see her about something urgently. So what did I do, what any parent would do, call another specialist for a third opinion. We were scheduled to see genetics in a few weeks, so I called them to be a tie breaker. When they called there was all sorts of apologizing for the mistake, but it was true. She had Rett Syndrome, we could stop searching for the problem. At this point, I had no idea what Rett Syndrome was, none. I had taken the approach of not looking anything up until we had a conclusive diagnosis. So I googled it. The first thing that popped up was the International Rett Syndrome Foundation. I went to their website and looked around a little bit. I remember feeling so deeply relieved, this didn't seem that bad! I read about how they couldn't toilet independently. I thought it wouldn't be a big deal to help her unbutton her pants, maybe we could just go elastic. I had no idea that she would not have the ability to walk in there and sit down on her own, I figured it was coming. The next morning I went to Bible study and shared how overjoyed (DENIAL) I was that the search was over, we had a diagnosis. One of the ladies in our group told me that there was a story about it on the front page of the paper. I thought that surely she was confused. This is super rare, not headlines in a small town rare. I was wrong, there it was Madelyn's Dream. There was a whole gala for Rett Syndrome that week, 8 minutes from our home. We wouldn't be able to go for the dinner, so I emailed the lady organizing it so ask if we could attend without paying if we left before dinner. I think my phone rang 30 seconds later. We talked for almost an hour. Later in the week I got a call from Paige, who had a daughter Katie, as in Katie's Clinic, I wasn't alone. Through the whole thing, every day of the last three years, I have been in awe of the people that I have crossed paths with at just the right time. I have learned a lot about the "system" and how to be in it but not defined by it. Claire has taught me to slow down, to notice the smallest muscle movement when she is trying to help. It has been a very long three years and I am very tired. But I am still strong, not because I am some sort of freaky superhero who feels no pain and advocates relentlessly. It is because I have started to feel the pain, because I know that I will never be enough and that I am dependent on my creator. I know that He has put each of you in my life to help me through this storm. As much as I wish the phone never rang 3 years ago and that it was just environmental and Claire was in regular ed now, I am so deeply honored to have met each of you, my rett family that I am on this journey with. I love you all so very much.

So I guess this is normal

For the last year I have really been trying to slow down and not operate in crisis mode. With everything that happened so quickly after Claire was born, my mom, moving to Arizona, moving back to CA 6 months later, starting early intervention and getting a diagnosis, I think that I felt like I really needed to slow down. Who can keep up at that pace? Then we got in a car accident had a baby and a few surgeries. Then it was summer and then school started with a new team and now we are into IEP season. I keep saying that after the next thing life should settle down. So as I go through the days, just putting one foot in front of the other over and over, I wonder how can I keep up at this pace. Then it dawned on me, as I was talking with a friend about Claire's daily care and the lack of margin, how there is more stuff to work on then there is hours in the day, it isn't going to settle down for a while, a long while. Honestly this thought feels like a big punch in the gut. I really would like to have one of those normal lives where people do things like shower and think about what they want to eat or which book they should read. But it looks like my normal is just different. More of a shower every third day if I am lucky and grab some sort of protein bar to consume as I go to therapy and crash at night normal. It isn't that bad, it just wasn't what I expected.

Captain Awesome

I was going to wait and write this on our anniversary, but I just can't wait. On Nov. 6 we will be celebrating 11 years of marriage. Not 11 years of good times, 11 years of marriage. But I have to say that it feels like the celebration of us has already begun a little bit, and I am really excited about that. In particular, the last few years have been very hard, there were times that I really didn't think that we would ever celebrate 11 years. Rett Syndrome seems to have a way with ruining marriages, I would be a liar if I said it hadn't given us a run for our money. We came up with the name Captain Awesome for those moments that you really do try to do something, but for one reason or another, it just all goes sideways, like putting Claire's shoes on while she is screaming bloody murder and then she can't walk, come to find out they are on the wrong feet, when Jared does it he is Captain Awesome and when I do it I am Miss Amazing. I love our nicknames, it gives us both the freedom to just screw up because our life is too hard, it helps us to laugh at ourselves and with ourselves. Last night Jared insisted that we watch Beauty and the Beast (we just got it this week!) with no kids. That's right, he loves Disney princesses, to the core. Claire has sure left her mark there! So we sat on the couch and had a great 2005 BV Cab (sort of sentimental, we were in napa for that harvest, days before Claire was born) with pizza and watched Beauty and the Beast. Just made me smile, I am so glad to be stuck in this mess with one of the greatest men to have ever graced this planet, I wanted to shout it from the mountain top, but I am too lazy to hike, so I figured I would blog, close enough?

The Pearl

I know that I have been super bad about posting lately, I promise I really am trying, it just doesn't seem to happen. I feel like a huge update is due but it is too much to take on right now, so I will just stick with this little slice of the story. Today, the highlight of my day has been Ducati. Weird right? For many years I have had a love hate relationship with that word. It is the company that Jared works for and it pays our bills, for which I am very thankful. A lot of the time I feel like all the work might not be worth it and that is when I have a more hate relationship with it, but today it is love! Let me give you a little background. Jared LOVES motorcycles. In fact, that is how I hooked him. I was the only girl in our school that pretended to like motorcycles, so he talked to me, and my evil plan worked, a plan that began in 1997. Soon after we married Jared got his first bike and has always had one since then. I have always said that I couldn't be married to him without it because he gets so cranky when he hasn't rode in a while. Enter life, he is at the top of the motorcycle world. In December we purchased the bike that he always dreamed of, 'the pearl'. Jared thinks that he is a pirate and likes The Pirate's of the Caribbean way too much! So he has a blacked out bike that he named after the ship in the movie. He really loves this bike, he takes pictures of it by the ocean he likes it so much. Through this whole little Rett shitstorm it has been his outlet, the closest thing to therapy. So you can imagine the fear inside me when I figured that we needed to sell it. The accident that I was in 18 months ago has been very expensive and we still haven't settled, so we need money. Lucky for me, Jared has been hating his job lately, so he quickly warmed up to the idea. Not only did he warm up, he sold it within days! When we got up this morning, the wire had come through, the pearl was sold. We both felt a huge sigh of relief, happy that the whole thing went so smoothly. I am so proud of Jared! He has really let go and moved on in the healthiest way I can imagine. He is looking into mountain biking and some other things that he could do to get a release, he is even getting excited about taking both girls out for bike rides so I could stay home ALL BY MYSELF!!!! I have to admit I really like that idea. As I have a huge grin on my face because I feel like I have won the battle against Ducati, Jared says he got an email (which are normally Ducati related, back to resenting). There is a dealer in Florida that has an open house every year. I guess he just woke up and thought he would do something super awesome and is doing a raffle and silent auction because of Claire, to benefit IRSF. Wow! I think that the part that has meant the most to me is the wording that was used. You can click here to see the newsletter that went out and the explanation of the event. So now the pearl is gone and Jared is feeling loved by Ducati, can a girl have her cake and eat it too?

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!

Kindergarten!

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!

Searching for Simple

Funny how as life goes on and I have more experience under my belt, my perspective keeps changing. I recently found a blog of a friend from Guatemala. When I was in high school I went with a group down to Antigua for a few weeks. Although that was 14 years ago, still, the memories continue to form me. I was in a group that went to play with the babies that were under weight and waiting for surgery. Short version is that the babies were really tiny because they had clef palette and couldn't have surgery to fix it until they were at least 12 pounds. There were so many babies, the nurses had time to go in circles and change diapers and feed the babies, but that was about it. It was explained to us that the babies would gain weight faster if they were played with. We would sing songs and roll balls, it really wasn't that hard, it was actually a lot of fun. I can honestly say I have such a deeper appreciation for what we did now than I did then. At the time, it didn't seem that important. In fact, the children were so perfect. Their spirits were free and they loved to laugh. Yes, they were all awaiting surgery, but they seemed so content. As a whole, the people in Guatemala seemed very peaceful and content. Sure they lived in houses made of mud with dirt floors, but they were so happy. I actually came back from that trip with a heart that was more broken for America than Guatemala. Sure we can flush our toilet paper and stop and get a can of soda just about anywhere, but on a whole, they are light years ahead of us, at least the area that I was in. On Sunday people would pack into very crowded rooms and stand for hours singing and rejoicing in the name of the Lord. Here we have tons of half full churches that cater to different groups, seems really sad. As I look at the pictures that Judy has put up of the school that she works at, it has stirred such emotion in me. I really struggle a lot with the mentality of advocating for stuff for Claire just because she is entitled to it, it is a very easy pit to fall into. We all compare notes, how much ABA therapy are you getting, who is mainstreamed with a 1:1 aide and how do you get all the equipment for the house. Seeing the pictures of a boy who waited years for a power chair were such a beautiful reminder of the great life that is here and available to Claire every day, regardless of "services". Sure I am going to fight the insurance company and the school, to make sure that Claire's needs are met and that she has access to education. But I will not let it consume me. There is so much perfect life inside her that I need to remember to take advantage of every day.

Summer Time and the Livings Easy

Finally, we have summer weather and I am very excited about it. By summer weather I mean that it was almost 80 today. For me, that is about as close to perfect as one can have for weather. Another perk to the warmth is that Claire has been able to hang out in the hammock chair on our little porch. She adores listening to Dr. Seuess and I love listening to her giggles as she swings and enjoys the stories. This week has been really nice. It all feels like it is working at the moment. I feel really comfortable with life, not like I am being killed by the undertow or stranded on an island, it feels good. Doesn't mean that it has been easy, but I feel like I have what it takes to deal with it at the moment, so I am going to try to stay in this moment for as long as I can.

This is huge!!!

It will be three years in October since we have officially been in the Rett family. I remember the permanence of the diagnosis really hitting hard. Up until that moment, I really thought that she was going to catch up, she was slow, but not disabled for life slow. I was telling a close friend about the news and somehow the topic of travel came up. At that moment, it really felt like I was never going to be able to go anywhere without Claire and honestly it wasn't much fun to go places with her. I was the only person on the planet who could read her. At the time Jared could handle her for a an hour at home and we had a babysitter who could sit here while she slept, but that was it. I felt like my dreams of traveling to Europe to see art that I had studied would certainly never come true now. Really it didn't seem to matter that much, when you think that your kid is going to die, giving up a life of travel isn't a big deal. I am just starting to realize that the day that we got the diagnosis was really the death of a lot of dreams, dreams I didn't even know I had. It has been a very long 34 months and it has flown by. Claire has taught me so many things, there is so much that I didn't know I needed to learn, a true eye opening experience. Fast forward to today, not only am I not the only person on the planet who can keep her alive, she is loved by so many and thrives when I am not around. As I sit and type this I am so giddy and excited for the upcoming weekend. In 60 hours I will be in another state, not because I need to see a surgeon or because my mom is ill. I am going to Vegas because I can! I will be joining up with 9 of the most amazing moms that the planet has ever seen. It will be epic, there is no doubt about it. For me, even bigger than all the fun and community I will get to have, it's a dream. If I can leave Jared home alone for two night with both girls, that pretty much opens the door back up to anything that I can think up. Who knows, maybe in 15 years I will be blogging about the stress of packing for our trip to Italy and wondering what to put on Claire's ipod for the flight.

Organic isn't always pretty, it's life

Tuesday I got to take Claire for her first, and most likely not her last, EEG. We actually had a lot of fun for the most part. Since it was just the two of us we got to take the Smart car and listen to the music loud which is always a good time. We got there early enough to knock out the EKG before the EEG appointment. I am so impressed with this little girls ability to take tests and deal with medical stuff like it is nothing. I am so thankful to Dr. Seuss and Apple, truly the audiobook made it so easy for her to lay there still and giggle while they ran the test. The EEG was a whole different story. The tech didn't get Claire and didn't think that the whole process needed to be explained to me. If I had known what there were trying to do before they tried to do it, I could have helped, but you live and learn. Claire didn't care for the quiet time in the dark room, but for the most part she did well. After the grand finale with the strobe light in her face was done, we turned the lights on and sat pulled the Eco next to her. What does she say? "Light bulb, good" My sweet little rockstar likes the crazy lights. She was all smiles while they tried to get the goo out of her hair and then we were off. She crashed in the car on the way home, such an exhausting morning, I just kept breathing. Still trying to figure out what just happened and how I came to have a life that involves a 4 year old who can't speak with her mouth and needs to be followed by multiple medical specialties. Wednesday was CSA day :-) I love the bounty that comes to us each week from the farm, I am truly blessed to have that available to us. Even as fresh as it is, the food is far from perfect. In fact, because it is organic and they don't use evil chemicals some times the berries are a little squishy and the chard has a few holes in it. I had to pick a small caterpillar out of the broccoli, such a good reminder of how complex life is. First thing is to cut up the strawberries. The miracle of both girls sleeping had happened so I was able to actually think and process as I did this. As I would cut the bits that were rotting off and toss what was left into the bowl I thought (admittedly way too much) about why I cut the parts off like that. Is it because it isn't pretty? Because the color is off? No, it is because I want to protect the rest of the fruit. It just isn't realistic to get several baskets of organic strawberries and not have a few bug and a few mushy berries. A lot like life I guess, but I can tell you that my fresh, organic, not perfect berries taste so much better than the commercialized crap at the store. Kinda like my life with children's hospitals and therapy appointments, oh so sweet! Thursday came and I had the opportunity to tuck some of my lovely food into jars and put it away for the winter. It sure is nutty and I still don't know I got here, but at least this week I am really appreciating my organic experience, the bugs and the beauty. As far as the results from the tests, that is a whole new post, but Claire is alright.

Vielleicht, vielleicht auch nicht

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

2 good excuses why it's been a while

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.

Of All the Things I Dream of Claire Saying, This Wasn't It

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 Love Lab Rats

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.

The Face of Intimidation

Summer time seems to have brought a lot of very interesting things to the surface that involve our little Claire. It all started with our end of the year update on the IEP. Mind you that at home Claire has been saying all sorts of wonderful stuff on her talker and it has made life a bit easier. For example at dinner on Sunday she found a button that said, "I need to go to the bathroom." So Jared took her straight to the potty where he pulled down her DRY pants and then she sat down and peed, AWESOME on so many levels. So I am reading the note from the SLP that says that Claire does not understand the concept of choosing from a category of three to then get to more choices. Right, her talker has 45 icons and she found the page that led to the "I need to go to the bathroom." icon exactly when she needed it. As I read it I am thinking what child are they accessing, this is absurd! I thought about it for a while and came to the conclusion that after almost two years of working with Claire, some of the people still don't get it, aaaggggghhhhhh!!!! So it had become clear that I now need to take more drastic measures. This morning I talked with our SLP that we use for our home, the one who wrote the report to get the ECO2 because she believed that Claire had a lot to say (we like her a lot!). She was wanting to move our scheduled appointment back so that she could have more time to prepare. She was explaining that she wants to bring something in her visits that would help Claire to grow and make progress and she is having a hard time. We spoke about the SLP at school and her IEP remarks. It was then that she made a remark that really got me thinking. She said that it was good that the school SLP was retiring because when people have been at it a long time and they see something that they have never seen before and they don't know what to do it is intimidating. I laugh to myself as I type this but it is so true, Claire is terrifying, in a good sort of way, but still terrifying. We have so many really smart people on her team and people that really want to do what is best for her, but truthfully, no body has a clue, myself included. Poor little Claire. I know that she doesn't mean to scare people. Like when she gets upset because she needed to go potty and we don't make it and she becomes outraged which fades into deep sadness that she just can't do what she wants to. I can only imagine how intimidating it is for her. Every day is a huge mountain to climb, to use her muscles to chew and swallow and practice walking and survive Chloe's hugs. But she does it, and she does it with a big smile and pretty ribbons in her hair. I find myself renewed in my fight for her. I realize that most of the therapist she will ever work with never really know how to help her and will be overwhelmed by the many dimensions that is Claire. But I will help them to think that they can do, help them to understand how she works. And I know that all of it will be worth it, that the investment in Claire will always yield far more than I could ever dream of.

June Gloom

I have never been a person who really likes summer. I like to work, as a kid I liked being in school, I know, I'm a dork, but I'm a smart dork ;-) Anyway, I am so excited because I am enjoying summer. Maybe it's because the sun doesn't come out until after 11 most days and the high is about 79. This morning during my walk I couldn't help but notice the intense colors of the flowers. One of the things about they gray is that it makes color really pop. Wow, if that isn't a metaphor for my life! It is so true. Chloe is now doing things that only in my wildest dreams can I imagine Claire doing, and it is great! That was so hard to get out, deep breath. I am not sure what it is but I am really reveling in the greatness that is Chloe this week. She is so cute, so vibrant and absolutely amazing. I have found myself standing back and just enjoying as she gets her jacket and her purse and heads to the door when it is time to go get Claire from school. I do think that part of why I have been able to enjoy her is because Claire has let up a bit. Last week was long and painful, it just was. No school is no fun for our family. Now that Claire is in summer school her laughs are full, her smile is bright and my load seems a little lighter. So with the balance of shorter work days for Claire we are able to squeeze in a little more fun and still be rested enough to have it, it is great! I should say, it is great on the days that it works. Today was one of them and I am hoping that tomorrow is too.

10 Reasons That I Love it Here

Not a top ten, just the order that they came to me.
1. The trees immediately outside our apartment are amazing! Big oaks and pines that look stunning in rain, fog and sunshine.
2. The Verve Coffee Roasters. Often when I go in the morning the air is filled with the intoxicating aroma of coffee that is being roasted, which I have to say leads to an amazing cup of coffee to start my day.
3. Jess and Rachelle. My awesome friends that met me for a walk this morning so that I could kill time with both girls in their strollers (I can't do this by myself because I can't push two strollers at once). Not only does Jess push Chloe for me, Rachelle's "bunny" (tiny fluffy dog that runs in circles) licks Claire and makes her smile and we gab about silly things the whole way, making me feel like my life is completely typical.
4. As Chloe waves at random people over the coarse of our walk, people wave back and applaud her friendliness.
5. When Claire screams for a good 20 minutes straight because there is no potty around nobody glares at me like I am a bad mom. When I say scream I mean so high pitched that I have a kink in my neck from holding my ear to my shoulder to protect my ear drum during this event. I had to hold her arms down to keep her from biting herself. Somehow the passers by managed the perfect balance of an empathetic glance with just enough compassion but without staring.
6. The surfers here are awesome! Not only do they make good eye candy and are fun to watch, as Claire gained composure and we trying to walk again, one of them shouted out to me, "We have kids too, we understand!" I replied that she was just pissed off because she can't use her hands or talk for the rest of her life. Then I had the thought, that totally aside from Claire having Rett, this guy wanted to take a minute to tell me that all kids get out of control, once again reinforcing my sense of a somewhat normal life.
7. The smell of pot that I often encounter along our cliff side walks. Don't get me wrong, I am not a stoner, in fact, somehow I have never smoked anything. Having grown up in a culture of busyness and work, Santa Cruz is a drastic change of pace that I am learning to appreciate. I love being in a place where being busy isn't the end all, rather sitting on the beach doing nothing is.
8. I am throwing a baby shower for my friend that is adopting a 15 year old boy. I love being in a place that is filled with amazing people. Not only are they doing it, it is a huge happy celebration thing, so I am throwing the baby shower, how cool is that?!? I am so excited!!!
9. Jared can go on a ride after the girls go down and visit not one, but two amazing light houses.
10. The hammock swing on our porch. I can now spend hours on end doing nothing other than sitting in our hammock swing (that we got for Claire) and listening to the wind in the trees and the traffic on the street.

I'm a Good Mom, Really

Let me start by saying I am speaking more to myself in this post than I am to all of you reading this. It all started when Claire's SLP told me that I am a good mom last week. She went on about how I advocate and work with the school, blah blah blah. I had the thought, why is it that I have such a hard time accepting such a nice compliment. The answer was obvious, because down deep, I don't agree. I think it is easy to be critical of yourself, it is what our culture promotes. Having a daughter with Rett Syndrome seems to have created endless possibilities for the guilt and self doubt. When Claire starts leaning one way more than the other I say that I need to get it together and make sure that she is getting a solid 20 minutes a day of stretching. I blame myself as she slowly looses some skills and don't allow myself to take credit in her victories. Today I find myself at the crossroads of the end of school and summer, cue the extra load of guilt that I typically dump on my shoulders at such a point. Everyone else is out having fun, going to the beach or doing whatever. I can't leave the house with the two girls by myself because it isn't safe at this point. To add to that I can barely stop crying because I am either thinking about the two little girls that recently passed who are younger than Claire or I have some how missed reading Claire's mind and now she is deeply upset and once she stops screaming she starts sobbing because she hates Rett even more than I do. Despite this all, I have decided that I am a good mom. I am a good mom because I haven't given up and quit. I might have given up on certain tasks, but as far as the big picture goes, I am still fighting. Even if all that looks like is setting a goal of trying to make it another 30 seconds before I loose it and get frustrated, I am still a good mom. I am not sure how I got disillusioned into believing that in order to be a good mom your kid has to be making progress or doing something fruitful, but I can say that I am choosing to not buy that anymore. There, I said it, "I am a good mom just because I am trying". With the recent deaths in our community I have seen a lot of mom's struggling with the whole mess of emotions that comes with Rett. I really want to encourage you all to join me in believing that you are good moms, because you are.

Holy Emotional Rollercoaster Batman!

I think that I should start by saying that it has been quite a day. It began with a super giggly and happy set of girls that were ready to take on the day at 7am. We got Claire to school on time and Chloe and I were headed to the grocery store then to the park to play with her boyfriend Lucas and his super awesome mom. Of coarse nothing is that easy. Chloe threw a fit at the checkout just as the air kicked on and instantly I was in such pain from my Chrone's. I kept breathing and made it to the next moment only to find myself at the park. We were actually early (it was my one for the year) so I got out the snack trap for Chloe to eat her cereal from. She wasn't able to get her fingers in there to get the food, something she was able to do a week ago. Immediately I am worrying that she has Rett Syndrome and this is the start of the end. Then Lucas arrives, we put them on the swings and immediately Chloe is back to being a completely normal little girl, she even climbed up the slide before going down by herself. So I am stable for awhile, boring life as normal. On our way to get Claire from PT Chloe is chatting up a storm. Of coarse, the obvious reaction is to cry your eyes out when this happens. All I could think of is how sick I was when Claire was this age (really, really sick, temp. of 103 for a few months, Chrone's is so awesome!). I know that she babbled and had speech that was lost, but I remember very little of it. I gather myself together to go in for the end of PT. There is Claire, workin' it in a new gait trainer and loving it! Then her buddy Abby showed up and this is when things went into the realm of absolutely amazing. Abbey and Claire were in Music Together together back in the day. Abbey has gotten so much stronger and and just lit up as Claire walked over to see her. It was a moment that I would never have believed 2 years ago. It was the picture perfect therapy session! Claire came home grinning from ear to ear. The nanny comes, I run a few errands, nobody sleeps and now it is dinner time. Claire starts to vocalize so I run in and put her on the potty, which was apparently not what she was complaining about. She got so angry and was writhing with anger. I was so frustrated! I put her in her bed and told her that if she could calm down, I would turn on Dr. Seuss. It was then that I figured that she was upset because the audiobook that she was listening to finished without replaying, duh! She calmed, listened to the Fox with Socks came out to have lots of fun with dinner and even peed on the potty before getting into bed. With both of the girls down for the night I clocked out and it was time to work on our dinner. Earlier in the afternoon I had learned that a third angel this week was on her way to heaven. I chose to lay in bed and cry instead of cook dinner for Jared and I. This left me with the far less daunting task of takeout. As I drove I thought about it all. This is it! My life, my organic experience. Today encompassed the most pure joy as I watched both of my girls at different points in the day. I also was at a low as I sobbed in the middle of the day, trying not to think about how easily it could have been Claire that left too soon. Through it all the most amazing and truly beautiful part is that I was alive and felt through the whole thing. It might not be neat and pretty, but it is what God has given me, and I am grateful.

So This Is What It's Like

I am so excited to announce that I have had a run in of a typical nature with Claire and I am so excited to tell about it!!! Tonight I was feeling a little lazy so I threw some chicken in with brown rice and teriyaki sauce for dinner. After a few bites Claire said "want else" and I informed her that this was her only option, that the fridge was empty (not really a stretch). She then said "all done" and I told her no, she needed to eat. As she drank her milk she some how got to the fast food page. Then the order was clear "tomato tomato tomato". All I could think about was how Judy had talked at length about how when a girl with Rett hits the same thing over and over, she is not perseverating, rather driving a point home. So I go to the fridge and get the bottle of ketchup and explain that it is mashed up tomatoes. She likes it so I add some to the bowl, she eats two bites and stops again. This time she says "small appliance hot" Of coarse, the ketchup was cold, so now the rice was too! So I heat it up and she ate a bit more before saying that she wanted a "cookie". I was so happy to play her game because it was what I imagine "typical" kids do to their parents. It is a huge relief that Claire's weight is up a bit so I don't have to be in the position of desperately needing her to eat, like I have been for the previous 4 years. I love how ironic this device is for me! First I go to great lengths to give everything she says with it meaning so that she is motivated to talk with it. Now I have her commanding me like I am a little toy solider. It took so much work so that now I can do the work of normal life, but it is glorious! The smile on that girls face when she is bargaining with me is priceless and I am so thrilled that she has the ability to do it. I just pray that I can keep that same spirit with Chloe. She is babbling a lot and has three words now, something in my stomach tells me that the next word will be no, not sure I am ready for that yet!

Ain't No Mountain High Enough

It was a whirl wind weekend, but it was fabulous! Going to Colorado and back in less than 60 hours was a pretty crazy thing to do, but I am so glad that we did it! The weekend was packed with lots of opportunity to listen to some really remarkable people talk about Rett Syndrome and it's many facets and what we can do as parents to help. It is way to fresh to know what we heard in much detail. I am hoping that after I sleep for a few more hours my memory will come back to me. I have noticed that I am talking funny now after being at the conference. For example, we stopped at Chipotle on our way to the airport after a very long day of listening about lots of super important stuff. They were having happy hour, if you buy one Corona they give you a second one with chips and salsa for free, sold! Jared and I both stick our limes in and in the moment that you normally tip the bottle slightly to mix up the lime, I completely spaced out. If you do that for too long, you make a beer explosion, which I certainly did. But what was the first thought, clearly my synapses are not firing correctly and I don't have an established motor plan for this (lately I have been sticking to North Coast Brewing= no fruit in beer) so of coarse there was a significant delay. Jared tried to tell me that he has communication apraxia and that when I tell him something that he needs to do, it only slows him down, clearly we listened way too much at the conference. On a caretaker level it was nice as I felt like it was way more affirming than Chicago was two years ago. We are actually doing some things right, who knew?!? Claire had the honor of getting her picture in Dr. Jone's presentation about an enriched environment and Judy Lariviere shared a story of Claire's recent success with her device with the one of the larger groups that she spoke to. There are plenty of things that we learned that have us fired up to tweak or change for Claire, but really I need to sleep before I can try to remember what any of those are. What is fresh and in the front of my memory are the good times that we had with friends, both new and old. I did feel a little odd when I met one mom that I knew through the blogosphere for the first time. As she would tell a story I could interject details because I had read her blog, awkward! But the coolest thing about Rett families is what would normally be an awkward conversation isn't. They get how much the 3rd birthday sucks and the stress of a nap that goes too long or feeling like a failure because you didn't realize how much pain your daughter was in after a fall and the crazy stress of super complicated hospital bills. They are normal just like us. That's right, you read it right, normal! Because in Rettland everyone worries about seizures and weight gain and it is normal, and honestly, I like it there. Of coarse if there was a cure I would leave in a heartbeat, but so would everyone else. While we were gone the girls had a tremendous amount of fun. We surprised Claire with the game Pretty Pretty Princess once we were gone and from the pictures that were taken(at the top), it looks like she enjoyed it! From the looks of the pictures Chloe had a good deal of fun as well. Then again, when has she ever not?

Memorial Day Will Never Be the Same Again

Two years ago I was preparing to fly out to Chicago for my very first IRSF annual conference. My grandmother had just passed and I had to choose between going to the conference and her funeral. As I think about preparing (because I still don't leave for another 24 hours, way to early to pack and get ready) for the conference this year I have been thinking about that trip and how weird it is that I am going to another one. I am thrilled and very excited to be going. I look forward to seeing some of the faces from two years ago as well as ones that I see more often, only this time with no kids! I constantly struggle with feeling like a complete failure in the mom department as Rett Syndrome is just so darm complicated! I know that I will learn a lot about some of the topics that I second guess myself on and that will be a huge help in our daily life. At the same time I imagine what we might be doing if we weren't going to a conference on Rett. Perhaps we would stay close and steal away to the city and eat at amazing restaurants that kids wouldn't appreciate or go down to Disneyland all by ourselves. But we are going to Colorado because our daughter has Rett Syndrome and we need the help, support and encouragement that is there. It is so crazy to think that two years ago I sat listening to Judy L. talk about access to communication and how many girls are given very large switches and that many can use a smaller switch. I also heard Susan Norwell talk about literacy. Once I got home I ordered a smaller switch for Claire and started working on communication. Now she has a full blown eye gaze system that she used to tell me that she wanted earrings the other night. I don't remember a lot of detail from that weekend, other than that I was completely overwhelmed. It was good that I went and brought back a lot of materials that helped Claire's team to work with her. It was truly a surreal experience. And now we are going again but under such different circumstances. I can't believe how much easier (sometimes it doesn't feel like it) living with Rett has gotten. Some of the initial shock had worn off and Claire is teaching us every day about living in a body that she can't control the way she wants to. The conference is over Memorial Day weekend each year in an effort to make it easier for families to attend. Even thought we might not go every year, we will have the marker of conferences in different years to look back on. This picture is from May 2008, I had forgotten that Claire ever could reach out and touch the starfish on her own. The other picture taken two years later, her pig tails a little longer and her smile a lot brighter.

Because I Can!

It is no secret that I don't put a whole lot of effort into myself. Honestly, this isn't because I am in the trenches of mommyhood with two little ones. I never have been one to enjoy getting done up or other such girly nonsense. A well worn t-shirt, broken in jeans and some old Vans have been my go to for well over half my life. Maybe it is because I saw so many people with make up that made them look like a clown or that I hated the models in the ads because they were too perfect. Somehow I just have never cared about appearances. I must admit that I am fan of lovely purses to go with my raggy jeans, but adding a cute purse to however I fell out of bed is about all I have ever done. I have heard of people spending time on their hair, nails, makeup and so fourth but was never very curious. I have noticed when friends have changed their hair one way or another but really never cared, mainly because I didn't get what the big deal was. Enter my friend Rachelle. She and her husband own a really great barber shop "Rick's" which has lead me a little closer to the whole concept about caring about your hair. I have even gone for 3 hair cuts since Chloe was born, which is pretty often for me. They recently decided to add some basic coloring services to the menu. So they had to train their employees, I guess people freak out when people screw up their hair and it is bad for business. Me being the person who really doesn't care, I volunteered for the training, figuring that if I hate it I could shave it off and it would grown back. So I showed up last night for the training. I think that I might have surprised everyone when I said that I wanted to go completely red, granted I have never colored my hair. The polar opposite side of my keep it as simple as possible side is that if I do do something, I tend to do it big. Like when I hadn't worked out in years then trained for the Nike marathon in San Fransisco. It is a little ridiculous at how calm I was about going red as I sat there with people putting goop all over my head. But now that it is done, I love it! I am starting to get it. Playing with your hair is fun. I am so bad at having fun that I didn't even think that this could be an avenue for some sort of adventure, but it is! I think this might be just the beginning, after getting a little taste of just sitting around and having fun I am so excited to see what else I might come up with. Why, because I can!

Maybe I'm Dreaming

There is a big difference between being a dreamer and an idealist, and I am not a dreamer. I have a rather bizarre high standard that I attempt to hold myself to because I have this ideal image in my head of what I should strive for. I know that ultimately this is not a good trait and have been working on it for a while. But I think I was cheating. In an effort to not constantly be striving for perfection I just changed the ideal in my head, trying to convince myself that in some way that was better. All I did was change the ideal, not the constantly striving part. Along with all of the craziness of surviving for the last while I think I was too tired to even try to reach my somewhat lowered ideal of what I expect in life. I think (the jury is still out) that this is a good thing because it forced me to ultimately let go which felt like a huge load off my shoulders. And when I wasn't looking, I think I might have even had a moment that I dreamed. It is no secret that my life with Claire is often exhausting, both physically and emotionally. I was talking with Jared about how tired I am and discussing our options. One of them is that we could just let her stay home all the time and watch television and listen to audiobooks. That's when it came out of nowhere! I am not going to let her do that because I am going to dream that one day, while she is still with us, there will be treatment, a cure, something that will help. It would be difficult if all of the sudden her body was less restrictive and all that she was used to was getting to lay around and watch Martha Speaks. When my mom had just had her stroke and we were told that she had a few months I remember a family member telling me how she was praying for my mom. That God is a big God and that we can ask big things of Him. Somehow I felt selfish asking for my mom to be completely healed, I was happy to take making it to Claire's first birthday. But I prayed and I tried my hardest to make the biggest "god sized" request that I could. It is that very same concept that I am just trying to wrap my head around again. I know that just because I dream it and just because I pray and ask God doesn't mean that it will happen. It just feels so nice to be able to move forward through today with the hope and faith that it can happen.

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instuments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finially He passes a name to an angel and smiles, "Give her a blind child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a blind child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."

I hope that all of the moms out there reading this had a great Mother's Day, I did!

I'm surprised why?

I think it is safe to say that from age 3 to 4 pretty much all I did was advocate for Claire. Not just for services, but educating friends and family as well. I feel like all I did was try to explain to the world that there was an amazing and intelligent girl trapped in that body. Yesterday afternoon Claire was sitting at the table with her computer and Jessi when I was bringing up everything from my truck. The last thing that I came through the door with was a little potted plant that Claire grew for me at school as a mother's day gift. I told Jessi that it was my gift from Claire and what did Claire say? Without hesitation she went to the page that had "make" on it and said it and looked right at me. I told her how much I love it when she makes things for me, I was so excited that in that moment she had such purposeful communication. Why am I so surprised? Didn't I just tell the entire world that she is wonderful and smart? I am just loving it as she continues to say amazing things. Since she is using her device so appropriately I think that I will now use it to my advantage. Mother's day is coming and pretty much it goes without saying that Jared can't read my mind and so I will be disappointed on some level. So I am going to program Claire's computer with some messages about what I want for the big day. Then I will show them to Claire so she can say them to her dad on Saturday. Isn't that what people do with their normal kids? Tell them key things to say to the other parent. The picture is of Claire using her computer to negotiate at dinner. I say 5 more bites and now she says "less" I should have known that giving her this type of power would make things harder for me, but in the best possible way!

One year ago...

...my world forever changed. It was a surreal experience. I had a great nights sleep, got up with the alarm and took a shower. We had just finished getting ready when there was a soft knock on the door. The nanny had come to stay with Claire and take her to school since we would both be out of pocket for a while. It was a good thing that we had Kim take our picture before we left because we realized the camera battery was dead, that would have been a bummer. After getting that situation squared we got in our little Smart car and off we went to the hospital. You can tell I get admitted to hospitals way to often as I was ridiculously low key about the whole thing. They took me back to where I got to hang out and wait for the big event. Jared took off to find coffee, which is a good thing because he is a lot more fun after coffee consumption begins. Eventually they took me back to the OR where I met, and I am not making this up, Dr. Sharp, who was the guy in charge of sticking the big needle in my back to keep me from feeling. As I sat there waiting to get numb there was the most awful 80's music playing. Don't get me wrong, there was some good music from that period, that was not what was being played. Dr. Sharp had made a joke about changing it to Weezer and I spoke up, please change it, not this. After checking with all of the staff the decision was made and the Weezer playlist started to play. I have to laugh that of all the things that I could have been concerned about, it was the music. I think it was because I was in such good hands, I really had no worries. Now I am laying on the table with a drape up so I can't see anything. Jared and I are giggling because we just can't believe that we are hanging out as the Red Hot Chili Peppers played waiting to hear the cry of the baby, it was really surreal. She came out really alert and ready to go and hasn't stopped since. Truthfully this has been a year more of survival as having two people to feed, diaper and co-ordinate sleep for is really a lot. There has been a lot of moments that seemed just like it did when Claire was that age and that has been a very painful process. I am really excited for the next year as Chloe teaches me all of the things that little people do so naturally. I hear a lot of people talk about all the fun that children are and I am really looking forward to that.

I don't think this needs words