Imagine

 I am a very left brained person. I excel in areas that involve math and measurement, things that are concrete. I actually met my husband when I took art class in high school, for the third time. Who drops art? I do, because it was ruining my gpa and I hated it, completely left brained. This has never been that much of a problem, I have tried to stick with my strengths, but that is no longer an option. You see, I have a 2 year old, Chloe. Chloe exists, for the most part, in something very far from reality. Some people refer to it as play, make believe or pretend. However, Chloe takes it a few degrees farther than what I believe these imply. For example, Chloe might say that she is hungry and wants a snack. However, when I go to the kitchen she throws a fit and drags me to her kitchen where she makes snacks for the two of us and a few of her favorite dolls and animals. For just over a week I had the distinct displeasure of being referred to as Mother Gothel. Chloe was Rapunzel, Jared was Flynn Ryder (he always gets to be the prince!) Claire was Max the horse and I was the evil mother, lovely. Chloe even referred to our apartment as 'the tower' and would pretend like she had never left it. You can understand why I was excited to find out that the script had changed. Chloe was Ariel, Claire was Scuttel, Jared was King Triton and I was Sebastion, yeah! Since the story line was changing I figured I would take things a little further for fun. That is when I told Chloe that Claire was indeed, a real mermaid and that is why Claire does not walk or talk. Claire laughed out loud and grinned from ear to ear as I told the tale of the day that we found her on the beach, it was fantastic! She often has to hear the real explanation of what rett syndrome is and it was obvious she preferred this explanation for our circumstances. After a brief pause while Claire laughed, Chloe spoke up with a seriousness that was downright different from anything I had ever seen from our little blonde bit of variance. She corrected me, "but Claire talks!" Silly me, how could I be so mistaken. Claire can't be a mermaid, because she does, in fact speak. It was so precious. So we will go on pretending, because it is fun and we can. But make no mistake about it, Claire talks, just only to those who listen.

Valentine's Day, minus the heart attack

Last year I blogged about my Valentine's Day Heart Attack. I am so glad that it has come and gone this year with absolutely no contact with a neurologist, doctor or any medical professional. In fact, it was rather normal. Sure, Claire didn't really eat (rather what she ate didn't stay down) or sleep well on Monday. Tuesday she was a little emotional, but with the help of Natalie the most amazing aide on the planet, we made it through. So here are a few pics from our super average holiday, yeah for average!!!!

Claire stamped her name on all 50, yes, 50 of her valentines

She also got her special valentine friend some super cool stickers for his new ride.

Chloe expressed herself with glitter and glue, there are no pictures from the process due to safety concerns.

While the girls were at school I got to take a walk with a good friend, love that!

Pretty sure that Claire's favorite part of the whole thing was this super cute hello kitty that she got from her friend Josh, between the boots and the tutu, he's got Claire's number!

Celebrating

Have you ever been having a conversation with somebody about nothing special when all of the sudden a simple statement seems very profound. Recently, a friend mentioned that they had another friend who had a child with severe medical problems. They said something to the effect of, "it really changed them". It seems obvious right? Once you hold your child while they convulse and turn blue it does change you. For whatever reason, this statement sat with me in a very profound way. I have changed. Whether I like it or not, rett has changed me. I don't know that I am a better person for it, but I know pain and darkness on a whole new level that I had never conceived of. I now understand why there are statistics with 85-90 percent divorce rates within the special needs community. It is hard to love while you are being changed. It is hard to be loved when you are reeling from traumatic events that involve your child. As I look back I can clearly see a correlation between some of the hardest things that we had to deal with for Claire and the most troubling times in our marriage. Sure, in the moment of crisis we pull together to make it through but the moment that the adrenaline wears off and the emotions start to emerge things can get ugly fast. For us it was the two years following the regression. We joke now that we didn't want to so much get divorced as kill each other. We both dealt with all of the stuff differently and we were too exhausted to be able to think that through, it was a very hard two years. Over the last few months I have connected with a few of you out there that are in the more recently diagnosed category. I just wanted to put this story out there, in the hopes that it might encourage you. There is no way to train or prepare to go through the crazy that rett syndrome takes you through. If you find yourself falling apart, in the dark, hold on. Give yourself the space to fall apart and put some people around you to help pick up the pieces. For us it has been grief/marriage counseling for nearly three years. It took the first year before everything fully unraveled but it did. This past weekend we sat down and celebrated the adventures of Captain Awesome and Miss Amazing. We have both emerged, for lack of a better term, from the throws of the grief and darkness that overshadowed our life. We have been changed and are able to live a life where love can coexist with the pain of holding a child that has turned blue and is fighting to come back. We are ever more grateful for each day and the joys that are within it. We have found that there is so much to celebrate when you come back to the surface. Today our marriage is stronger than ever, our bond closer. We honestly can't believe just how good things are, it been one heck of a comeback. Great comebacks deserve celebrating, so for now, that is what we are doing. Since I am a food geek I will share a pic with you, nothing says celebration to me like good cheese, fresh crab and champagne.

Let It Be

Have you ever had one of those moments that feels like it is in a movie. Something very profound happens, the perfect song is playing in the background and everything happens in slow motion. Tuesday morning I had one of those. We were sitting around the table eating our oatmeal, Jared was just finishing up making his coffee. We were listening to the Beatles and watching pictures from Flickr on the tv. Claire hands stopped moving, she looked at me with that smile, the one that says, "it's coming." Her face started to twitch as I picked her up and held her in my lap. I stroked her hair and started to sing along with the music in an effort to calm us both. As the next song started I realized that it was Let It Be, how profound. As I sat there, holding Claire, trying to calm a body that neither of us had much control over, Chloe alternated between dancing in circles like a ballerina and playing air guitar. All that I could do was just be there in that moment. To not retreat to the darkest places within my soul, where I so badly would rather hide from all of the hard and ugly parts of life. But there is no joy there. I need me to be here, so do my kids and my husband. So it was with that deeply profound moment that I was reminded to simply BE. It is something that I have been in pursuit of for a while. It is easy to get off coarse, to forget, to loose sight of the goal. But this is my life. I have one daughter who stops breathing several times a day and another who dances and twirls without rest. Oddly enough, this very surreal scene in one way confirmed a decision that I had hemmed and hawed over for several weeks. Chloe had been going to school three days a week and I felt guilty for that. Last week I reluctantly signed her up for a fourth day. As a stay at home mom it is hard to send her to school for 16 hours a week. At the same time I know that I need it and honestly, she does too. Her school is awesome and she loves every minute that she is there. It is her special place, a thing in her life that doesn't revolve around rett syndrome and that is a sacred thing. So here I sit, on a Friday, by myself, trying to just be. My pictures aren't as cute without the bright blonde pigtails in the bottom of the frame, but this isn't too bad.

How I do it, again

Last May, the lovely and wonderful Maren did a series on her blog with the theme, how do they do it? I was so excited and honored when Maren asked me to contribute. On the day that I was up, blogger crashed and link died , my post was gone and Maren was in Europe, so there was no trying to get it back. With the start of the new year I was looking back on previous posts and I saw that it had miraculously reappeared, so you can click here to read it, a little late, but that has never stopped me before!

Student of the Week

Last week was a pretty big deal. It was Claire's turn to be student of the week in Mrs. Torrez 1st grade classroom. With this designation came a lot of attention and responsibility. Claire got to lead the class in certain lines, do the calendar, put up pictures of herself on the bulletin board that was all about her. She also got to take care of Coco, the class pet. You can see him here helping out at pt.

A form was sent home for Claire to fill out all of her favorite things so that the class could get to know her. She had so much fun picking her answers and I was so happy to know that the info that I was sending in really was accurate and not just my well educated guess. Then it came time to figure out the pictures to send in and I was a wreck. I didn't want to send in too many or not enough and I haven't seen what any of the other children have done. Claire loves her typical classrooms so much, I didn't want to embarrass her. As it turns out, it all worked out fine. Claire's fantastic aide worked with her to choose which ones went up and there was no embarrassment at all. As the week went on I had a nagging feeling that I should take the opportunity to educate the class about rett syndrome. I kept imagining her peers asking their parents questions like; why is she is a wheel chair or why doesn't Claire talk. Most of them have no clue that she has rett syndrome, more or less what it actually is. How could they possibly answer any sort of question that is sent their way? I emailed the teacher and she said that it would be fine to send a letter home in the Friday folders. I wrote and rewrote the letter several times. Each time there was just something that didn't feel right. I tried writing it from Claire's perspective and mine. I wrote one letter with a bunch of FAQs and another with info about the science and how a cure is a real possibility. With each attempt it became clearer that I was not on the right track. Exhausted on Thursday night I broke. I finally broke to the point that I could think straight. These kids didn't need to learn about rett, they knew about Claire. With that thought I abandon the whole letter idea and went to sleep. As it turns out, I am so glad that I did! Part of the student of the week process is that on Friday, the whole class takes turns and everyone says what they like about the student of the week. WIth no help from me or a letter sent home, each of the children were able to say what they liked about Claire. The boost that it gave her was amazing. When I picked her up that day she was all smiles and so very content. Again she teaches me, just like she teaches others. You don't have to know all of the facts about rett syndrome if you take the time to know Claire, you will know enough.

PT

This was going to be a downer of a post. Saturday Claire had an episode while we were driving and it hit me hard. Later that day I actually strained my neck muscles from crying so hard. Instead of going on about my fears of her funeral, I have something much better to talk about, physical therapy! We took the last two weeks of the year off as her physical therapist went on vacation. On the last day of her vacation, she fell, that caused her to have surgery on her arm. I can't say that I was excited to hear that Sue would be out for an unknown period of time. I knew that in some way or another, it would work out, that kept me from panicking. Imagine my surprise when I got a call on the first day back to school, it was Sue and Claire could come in for her time on the treadmill. You see, Dave, Sue's boss was going to be her hands. Dave is the guy in charge of the CCS unit that we work with and is also a physical therapist, he just typically does more office related stuff, being the boss and all. He is the guy who signed off on Claire's eye gaze computer and the particular mounting system that we got for it, pretty important office related stuff! Back to my story, that day Sue coached Dave on what she does with Claire on the treadmill. It takes a very special balance of support and backing off at the same time to help her walk and I was certainly impressed to see how quickly Dave picked it up. Today was our fifth session with him and we had a wildly successful time on the treadmill.  At the end Claire didn't want to stand up, that's how I knew that she was really pushing hard even though she made it look easy. Before we left, Dave brought out a new toy of sorts for Claire to try. He was thinking about what we were working on and thought it was worth a try with a walker that she could rest her arms on. We tried it out and although it wasn't perfect, it was good, very very good. More importantly, she loved it. We have plans to try out other configurations with it tomorrow and I am hopeful that we will figure something out. The whole thing makes me excited. Excited that Claire is continuing to progress and excited that dispite some random circumstances, it is all working out well. Three weeks ago I would have told you that I couldn't imagine having to switch physical therapist as we have been in such a great groove lately. Yet with a fresh set of hands and eyes came a little different perspective and maybe yet another path that could lead to our goal. No, I'm still not glad that Claire has Rett syndrome but I am encouraged in it, so we will go on another day and look forward to the other unexpected stuff that we will have to be excited about, it's out there.

Another Wave

Here are a few pictures from my first week of the year.

Monday

Tuesday

Wednesday

Thursday-morning

Thursday-night

Friday

Saturday

Sunday

You can see, I had a pretty great week. By Thursday I almost started to think that I might need to think of something else to do, other than sitting and watching the waves, taking deep breathes of the fresh salty air. I was grateful each day for the beauty that surrounded me and the time to be able to take it in. I had started to wonder, is this it, is life really going to be normal? I really did even start to think that maybe our life was so stable that I needed to add to it. Is it time to take some classes, get a part time job, volunteer? Yes, I get three days with two hour increments to do nothing and I think I need to go back to work, noted, I am crazy. Of coarse,  when I got the call from the school that Claire stopped breathing for longer than normal and threw up a little I thought better of it. Then came Friday. I took Chloe out for apple juice at my favorite coffee shop. She picked out three books to bring in and read. That is when it hit. Like a giant wave it crashed on me, the grief, it was all too good. It wasn't this good when Claire was two. I never took her out to coffee to read stories on a Friday morning. Every Friday she had an hour of physical therapy first thing, then we worked on other things, but we weren't out, just having fun. I do take her out and we do fun things. Monday's picture was taken after we went out to the same coffee shop, only she gets whip cream, not apple juice. Then we took a walk down to the water and she had a major dystonic thing, so I sat and held her for 20 minutes while she recovered, then we walked on and eventually took the cute smiley picture. I so badly want it all to be good, but it isn't. The more that I think about it I see that as the challenge for the next year, to enjoy it and hate it and roll with it as it goes it's own way. As much as I hate it, rett syndrome is a part of my life, my really awesome and wonderful life, and it might just take forever for me to figure out how to balance that, but I might as well keep trying.

On New Year's Eve

As it has been getting closer and closer to New Year's, like many I have been thinking about the last 12 months. WOW! It has been quite a year for myself and our family. We have seen darker valleys and higher mountain tops. Claire's seizures and dystonia have pushed us in many directions, mainly toward the edge of sanity.  In the midst of it all Claire continued to grow in every aspect of her life. She is healthier, stronger, happier, calmer, smarter and very much her own little 6 year old self. Chloe is 2. She is an exhausting mix of energy and determination. Meanwhile she is the sweetest, most compassionate and loving little girl. As we have gone through the many highs and lows of the last year I have learned a few things. One of those being that we are not alone. It isn't just that we aren't alone, we are surrounded by really beautiful people. Both locally and across the country we have been supported by people too many to name and it has been a gift that I truly hold close to my heart. The other thing that I learned a lot about this year was me. I went through an identity crisis of sorts. Trying to figure out how I lost sight of myself over the years was one of the hardest things I have ever done. It is something that I am so proud of that I just want to shout from the top of my lungs, "hell yeah, take that, I did it!!!" I found that I am more fragile and strong than I thought. I rediscovered that I more than the sum of Chloe, Claire and Jared. I found that I had to continue to slow down even more and to tune out so much of the noise of life. Most importantly I found that I could. I know that going forward I can. It would be naive to think that 2012 will be better because Claire will wake up one morning and walk and talk or that I might wake up one day and not have the proud and self serving nature that I keep trying to fight. But it will be good. There will be highs and lows and whatever it is that is ahead of me, I look forward to going through it as me, the me that I fought to get back.

What We All Are

It started out as pretty epic, considering it was a Monday. Coffee with a new friend, strolling on the cliffs soaking up the sunshine, Chloe skipping and holding my hand, I even got to vacuum, something I get really excited about. Jared was coming home late so I enjoyed dinner and stories with the girls. It was all very smooth sailing. Jared called to say he was almost home and would stop for ice cream. Then I heard Claire, I ran in. She was purple and choking on her vomit, I assume that she had had a seizure. Just as we got her cleaned up, she had another one, just as I had suspected, it was a real deal seizure, so we brought her out to the couch. After a few minutes she had another one and that is when we did it. We pulled the diastat out and actually gave it to her. Immediately she was better, she even laughed in a genuine high sort of a way. It felt weird to give her such an intense drug at home with no medical supervision. At school if they give diastat to anyone they call 911, so I called the advice nurse. I knew they would be of little help but I just wanted to hear from somebody that we did the right thing. The nurse was clueless and had the on call doctor call me. This was a doctor we had never met so they asked a few questions, starting with, does your child have a seizure disorder? I responded that she had rett syndrome. Before I could continue on to say that she was medicated for focal seizures the doctor gasped, "oh I am so sorry!" I wish that I had responded something along the lines of "I am sorry that you missed the class on things never to say to a child's parents." But I just pretended not to hear it and went on about her history. The doc was not that helpful, she had the super good idea of contacting the nuero the next day, something I had already planned on. The next morning Claire woke up bright eyed and ready to go. In fact, she had an incredible week. I however have had the worst time shaking what the doctor said. Part of me thinks why on Earth would anyone be sorry about Claire, but I know the answer to that. She's different, what she has to go through is hard. As much as I would absolutely love for the whole rett thing to go away and for her to be able to run free, I don't want to go through life thinking about how bad her life is, because I think a lot of the time she likes her life, shouldn't I? I don't want people to be sorry that she has rett syndrome, I want people to see her for the amazing little girl that she is. Sure she has her challenges, they are obvious. But really, don't we all? I think of a conversation I had with a friend a few weeks back. When I told her how great she looked she replied, "cancer is on the inside, you can't see it." What we deal with is out in plain sight for everyone to see, but that doesn't mean that we need pity. Regardless of if the problem is on the inside or the outside, don't we all just want to be treated with kindness, respect and to be accepted for all of who we are, the good and the bad? Sorry that this is a bit of a rant, I am just getting to a place of acceptance I suppose. I don't want to live the worlds largest pity party, I want to live the richest life possible. As it turns out, my daughter's body doesn't work well, but I really don't see that affecting the situation one way or the other. I will laugh and cry and be alive through it, just like we all are.

The hardest thing

I know that this is going to make me sound like a royal jerk, but I don't like 6 year old little girls, at all.  Whenever possible, I try to block the thought of their very existence out of my mind. It won't always be like this, two years ago I hated 4 year old little girls and next year I think that it will be the 7 year olds that I will grow to resent. It makes the loss of what Rett Syndrome has taken from Claire so much more real when I see little girls that are the same age as her. When it is just me and Claire or even Chloe, Claire is exactly who she is and that is just fine. It is all about context. Next to Chloe she is a patient and loving big sister. At therapy she is the strongest fighter ever and at kid quest she is just one of the club. Put her next to a 'typical' six year old and I start to fall apart. I forget how funny, silly, smart, friendly (you get it, I won't go on) little girls are. It reminds me just how normal Claire is and that if her body would just let her, she would say similar witty things as well. Needless to say, this has been a challenge as I know that one of the things that Claire wants most, is to be with other typical little girls and to be accepted as one of them. This year has been great. She spends about 35% of her time at school in the mainstream setting and on Sundays she has a wonderful set of helpers that work with her in the classroom with the 1st graders at church. This has allowed Claire to enjoy the company of her friends without making me participate in it too much. A while back a friend of mine posted this. She discussed being both a 6 year old and a grown up and why we have to be both. But a big part of me just can't, or rather, hasn't. I struggle just to keep some sort of identity aside from exhausted wife and mother, to have to think like a 6 year old too, so I most often let other people do that stuff.  They are better at it and I have convinced myself that it is just better to go with every one's strengths, it's easier that way. Today, that wasn't so much an option. I knew that for one reason or another that there wouldn't be a helper for Claire at church today. I figured that I would take her to watch the service and when she got bored we could sit in the coffee shop and read. I took Chloe to her class while Jared unloaded Claire's chair and got her rolling. When I met up with them I had two nagging thoughts in the back of my head. 1. Ask Claire if she would rather go to Sunday school or big church. 2. When faced with a fearful situation lean in the direction of what seems harder (something a friend encouraged me to do a while back when life seemed it was sliding sideways). You see, I was under the delusion that she wouldn't want me to go with her to Sunday school as there has been a long pattern of her enjoying her independence apart from me. So I thought it was a safe bet. If I could get her to choose to go to big church with me, then I wouldn't have to deal with the guilt of running from my fear. Too bad that she was unavoidably clear, she wanted to go be with the kids. So I took a big gulp and we turned around to walk back to the building full of giggling and wonderful little girls who were certainly going to do nothing other than rub their wonderfulness right in my face. Sure enough they did. As we entered the room immediately I heard a little girls voice say, "hi Claire!" It was our old neighbor that we hadn't seen in almost a year. Quickly it was time for singing and dancing so we made our way over to the large group of children (maybe it was only10-20 but it felt like 100) and I got Claire out of her wheels so that we could join is as best as I could figure out. Claire absolutely loved it. She lit up brighter than the biggest Christmas tree, it was breath taking. When it was time to sit down for the story I noticed that another friend, a little girl from Claire's school that was at her birthday party had come in a little late and chose to stand right next to us for the songs. She moved in a little for stories. Our old neighbor friend came and sat on the other side and held Claire's hand. There were two people that were dressed up in absolutely ridiculous elf outfits that were teaching the lesson. As they shared the story Claire laughed out loud a few different times along with the other children. My heart dissolves at the sound of her pure laugh. It is the closest thing to her voice aside from her screams when she is upset. She gave me the signal to leave the room so we did and she had a dystonic episode, that she had the peace of mind to let me know that it was coming and she wanted to be alone is another thing that just blows me away. As soon as she recovered and could hold her head up she wanted to go back. Things were wrapping up, we helped the little girl that sat next to us with the stapler, ate a few gold fish snacks, said good bye and went to get Chloe. As we walked out, the guy that told the story, who was still dressed like an elf, stopped to say how much he loved it each and every time he heard Claire laugh. It was a genuine nice thing that he said but it was like a bomb in my head, Claire is a very special little girl. She touches people in a really special way. Her laugh says a lot more than most normal little girl laughs. She contributes to the group, she encourages people, they love to see her come alive just like I do. Funny because the lesson was on generosity and it was I who had wanted to keep Claire all to myself. So all that to say, that was hard, really, really hard, it was wonderful and most importantly not just for me but for others. Maybe someday I will remember that it isn't just about what I do for Claire but what Claire does for the world.

1 Tim 6:18 They are to do good, to be rich in good works, to be generous and ready to share,

Miss Amazing Does Novermber

Ah November. The thought of the word November alone brings a sigh of relief to my soul. November was like a cup of coffee with a really great friend that you rarely get to see. You can get there five minutes late, a little frazzled and wearing your sweats and still manage to have the most meaningful and encouraging time. You laugh, you cry, you look down at your watch (alright iPhone, nobody really wears a watch anymore) and can't believe that three hours has already passed and you had better get going. You walk together out to the parking lot together already planning what the next meeting will look like, even if it off in the distant future. Later, when somebody asks what you talked about it is hard to come up with an answer, nothing, everything, it's hard to remember, it was just good. With that said, here are some of the highlights that I can recall.

November certainly did not disappoint in the food category. Not only did Jared and I enjoy a full share of rich dinners, we actually had people over to eat with us, twice! I actually think the last time we had friends over it was Maren and Erica. So I was over the top delighted to get to make pizza from scratch two weekends in a row for a few new friends.

The weather was pretty epic as well. I spent a lot of time just sitting and listening to the waves crashing and the water swirling in the sand. I wish that I had the words to describe how the longer I sit on the side of the ocean the more in balance everything seems. Sitting there doesn't actually change anything and at the same time it somehow changes everything.

There was a lot of silliness and leaves. Chloe taught me that it is better to run in the grass and the leaves in bare feet and I have to say that I must agree with her, it was great fun!

Then there was the road trip to Santa Barbara to support our dear friend Sorel and her rad parents. Claire and I left very early as it was a 5 hour drive just to get down there. Of coarse, the two things that I feared most, Claire not breathing and me getting diarrhea both hit us in the first 30 minutes of our journey. I hadn't been driving for 5 minutes when I heard Claire's first episode, we rolled with it, I thought to myself, she has rett syndrome, this is just what that means for us. We drove on and as we drove through Castroville it was my turn. My stomach yelled at me and I quickly found the scuzziest gas station bathroom that I could find, put Claire's chair together, threw her in it and darted to the back of the building to a room barely big enough for a toilet and a wheelchair, but we made it work. As I finished, Claire indicated that she needed to go as well. I tried to talk her out of it. I explained that of all of the toilets to ever not want to sit on, this one was toward the top of the list, yet she insisted. So glad that I listened! It was then that I had one of those true Miss Amazing moments. Not that I can read her non-verbal cues so well that I put her on the toilet just before she poops, no that is not what makes me amazing. As I squatted, mind you it is just before 7am, holding her up to sit on the toilet, I for reasons unknown let go. Yes, I dropped her poor little bum into the grossest toilet ever, just after she used it, ugh. This is the picture I took of her in that bathroom, just after the event, she laughed so hard at me that I couldn't help but join in.

Now that we were both completely awake we got back on the road and put some miles in. We didn't stop again until Paso Robles. The moral of the story from that pit stop: if you are going to try to change your child's diaper in the bathroom of Starbucks, and they are flailing post seizure/dystonia and you take your sweater and sweat pants off to make a makeshift pillow so she doesn't crack her head, lock the door, trust me. Again we got back on the road and took in some really breathtaking scenery.

 Eventually we made it to the beach and it suddenly was all worth it. To see Sorel's big toothless smile and all of the people that were gathered around her and her family was awe inspiring.  We are not alone in this. There are people working to fix this for good, to make it less bad and to help us right where we are without those first two options available, yet.

This picture was taken just when we got there, before a really bad episode. Claire spent most of the time there recovering and still she managed to enjoy herself when her body was not fully cooperating. After a few hours with our friends we took a little detour to the French Press. I knew that I needed coffee to get home and I figured this was the place to stock up. Claire got her usual, whip cream, which she enjoyed very much, she just wanted to show off her serious pose for the picture.

Next we went back to Sorel's house for the after party. Her parents are great, really great, I love them sooorett together and it is an official party.

 By the time we recovered from that trip it was Thanksgiving. I got to give out a lot of apple butter and salsa to people that we are thankful for and this year the girls helped me with that which made it even more special. As for a big turkey dinner, this was the extent of my mise en place.

I bought a precooked stuffed turkey something that had a packet of cranberry sauce along with stuffing that merely needed to soak and be reheated.

They sure didn't care and I got to spend a lot more time with them due my lack of cooking for the day.  The sad part is that it was another hard day on Claire's little body, so she rested up in between bouts of great fun.

Chloe "helped" me cook the pie. She was in charge of smashing the grahams for the pie crust. Put her in charge of destruction and she will not disappoint, it is for sure an area she excels in.

After we ate and watched both the Thanksgiving and Christmas Charlie Brown movies, we put up our tree . There is just something so special about watching children look at a tree light up for the first time, one of those things that just can't be taken for granted.

Once the girls were down Captain Awesome and I had our real feast of cheese, salami, olives and fresh bread while watching a true Christmas classic.

We had a lot of fun over the holiday weekend. You can see that we took our black Friday shopping very seriously.

Eventually we made it down to work some of that food off. Being that black Friday is the official day that rett stole Claire's hand function it has been a sad day for me the past few years. But this year she really shined and showed off just how little she needs those hands. Sure she would love to use them, but Claire reassured us all that even without the ability to feed herself, she is still one very awesome little girl in ways too many to count.

And just like that November wound to a close. We got back to school, the laundry and the IEP.  Not without one last night out, which happened to include verve coffee ice cream with chocolate covered almonds, covered in house made marshmallow that they toasted with a blow torch right in front of me, just before topping with a fresh cone, all in addition to Captain Awesome, the world greatest husband. That is how we celebrate 12 years :-)

Hand in hand

Claire has been walking on the treadmill regularly for the past few months. You might have seen my video with pics of her stats increasing in time, speed and distance. There hasn't been any good video of her on it because I have been holding her hands on the bar to help support her. Last week there was a major development. She did well walking without holding on, she even reached for the bar herself, amazing!!! Today it worked out that Captain Awesome came to pt with us and was able to get a video clip. So thankful that he got it so that I can forever remember the first time that I walked, holding Claire's hand, dreaming on a splendid stroll on the beach. Mark my words, I will walk hand in hand with her on the beach, I don't know about the dogs and the coconuts, but we will walk together on the beach.

Off on another path...again

I thought by now that I would have figured that there are no expectations on this journey. By now I should know that the things that I thought would be, generally aren't and the things that I never even dreamed of have a way of finding their way into my life. Yet still I sit here surprised. On the heals of just finishing the triennial IEP I am still somehow shocked with the direction things are going. Let me explain as I know that I haven't been blogging much and it is because I have been busy listening to my local expert on Rett Syndrome, Claire. I don't know how it happened, but slowly, with the best intentions in mind, I lost track of listening to her first and foremost. I have had the blessing of access to people who know a lot about rett and all of the different facets of it. I listened enough to Claire to know that she had a lot to say so I worked tirelessly to get her a computer to enable her to do that. She was 4 when we got the Eco2 for our home and it was awesome. Then we had a speech therapist that was A.mazing and worked to teach Claire the Unity language and Claire had a lot of success with it. However, with that success came other stuff. By other stuff I mean dystonia. Dystonia is one of those words that when the pulmonologist or the GI ask you what the neuro said and you tell them the nuero said it is "dystonia" they get a disturbed look of fright on their face and then wish you the best of luck. We have been advised against medicating the dystonia as the meds would pretty much wipe her out. With that I sat and looked at my options. Out of all of the people that know so much about how bodies work it was Claire that had the key to our dilemma and so I started to listen better to her. The hard part is that in order to listen to Claire, I pretty but have to turn the volume down on the rest of life so I have become a bit of a recluse. But in my time away she has taught me so much. We are using the Eco2 less than ever and it is a good thing. I know you never thought that I would say that, neither did I! She does still use it and loves to have her voice but it is her non-verbals that are more amazing than ever. Over the last few months she has chosen signals for when she needs to go to the bathroom and when she is overwhelmed and needs space and neither of the signals involve her screaming. In fact, I don't remember the last time that I heard her scream. She is emoting sadness and frustration but no more just random screams. It is really awe inspiring to see how she has taught us around her how she works and as we see it and honor it she is at peace. So in her IEP meeting I found myself not wanting any more inclusion time. Fact is, the general ed kids are nice but don't really get her. Claire likes to have a quiet place to do her work from the general ed teacher so I am not pushing for her to have more time mainstreaming like I thought I would. Also her primary mode of communication is a simple yes/no with which she can very well control her world. She does use her talker to socialize and tell her needs, but it isn't her only option. Her silent voice has gotten so much more articulate. Something that I am so deeply grateful for but indeed, I never saw that one coming! She has taught me to push less and just be. When she has her good days and her body works she stuns her teachers with how accurate she is at math, reading and writing. So on the bad days we just casually expose her to all of the stuff that we think she needs to learn. She reminds us that just because she doesn't look like she is listening that she isn't soaking in every drop. So I go from here, trying to not go in any direction but just with the way that the wind is blowing, and hoping that it is a gentle breeze and not a hurricane.

Maybe November is my month

I feel defeated. I was so determined to take October back. I gave it a really good try, I really did. I have however come to the conclusion that since Claire's birthday is in October, this might not be the best time for me to really revel in a season, at least for the foreseeable future. When you live in rettland there is too much stuff associated with the birthday. We've seen neurologist and pediatricians. We had a lengthy home assessment with IHSS, an IEP meeting that was almost 3 hours and still isn't done, not to mention another social worker with a ton of forms and three year old goals and then there was the blasted grieving that goes with the diagnosis day. Then there is the birthday party and I'm not a party person. Claire has never had a real party with her peers. Last year she actually got a cake(I even blogged about it, big deal!). So building on that success, this year we had a party and by party I mean bowling, it's was great! Claire has been very particular about who to invite and what she wants and as great as it is to get to honor her and plan this, I can't say that I enjoy it. All that to say, there is too much going on in October for it to be my favorite month. Sure there will be highlights; pumpkin soup, apple picking, birthday parties and random fun at the beach, just not all the fun that we had frolicking in the wine country in our pre-children life and that is just fine. I am going to have to move my favorite month to November and I feel really good about this. I feel like there is less to do in November and more to enjoy. It is a really good month for food and I love food! It is also the month of our wedding anniversary and my favorite holiday, Thanksgiving. So goodbye October, I am going to enjoy November now.

Blue Sky Girl

Over the past few weeks and months I have in a way had my ear muffs on with most things rett. I half pay attention to the things that are close to home and graze over the rest. Last week, I finally clicked on a link that I had seen more and more people talking about on facebook. You can click here if you want to see it for yourself. It really struck a chord with me. A large part about why I dread October and rett syndrome awareness is it seems to have an edge of 'look how bad this is, we have to fix it now' and that is why I withdraw a bit. As much as I would rather Claire not have rett, there is still a lot of life to be had within it. The whole concept of the blue sky girls is creating an event that symbolizes their strength, will and what they CAN do. To see this out there really deeply encouraged my soul. So I wrote a note to the contact person to say thanks and let them know that we would be standing with them, just by ourselves out on the west coast. To my surprise and delight, they responded quickly,  it was Dr. Sasha Djukic! She is sorta famous in my mind, I have heard of people that journey to see her and the great advocate that she is for rett syndrome and I got an email from her, wow! She also sent a shirt overnight so that Claire could have it for the big day, how great is that?!?! Saturday morning came and on our way to the stairs that she would climb, Claire fell asleep. There was no waking her, only waiting, so wait I did. Jared and Chloe went to go pick apples and I drove around and took care of a few small errands. Eventually Claire woke and with the biggest smile on her face. Since we had to wait for the other half of our team, Claire and I opted to go get a power snack at Verve since it was close. Whip cream and carrot bread, how can you top that? You can top that with the smiles and encouragement that came from the girls working there. They cheered Claire on in her efforts for the day and even put extra chocolate sprinkles on her whip cream.

 Between her nap and the yummy snack, she was ready so again, we headed down to the stairs and the timing couldn't have been any better! Jared and Chloe got there ahead of us and had run into a friend. Being that he is in fact Captain Awesome, Jared got his friend to hang out and take video and pictures for us. We had asked a few different people but it being last minute, no one was available so we had given up on the idea of video or a group picture, so that we got this is super special. So here it is, the last bit of Claire's ascent to the top!

It has been such a nice way to spend a lovely October Saturday. This didn't seem like a rett syndrome thing to me. It was really more of us being us. We help Claire up the stairs all of the time, but today it was special because we did it with others that we couldn't see, joining together to celebrate the girls. It was also special because of the encouragement that we got from peoples paths that we just happened to cross. Even with our cool and gray fall weather, it was for sure a blue sky kind of a day!

So far, so good!

We've only had two weeks of October and already there has been so much good stuff. Here are some pictures from some of the highlights. We started with pumpkin soup and Chloe helped me clean and roast the seeds for a little snack.

We enjoyed some time by the ocean and had loads of fun at the boardwalk.

Captain Awesome was able to join Claire and her class for a field trip on the O'Niell Sea Odyssey, they couldn't have had better conditions!

I have gone through more than 40 pounds of tomatoes and made a lot of salsa, so now I have great spicy tomato juice to cook our kale in, yum!

The weather got warmer, so we indulged in ice cream and spinning in circles post sugar high.

Claire had another field trip with her typical class, this time I got to go and we went to learn about farms, which was good because I love farms and tractors.

Since the weather was still epic we went down and spent even more time by the water. They are making a movie so it was fun to see all the movie making stuff.

Just in case there hadn't already been enough fun, Chloe got her first skateboard ride, which she loved very, very much.

Despite the weather feeling more like summer than fall, October has been great so far, I'll take it!