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! 


Not THIS October

 The last October that I remember enjoying was 2005. At the top of the list of fun activities was the harvest at V. Sattui including a lovely picnic under a lush tree, stopping by Prager (still thankful Uncle Jack gave us that tip!), walking across the Golden Gate Bridge and the day before Claire was born, I had the most amazing bowl of pumpkin soup of my life at the Ritz Carlton in Half Moon Bay. Then there was the birth of Claire, that was a really good thing too! Sad that it is 2011 and it has been that long since I really enjoyed the month of October, my favorite month of the year. I have been thinking about this a lot. I go back and forth but I am making my final decision, as of today, I am done celebrating rett syndrome awareness month. We had so much fun joining in on the celebration over the last weekend. We went to the NHS and saw our wonderful rett family. We got the incredible news that despite getting a lot taller Claire's BMI has stayed the same for a year (in rettland this is like winning the gold medal) We saw two amazing doctors that both said good job and not much more. We went to the 2nd Annual Nor Cal Srollathon and were overwhelmed by the support of so many that we are on this journey with. That was all wonderful and we absolutely love our rett family, I do not know where I would be without you guys! But Oct. 15th will mark the day that we got the call 4 years ago, the call we were never expecting, the one when they said that we should make an appointment to come back and talk since the test for rett syndrome came back positive. I will not spend an hour in the shower crying this month. I love October too much! I have let rett define me for too long. I know that it is a part of me and I don't want to change that, but I don't want it to define me either. I am sure that there will be some random day in December when I can't take it and the weight comes crashing down. Then I will hide and sob, but not now. While October is the official awareness month, I feel like I am aware of it all year long and constantly doing what I can to educate people. So this month I am taking off. I think I will start the celebration with another bowl of the pumpkin soup that I just made. After all, isn't that what October is all about? I will share one pic from our big fat celebration of rett syndrome awareness, this girl is amazing and that is sorta something to be celebrated every day.


For Claire

Since October is Rett Syndrome awareness month, I put together a little video to honor Claire and what she has been up to lately. I hope that you enjoy it.


We are here.

Funny how easy it is to wind up somewhere and not really think of how it was that you got there. Over the last few weeks I have been going through an identity crisis of sorts. I know this is normal for those in the mommyhood but it still has my head spinning in all sorts of directions. Earlier this week I had the privilege of a time warp of sorts and it really stirred my thoughts a bit. It started on Saturday night. Jared and I went out to see one of our favorite bands since they were playing so close to where we live. In recent years I remember enjoying their shows if for nothing more than a 90 minute break from the harsh reality of life. It was a form of loud music therapy for me, in a way it just blasted all the excess crap that I would never have time to process out of me. Life is seeming less harsh at the moment and I think that helped me to enjoy the show even more than I had in the past. This being the case, I took the opportunity to go see them again on Monday up in San Francisco. That is when I was thrown into the time warp of remembering 10 years ago. Captain Awesome was happy to stay home and get caught up on life so I got to go with a new friend that I was eager to talk with and learn more about. It happens that she is 8 years younger than me and also newly married. As she shared stories about her life and the adventures of being married it took me back. I had completely forgotten that years ago I lived a completely different life. It took me back to all the plans that we had. How we desperately wanted to not live in Arizona. California sounded good but we were sure that we could never afford it. I dreamed of going to culinary school and working as a professional cook. I worked at a bank and wore fancy dress up type clothes almost every day. We lounged around on weekends and went out to eat a lot. It was surreal to talk about our life of years past. I was snapped out of the dreamlike thought once we got up to the city where I miraculously did not get lost and quickly found great parking. Soon the show started. The band was playing an album that they had released 10 years ago in its entirety. Since I have kids now I don't often listen to grown up music, more or less an entire album, so it had been a while since I had heard some of the songs. It is amazing how you can hear a song that you haven't heard in a while and it can transport you back in time. In the light of what life looked like back then, it really is amazing that we have ended up where we are. Yet I don't think that we could be in a more perfect spot. It certainly was not the dream but I am in awe that it is better than what I could have come up with. It makes me wonder, what plans do I have for the next 10 years. Certainly life will happen and they will evolve as we go. Maybe there really will be a research breakthrough and Claire will be better able to use her body, maybe there won't be. Maybe we will completely loose our minds and move to another country all together. Who knows, I don't. Isn't that the point though? To soak it in as you go, not taking any part of it for granted. I am trying to soak it all in. Today being thankful for new friends and old music to help me see where we have come from and inspire me to hope that it is very likely the future will be better than I can even dream of.


Rett Syndrome, the saga continues

You are never going to believe what happened today. I woke up and sure enough, Claire still has Rett Syndrome, drat! She even did her shaking stop breathing thing just as I cuddled up to her this morning, just in case I had any doubt. Then she was fine. She ate well and played with Chloe. As we left to go to kid quest she was all smiles and was happy to show off her new shoes and how well she walks in them. Her days are really full of so much good stuff right now. She is making lots of friends at school and learning a lot. 1st grade is so much more challenging that kindergarten was and that has really helped her to come alive, the girl loves to learn new stuff. This week in pt she did a quarter mile on the treadmill in just under 15 minutes, a new personal best! I could go on and on about the mounds of small meaningful things but I think you get my point, she is doing well. Earlier this year that was definitely not the case so I am really enjoying this season of everything going well. At the same time we have friends that are having new challenges thanks to rett. While it is nice to know that you are not alone it is heartbreaking to know the pain that somebody else is in since you were just there. I would never wish any of this on anyone, but these people are my friends (you know who you are) and I hate the thought of their hearts sinking as they are just trying to do the normal simple things in life and can't. So, to those of you reading this, strangers and friends, I want to remind you that there is hope. It is often so easy to forget, but it is there. There has never been more going for research in Rett syndrome than there is now. That is why we are going up to Oakland next weekend. To meet with doctors that are trying to figure this blasted thing out and also to help to raise the vital funds to support the research that the girls so desperately need. In the chance that you are reading this and don't fall into the category of somebody struggling to fight Rett Syndrome daily, please consider supporting Team Claire by clicking here. To the rest of you, YOU CAN DO IT!


Exiting Orbit

There are so many ways that I could explain that last few years. They have been full of chaos, many things that were unexpected and harder than anything we ever could have imagined. There has also been unimaginable joy, laughter and some of the most amazing people along the way. I suppose it might be best to sum it up as quite the adventure. It made me think of the movie Space Camp.  We were just a couple of kids, excited to sit in the shuttle during a test when boom, that wasn't supposed to happen and before we knew what hit us, we were in outer space. We spent all of our time talking in acronyms like OT, PT, SLP, IEP, GI, LPCH, AAC and mls. As our daughter slowly disappeared before our eyes we just sort of slipped into the land of doctors and disability. We blinked and three years had gone by. We were going to run out of supplies, be it patience, energy or any of our resources, we were burning through it all at adventure rate and that wasn't sustainable. We grieved good and hard and then started to fight our way back. We started with small victories like our finances and then moved onto larger obstacles like how to spend our time, grappling with our faith and eventually we got to the monster in the closet, rett.  It has been exhausting to do so much hard work. I can see why people choose to continue to live in chaos, it is really hard to get out of. The month of August was the real reentry for us. I felt the excitement of getting back to normal but first had to get back into the atmosphere without burning up in the process. Once that happened and I had my feet on the ground it took a while to readjust to having gravity and all the other trappings of this world. Slowly it is all syncing and even running relatively smoothly. I sometimes even have entire days with not a single catastrophe. As I sit here and type this, Captain Awesome is clear on the other side of the country sitting on the edge of a different ocean than the ocean I was on today. I was a little nervous about getting to be the sole parent and grown up in the house for six days. Now with two days done, I can sit back and enjoy it. This must be what other people do, hold the fort down while their spouse occasionally travels. I am looking forward to things more than ever, now that we have safely landed and gotten our feet back on the ground. The whole adventure sure has given me a different perspective on living both in and out of orbit and for that I am grateful, but I really do hope to stay here for a while. On a side note, if I haven't returned an email or kept in better contact over the last few months, thank you for understanding. Things did get pretty crazy as I came back down and I look forward to keeping in better contact with you all now that I am back. 


Like Other Girls

Over the summer, in an effort to maintain sanity, I purchased a princess sing along video for the girls. Most movies scare Chloe and they are long, so this was the perfect solution. I will admit that I used the video for when I was about to break and needed to go hide in my room for a few. I would then try to get whatever needed to be done during the rest of it, but I rarely sat and watched it with the girls. A few weeks ago (by this time they had watched it more than 10 times) I was in the kitchen getting dinner ready when Chloe exclaimed, "other girls, other girls, my favorite!" then as the song started Claire let out a loud sound of joy. This caught my attention so I watched with them. You can see for yourself, but the gist of the song is that the princesses don't want to have to be so formal, they just want to be like other girls, quickly I got it. You don't have to think long before you figure out why Claire would identify and Chloe often prefers what Claire does for no better reason than being the younger sister. With school starting I am again becoming more aware of the other girls. Those normal ones that wave good bye to their moms as they go off to 1st grade. The ones that play on the swings and don't have to be pushed, they also eat their lunches with no assistance at all. I think that in her non-verbal, clear as a bell way, Claire used her response to this song to tell me that is what she wants, to be normal. Funny, because that is what I want for it to be but sometimes I get so wrapped up in our special needs world, that I completely forget that the other one is out there. So how do I respond to that? For starters I went to parent night, but that is another post, one that is hopefully coming soon.


Somebody pinch me!

Could it be? Did we have a super normal fun filled weekend as a family? Yes, yes we did! When we first moved up here (and I was under the impression that Claire was a typically developing child) I was so excited to take her out to the farm, to cook with her and raise her to know where food really comes from (hint: not your grocers freezer!) As you might have guessed, that whole dream got interrupted when our life slid sideways with the whole rett thing. Saturday morning we got up and all headed out to our spectacular farm for their u-pick tomato event. We had never taken Claire out because of the situation with her wheels and all of the soft dirt associated with farms and I am so glad that we finally just decided to do it because it was awesome! As it turns out, everyone in our family likes to eat tomatoes right off the vine with a little salt, even Captain Awesome who has sworn off tomatoes for as long as I have known him, I had to get a little photographic evidence. There is just something so nourishing to both the body and the soul to be where your food comes from. Every week we get a big bag full of lovely produce from this farm and it was such a treat for everyone to get to see and smell where it comes from. 
  Chloe was chief in charge of picking, which is a dangerous job for a 2 year old, we like to live on the wild side. She did such a good job, we ended up with 24 pounds which was enough to fill a few jars. Just as we were about to leave we were able to hitch a ride on the tractor to get back to the car (which was great because I was pretty sore just from pushing Claire the one way). Farmer Tom was so kind to help hoist Claire up and everyone moved around to make room for us. It is moments like that, when nobody makes a big deal about it and you just get treated like a part of the group that feel so good and go a long way toward the normalness that we seek. We got a little tour and the farmer even stopped to pick teddy bear sunflowers for all of the kids. Both girls absolutely loved the ride on the tractor and it was the perfect close to our little adventure for the day. Farmer Tom wrote about here it and if you look closely in the picture of the tractor with the wagon, you can see Claire sitting in the middle surveying the land.

As you might imagine, we were all pretty tired after all that fun so we went home to rest and get ready for our next adventure, which was only 2 hours away! Yes, us doing more than one thing in a day much less week, who knew that we could have so much fun?!?! After we all had a good nap we packed back up and headed to the beach for Erica's 21st birthday bash! From the sounds of it you might think that this sounds like an event that might not be appropriate for the girls, but it was. We met Erica at Kid Quest (the super awesome hang out/respit house that has saved my life a million times over) She and Claire both have a converse shoe fetish and that was just the beginning. As soon as we got there Valerie (Erica's mom who works at kq and loves Claire a whole lot) whisked Claire off to do introductions to everyone and I got to hang out and chat, which is something that I don't do frequently, but I could get used to it! Chloe quickly found the sand toys and it was so awesome to experience various people, some that I knew and others that I didn't come up and play with her. Claire hung out with Natalie while Jared went to get a closer view of the bait ball feeding frenzy (you can see it in the background). We all had hot dogs that were cooked over a big fire pit along with all the normal picnic food like potato salad and watermelon. As it got later we sang happy birthday and it was time for cake. Despite the cake being chocolate, after one bite, Claire clamped down and didn't want anymore. I saw that there was a little smirk in her face and asked if she was just holding out for smores. She laughed out loud and beamed with the brightest smile. Our friends around all laughed at what a clever and funny little thing Claire is. I quickly found some marshmallows and made my way to the fire to make what was the first smore for both Claire and Chloe. As the two of them ate them, covered in gooey wonderfulness, the fog started to blow in and the sun faded. I looked around and we were surrounded by some of the best people that I never knew to dream of. Here we have been fighting to get back to normal ever since our world got tipped upside down about five years ago and we have arrived. I am not sure exactly where or when it was that we stopped trying to make it back and just started living and enjoying a truly blessed life, but I do think that it was somewhere between a tractor ride through the tomato patch and Chloe going down to the water to free a hermit crab with a friend, none the less, we made it. With that, hello fall, I can't wait to enjoy you!