An Organic Experience

Valentine's Day, minus the heart attack

2012-02-16T12:14:00.000-08:00

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

2012-02-14T11:35:00.001-08:00

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

2012-02-03T09:56:00.001-08:00

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

2012-01-28T09:24:00.000-08:00

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

2012-01-21T20:16:00.001-08:00

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

2012-01-19T08:20:00.000-08:00

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

2012-01-10T10:41:00.000-08:00

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

2011-12-31T17:53:00.000-08:00

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

2011-12-12T22:43:00.000-08:00

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

2011-12-04T15:40:00.000-08:00

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

2011-12-01T22:26:00.000-08:00

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

2011-11-15T18:59:00.000-08:00

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

2011-11-10T15:43:00.000-08:00

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

2011-11-01T15:31:00.000-07:00

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

2011-10-15T16:21:00.000-07:00

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!

2011-10-14T12:29:00.000-07:00

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

2011-10-03T19:58:00.000-07:00

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

2011-10-01T07:16:00.000-07:00

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.

2011-09-29T23:09:00.000-07:00

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

2011-09-24T16:22:00.000-07:00

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

2011-09-17T22:22:00.000-07:00

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

2011-09-09T13:54:00.000-07:00

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!

2011-09-01T19:28:00.000-07:00

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!

1st Grade!

2011-08-28T15:19:00.000-07:00

What?!?! 1st grade, how did that happen. I don't know how we ended up here so fast but I will admit that it has really been a wonderful transition. Claire's school started on Wednesday and due to fortuitous circumstances, Chloe was in school all week. This allowed Claire and I to have a really great last two days of summer and go out in style.

We went shopping for shoes.

Enjoyed one last treat from Verve.

Went down to watch the waves, we also worked on vitamin d intake and she walked up 22 stairs to get back to the top!

She loved getting her hair cut, I assume because she loves attention and mirrors.

Last on the agenda was pt, and she killed it! Those legs are getting so strong!

With all of that out of the way, Claire was ready for the big day. I was so nervous. I knew that our new aide was great, but new anything lends itself to the unknown. I was up late making her lunch, going through the packet of papers from parent night and trying to remember all of those little details that are involved with going back to school. Sure enough, Wednesday morning came and she was ready to go. She was excited but not too much, I think that she was just really ready.

After I dropped Chloe off at her school, got myself some coffee and took a nice long slow walk by the ocean, I stopped by Claire's class to answer any questions that had popped up in the first few hours. When I arrived Claire and Natalie (her WONDERFUL new aide) were just returning from her regular ed 1st grade class. Claire has a desk with her name on it and a really nice friend to sit right next to her. When Claire shouted out while the teacher was talking she rolled with it and took that as Claire shouting out the appropriate answer. I really couldn't imagine a better situation for Claire at this point. After I explained a few details and talked a bit with Natalie about how Claire works it was clear that I was no longer welcome. I tried to get a picture of the two of them and I got a little attitude, which I guess might be normal for any big 1st grader who's mom has stayed passed thier welcome.

Having given up on a smile for the picture I let the two of them get back to their first day of school business and went on my way. I had completely forgotten just how nice it is to be in a car without princess songs or Dr. Seuss playing and when I got home I even got to pick up the house faster than it was getting un-picked-up, it was great! As I waited for the bus I prepared myself to see an exhausted and unregulated Claire. After all, it was the first day of school and it can take a while to get in the groove of it all. I was honestly surprised when I found Claire getting off the bus with the most vibrant smile, clearly 1st grade agrees with her well and we are looking forward to a wonderful year!

That Was Hard!

2011-08-22T07:12:00.000-07:00

I knew going into it that not using words would be hard and it was. I am so glad that I restrained myself because there was a lot to be learned in the process of not being able to do something as simple as share a story with more than just a picture. It gave me the slightest glimpse into Claire's world. She takes in everything, like any other little girl would. But it is so much harder for her to tell me those little things, the little details that only she could express. To have those thoughts and not be able to share them with you was really, really hard. It did help me to get down to Claire's level a little better. Instead of continuing to try and adapt her into the box that I expected her to grown into, I tried to be quiet and hear how she does it and try to speak to her at that level. We spent a lot more time together without using words, rather facial gestures and eyes. She is so much better than me at being able to articulate things with her body language and I really enjoyed being able to slow down and really enjoy that. About half way through my little experiment of trying to blog without words, I added the emphasis of beauty to my remaining picture posts. Again, I was blown away at how much I learned and grew through such a simple exercise. One of the things that I see as I look back is that I really am surrounded by beautiful and amazing things. There isn't a day that goes by that I am not grateful for the lovely climate here in California, for the ocean and for the towering trees that make up the forest that I enjoy so much. It isn't just my pleasing circumstances that make my life filled with beauty. Even on the hard and truly challenging days (which I will say there was more than one) I found that when I looked up, I could see beauty all around. I am also surrounded by really beautiful people. Not just Chloe and Claire as they were my obvious subjects, but everyone else. I loved going through my days seeking beauty out because I saw a lot more of it everywhere. In the smile of the person handing me coffee, in the look of anticipation as the the surfers head to the water, as friends stroll sharing their lives in story and as a respit provider lovingly take a child that is having a rough day from a frazzled parent, beauty is everywhere! With that I will leave you with one last picture of what I percieve to be beautiful. As I stood loosing my thoughts in the waves, two v shaped formations of pelicans flew above me in opposite direstions, it was indeed beautiful and awe inspiring.

My Crescendo

2011-08-20T13:32:00.000-07:00

I just needed to make it through Friday and I knew that I would have survived the summer, what I think might have been one of the hardest ones ever since I don't expect that Chloe will be a potty training toddler ever again :-) She has been doing really well. When I picked her up at school on Thursday they told me that she really did well in her big girl panties but that we might need to send a few back up pair. Great!!! I can do that! The problem was that we had only 5 pair of panties, which is about a days worth at the current burn rate, so we needed more. I want Maren and Erica to know that I thought of you both as I summoned the strength to take the girls into Target, one of the places you are least likely to ever find me. We had had a good morning. We got the honor of showing Claire's chair off to another family as they were working on making their big decision for the wheels they needed to move into. We went to Verve and shared a croissant. Then we drove over the hill to have lunch with Jared (who works right next to the big evil Target) on our way to ride horses. I just had to make a quick stop inside, get panties and enemas, which to me seemed really ironic and funny, but that is just where I operate at, so I laughed to myself about it as we put our items on the belt. As I paid, Claire gave me the signal that she needed to go to the bathroom. Still there had been no tantrums or gnashing of teeth, I was feeling pretty on my game, so we went for it. I get Claire on the toilet, take her wet pants off and ask Chloe to get me a clean diaper for Claire. She hands me an ipod. I then, while balancing Claire on the toilet, start to search through the back pack myself. Sure enough, I had used the last one and not noticed or remembered to put more in there. But on the bright side, while I had been rummaging around the bag, Chloe had taken all 10 pair of her new princess panties out and strewn them about the stall. All I had to do was convince her to share one pair with Claire (who I had asked if she wanted her own this morning and she said no, she prefers the security of the pull ups) and convince Claire to not freak out and to hold it until we could get to the car and a place where I could again change her. Those two goals were met with surprisingly little resistance, Claire actually loved laughing at me more than she was worried about an accident and Chloe is a very loving little helper. We loaded into the car, drove over to the parking lot behind Jared's office where we quickly corrected the situation and then drove on to horse therapy. Chloe slept in the car, Claire enjoyed her audio books and I nearly laughed out loud the whole rest of the day, at myself and the ridiculously disproportionate amount of time I spend in public bathrooms and changing diapers. But that is my life, I don't see it changing that much so it really is just best to laugh, because there are so many jokes to be made where Target, princess panties and enemas are all in the same sentence. On top of that, I made it! Claire rode stormy, Chloe played with the donkeys. We came home and danced to princess songs, had dinner and with that, I had made it!!! I didn't even get committed to the mad house or accidentally drive my car into or off of anything, but I did it and actually had a lot of fun in the process.

Beauty at the end of a very long day

2011-08-18T21:02:00.000-07:00

Sunflower

2011-08-17T18:47:00.000-07:00

She calls this 'fireworks'

2011-08-16T22:33:00.000-07:00

More than stickers

2011-08-15T08:35:00.000-07:00

I know, here I am using words again...it does sort of make the point at just how useful they can be. I had an experience that was just too good to keep to myself, so here here is my story.

Funny how often, the best things happen when you aren't looking for or expecting anything. This is at least my recent experience. Friday was a tough day. Claire had a seizure after starting the meds which was for sure not what I expected, her spells of dystonia had gotten worse and the pulmonary specialist that we waited almost two hours to see told us that he couldn't help until he saw Claire sick and that there was no prevention at this point (not at all what I was hoping for!) We rolled with it all pretty well, kept looking for the bright spots and made the most of it. Saturday morning we opted for coffee out. Since it is summer there were a ton of people inside so we did the super cool local thing that none of the tourist knew about and went to the little cash bar in the alley way. Jared and Claire waited for our coffee and talked with the guy (turns out his name is Randy) who was waiting for his while I chased around after Chloe. Randy told Jared how much he loved Claire's beautiful smile and said that she should come down to his shop for some stickers some time and then went on his way. We got our coffee, took a nice walk and talked about how nice it was to chat with a stranger who was so friendly (honestly it happens often and I never tire of it). We had a nice low key weekend full of lots of down time and playing with the girls. Monday morning came and Jared didn't have to go to work (imagine the sound of angels singing) so we again had a lazy morning and found ourselves down at Verve getting coffee. It was pretty cold and wet (please don't hate me if you are somewhere where it is hot, I am honestly not trying to brag) and we weren't sure that was the best weather for a long walk, so we decided to take a short stroll up to the surf/skate shop that Randy works at to take up his offer for stickers. What happened for the next hour was unreal. He sat in the doorway (for the best light) and carefully worked with Claire to figure out the coolest way to trick out her wheels. Side note: Randy never asked what Claire's condition or disability was, the word rett never came up. Often when people are around Claire they talk to her but don't listen for her response or they talk about her as if she isn't listening, back to my story now. He talked with her as he tried to figure out what would work best, there was never a point where I had to translate, he talked with Claire and responded. The three of us made small talk as Randy carefully put the stickers on her wheel covers and Jared and Chloe discovered foosball and a table top skate park for finger skateboards. Claire sat there beaming as Randy's excitement grew with each sticker that he placed. I struggled to try to keep my composure. Part of me hated that I got so excited that somebody was treating Claire like such a normal kid, shouldn't that just be expected? Part of me was mad at myself for not doing it more often. But the rest of me was just overwhelmed with joy that it did happen, it was truly beautiful and a moment that I really absorbed and treasured. As I publish this, it is a week later and it has been such an encouragement to have those stickers on the chair. Everywhere Claire goes, people have commented on how cool her stickers are and have identified her as a local. Every time that something was said, she just beamed that warm, glorious, bright smile that transcends words and it has been good.

Sunday afternoon stroll

2011-08-14T16:47:00.000-07:00

Chickens!

2011-08-13T11:55:00.000-07:00

Flowers

2011-08-11T21:53:00.000-07:00

Merry-Go-Round

2011-08-10T13:24:00.000-07:00

Dolphins

2011-08-09T15:35:00.000-07:00

On our morning walk, there were dolphins playing in the kelp, hard to see in the picture, but if you click on it, they are pretty close to center. It was a lovely way to start Tuesday.

Escape

2011-08-09T15:27:00.000-07:00

This is for Monday, I'm playing catch up :-)

Lazy Sunday

2011-08-09T11:12:00.000-07:00

Having technical troubles, sorry for the delay.

Beauty

2011-08-06T22:15:00.000-07:00

As I am contemplating beauty, this is what I found on wikipedia:
Beauty is a characteristic of a person, animal, place, object, or idea that provides a perceptual experience of pleasure, meaning, or satisfaction.^{[citation needed]} Beauty is studied as part of aesthetics, sociology, social psychology, and culture. An "ideal beauty" is an entity which is admired, or possesses features widely attributed to beauty in a particular culture, for perfection.^{[citation needed]}
The experience of "beauty" often involves the interpretation of some entity as being in balance and harmony with nature, which may lead to feelings of attraction and emotional well-being.^{[citation needed]} Because this is a subjective experience, it is often said that "beauty is in the eye of the beholder."^[1] In its most profound sense, beauty may engender a salient experience of positive reflection about the meaning of one's own existence.^{[citation needed]} A subject of beauty is anything that resonates with personal meaning.^{[citation needed]}
The classical Greek noun for "beauty" was κάλλος, kallos, and the adjective for "beautiful" was καλός, kalos. The Koine Greek word for beautiful was ὡραῖος, hōraios,^[2] an adjective etymologically coming from the word ὥρα, hōra, meaning "hour." In Koine Greek, beauty was thus associated with "being of one's hour."^[3]

^{Here is my photographic interpretation of the word for today:}

^{take out!}

Breaking my silence, but just for a moment

2011-08-05T07:50:00.000-07:00

I know summer isn't over yet but I had to break my silence for just a moment. I wanted to share two really amazing blog posts, one from a close friend that you can read here and another from somebody who I don't know, but hit the nail on the head, you can read it here. Neither post is very long but the thoughts that they shared were truly a blessing to me and I hope that you will enjoy them as well. As for the rest of my wordless summer on the blog...I am changing the challenge to myself a little. The last few weeks have been hard, very very hard. I am continually reminded that even in hard and difficult circumstances, we live in a world where beauty abounds. So I am really going to post a picture of beauty each day until Claire returns to school August 24th. Here is my first attempt. I really debated on whether or not to post this pic. I was sitting in Verve with Claire after dropping Chloe off at school. The song 'Sitting on the dock of the bay' was playing, she was enjoying her cup of whip cream and I my cappucino. It was indeed a moment full of so much beauty. Then Claire had an episode that caused her body to contort and her to stop breathing for a few seconds just as we were taking my empty cup up to the counter. In that momment I was so mad that rett had to ruin my perfect happy moment with Claire, but today I am choosing to remember the perfect and wonderful calm before the storm by sharing this picture with you. Here is to seeing beauty every day for the rest of August :-)

Beach therapy

2011-08-03T11:20:00.000-07:00

Chloe started school today!

2011-08-02T23:33:00.000-07:00

Maren!

2011-08-02T07:04:00.000-07:00

You will be greatly missed!!!

At the end of a very long week...

2011-07-31T15:59:00.000-07:00

Thursday

2011-07-31T14:51:00.000-07:00

Monday

2011-07-25T14:14:00.000-07:00

It was a very good day

2011-07-23T23:18:00.000-07:00

Just found these on my camera

2011-07-20T13:59:00.000-07:00

Bubbles

2011-07-19T09:49:00.000-07:00

words

2011-07-18T09:04:00.000-07:00

With summer being in full swing I have been getting more time with Claire and that has really been a good thing. I wish I had words that accurately and adequately described how much better my world is because of Claire, but I don't, not sure that they exist. Along that line, being with Claire more, I have really started to wonder about the importance of words. When Claire didn't begin to speak it seemed that an inordinate amount of emphasis was directed at language development, access to language (the Eco2) and now we are onto emergent literacy. While they are all very good things to work on and we will continue to pursue them, I think that it kept me from seeing the part of the world that is outside of language. Over the last few weeks, Claire has slowly been showing me all of the things that are bigger than spoken word and it has been beautiful to start to see things from this non-verbal perspective. We were recently at the aquarium when I realized that you can sit in front of the tank and take it in without a single word being spoken. The awe and majesty of the ocean is just bigger than what words can express and she can take it in just as much as everyone else without a single utterance. So in response to this realization and as a attempt to honor my non-verbal child who truly understands and participates in the world without being restricted by words, I will be blogging for the rest of the summer in pictures.

Where to set the bar?

2011-07-17T14:16:00.000-07:00

It had been a nice day. Pancakes with fresh strawberry sauce and bacon with the girls. Yummy coffee and then off to church. It was on our way home that we hit the snag. Some how, even having had coffee, I was exhausted so we decided to take the slightly longer scenic route home through the amazing redwood forest. There is something about looking at the light in the trees that is calming and energizing to me and the girls seem to enjoy it too. They were, until Claire lost it and started screaming and biting herself out of nowhere. My blood pressure shot up pretty fast but somehow I managed to stay calm for the 10-15 minutes of intense screaming. I suspected that it was because she had to go to the bathroom. I told Claire that if she would calm down, we would take her the second that we got home, but that if she continued to scream, she would get a time out once home before going to the bathroom. Suffice to say, we got home, she had her time out, I hid in our room with my good friends Ben and Jerry and eventually Captain Awesome talked with Claire about the time out and took her to the bathroom. As it turns out, she was dry, and she voided while sitting on the toilet, which confirms my two suspicions. 1. she was upset because she had to go bad 2. Claire is VERY capable. This is something that I really struggle with. I often wonder how often I set the bar too low or expect too little of her. Most often it is selfish. Like when she is screaming in the car and I know she will calm immediately if I put on her favorite music, but I am pretty sure that would only teach her that I am a puppet that is easily manipulated. Then there are times that I am afraid to try to have a high expectation for fear that I am just setting her up to fail because she has a very legitimate disability that doesn't let her always do what she wants to. For example, I wouldn't want to say, hold it until we get home, because she really might not be able to. I am curious, how have you dealt with this? Do you ever find yourself feeling like she is capable of so much if you could just be better at supporting her?

Good

2011-07-12T12:58:00.000-07:00

"Good!" That is what our friend Emma said to me as we sat outside after having a lovely dinner together. You see, Emma has Rett syndrome just like Claire so I didn't really expect her to say anything to me with her words. Sure, she and Claire had been talking all night with their eyes, but this comment caught me a little off guard. I responded to her and made a big deal and both girls thought it was absolutely hilarious, there was a lot of laughing going on that night, it was indeed good. Let me back up, to give you a little more insight into just how good things have been. I will put my disclaimer out, they haven't been rosy or easy, but they have been good. It all started with the best 4th of July of my life, hands down. We somehow managed the parade, a fun dinner of sausages and corn on the cob and tailgating for hours before the fireworks all with both of our children being pretty happy the whole time. Holidays are often hard. We find ourselves celebrating very differently than the rest of the world and often dread it. Two years ago we would have never even tried to take Claire out, she would have screamed, we would have hated ourselves for it and we knew it, so we stayed home, which we also hated but was slightly less embarrassing. I am learning that it really does get better with time. I think that is why I enjoyed our time with Emma and her family so much. Emma is 8 and she has a little sister who is 4, so they are just about 2 years ahead of us. The day before we met up I got an email from Emma's mom. They were on a road trip style vacation and ended up 10 minutes from our home. While I was thrilled that it meant we got to meet up and hang out I must admit that I had the thought, 'who goes on vacation with their two children, for that long and without really knowing where you are going months in advance'. It wasn't so much a judgement but more of a 'you can do that?' I had no idea! When Claire was younger, it was so hard to travel that I think I just stopped dreaming about it all together. I actually remember telling a good friend that I had given up traveling all together in the same conversation that I told her about Claire's diagnosis, that is just as far as I could see. Spending time with Emma and her family was sort of like looking a little further down the road and I honestly think it is going to slowly get easier with time. The next amazing and good thing that we had on the agenda was a birthday party for our friend Avery. She too has Rett and was turning 5. I know her mom pretty well and am so incredibly proud of her for throwing Avery such a lovely birthday party. It was a small miracle that we were able to attend. For starters, they live and hour and a half away from us and on top of that, it was a pool party, at a country club. While that doesn't sound like a bad thing (and it really isn't) it isn't our thing and I knew that it might feel uncomfortable being so far out of our element. We were prepared for both of our children to start screaming within a few minutes of getting there and had a few different exit plans already worked out. In fact, we had a lovely time! We went to a real birthday party, all four of us and everyone enjoyed it. It did help that Katie was there to sit with us by the side of the pool and Chloe didn't crack her head open as we figured would most likely happen. As the party wound down we packed up our crew and headed up to Sacramento where we would spend the night and then see Kathy, the girls favorite Aunt. By this point Jared and I were just beside ourselves with excitement that we had done so much and it had gone so well. That was dampened slightly when Chloe screamed so hard for so long that she vomited all over and again when Claire was screaming as we walked through the lobby, went up the elevator and most of the way too are room. But through this we learned that we are getting better at clearing the hurdles, that a few intense moments don't ruin a day and that when everyone stays flexible, it is way easier to bounce back. Bounce back we did! Claire enjoyed watching motorcycle racing, we went shopping with Aunt Kathy and finished with a lovely dinner at Joe's Crab Shack and a stroll around the old downtown area. I even got to eat my dinner, at the table, at the same time as the other adults!!! Again, something that I hadn't even thought to dream of. So with a belly full of snow crab (amazing!) and two happy little girls, we made the drive home. I couldn't help but think that it is seeing the families that are both two steps ahead of us and one step behind us that really help me to appreciate where we are today, what we have come through and the possibilities for our future. It is indeed good.

Tubthumping

2011-07-02T15:44:00.000-07:00

A few weeks ago I did one of the hardest things I have had to do so far. I took my beloved DaVinci (the one sleeping on the cat tower) to the animal shelter to surrender him. I had hit my breaking point when Claire was having an episode where she was dystonic and as she came out of it, aspirating on her saliva and at the same time, DaVinci hair balled and Chloe went to play in it. After talking about it for a while, I finally resigned myself to the idea that it really would be better for everyone if he found a new home. I cried more on that day than I think I ever have. As I sat there waiting for my turn, I saw several people going in and out with excited children who anxiously awaited their new pet. It was one of those moments when the reality of rett syndrome really hit hard. I shouldn't be having to do this because Claire shouldn't be having these episodes. In fact, we shouldn't even have been home, we should have been out at the park or the beach, but we weren't. The fact is that I have been dangerously close to the edge of insanity. The back and forth of Claire having terrific days all while having these monstrous episodes is really more than a person can handle and stay in their right mind. As I have struggled to not fall over the cliff and lose it, the advice I get has been consistent, take care of yourself. Identifying that DaVinci was taking energy from me that I didn't have was one of the steps that I have taken on my journey of violently fighting to keep my sanity. While it was a hard thing, it was good. Recently Athena, our other cat who loved Claire very much pushed me harder than I could handle. We had kept her as she is so loving to Claire. If Claire is upset, Athena will sit next to her and just wait for her to feel better. Claire has gotten so good at reaching out to feel Athena's fur, which in rettland is a pretty amazing feat. However, she has taken to sitting on my pillow at 5am and yelling for food, this coupled with shrinking patience for Chloe, we felt it was time to say goodbye and let her go find a new home. I talked with Claire about it and to my surprise, she lit up. I am pretty sure it is part of her plan to get a dog as she knew we couldn't get a dog because of the cats. (It will be a few years before I am ready to entertain the idea of another pet with legs.) So today after our fun trip to the aquarium, I put Athena in her cage and headed back to animal services. I turned on the radio and Tubthumping came on. It was perfect. It is an anthem proclaiming "I get knocked down but I get up again. You're never gonna keep me down." I might keep getting knocks that I am not expecting, but I am going to keep going. I am going to continue to fight for my sanity and enjoy my days. I have to say as hard of a decision as this was, it really feels good. I am in control of some things and I think that I am making some good decisions with those things.

The Sound of Music

2011-06-30T17:05:00.000-07:00

I am really excited about this post. This story really embodies the whole concept of my organic experience in the sense of life giving you something completely unexpected and wonderful and I got to sit back and just soak it up. However, like many of my stories, it begins with frustration related to rett. We were on our way out the door to take Claire to Kid Quest so that I could get some respit. I suspect that while I was putting Chloe in the car Claire developed the urge to go to the bathroom. As Chloe was already in the car, I asked her to hold it and told her that if she didn't make it it was no big deal. That provided absolutely no solace and she proceeded to go absolutely crazy. Screaming and biting her hand, yes you can do both at once. It wasn't normal I am irritated screaming, it was the venomous I hate my body, I hate that I can't talk, I hate that you don't read my mind raging anger screaming. By this time we were in the car and the thought did occur to me, just put on her favorite audiobook, it will calm her. But I know that she can calm down on her own and I do not want to lower the expectation just because I am tired. So in the interest of neutral music (Claire and Chloe each have their favorite and we typically rotate between them) I put the radio on the classical station. I then drove and count to five out loud, modeling deep breathing. As Claire started to calm I could hear Chloe speak, "Mommy, is this the song about Ariel?" In an instant I felt as if a bomb had exploded in my head, so many thoughts, so many emotions, stay calm, it is a two year old, you can do this I thought. I then answered and we had a dialogue about the story that Chloe heard in the music. First of all, I am still in awe every time Chloe speaks in a clear sentence not to mention that she can convey what she experiences in her imagination. I don't have an imagination really so that part really amazes me. We dropped Claire off at Kid Quest and then drove home. Now that the screaming wasn't filling the background, I could think a little more. Listening to the music and the narrative that Chloe provided took me back to 7th grade when I lived in Albuquerque. My cousin played the cello and was really my introduction into classical music. I remember her explaining how she favored Handel as it had preferable cello pieces in it. During the year that I lived there I enjoyed when I got to hear her practice or perform. Perhaps it was the exposure to the music in person that had such a deep effect on me and when we moved away, I heard less of it, with time my fondness and appreciation for it just faded. Until today that is. It must have been because I was in such an emotionally raw state, but when Chloe started to describe it to me, I heard the song in a very different light and I enjoyed it. In fact, I reveled in it. I thought of how I had dreamed when Claire was a baby that someday she might play an instrument such as the cello or the violin. Even the memory of the shattered dream didn't kill the moment. I began to think what a wonderful vehicle music is for non-verbal communication. In a sense it seems like an equalizer of sorts. Words are such a hard thing. There are some that are good with them, but many are not. Words seem to be so limiting when it is something greater that you desire to express. I do believe that Claire will have her chance at this expression. She enjoys the arts so much, today was such a sweet reminder that even without spoken words, she has a lot to say and there are vehicles for that don't involve language, good thing I have Chloe to remind me of that.

Foggy

2011-06-26T22:40:00.000-07:00

This week I learned that you never know just how close you were to the edge until you take a few steps back. We have just two more days and Claire will be back to school after three full weeks off. It is all a bit of a blur. I know that there were a few doctor and therapy appointments, playing in the sand and Claire has been spending almost each day at Kid Quest. There has certainly been a lot of ups and downs or excitement as I like to put it. As wonderful and exhausting as the days have been, it has really been the nights that have gotten me through this stretch. If you live in Arizona or some other really hot climate, you might not want to keep reading, I am about to brag about our weather. It started after my first Monday with both girls all day. After three hours of Claire screaming and me calling our social worker sobbing, I thought it best to get out solo once Jared was home. I met up with my friend Kat and we walked, stopping down to chat at the cliffs. As we stood and I took several deep breathes of the cool salty air, I saw the most amazing thing. The picture above does not do it justice, but it is of a momma sea otter who was carrying her baby across the bay. They would separate and play and then she would swim with the baby on her stomach. It was so absolutely enthralling to watch. Watching the fog roll in, the otters playing and listening to the waves, it just melted away the tension in my body. I have made several more trips to the coast at night since then and I really think it has been one of the most important things that I have done over the period of the last few weeks. I have found that I have had more energy and a little more focus throughout the day and a slightly clearer mind. The picture below was taken on West Cliff, at the light house. Jared and I got out to walk together in the cool fog and it was absolutely life giving. It feels a little shallow to be so thankful for just weather, but I am. It has been the margin that I needed to get through a long stretch. Yes I am a little foggy this June, but I really do think that is a good thing.

Out of this world

2011-06-20T16:21:00.000-07:00

Claire uses an Eco2 with EcoPoint to speak. She has had it for just over a year. Over the last few months her use of the device has really blown up so to speak. Her communication with it is less frustrating for her, she is less fatigued after using it and the people around her have gotten better at implementing it. I have seen a lot of talk in the rett community about page sets and different set up options for the various talkers that the girls use. We have found that the best option at this time is to stick with the Unity language that PRC has for it's devices. The icons are very strange to most adults who have to learn it and at first glance the organization seems odd. But Claire took well to it, so we have stuck with the 45-sequenced for her page set for the last year and I am so thrilled that we have. For the last week, she has been going to her school tab, then to science, where she then says moon and planet over and over and over again. It has been so incredibly annoying. Then came father's day. At the end of school she had brought home a wrapped gift for Jared and we opened it this weekend. As soon as it was unwrapped, we turned to Claire to ask her if that is what she meant with all of the moon/planet talk, she lit up. She was so proud of herself for saying what was on her mind, even if we didn't understand and when we did get it, it was clear that she felt validated. It was one of many, small moments that made the year of trial and paperwork to get the device as well as the year that it has taken to learn the language completely worth it. So to those of you who are on your way to a talker I really want to encourage you. It takes what feels like an eternity, the circus tricks that you have to perform to get the device are ridiculous and could easily lead one to give up hope and stop trying, but please don't. When you are least expecting it, she will use it in a way to communicate that you hadn't dreamed of her using it before. Especially when it is spontaneous and you are not looking for it, that is when she blow you away. My two other cents: I love PRC and Unity, it is the access to the typical words that we use every day that have most allowed Claire to talk about the things that she wants to talk about. If she was using page sets full of words and things we already knew she wanted to talk about, how could she ever surprise us with the stuff we didn't know about her. If you are still in the trial phase, look into PRC, for whatever reason they get less press, but it is an amazing way to give communication to the girls.

Happy Father's Day to Captain Awesome

2011-06-19T09:27:00.000-07:00

It is true. I am one lucky momma to have a counterpart like I do. In case you are wondering how my husband got to have such a title, you can read about it here. I don't know if awesome is really a good enough word to describe a man who can: wear a crown to a tea party, wear a glitter covered t-shirt in public to support team Claire, drop everything the second he walks in the door to have bath time with a two year old, stay up late when he is exhausted to check on Claire and make sure she is still breathing and read Dr. Seuss over and over enough to have memorized most of the collection, but it will just have to do. So here is to Captain Awesome, the best daddy these two girls could dream of.

Little Miss Hot Wheels

2011-06-18T16:29:00.000-07:00

Finally, it's here! After what seemed like forever, the chair is mostly here and it was clear very quickly, this chair is a game changer. It has taken a little getting used to and it doesn't help that some of the parts that were ordered still haven't come. They called to cancel delivery for the 4th time and I told them that as long as there was a cushion and four wheels, we would take it. One of the parts that is missing is the seat belt. We never really used the belt on the other chair, so I figured no big deal. Which it wouldn't have been, except as fate would have it, on our first long walk, we had a bit of a run in. You see, since we go on walks by the ocean, there are often surfers. Well on Wednesday there was one in particular that was walking the other way with a pretty fancy short board. He smiled as he passed us and somehow as we crossed, the leash from his board snagged something on Claire's chair and she went flying, face first, open mouth, into the dirt. It really happened the best possible way, that she flew sideways so that her face did not land on the pavement, like her knees did. The guy felt horrible and stopped to help. Some old miserable bastard riding by on his bicycle took the time to ask me why she wasn't belted in, that sure helped things a lot, not really. As I got her back in the chair and tried to pick as much of the dirt out of her mouth as I could it was impossible to notice that she was beaming. Each time I told the story to different people throughout the day, her smile just got bigger, the girl is made of tuff stuff for sure! That night Captain Awesome routed around the treasure trove of spare bits and pieces from all the durable medical equipment we have around. He found the foot straps that we had taken off the old chair and we now have a fabulous makeshift seat belt, should we have any more run ins with rogue surf boards. For our next adventure with the chair we headed down to the Monterrey Bay Aquarium. Not long ago Chloe broke Captain Awesome's favorite coffee cup with their logo on it, so we adventured out in an attempt to fill the coffee mug void. They no longer had the cup that we were looking for, so Claire, Chloe and I decided to make the most of the trip and play while we were there. First we hit up the slide in an effort to vent some of Chloe's unending energy. While she ran in circles, Claire was able to roll right up to the glass of a beautiful saltwater tank, she so loved being able to see the fish up close. I hadn't realized how much of a barrier her old chair was until we were out and about with the new system, but it was dramatic. If you look closely, you can see that the old chair was at an angle, so her legs were out farther than her head and she could not roll up to things to see them because of the slight tilt.

From there we went to touch the sea stars, which I could do with both girls by myself since Claire could reach while still in her chair, it was amazing. Since my journey with rett has driven me to insanity, we journeyed a little further to the other side of the aquarium to the drifters exhibit. At the entrance to the exhibit there is a huge tank in the ceiling with sardines swimming in circles. For the first time, Claire was able to move her head all around to take in the full scope of it all. Even Chloe stood still to marvel at the fish in the ceiling and as I watched them both turning their head to look up, in a completely similar fashion I almost lost it. I have found that people do stare more when you cry when your children are behaving well and with that thought I was able to take a deep breath and just enjoy it. The head turning and the enjoyment of the new wheels didn't stop there, I can't believe how much more she is taking things in at her new and improved viewing position. In addition to just the improved angle, this chair seems to have given her a bit more confidence. People seem to see her as a little girl a bit more, they tend to be more apt to wave and say hello now that she is in a wheel chair. I forget how people just aren't familiar with our weird and intricate special needs world. When they saw her in the big stroller I don't think they knew what to say, but a little girl in a wheel chair for some reason, as strange as it sounds, is much less intimidating. I will leave you with one more picture, it makes this point well, she could never lean like this in the other chair. So if for any reason you are looking into a chair for your daughter, I urge you to look past the stroller looking chairs. This chair does have a flip away head rest and once the seat belt gets added, she can use this on the school bus. It is lighter than the convaid that folded and fits easily into the back of my car. It also comes in a lot of cool colors, which I desperately tried to convince Claire are better than pink, but you can see that didn't work. My only regret is that we didn't do this sooner.

YES SHE CAN

2011-06-08T22:10:00.000-07:00

Oh, and she just did! I know that it is nothing new that life is a roller coaster. The last few days have been a ride with levels that I never could have imagined. But before I get into that, let me back up. In my last post I discussed how Claire had been having a really hard time. It seemed as though she didn't have a standing chance against her body. I will admit that at the very end of this last run of crazy, even I had lost sight of the possibility that she would bounce back. Watching her flail like that was new and different and I for some reason associated different with not good, praise God, I was WRONG. Never in my life have I been so happy to be corrected by my child. It is so humbling, knowing that I had started to give up a little when she was deep inside, fighting like hell to come back, and she did just that. It has been almost two weeks since the end of that craziness. I wish that I could figure out what happened, what caused this to turn. Logic tells me that in order for somebody to go from being so out of control of there body, for an unspecified reason, that something has to change or happen to make it better. Here is a list of the things that we have changed, not sure if any of these by themselves or in some combination are what did it, but these are the only variables that I can think of:

-stopped using Nasonnex for allergies
-added coconut yogurt as dessert after dinner
-started listening to the Beastie Boys in the car
-learned that Guy Fieri has a restaurant close enough for us to visit (she is overcome with him, could watch Diners Drive-Ins and Dive all day!)
-was given the oppertunity to answer questions in group at school and got them all right (sad, this is new, all due the Susan Norwell handouts from the conference)

Yes, our life is that boring and predicable that in 10 days, those are the only things out of routine that happened. With those being the only changes that have happened since she snapped back and came back to us, let me tell you what new and exciting things she has done in the last 48 hours. I will have to just list them because there is too much for me to try to put in paragraph form, I am loving this problem!

-reached ot goal of lip closure with straw drinking, I can count on one hand the ot goals that she has reached in a lifetime
-when a new consultant came to the house to meet her, Claire immediately looked at her talker to say "It's nice to meet you. My name is Claire. I am 5 years old. This is my talker, it helps me speak.) Before going to to tell her full range of jokes.
-played keyboard (the full range of keys) with her elbow while holding the pt's finger and side sitting, she also laughed hysterically when she turned on the very loud background beats, which she had to cross mid line to do
-walked 12 minutes on the treadmill without a break, using much less assistance from the pt than normal
-drank an entire glass of milk, ate all of her veggies, pasta and yogurt in just over 30 minutes (dinner typically takes at least an hour)
-balanced on the toilet all by herself for several minutes
-communicated with her aide that she wants to use the raising of her leg as a signal for when she wants to go to the bathroom, then used the signal 5+ times, going right away each time
-stood holding onto nothing more than the bottom of my shirt for several minutes (while Chloe peed on the big potty for the first time)
-stood for 20+ minutes, with her arms on the counter in the bathroom while I again attempted to wrangle Chloe, the whole time either looking at herself in the mirror and making funny faces or laughing at the shenanigans that was underway, not leaning or slouching once.
-purposefully threw her arms around my neck and squeezed to give me one of the best and most memorable hugs of my life

It has really has been a record breaking few days in our little world. It leaves me with so much to wonder about. Like how does she she go through the bad days, never giving up. When she can't hold her head up to eat but she is still trying. When her legs won't support her weight and she still does her best to stand. What on earth is going on in her head that would temporarily take so much away from her and then return it only to be stronger. As a 5 year old, how does she cope with these sudden swings in what she can and can't do. How did I ever let myself give up before her? How much longer will this go on? Will it be two weeks on two weeks off forever? Either way, I will take it. As hard and painful as the hard times have been. Knowing what I do know now, I would do it all again to get where we are today. Today Claire was better able to be herself than I would have dreamed of a year ago. She continues each day to show us the level to which she fights, the depth of her spirit and the brightness of her personality. Our first week in rettland another rett dad told me, "Claire will do exactly what Claire will do." To this day I am still wrapping my head around that profound truth. As I step into tomorrow, not knowing what it holds, I know that she will do just that and with no expectations I look forward to it, knowing that it will be far greater than what I could dream up.

BOSTON!!!

2011-06-04T07:34:00.000-07:00

Making your way in the world today takes everything you've got.
Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away?

Sometimes you want to go

Where everybody knows your name,
and they're always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

You wanna go where people know,
people are all the same,
You wanna go where everybody knows
your name.

Cheesy I know, but it just fits! Last summer a bunch of us ended up in Las Vegas on a whim. Erica, my always wonderful travel buddy gave everyone in the group little photo books with these lyrics inside, it was the theme to out rettaway. Fast forward to Memorial Day weekend 2011, in Boston and the Cheers bar is right around the corner from where we were staying. Many of the crew from Vegas were there, those that weren't were certainly missed! It worked out that a few new friends joined in too. I have to say that the absolute best part about the trip was my rett family. Being at a table, where it is just understood that everyone there has been pushed closer to the edge than they would ever have imagined. We didn't need to talk about rett or our girls, but just that everyone had the same common thing in the background made it that much easier to laugh and cry together, which is pretty much what we did all weekend. As much as rett can often feel like a nightmare, being with these people really does feel like a dream. I didn't bring my camera so no group picks, sorry. The pic up top is Dawn, who I wish I had seen more of but the little bit I got was great! Also along on the trip was Maren, who I have to give some sort of flexibility and funness award to. Because of her faith she doesn't drink tea or alcohol, yet she went to high tea and sat in a few bars with us, I hope that someday I can be as easy going, spontaneous and fun as the lovely Maren. In addition to being out and having some good friend time, I also got to enjoy the Boston Common and Public Garden.

Having lived most of my life in Arizona where everything was relatively new, it was so much fun to learn about the rich history of this area. From the flags on display to the statue of George Washington and all of the unique trees, it was a wonderful place to stroll with a few different friends as well as a haven when I had hit my information limit on Sunday.

To top off my escape to the garden on Sunday, the church bells from the church in the above picture were amazing. After the chimes for noon they played the hallelujah chorus and it was stunningly beautiful. A true gift. The trip wasn't just fun with friends and strolls in the garden. There was a wealth of information to take in and honestly I think I am still processing it all. Dick Hoyt of the world famous Team Hoyt spoke. To say that was emotional would be a great understatement, it was more than I can put into words, so I will just put up the video and tell you that as this video played on the screen in front of the whole group, Dick Hoyt stood on the stage and wept while watching it, there wasn't a dry eye in the room.

From there on a lot of people talked about a lot of important things. I mean really smart people who are amazing and have given to our community in the most generous way with their dedication to either working to fix it or make it better today. One of the presenters was a sibling, who grew up alongside rett syndrome and now teaches and has a lab and is a part of the solution that is coming. There was also a lot of info on literacy and communication. I am very excited that I have already shared some of what I learned and Claire's teacher is already making a plan to teach her to read next year! The biggest news of the weekend was IGF-1. The idea is that somehow having the MECP2 (which is where rett lives) broken in your brain reduces BDNF and IGF-1??? So if they raise the IGF-1 then the BDNF goes up and then the body works better. It is really pretty complicated and there were a lot of very smart people who did there best to explain it to the pea brains like myself. But regardless of how it works, most importantly, I think it DOES WORK!!! After two days of brain numbing information, there was a little two sentence blip by the primary researcher. It included words like 'preliminary' and 'very positive' and 'moderate improvement'. All words that I don't generally associate with rett syndrome, until now. I left humbled and encouraged. There are amazing people working so hard to get the girls a better life. Both in the labs, in the clinics and the schools. I am in the company of some of the greatest friends a girl could dream of. As hard as it might seem day to day, I keep hearing the words of Dick Hoyt in my head, "YES YOU CAN!"

A wrinkle in time, or just a week

2011-06-02T13:25:00.000-07:00

A week ago I posted this pic to my facebook profile with a caption "Flight departs in less than 12 hours. I should be packing but clearly I am just too busy for that right now."

While that was true, it was really only a half truth. What you can't tell from this picture is that I was trying to give Chloe some much needed attention as her sister had been getting most of it lately. The past two weeks had been very hard for Claire as I mentioned in my previous post. We had spent all afternoon in the GI's office at LPCH the day before and we had pulmonary scheduled for later in the day. We had gotten to the point where all of the sudden all the specialist could see us not because they had time, but because they were worried and honestly, so was I. So to prepare for our second straight day of marathon doctor time we went to the beach. As it turned out, none of the specialist had anything helpful for us other than, this is not good, sorry I can't help you, call neurology. I was really nervous about leaving with Claire in that state. That is just how she is, no intervention was needed, but I was worried about leaving. Her primary care ped. told me "well, at least if something crazy happens in the middle of the night we all know that she was checked out and everything was fine" As comforting as she was trying to be, it was yet another painful reminder that it does happen, that you wake up and your child doesn't, morbid I know, but that is where we were at. We finally got home around 5:30 and my ride to the airport was coming at 6:15 so I decided that I did indeed need to pack. Then the most amazing thing happened, Claire came back, just like that, she came back! Jared had taken her to brush her teeth and go to the bathroom and she just popped right back into her body. As I kissed them both goodbye, Claire sat on the couch, straight as an arrow, bright eyes, quiet hands and that sweet smile. It was a really great way to leave, I honestly can not think of any better circumstances to leave under other than maybe being a little more rested. What happened next, as far as going to Boston, being in Boston and then coming home will have to be another blog post, which I will try to get out sooner then later. But you can see from my picture below that I took today, I really am just too busy to be bothered with a lot of things. This picture is a much better representation of what is going on in my life today. This morning we went to the beach not because we desperately needed to, but just because we could.

It was the best of times, it was the worst of times

2011-05-19T15:53:00.000-07:00

Warning, do not click to play this video unless you are in a place where you can cry or get pretty emotional, it might be very, very hard to watch.

This is how my day started. Claire woke up 'not really in her body' all the while pretty happy. She enjoyed her bath, although she was too floppy to sit up, she very much enjoyed getting to lay in the bubbles and get a full body rub down with her favorite salt scrub. We attempted to start breakfast when the twitching started. Captain Awesome started to record it so that we could send it off to the docs for professional opinion. As he recorded it got worse, this is just a little clip of what went on for a few minutes. To be honest it is a very difficult way to start the day. Eventually she improved and with deep pressure to her shoulders to help keep her neck up, she was able to eat her breakfast. I am pretty convinced that it is indeed dystonia and not seizures. That being the case, it seemed that the episode had passed so we put her on the bus and off she went to school, still unable to hold her head up, able to smile none the less. At this point I would have really loved to have taken some pill to make the pain go away, crawled back into bed and pulled the covers over my head for the next couple of days. With Chloe literally running circles around me, that proved to be a challenge and it is Thursday, so we had to get to music class. Once that was done with, I went with my next best option, coffee. I know that it is silly that I depend so much on our coffee shop. It is so much more than caffeine for me. Yes, they do serve unbelievably good coffee and I have been so spoiled by it that I generally opt to not drink coffee anywhere else. As cliche as it sounds it is the smiling faces, all of the yuppies with there macbooks, the students reading really big books about super important things, the place just has a vibe about it that melts away worry and stress. Like most other days, as I was up at the counter ordering, one of the staff asked how I was doing. I was able to smile and respond with a "pretty good" that was surprisingly authentic. In that moment I almost felt like I had betrayed myself. How could I be pretty good? Claire couldn't hold her head up to eat breakfast, she stopped breathing twice that morning, that doesn't fall under the column of pretty good, that doesn't even fall into the alright category. I am pretty sure that any time breathing all together stops for any period of time it goes straight into the sucks column. Quickly I snapped back into the moment as Chloe went on to greet each of the staff by name, yes, I drink a lot of coffee. Then we walked. As we walked I heard the birds chirping, the air was full of that fresh salty smell and my toddler was in the stroller singing. Moments like that I just can't help but try to count all of my blessings only to find that I can't count that high. We continued down to the beach, but it was high tide, so we sat on the stairs and watched the waves. They are mesmerizing. I could never tire of watching the kelp curl in the wave and the sound of the little bubbles as it washes back out into the ocean. Such a strange life, to have such highs and lows so close together. Today I learned that I have indeed grown as I have been weathering the storms. Finally, it is starting to feel like perhaps rett syndrome/scoliosis/dystonia is just a part of my life, my very wonderful life.

So much more than 3 miles

2011-05-17T12:57:00.000-07:00

May 7th was the annual Human Race in Santa Cruz, our first (definitely not last) and it was great!

Claire has the most amazing ABA team and they not only joined us to raise money for Kid Quest, they made special team Claire shirts as part of her "program", surprise the design included lots of glitter.

Claire was in heaven getting so much attention on Chloe's birthday.

Lots of teams dressed up, this was Save Our Shores, always great to see a jellyfish walking!

The drumming at the turn around spot was really cool, both of our girls love drums which made it even cooler.

Claire has the best friends at Kid Quest, this is Leigh and her dog Annie.

Chloe never passes a chance to stand on her head.

Claire got some time with Valerie and Ferdinand, two more great friends from Kid Quest.

I sure did a horrible job raising money for this. But each of the three donations that we got meant so much to us. There is something so powerful about community getting to raise money for all of the small organizations that is just inspiring. Heather actually ran with Claire. The plan was that they would run a little bit and wait for us at the first water stop. As they ran, everyone cheered them on, apparently half the world knew Claire and with so many people cheering for them, they just couldn't stop. The great irony here is that we started getting ABA therapy for Claire because the screaming on the walks was overwhelming. We had become trapped inside our home on weekends because she would consistently loose it on a walk or outing. After nine months of work and making just over a million yes/no decisions, Claire ran over three miles, not once was there anything close to screaming. She was the life of the party the whole time. A year ago, we would have never imagined having a community center to help support or a team to help us with that, sure is nice to sit back and look at just how far we have come and how much is possible.

How I do it

2011-05-12T08:57:00.000-07:00

One of my good friends and fellow rett mom is hosting a round of "How do you do it?" on her blog. I was honored when she asked me to contribute. It took me a while to go down the list of topics I could talk about. Partially because I feel like my brain isn't working that well and I can hardly complete a thought, more or less really figure out what would be the best thing to discuss, so I just wrote about what is closest to my heart right now. If you want to read "how colleen does it" you can click here to see my ramblings.

My open letter to Chloe on her birthday

2011-05-04T14:34:00.000-07:00

Dear Chloe,

It doesn't seem like a year since this picture was taken, but this is what you looked like after you had your first birthday cake.

You sure learned a lot in the last year but you taught me even more.

You love being as close as you can be to your big sister Claire.

You learned about books and love to read stories.

You went to your first July 4th parade.

You figured out how to balance a crown on your head, one of your very favorite things to do.

You got both of your cute chubby little legs stuck in your crib trying to climb out, so we had to cut your jammies to get you out.

You enjoyed lots of wagon rides.

You discovered flowers and how much fun they are to pick and put in your hair.

You also discovered dirt and how much fun it is to play in.

We took lots of walks along the cliff, saying hello to the ocean and everything in it.

One time, you even slept, but not after first putting on a tutu.

You taught me that sometimes, one just isn't enough.

You played in the park and loved going down the slide.

When there weren't flowers to pick, you found leaves to play with.

You cheered for Claire as she worked so hard.

You picked out your first pumpkin,

and ate your first pumpkin pie all by yourself.

You loved going to look at Christmas lights.

You spent a lot of time getting coffee and eating yummy treats when it was too cold to play outside.

You drove your first boat, electric at that!

You delivered hot apple dumplings, not really, you just played on this fun truck.

You played with Athena and learned how to be gentle around animals.

You fell in love with the fish at the aquarium.

Not even the cold could keep you from playing on the beach, fully accessorized with your purse and "crown"

You love sitting on Daddy's shoulder, he really likes it too!

You take such good care of your baby, always taking her temperature and checking her pulse.

You discovered how much fun it is to flirt with the waves and get your pants a little wet.

You played at music class, where you love to sing and dance and play the drums.

You went to the boardwalk and went on your first carousel and loved having the wind in your hair.

You colored and each time you did, my heart and my brain just about exploded with awe.

You love kelp, you like to play with it on the beach, make a necklace of it and bring it in the car.

When there was no beach, you loved to play on the stairs, a lesson everyone could learn.

You love french fries from In'N'Out and think that it is great that you get a hat when they are gone.

You had your first ice cream sandwich, we didn't even have to teach you how to eat it.

You loved on Claire, over and over.

It was a miracle and snowed here, so you even got to see snow for the first time this year!

You taught me that yes it is in fact important to have sunglasses in every single color.

You learned about tide pools and all the little creatures in them.

You also learned about big creatures and how to respect them.

You played on the beach with Dad.

You are just a natural lover of nature and it shows.

Again, you had fun with Dad, he is a pretty fun guy to take to the boardwalk.

You had your first Jamba, again, I didn't even have to show you what to do.

You loved going on the swings.

After all that playing on the beach, you started to build fancier towers.

You taught me the joy of getting my feet wet, it really is fun!

You are the most graceful airplane that I have even seen flying on the sand.

You love your "camera" and to take pictures with it, I figure mental images count.

There isn't a place that you play where you don't try to stand on your head.

You really are so full of love, it is constantly spilling out of you.

You take care of all the princesses, getting them each a drink and something to eat, such a good friend you are!

For that matter, a really great sister too!

Your smile has brought so much joy to our family. Chloe it has been such a fun year. I have to say I am a little exhausted, but in a good, that was fun, let's do it again sort of a way. I can't wait for all of the fun that is in store for the next year. I know that a lot of people say it is the terrible 2's. I know that it won't always be easy, you have a lot of stuff to figure out, growing up and all that. But if at all possible, could you please make sure to mix it up and through a little good in, even on the hard days, that would sure really help, thanks. I love you, Mom

After the Storm

2011-04-30T16:10:00.000-07:00

I can great hopes for this post, a nice positive post about how even through complete and utter exhaustion I am loving my life. I would love to go on and on about how much I am loving spending time at the ocean with Chloe while Claire is at school. Or how cute it is that Chloe pushes her baby to the bus while I push Claire. Isn't imitation one of the highest forms of flattery? I just hope that Claire isn't hanging out of her chair like that.

I was going to blog about how great it has been to reconnect with food. Not only have I been loving getting to cook all of the food in the CSA. I have been cooking with the girls and I am loving every minute. We made whip cream together and then they helped me assemble the strawberry shortcakes. Teaching them about food, where it comes from and how it works really is a dream come true for me. The large majority of my life right now feels like a dream come true. It is truly a privilege to get to be a stay at home mom and I certainly am not taking it for granted. I really do feel like the storms that have been hitting us over and over have subsided and it has left me open to really enjoy it all. As I try to sit in a place of gratitude and appreciation, all of the sudden I get smacked in the face with the rest of the reality. The ugly not so wonderful part of my life. You see, this week Chloe turns 2. I know that doesn't sound like a bad thing and really it isn't. Except for some reason it made me think about when Claire turned 2. It was two weeks after we had gotten the diagnosis. For her birthday we took her to an evaluation for therapeutic horseback riding. I had forgotten to get a cake or anything of the like so we swung by the market on the way home and picked something up. We had a friend with a daughter close in age with us that day. The two girls sat at the little toddler sized table and ate their cake together. That's right, Claire fed herself cake. I remember it so clearly. I know that Chloe will also feed herself her birthday cake but I will look at it differently. As happy as I am that she is such a brilliant and vivacious little girl, I can't help but wish that for Claire as well. I know that everything in Claire's spirit wishes to run and jump and play the way that Chloe gets to, to eat cake and be silly. In the big mess of thought and emotion that is swirling within me I, I keep hearing these lyrics:

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

I know that this wave of grief and pain will come and go. My hope is that tomorrow will be one of those days, one filled with love that washes away all of the bad. At the very least I do expect that it will be a lovely day for a walk and we can always put flowers in our hair.

Best.Easter.Ever...at least so far

2011-04-29T08:50:00.000-07:00

Step one, two hours at the beach.

Step two, making our own dye using red cabbage and beet peelings.

Step three, have a ridiculous amount of fun.

Followed by beets cooked in leftover bacon fat from breakfast.

I sure had some great help for the project.

It shows, the eggs came out great!

It went so well that we did baskets for the very first time.

So glad that we did! The girls loved it!

Then we were off to the aquarium to meet up with Kat, again, an abundance of fun!

The great time was perfectly completed with a trip to Ghiradelli for ice cream.

After great naps the girls had so much fun playing, giggle and joy filled our home.

The two pretty much cuddled and giggled themselves to sleep, sorta what dreams are made of, right?

Possibilites...

2011-04-23T17:00:00.000-07:00

If you have been reading this blog for any amount of time, you would know that I am often tired. It was a week and a half ago that I got pushed too close to the edge and had to take an emergency step back. Claire was back to her lovely seizure-free self, but somehow between the late nights and the sleep study leading up to that, I became absolutely exhausted. Then we had the unexpected opportunity for an impromptu appointment with our neurologist, which was great, just not a restful experience, driving in San Jose at rush hour never is. It was Wednesday morning, Claire's last day in the autism class before going to the new school and I broke. I called Jared to inform him that I would be checking into a hotel to sleep on Saturday. Of course being Captain Awesome, he said sure, not really, but after talking about it that night he understood and was on board. That afternoon, in an email that I truly believe was affirmation from God for my plan, there was a deal to a hotel in San Jose. It was called the Sainte Claire. The deal included valet parking, breakfast for two and a bottle of wine, perfect! It was just the motivation that I needed to keep putting one foot in front of the other. Finally Saturday came and I carelessly threw a few things in a bag and headed over the hill. Upon pulling up to the valet I could feel my muscles starting to soften, as I made it up to my room I even felt a bit carefree. I had nothing that I had to do. In the past I have often struggled with my "free" time. Jared will often offer to stay home with the girls so that I can get away, just to find myself down in the dumps because I can't think of anything to "do." There is a sense of needing to rest or have fun NOW because I don't have the girls, but it is so hard to do that on demand, especially when I am ~~tired~~ exhausted. I literally dropped my bag and collapsed onto the bed. After a short rest I looked around and actually really started to enjoy my new temporary surroundings. For one, this room had one of the greatest hotel bathrooms ever! I am a bit of a geek about bathtubs. There are few things that I love more than a long hot bath, in a solid tub. Not a plastic one like I have at our home, a cast iron tub like the one I grew up with. Not only was the tub cast iron to keep the water super hot, there was a beautiful painting on the ceiling, with clouds and butterflies. I actually had to rest from my hour long bath before making my way down to dinner, it was great! My room was on the sixth floor, also the top floor, and there was a great staircase that went all of the way down. Aside from the elevator ride up upon arrival, I exclusively used the stairs for the trip, a luxury not afforded when with somebody on wheels and I relished the slow pace of using the stairs.

Eventually I made it down for my first time sitting at a table by myself at a restaurant, but it wasn't as bad as I thought it would be. Again at breakfast I sat there alone, but by then I was so rested, I could actually enjoy it. I really geeked out on the breakfast menu. I did breakfast at a fancy hotel back when I worked, so I have a special place in my heart for that. I was really impressed, the breakfast really was very tasty.

As I sat and savored my calorie laden french toast, I enjoyed looking around and noticing all the old stuff that was in the building. Silly things like the letter drop that ended in the lobby, I guess long ago people mailed things? It was then that it hit me, I enjoy hotels. Not just because I like being away from home, but I think I can classify myself as a bit of a hotel geek. I have struggled for so long to find something that recharges me, something that I enjoy, alas, this is it, I like hotels! I like observing, sitting back and watching the various stories that unfold all over the place in a good hotel. Having figured out something that I have an actual interest in, that doesn't involve either of my children, I felt like I had just gotten a shot of pure oxygen. Perhaps this is just the beginning of starting to try to be a person again, a real person who has thoughts and does things outside of the daily list of stuff that is required because you are the mom. I have to say, I am very excited about the possibilities.

I am so glad that I took the time out, to rest, to come back into my skin a bit. Once I returned, Jared and the girls were ready to get out of the house, so we went to the beach, I am so glad that I wasn't too tired for this...

Mumford & Sons - Lover of the Light, Live From Coachella 2011

2011-04-20T21:37:00.000-07:00

Really, I will update with words sometime soon. I have been watching this video a lot lately, I love Mumford & Sons and figured that maybe you would enjoy the video too.

Why I Stopped Advocating

2011-04-11T12:42:00.000-07:00

When Claire turned 1 I had no idea what it meant to advocate for somebody. Just as she turned 2 we learned that she had Rett Syndrome and that there was a lot that we could do to help her. We had a really great early start team and I never really had to advocate. I never asked for anything that I really didn't think that Claire needed and we were rarely denied anything as it was clearly necessity. Then she turned 3 and we transitioned into the school system. It was a very frustrating process to say the least. We were told that she did not qualify for orthopedic impairment, denied an evaluation for physical therapy and my request for a dedicated aide was not considered. I picked my battles and I fought like hell. She got pt, she was deemed to have orthopedic impairment and I was tired, exhausted. Fighting just isn't fun. Everything that I had to 'advocate' for was with the district, not the actual people that we work with, but it did get taken out on them, in the form of me just not feeling very warm and fuzzy about the whole situation. I never wanted to be the pissed off mom of the special needs kid, but somehow I had fallen down that slippery slope and woken up one morning very close to bitterness. So I stopped. I did not give up, I just stopped fighting and it was the best thing that I could have done. I found the people that believed in Claire the most and I worked with them. In the mean time Claire turned everyone else into believers, how humbling that she did the hard part and left the easy stuff to me. It wasn't long and everyone that she worked with was a believer. For the first time, my contact with the school was limited, because there wasn't much that needed to be discussed. They were doing a great job with her, she was learning and having fun, so I took myself mostly out of the equation. Then the winter came and Rett started to play it's mean tricks on Claire. All of the sudden there was more to communicate again, this time the teacher and therapist were listening to every word I said and really trying their best to support Claire with the new challenges. Additionally, I listened to them, they really had gotten to know Claire well and brought a lot of good ideas to all of the trouble shooting we had to go through to get a good, safe, stable environment around Claire. One morning, as I was dropping off Claire's computer, the teacher came in to talk to me. She wanted Claire to have a one to one aide. I couldn't believe my ears!!! I know so many people that have to battle, go to war to get an aide, here Claire was being offered one on a silver platter. Still, this was just the teacher, we still had to work with the school district and the county to find the appropriate place for all of this to happen. A few days later, there was a class for me to look at, a few days later, there were papers to sign. The whole thing has gone down without even having an IEP meeting. I am so glad that I stopped fighting and trying to push my agenda and what I thought was best onto the team that works with Claire. It really enabled them to be able to listen to Claire and respond with what she showed them she needed. This morning I got a phone call from the teacher while I was playing on the beach (really wish I was blogging about that, please see the flickr pictures on the side, it was epic!) and of course, my first thought is, did they already call the ambulance? What is wrong now? But no, not today. She stepped out to call me because she was so excited. Claire's new aide was there and Claire was being her awesome little self, so much that the teacher couldn't contain herself. Apparently, Claire first used her talker to say, "This is my talker, it helps me speak" Before going on to her family page and telling about each of us. The talker was on her left, Alexandra, the aide on her right, Claire would look at Alexandra after each statement and wait for a response. If there was any doubt in my mind we were making the right changes, I am pretty sure that Claire just gave us her seal of approval. Now, I just need to keep practicing being quiet enough to continue listening, lucky for me, the beach turns out to be a great place to practice that!

Where you go, there you are

2011-04-09T10:47:00.000-07:00

Lately it has felt like I have taken quite the beating from life, most of it compliments of rett syndrome and chrone's disease. I won't bore you with all of the details, but I have been talking to doctors way too much! For two nights Claire has been having what we suspect to be cluster seizures in her sleep while she is still fighting off pneumonia. Yesterday horse therapy was canceled so that we could go to urgent care. Once we got her in bed and asleep it wasn't long before the episodes started, we were on the phone with the doc and had the Valium ready to give in the even that we couldn't get the seizures to stop. I fell asleep in her bed, holding her, shaking her every time an episode would come. Around midnight I woke and realized that she was alright and that the hell had passed so I stumbled back to our room to collapse. About six hours later I heard more sounds on the monitor. I ran in to check on Claire to find that she was simply back. Happy as a clam and laughing in her bed, trying to wake her sister. I tucked her back in and she eventually drifted back to sleep. It was in the moment of the short walk back to my room that I heard it, it was a peaceful silence, it was such a fond old memory. I used to get up early to go to work and I loved the still of the morning. Feeling oddly rested and inspired I deiced to b e up for the day. With everyone asleep I was even able to shower! I made my way to the kitchen, did the dishes that hadn't been touched in days and pulled out the bag from the CSA. It might not be exciting to you, but this was the first week of the season for our CSA and I get rediculously excited about it. I even took a picture of it on Wed. when i picked it up.

It was such a pleasure to go through and plan what I would cook, first I had to take the two slugs out of the bag and relocated them to the side of our porch. Then I made ravioli, broccoli and the pasta for the week. Just as I finished Claire beckoned that I come get her that very moment. She was very happy to sit and watch Food Network as I finished up. I let her choose what we would have for breakfast, she decided on pancakes, or as Chloe calls them, pan-cup-cakes. Jared slept in a bit as the girls played, I made pancakes and finished up the dishes I started. At ten to 8 everyone was happy, the food was hot and I felt at peace. It took me back to eating pancakes on a trail ride in Colorado. One of the cowboys had said over and over, "Where you go, there you are." I know it sounds obvious, but it was sure a good thought to have. I don't have to stay living every minute in pain and fear because I don't know what will happen next or bruised from everything that just went down. I can be where I am and enjoy it and it certainly helps when my house is full of really great food!

The New Math

2011-04-04T21:38:00.000-07:00

What to do, what to do? I added it all up and it seems that my life requires 120% of what I can humanly do. Yet, I added up how much I have to give and it only adds up to 95%, you see my problem? Let me explain in greater detail. I get to give myself an injection once every two weeks. My last dose was mid March. Knowing that I had one dose left, I called and scheduled to have the refill sent mid march, when I would use up my last dose. Somewhere in that time they called to confirm delivery and left a generic message on the machine, I meant to listen to it again, I just didn't. Suddenly it was March 30, two days away from the next dose and I realize that the shipment never came, not good. Of course in that time the pre-authorization for the med ran out even with the refills available, they couldn't ship without first getting the paper signed by the doctor. As it turns out, that person was out until Friday and there was no other person that could possibly fill out the paper. It was so frustrating to have forgotten this, how could this happen? I need this to literally keep from bleeding internally. As mad as I was at Cigna for not shipping it or calling more to verify the shipment, I was so mad at myself, for not thinking about this Monday, or a week earlier. But I had, I had thought of it, just never at a time that I could pick up the phone, sit on hold forever and have a conversation without Chloe shouting ELMO over and over throughout the whole thing. By Friday afternoon I was exhausted from fighting with these people and had given up. I had also had the pleasure of calling on the table mount for Claire's talker that we can only use at home. The vendor said they faxed it, Cigna said they didn't get it, I call and all of the sudden things move. Then there is the wheelchair we are working on, same story. Needless to say, I had done a lot. I hadn't just curled up in the corner and cried through the whole week (which would have been completely understandable), I had kept Chloe from needing a trip to the ER(nothing wrong with her, daily she does things and I am surprised she is not more hurt than she is), Claire only had regularly scheduled doctor stuff, I had enjoyed the park with Chloe and tried to take a little down time for myself. Saturday came and it was the day of the sleep study that I wasn't super excited about, it would be our 7th trip to a hospital in a 6 week period. We got all ready, loaded Tangled on the iPad and headed to LPCH, where they didn't have our chart. I had said to Jared as we were getting ready that it was weird there was no call to verify the appointment, because it didn't exist. So I go to check in they don't have a binder with Claire's name. We wait in the art room while they look into it and try to fit us in. It was then that I lost it. I knew the lady said she would email me and I never got the email, but it was just directions, which I didn't need. Was I supposed to confirm? Did I miss a form to sign? On the heels of the previous weeks frustrations with order drugs and equipment the weight of rett syndrome came crashing down on me. It is too much. I suppose I could not sleep, I could not slow down enough to feel and have emotion, if I didn't take the time to feel I could get so much more done! But I have decided that I don't want to go through this numb, I don't want to miss the little bits of joy that are mingled amongst all the chaos. Today I called to reschedule and find out where it had gone wrong. Turns out the only problem is in my head. Everything is all set for Sat. April 9th, apparently I am using the same math to count days as I do things on my to do list and it just doesn't add up.

Scary

2011-03-30T22:59:00.000-07:00

I don't know about your life, but one of the most common things that we talk about is yesterday. We are often updating therapist or just reliving fun stories and today was no different. As it turns out, yesterday was a pretty big day for us. First off, Tangled came out. So Chloe and I ventured all of the way to Target to get it and talked all day about how we had to wait for Claire Bear to watch it, it was a pretty big deal. Chloe really liked her Tangled themed coloring book, I assume because Rapunzel has wonderful hair and there is a horse. None the less, Chloe was excited about the movie. Claire had had a pretty rough day at school and fell asleep as we watched, she did see it three times in the theater. Pretty quickly Chloe opted to watch from the kitchen, only occasionally peeking out to actually look at the tv. We talked about how it was scary and that it was alright to hide. With Claire asleep on the couch and Chloe playfully dancing to one of the songs in the movie, I thought I might run into my room for a minute. I heard a sound, an unfamiliar, run too it as fast as you can sound. As soon as I turned the corner I saw Claire's poor little body convulsing/ jerking. Her arms were in sync going up and down and she was foaming at the mouth. She stared out the window, there was no connection to the world that was around her and just as quickly as it happened, she was back asleep. I immediately called Fairy Mary and after talking I really do think this was her first honest seizure. After 25 minutes she slowly woke up, but her body did not. She was so floppy and jerky and Jared had to hold her in his lap and steady her head while I tried to get her a little dinner. We ended up having to lay her in her bed because it was the only safe place for her, heart wrenching really isn't adequate, what Jared and I felt was something worse than that. I kept thinking about poor little Chloe as this went on, Claire required both of our attention and Chloe just got the scraps that night, it isn't always like that, but I feel like it really should never be that way either. Claire slept it off and woke up to a new day. She was back to her normal self, she even opted for two layers of nail polish, first pink, then purple glitter, a true sign that nothing was out of the ordinary. Sara our ABA trainer was here (I would never put two coats of alone with them both!) and chatted with Chloe while the nail polish was drying. The discussion quickly turned to Rapunzel. Chloe said in the cutest, almost two year old tone, 'it was scary'. While I admit it is scary, Disney does a great job of creating antagonist for a thrilling story line. But she saw Claire's seizure. She saw Claire weep and scream as she struggled to control her body. Yet, that didn't seem to evoke feeling of scared. She can walk up to Claire when she is screaming at 110%, give her a hug, tell her she loves her and then turn to me and announce that Claire is sad. So the word for yesterday will be scary, for Chloe it was the creepy evil lady in the movie, for me it is the mecp2.

Now and Then

2011-03-29T12:32:00.000-07:00

This past weekend we had the pleasure of journeying up to Oakland for the natural history study that Claire participates in twice a year. It is a fun time, we get to see people that we don't see often but love very much. We have a few friends that are very close in age to Claire and it is always interesting to see what their path has looked like and what rett has thrown their way. When you are dealing with hard stuff it is always easier to deal when there are other people who get it and in similar circumstances. Soon after we arrived on Saturday, Fairy Mary (also known as the unbelievable Dr. Jones) told us that there was a family that we had to meet. I really didn't think anything of it, until we met. Her name is Lucy, she just turned three and is the closest thing to Claire that I have ever seen in my life, she was wonderful. It feels like my life goes by very slowly, so I don't often see the change, but Saturday afternoon it smacked me in the face. I didn't realize that Claire had grown up until I saw this sweet little girl who had just turned three. She still had a stroller just like Claire did at that age, she also had the same willpower to stay awake and see it all much like I remember Claire doing. I looked back through pictures to try to remember more of that time, it was a really great time. Recently as I have been more actively working through grief and the basketful of stuff in my head and heart related to all things Claire, I have associated that period with being numb. While that does still hold true, after seeing Lucy I have a little fresh perspective, my new word to attach to that period is tender. Like a really bad bruise from a recent injury, it was sore, but it didn't paint the whole world yet. It got me thinking about the two and a half years that have transpired since Claire turned 3. In that period she went crazy for all things princess and is now over it. She has developed a deep love for learning while at the same time attaining new levels of silliness and play. The road has been rough and long, there haven't been many water stops and I am very tired. Looking back, it hasn't been all bad, with the hard and the ugly there has been so much good. It was really fun to get a little window into our past in the form of another sweet soul a little further back on the road. I am finding myself refreshed and renewed, in two and half years we are no worse off, we are still just enjoying the days that we have together and I just don't think it can get better than that, cure for rett aside :-)

The first picture was taken of Claire just before she turned three and the second was taken at the study on Saturday by Megan, a fellow rett mom and truly amazing woman.

The Greatest Birthday Ever!

2011-03-24T19:37:00.000-07:00

I love my birthday. Why wouldn't I, it is a celebration of me! But when you grow up, which, technically, I think I might have, birthdays can be a little trickier. First off there is work, my current employer is not fond of any type of time off. Then there is the budget and a host of other annoying things that fall into the category of 'adult type responsiblities' that can take away from one's birthday. In my 20's I had the pleasure of having colonoscopy three years in a row, on my birthday. Other than that, I have very fond memories of my birthday. My mom was awesome at making me feel like the most important thing in the world on my birthday. I always got corned beef and cabbage made just for me, alright, it was St. Pat's Day anyway, but I do love that feast! The last few years have been less exciting. I imagine that I am not the only person out there who has had disappointment from a spouse's failure to adequately celebrate the birthday. Add young kids with some other random complications and it is pretty easy to not have much energy to celebrate, it happens. This year was different, it was exceptional! It started getting to cuddle with my Claire Bear and she gave me a card and a necklace that she had made just for me, priceless! It wasn't long before Chloe joined the party and things were rolling. Jared took her out to get cat food as we can completely neglected to remember that we were entirely out, oops! When they returned home, Chloe came running into my room yelling, "mommy, mommy, birthday cake!" It was brilliant! I don't think that I had ever conceived in my mind just how great it would be to have a little girl run in and ruin a surprise, it was bliss! Even the best birthday ever had a little blip in it, Claire had a pretty major episode where she stopped breathing and got super floppy following. I was so proud of Jared for rolling with it and staying calm, I had no idea that we had reservations, more or less at the greatest restaurant ever and Claire needed to be dropped off so that we could get there. Our friend came to stay with Chloe and we left to take Claire to Kid Quest, both with pretty heavy hearts. Watching Claire stop breathing isn't fun. Even with her doing it almost daily, it does not get any easier, but it is our lot, no use fighting it. We dropped her off and started our journey to the still unknown destination. It was nice to have some time to talk about how hard the whole Claire thing can be but quickly the conversation turned to the crazy weather and our destination. About 20 minutes into the drive I started narrowing down options as we passed exits and freeways. In typical Captain Awesome fashion, I was given a clue, wonderland streams. It took me half a second to figure out, ALICE WATERS! It never even occurred to me that I would be going to Chez Panisse. That Jared had reservations and had gone to great lengths to keep the secret spoke volumes to me. I pretty much giggled in the car the rest of the way there, despite gale force winds and massive amounts of rain, all I could do is grin. We were seated at a very cozy table (they pull it out for you to sit down and push it back, small space!) and given the days menu. I didn't think it could get better until I read that today's menu featured dishes inspired by Julia Child, one of my other heroes. I won't do the food the injustice of my words, I will just say that it was marvelous. The company was also very nice and I am amazed at the fun grown up, non kid things that we can talk about when given the chance to eat at a time that we are also not completely exhausted, again marvelous is the best I can do to sum it up, but that really is an understatement. Eventually we had to leave and journey home, again through crazy wind and rain, but I was so content that I drifted off to sleep. We finished the day off with a princess movie, pizza and a birthday cake with two of the greatest little girls ever. Huge props to Captain Awesome, I felt like the luckiest girl in the world that day, probably because I am.

Sometimes You Want to Go Where Everybody Knows Your Name...

2011-03-24T19:05:00.000-07:00

...sometimes you don't. In my case, it seems to be that I don't really get to pick, but none the less, I have recently had great experiences with both. The past Wednesday was far from a normal day. Jared had taken it off because Claire had to go up LPCH to get wired up for an ambulatory EEG. Since he is Captain Awesome, he offered to take her, at first and I must admit I was a little nervous. I pictured him in a ball crying while Claire screamed during the long process of gluing 28 wires to her head. I have done it twice and both times my nerve were a little fried at the end. I had BSF, which I figured would be a good distraction and maybe the wonderful children's program that they have would wear Chloe out so she might nap well. Of course I was running late, it was the day I was supposed to get there early for the fellowship and I had all I could do to put one foot in front of the other without bursting into tears because Jared and Claire were off doing something that makes me very sad. As I dropped Chloe off, one of the women who runs the toddler room handed me a card. A few months ago I had run into her at Verve, my favorite coffee shop, while I was out with both Chloe and Claire. I quickly noticed that it was a gift card to Verve :-) and thanked her. She smiled and laughed with a remark about how I must need all the energy I can while watching Chloe run across the room. I honestly think this is one of the kindest gestures that anyone has ever done for me, at least in recent memory (which I admit is bad). Since I am being honest, I really don't enjoy BSF that much. I go because Chloe loves it and I don't mind the lectures and small group, I sit in the back, don't talk much and try to blend in as best I can. But it didn't work, somebody noticed me and it turned out to be the biggest of blessings. The two hours had gone by, it was time to head home and still I hadn't heard from Jared. Eventually, this picture is sent to my phone, of coarse it went smooth as silk, that is why they call him Captain Awesome. I don't really remember what the rest of the day held, I do remember being really tired, but in a good we did it sort of way. Then I woke up. Thursday morning I opened my eyes, looked at the video monitor and saw just the wire in Claire's bed, no Claire. I ran in to find her giggling, sitting on the floor with the bandages that protect the wires off her head. Panic ensued, doctors were called and it was decided that she needed to go back in and they could squeeze us in at 8:30. I had a meeting at our home scheduled for 8:30 with the ABA team and Claire's classroom teacher. So, Captain Awesome volunteered to take her. They were there and back quickly, other than the freaky episode in the car (which is why we are doing the EEG in the first place) again it was smooth. The rest of Thursday was pretty uneventful. We met up with Jared's brother and his wife at the aquarium, saw fish and ate ice cream. Friday we were very pleased to see Claire in her bed in the morning. She was pretty excited to be going to get the wires off her head, it was obvious that it was very uncomfortable. Of course we opted to go get coffee first. I just love that I can take her into Verve with her head taped up and everyone talked to her as if it were no different than any other day. It really is one of those places where it feels good to go in and yes, most of the people in there know my name. After that the drive was surreal. She lit up, in the purest and most typical little girl sort of a way.

The video doesn't really do it justice, but it is all that I have to try to show you. In the moments in the car, she didn't hate rett syndrome, she wasn't being actively robbed in the form of a dystonic episode, it was just pure. We pulled up to LPCH and the valet looked surprised, his remark was, different driver today. For some reason that really took the wind out of my sails. Being recognized at the coffee shop is way better than at the children's hospital. As we waited for them to look at the data before unraveling the wires, it felt like everyone who walked by knew Claire. It was truly one of those bittersweet blessings. While it is great that we have a place to go that offers such great care, I really wish that we didn't have to go.

Good Grief!

2011-03-13T08:43:00.000-07:00

It has now been five years since I really entered the land of the grieving and five years ago I had no idea. Honestly, I spent a solid three years in denial, without even being aware that there was a grieving process and that I had anything to grieve. After all, my mom didn't die. Claire didn't die. It seemed like the appropriate response would be to be thankful for this, right? I remember the day we got the diagnosis for Claire, I was so genuinely joyful that it wasn't a death sentence, something that we had feared. Last week I was speaking with a friend who was struggling to pull herself together and push on. She too has had a life altering set of circumstances that have left her with some physical challenges. She said to me that what she has was not nearly as bad as what Claire has and that she shouldn't feel so bad for herself. She had articulated so clearly the elephant that is often in the room when I am with others. For some reason, we tend to compare our trials to others. If what we have isn't as bad as somebody else, then shouldn't we just get over it? No. I think this happens a lot in rettland. I have friends who's daughters walk, which is amazing! I have heard musings of how hard it is to be frustrated when they have friends who are in the hospital with seizures or feeding problems. All this to say, my new answer to so many is to grieve. You don't have to have it worse than everyone else in order to be entitled to grieve, you just have to have a loss, that is the only prerequisite. I really wish that somebody had told me it was alright to grieve years ago when we were in the earlier stages. So to any of my friends not as far down the road to rettland, it is alright and I highly recommend it. I do think that grief had a pretty negative tone in my head at first. In part it has to do with my upbringing within the church. There is a need to always be praising and grateful, while those are very good and important, the Bible does also say to 'mourn with those who mourn' but that really gets a lot less publicity than the everything is fine message. The last two years have really been a much more active part of the grieving process for me. I can look back and see that there were periods that were full of anger, bargaining, depression and acceptance. But with my situation, there is no completion. Claire is not dying and she is not really getting better. A few weeks ago a friend asked me if I felt like there was a place that I would reach, that would allow me that final acceptance. Sadly, my answer was that once Claire passes, I will get there. Hopefully, that won't happen for a really, really long time. In the mean time, I think that I have adapted to go through the whole grieving process on a daily basis. On rough days I think I might go through it two or three times and sometimes it might span a few days. It looks like this, Claire screaming her head off, thoughts in my head are along the lines of, this is typical she is five, kids are hard. Then the screaming evolves into heartfelt sobs, I begin to see her for the normal kid she is, trapped inside her body and get mad, why?!?!? this is typically when I have my WTF conversations with God. Then she starts to calm, I think to myself, if I can just get her walking, talking or more regulated, then we can get through this. Once she is better, I turn on pbs and go hide in my room, look at baby pictures and cry my eyes out. Eventually, I hear the girls laughing in the living room, which brings so much joy to my heart, I wipe the tears away and go and enjoy them. The point is, that allowing myself to go through and feel the different stages, has really allowed me to feel more in general. I have given up on trying to be the strong one who is really alright with it all and have come to rest with the notion that it is hard and not alright, yet everything is going to be fine, sort of....you can see that it is a work in progress.

Good

2011-03-10T12:43:00.000-08:00

Today I walked down the beach holding my daughter's hand. We played in tide pools, stood in the sand as the gentle tide washed over our feet and it was good.

Being

2011-03-06T20:11:00.000-08:00

It has been a year now since I actually have been feeling again. Within that time there have been plenty of ups and downs along with the twists and turns and I can confidently look back over the coarse, with a grin on my face. I feel proud that I have not just survived it but took a lot of it in. Sure there were a few corners that I closed my eyes for a minute and the occasion that I had to let up on the gas, but overall it was a good time. Through all the tears and the joy, I think that I am finally starting to maybe learn a few things through it. Right now, that seems to be the concept of being. The thought has been floating around in my head for a while, I often pause, think to myself what it would look like to be and then get on with my doing. It is easy to do, to just keep putting one foot in front of the other, it doesn't take much thought, after time it becomes automatic, the treadmill slowly increases speed and without too much effort, you just adapt. But I don't want that. My problem is then, what? How do you not do? Seems impossible. Today we went to the aquarium with the girls. While Jared chased Chloe I sat and fed Claire while trying to just soak it all in. Like most nice moments it was cut short by a toddler (thankfully not mine!) wondering off in a direction that was clearly against his mother's plan. He was interested in looking at the ocean tide pool area through the fence, his mother desperately tried to get him interested in the display. She ran after him saying, don't you want to see the frogs? They have water over here too. Claire and I relocated and yet another mom, was chasing after her youngster, trying to get him interested in the exhibit, with this it occurred to me that this is a very noticeable trend. Since I was already volleying the concept of being in my head, I couldn't help but notice that both mothers were clearly trying to get their son to 'do'. As a culture I think we are wired that way, even as toddlers we teach this. My next filter was to think about this in the lens of a special needs parent. The list of things that I NEED to DO is very long, so long that it would be very easy to hide in for roughly the rest of Claire's life. She must be fed, walked, stretched, dressed, groomed and communicated with and that is just before school. Is it even possible to think about really trying to make this shift from doing to being or am I just doomed to fail? When we entered the land of special needs we were in the early intervention program. As the term suggests, the intervention was pretty comprehensive. We had a minimum of 9 hours a week of appointments for 18 months. During that time I learned to advocate for Claire, I would strive to get her everything that she needed without overloading her and giving her enough down time to process, but not so much that she was bored, it was a fine line. Then in 2008 research was released showing that mice with rett showed improvement when exposed to a rich environment. It was the evidence that I needed to keep going to keep pushing. Then I blinked and it was 2011. It has been 4 years to the day since we saw our primary doc and she was alarmed, sending us to the regional center for support. Today, Claire is 'doing' well. She is learning a lot, slowly getting stronger and more confident with her walking. As she napped today all of this swirled in my head, can I just 'be'? What is that? Am I crazy for even attempting such things? Then Claire woke up, Chloe had just fallen asleep and I had to be quick to keep Claire from waking her. I climbed into bed to cuddle with her and she looked straight into my soul with her vibrant eyes and bright smile. She was happy and it sounded like she was trying to talk. I told her how I love the sound of her voice and that I know she wanted to control her mouth but that it doesn't happen. She started to make the sound of the letter f. She carefully blew, with her two teeth over her bottom lip, she tried so hard. We laid for a long time just saying f words like fun, Friday, father and flower. I would wait and she kept trying to speak, over and over she would blow and try to say fun, she got pretty close several times! I was humbled by how hard she tried and how much she relished the smallest of her accomplishments. Then it dawned on me, I was being. While I was trying to get her to talk which can be construed as speech therapy, which would go under the column of do, I was following her lead, which I think is one of the defining differences. If I hadn't been still enough to notice what she was doing, I would have moved her to the couch, put the tv on and missed a really beautiful time. As for the video, it was one of Claire's favorites when she was into Seasme Street, now she likes the real Beatles, but it seemed fitting for the wide range of things that are in my head tonight.

Rare Disease Day 2011

2011-02-26T08:16:00.000-08:00

I know that at lot of my blog posts center around Claire and Rett syndrome, but today she will share the spotlight. Feb. 28th is the 4th Rare Disease Day, which is a pretty big deal for me. It is very easy to feel isolated and overwhelmed when dealing with the multitude of hard things that come with a rare diagnosis. Rare Disease Day is about calling attention to the over 7,000 rare diseases that more than 30 million Americans suffer from and so many more globally. So, to bring attention to my favorite rare diseases (and by favorite I mean have hit VERY close to home for me) I figured I would blog about them.

I will start with Amyloidosis. In March 2006 my mom was diagnosed with primary amyloidosis after having a major stroke and being rushed to the Mayo clinic which was close to her home. The amyloid protein had deposited in her heart, causing it to be very thick and pump inefficiently, thus the stroke. Doctors painted a very grim picture, they doubted that she would be around more than 4 months. The primary treatment at the time was a stem cell transplant but because of the stroke and the damage to her heart, she was not a 'candidate' for that. Mayo being on the edge of what is new and exciting offered an option referred to as the Italian protocol. They didn't know if it would work, but there was very little to loose by trying, and as it turns out, so much to gain! The experimental treatment worked!!! It was through Amyloidosis that I was introduced to the concept of a support community and the science of the body. I learned about the Congo Red Dye test that is done to check for Amyloidosis and about the importance of the light chain assay to keep track of where the disease was as far as active or inactive. I learned about special cows in Vermont (no joke!) that are raised to produce a specific substance that allows for this test, that in turn allows doctors to take my mom's blood and report back that she is fine. Yet again, I find myself loving cows! I also learned about how very intelligent, well intended doctors, just don't know everything. While at the same time, strangers with no medical background can at times be the greatest of resources. The strength that was shared through the community of others as we went through the treatment was amazing, I think at the first support group meeting there were 8 other people from 4 states and none of them felt like strangers.

Next up, Crohn's disease. Just after I turned 19 I was sick a lot. My parents thought I had an eating disorder as I lost weight like crazy and spent a lot of time in the bathroom. It felt like the viral infection from hell that lasted for months, turns out, I wasn't anorexic, it was Crohn's. I had to take what seemed like a thousand pills a day and none of them helped. I ended up in the category of severe Crohn's and in the chemo unit at Mayo Clinic getting infusions every few weeks. In retrospect, it was a pretty crappy (ha,ha) way to spend my 20's but I really had no choice. I was tired for years. Finally in 2007 I got really sick. I was in the hospital in Santa Cruz and the GI doc came to visit me. He pretty much said that I was so bad that nobody in the Monterey Bay area was qualified to help me. The next day I was on a plane for a consult with a colorectal surgeon back at Mayo Clinic in Arizona. One of the things that I have learned in my experience with the various rare diseases, it is never good when a specialist can see you right away, never. It did work out that this doctor knew a lot more than the guy I had seen at home. He even knew of somebody in my state who could care for me. Ever since then I have been sticking needles in myself every two weeks and my Crohn's is under the best control that it has ever been! I never joined a support group because I didn't really want to talk with others about the stress from constant diarrhea or how frustrating it is to get sick from everything since your immune system sucks. Rather Crohn's taught me to laugh. My friend Kathleen and I would inflate exam gloves while we waited for doctors and write different parts of the exam in appropriate places. Jared and I played hangman in the waiting room at the ER when I had beauts of uncontrolled vomiting. I learned to let laundry pile up and that cleaning the carpets was more of an optional thing. As much as having Crohn's is truly a pain in the ass, I know that I am a better person for having to get the lessons from it.

That brings me to Rett syndrome. While it is more common than Amyloidosis, and with a longer life expectancy, more debilitating than Crohn's and even more socially awkward, Rett has brought with it the strongest community that I have experienced in rare disease land. There is no doubt about it, if I could undo any of these, it would be Rett, I hate it. It holds our daughter Claire captive, makes me second guess just about every thought that I have and has driven Jared and I to the edge of exhaustion and we are just at the beginning. But I do have so much hope. Research is being aggressively pursued. Of the three rare diseases in my life, I most expect that Rett will have the biggest leaps in treatment and what we do with it in my lifetime. That is why Rare Disease Day is so important. Awareness is so critical as each of these different causes strives to make progress and ease the effects on the body. So on Monday, as you might be tired for one reason or another, I encourage you to think about the significance of Rare Disease Day. If you are somebody who has a rare disease close to you, know that you are not alone, there is support, there are other people out there. If you do not have somebody close to you in this exclusive club, perhaps you would have strength to share or encouragement to give and if you do, please do not hesitate, you can make a difference.

Shoes!

2011-02-20T17:57:00.000-08:00

I know that my last few posts have been a little bit heavy so I wanted to share about today, because it was brighter. Nearly two weeks ago Claire had filled up her token board by eating her breakfast in a timely fashion and getting to school on time. I was so desperate to get her to eat that I bribed her with shoes, and it worked! It kills me how easily she can do things when motivated. Last weekend we decided to put off the shopping trip to play at the boardwalk, so Claire has had a lot of time to think about this. Captain awesome, being awesome, had noticed pink and black high top converse with Velcro down the back when we were in then shoe department at Nordstrom a few weeks back. So Claire and I did a little online research and as it turns out, she was keen on the high tops. So this afternoon the four of us piled in the car and drove over to the "big" mall. We listened to Claire's music much to Chloe's dismay, but this was Claire's reward. We had to take the elevator up to the third floor. Nordstrom being the fancy place that it is has floor to ceiling mirrors that we passed and wow, that little diva! Claire shamelessly checked herself out as she rolled by with the biggest smile on her face. I don't know why I am so surprised but she was so peaceful and bubbly while we looked around for the high tops. Her hands were quiet, there was no teeth grinding and no shouts. She just beamed as the lady brought out the box. We tried them on and walked around, I think we need to look into doing pt in the shoe section of Nordstrom. Her steps were so planned, soft knees that bent and a narrower gait, it was beautiful. She was even patient while we paid and made the rest of the plan for the day. After such a long week, it was sure nice to do something so normal and have it go well. Proof that it doesn't always rain and occasionally there are rainbows after the storm.

yeah...

2011-02-19T19:23:00.000-08:00

Captain Awesome has a certain way of saying "yeah" in a way that I really can't portray online, it is a jack of all trades response. He uses it for just about everything regardless of what he really means to say, yeah, is what comes out. I have to say that often this drives me nuts, but I am starting to really warm up to it. I don't know if it is just life or life with rett, but "yeah" seems to be the best response I can come up with these days. Monday was crazy, I assume that you read and if you haven't, reference my last post. Tuesday was nearly just as maddening. Claire had another episode but we spared the trip to the er. The neurologist had apparently called the er on Monday to tell us they could admit us to LPCH but we had already gone home and nobody tried any harder to find us?!?! After several phone calls back and forth, the neurologist had again found a bed for Claire at LPCH so we could get an EEG going and figure out what crazy was going on in her head. We checked in around 9:30 Tuesday night and Claire fell asleep around 2:30 that morning and woke for the day at 6. She was an excellent patient, she had three good freaky episodes and we got it all, we even discovered that her heart drops to 40 just before it happens, isn't that exciting, not really. When the expert came to read the EEG he kept asking if I hit the button when she had the episodes, yes, of coarse I did, but there was no abnormal (for Claire) activity when the button was pushed. She's wasn't having seizures, she has rett syndrome, why didn't I think of that! Claire was getting less patient about being in the hospital bed. We danced on the bed, read stories, painted nails and anything else I could think of, but she was tired, too tired to sleep. She laid there motionless and awake until 4 so I knew there would be no daytime sleeping as we had hoped. With the good news that it was not seizures, I asked to be released. They said no. I lost it. First the attending came in to explain it to me, apparently my sobbing really concerned her so she sent in a social worker to talk through it with me. You know it is bad when the social worker leaves themselves fighting back tears and no real advice other than, here's my card, if you ever just need to talk. I think that by 5 I had cried so much I was dehydrated but I did regain composure. Jared felt it safe to leave and I promised to be nice to any more doctors that I came in contact with. Around 6 the neurologist came in, I tried to keep my cool but it didn't work. She was sympathetic and understood why I didn't want to stay the night. We have a 72 hour EEG at home scheduled in 3 weeks and diastat in the mean time, so they honorably discharged us (instead of making us leave AMA which had been in the conversation). We finally left around 8 and by 9 had Claire home and tucked into her own bed. As I faced reentry there have been many questions, people asking, how's Claire? The best I can come up with is, yeah. Part of me wants to scream "what part of severely disabled do you not understand" but I know that is a little harsh, they are well intended. She has rett syndrome. Since she has that she has these super freaky spells that make her stiff, her eyes close and her tongue turns in her mouth, she darts her eyes at me in a silent plea for help, there is no medicine, nothing I can do when this happens, and as quickly as it comes it leaves. Yes, we are out of a hospital and we didn't go in an ambulance today, so by that standard it was a good day. For having rett syndrome, Claire is doing very well and I can't forget that. With each of these episodes comes something new and wonderful. She spoke three words on Thursday and Friday had such an epic horse therapy session they went long (in 40 degrees and rain), certainly these episodes are not damaging her brain and that is indeed a good thing. But can I just be selfish and wish that we could make small gains like this without having occurrences every day that force me to think, do I call 911 or not? I am sure I will come up with more words if and when I become well rested, but for now, I think 'yeah' about sums it up.

My Valentine's Heart...Attack

2011-02-14T20:03:00.000-08:00

Last time I blogged it was a Monday and I wasn't feeling too hot and yet again, I find it is Monday and I feel less than stellar. I was very happy to wake up to rain (it has been so warm and sunny I have actually missed rain, crazy I know) even though my body was clearly not happy about having to get moving, it obliged. Claire was bright eyed and bushy tailed all ready for the big party at school. For us Valentine's Day is almost bigger than Christmas; pink, glitter, hearts, all up our alley. Claire was even a little wise cracker this morning as I was trying to get things together she used her talker to say "mom late" as if I wasn't aware already. We made it to school with a minute to spare and she was off to her mainstream classroom with a sack full of cards to hand out and a huge grin on her face. Chloe and I got coffee and took her gift over to her little buddy Lucas. It was so cute to see them really start to play together. She handed him the little bag and the picture she drew, he gave her a hug and said 'thank you Chloe' in the cutest almost 2 year tone, it was wonderful. Next was Whole Foods, while I am aware not everyone loves that place I do and I was excited to get back into the groove and just try to make myself feel better with business. Just before I got to the exit my phone rang, it was Claire's teacher. She said Claire was having some crazy episodes and asked if I was close, so I went straight there. When I got there she looked alright, I took her and she smiled, she even stood very well. We thought maybe a bit of food would be good so we walked to her chair at the table and sat down. Then it happened, she closed her eyes and clenched her fist, this was different from the other weird creepy laughing spells, her tongue rolled in her mouth and she really looked like she was trying to fight it. Quickly I got Dr. Mary (who I am convinced is actually an angel in a human body) on the phone. You know it is bad when you get the doc quickly, it says that they are really scared too. She advised me and I called 911. I called 911, for my baby, it was surreal. I hung up with them, called Jared and asked him to come get Chloe. I then sat on the floor and held Claire until the medics arrived. During that time the episodes got worse, at one point she went a little purple and I swear my heart stopped beating in that moment. The crazy thing about it all was that in between the episodes, she was pretty close to fine, not 100% but 90% and for us, a good day is 90%. The medics came and we told them that we had hoped to go to LPCH where her neuro was. But since we are out in the sticks they couldn't so we went to the local hospital to get stable and discuss a transfer. When we got there it was scary. She wasn't getting better so the plan was to get an IV in and then give her Diastat to stop it. In the process of the intake, getting the vitals and enough people to get the IV in 30 minutes passed. Somehow, in that 30 minutes the episodes stopped all on their own. Just as they were getting ready to give the medication we decided to wait for one more episode since it had been awhile, and it never came. Slowly the plan morphed from getting an ambulance to take us to LPCH to maybe driving ourselves to eventually just going home because she was fine. We are working on getting the EEG moved up so that we can figure out what to do with this little girl who just loves to keep everyone on their toes. We got home and she had a huge lunch and a good nap. She woke up for dinner smiling and really enjoyed her special Valentine's Day chocolate that she got. It is hard to know what to do with a day like this. It stared normal and ended normal, but man was there a lot of crazy in between. I think that the biggest take away is to know that we can go through something like this and come out on the other side. The medics were great, the er staff was great to us, my friends were there and Jared and I make a mean crisis surviving team. It's all reminds me of the lyrics to the song we had listened to on the way to school, The Beatles: All You Need is Love:
There's nothing you can do that can't be done
Nothing you can sing that can't be sung
Nothing you can say but you can learn how to play the game
It's easy
Alright, maybe it wasn't easy, but we did it.

Really Big Trees

2011-02-07T20:01:00.000-08:00

Today I felt like crap. I think it is a combination on allergies, Chrone's disease and Rett syndrome with an element of toddler and oh yeah, it's Monday. Chloe thought it was so much fun to take a nap she pretty much jumped on her bed all the way through it. On the bright side, I didn't have to wake her up in order to go get Claire from OT. It was sheer joy to walk in to see Claire working with her OT, sitting with her legs crossed on the floor, straight as an arrow and working on drinking from a cup with a big smile on her face. Really, other than me just being tired beyond belief, the day was going along rather well. Claire pushed Chloe around in her wheel chair and walked out to the car. By the time we got packed into the car, it was just more than two hours until dinner, what to do, what to do. I knew that if we went home it would be a long two hours, but if we drove in circles and killed an hour in the process of getting there, we could have some fun before dinner and maybe I would make it. To test this out without committing too much, I first drove down by the water. Claire smiled at the ocean, closed her eyes and check out, perfect, now if I could just get Chloe down! Sure enough she dropped on Hwy 1 so it was off into the enchanted forest, or Hwy 9 as some people call it. It was amazing! As I started to soak in how beautiful light is as it filters through the trees it occurred to me, wow, I can see the forest AND the trees. Cliche I know. But really, I have driven this road before numb and not noticed either. As the girls slept and I enjoyed the winding road that went through the towering trees I got to think a bit. I love that I live somewhere that my natural surroundings give me so much beautiful perspective on life. Granted, my life is not easy and I am not just blowing my trials off in some sort of trite manner. But I am starting to see it in more of a big picture sort of a way. While I wish that I could have been home, fulfilling my delusional desire to cover our table in glitter in the process of hand making valentines for the kindergarten class, I was driving around to give Claire's body a break after a long successful day of school and therapy. Today, I am alright with that. Most likely because there was less screaming and more smiling. At the bottom of it all, the trees are really big and quite wonderful and it leads me to believe that somehow, so is my life.

Our Playground

2011-02-02T13:40:00.000-08:00

I have to admit that it isn't just because of Rett that I don't like playgrounds. Even before there was anything special or different about us, they just weren't our thing. As time wore on, I somehow lost sight of that and assumed that we didn't go to the playground because we couldn't. Over the last year we have made a few trips to the playground and Chloe loves it, but I don't. I just didn't get that gene. It must have something to do with the struggle that I have with playing, regardless, there has been some guilt, that we don't go often because I really don't enjoy it. The last few weeks we have absolutely epic weather. So I did something very brave, something I hadn't thought to do before. We went to the beach. I know is sounds obvious, but the beach that I am talking about isn't one that is populated with other little children, Chloe is normally the only one. Today the tide was pretty high, so there was no beach, but that didn't stop us from enjoying it! We sat on the stairs and watched the waves crash. I love that Chloe is growing up knowing that little bubbling sound that the ocean makes as the waves recede, it is one of my favorite sounds. We talk about the smell of the salt in the air and how pretty the sun is at it glitters over the smooth parts of the water. Truly I am very thankful that this has been part of my organic experience.

Kid Quest Needs Help

2011-01-31T16:05:00.000-08:00

There are so many aspects of our life with Rett syndrome that I hate and honestly begging for money is one of them. Yet I get so many opportunities. I will get my ranting part out of the way first, then move to the begging. On a personal note, the begging comes so hard because of the relationship that I have had with the church (meaning local people) as a result of us becoming a family with disabilities. Prior to being part of this world I never new it existed, it was neatly hidden away, somewhere else, out of sight out of mind. Truly, that is a VERY SAD statement. I know what the thinking of the people I am frustrated with is like, I at a time, felt much the same way. However, it is flawed. So to anyone reading this blog who is not a member of the disabled community, let me clue you in. As Claire's disability evolved, her needs became greater than what we could handle as a family, without support we could not keep her in our home, yes, Rett syndrome is THAT hard. As we realized this there were plenty of well intentioned people that just didn't know what to do, it was one of the most painful and awkward parts of that regression period. I never thought that I would depend on public support, but we do and we have never been so happy to pay taxes. I wish it wasn't so, that the church could give us the support that we need, but sadly the world has come to a place where that is just not how it works. So, in the void of a community that we expected to be filled by the church, we found Kid Quest. It is a house full of wonderful loving people who just hang out and have fun, which is pretty much the thing that Claire needs more than anything else. She goes on Thursday nights so that I can get a break from giving her dinner once a week. They have theater day and put on play and all sorts of wonderful shannanigns. It was through her time at Kid Quest that I learned Claire liked the Beatles, who knew? During the summer they will go to the boardwalk or bowling. it is a place that I can drop Claire off without worry. I know that they are 110% capable of meeting her needs and keeping her safe. She has gained so much confidence having a place like this to go and hang out at. In rettland we discuss the rich environment and getting the wires to fire together, certainly, Kid Quest does this so much better than most of the therapy that we go to. So you can imagine the sick feeling in my stomach as I read the email that there was a $75,000 shortfall and unless the center gets some money fast, it would be closing it's doors at the end of February. That isn't much, it really isn't. It is more than I could write a check for, so here I am begging again. Please, if you would like to help the families of the Santa Cruz area or just Claire, consider making a donation. You can visit this link, then click on the fundraising tab on the left or you can mail a check to 704 North Plymouth Street Santa Cruz, CA 95060 checks made payable to Balance 4 Kids as that is the 501c3 that runs the program. Thank you very much for your support!

Silent Angel...Not So Much!

2011-01-26T13:19:00.000-08:00

I am sure that most of my rett friend readers have heard the term "silent angel" in reference to the girls that have been diagnosed with Rett syndrome. I imagine the term references that the girls don't use words spoken with their mouths to communicate. However, Claire is far from silent. First of all she has a voice through her computer and secondly, there is nothing quiet about Claire. Weather it is her laughing or screaming or maybe grinding her teeth, certainly none of these things make me think of silent. On Friday Claire's computer had an error that required me to call tech support. Of coarse Miss Amazing remembered roughly 30 seconds after they switched their phones off for the weekend, drat! With that as the stage, Friday afternoon and evening were pretty painful. Claire wanted to talk and she made it abundantly clear she was not happy. It was an emotional 5 year old, why are you doing this to me cry/scream that slowly ripped my heart out as it went on. We were aggressive on keeping the fun levels up over the weekend and that helped take the edge off her missing voice. Monday passed, it was long, but aren't they all? Again, I didn't call tech support in time but at least Claire's allergies were bad so between a long nap and being out of it at dinner she hardly noticed. Tuesday was my day! I got on the phone and the great tech support at PRC walked me through resetting it to factory settings, problem solved! Too bad I hadn't backed up the device since September, drat! Oh well, what's done was done, I was having a good day and wasn't going to let that set me back. I even took the time to help Claire walk to the dinner table and she did so well! Too bad Chloe tipped too far back in her chair and went crashing down with a loud thud to her head. Buckle Claire, attend to Chloe, situation back under control and tada, Claire's talker is working! Right away Claire started saying all sorts of things. Typically when she says something, she pauses and looks for a response from her audience. But she wasn't looking away at all, it was a run on, she looked stuck. I gently turned her cheek toward me and told her that it was alright to take a break from her talker, that she could just look at me and we could chat. Immediately tears welled up, her glasses steamed up and the whaling began. Chloe looked at me and said, "Claire's mad Claire's sad" what a perceptive little girl. It was an hour of the high pitched mad as hell business. She never ate her dinner and got into her pj's screaming. There is no doubt in my mind that she is a sweet little girl and that my life is better with her. She is strong, smart, funny, caring, loving and so many wonderful things. Silent, not so much.

Brene Brown: The power of vulnerability | Video on TED.com

2011-01-20T20:12:00.000-08:00

Brene Brown: The power of vulnerability | Video on TED.com

This is a really great 20 minute video from Ted. I so appreciate all of you that are on this journey with me, those close and far away. The connection that we share online really truly helps as I continue on this path that Rett Syndrome has led me down.

The Rett Clinic, not what I expected

2011-01-17T21:25:00.001-08:00

Last Friday we made the brave journey all the way to Oakland to Katie's Clinic for Rett Syndrome. So maybe it wasn't that harrowing of a drive, but I really don't like roads with more than two lanes and this trip involved lots of freeways. For this journey I was blessed to have Kat come with us. I love Kat for a lot of reasons, I might at some point just blog about that, but for now, here is a short list. 1. She accidentally taught Chloe to say 'dude' just by modeling it. 2. She wears jeans a t-shirt and either vans or cons, just like me. 3. If she were to be a character from a book it would be Amelia Bedelia 4. She has no other affiliation with the special needs world other than Claire, but she loves her and treats her like the normal little girl she is. 5. It is impossible not to have fun when she is around. And yes, that is the short list. Anyway, we got there and I got right to embarrassing myself. While Claire and Katie (as in Katie's clinic, she is such a cool girl!) hung out I went up to the desk to ask if I needed to fill out forms, sign something and offer insurance cards. Turns out the lady sitting there was the neurologist, not the receptionist, oopsie! I honestly don't remember much of what was said during our appointment with her, she started with how old were you when you had Claire and my brain went numb from there on. I do know that we are looking into booking ourselves a lovely suite at LPCH for a long EEG and hope to get the activity on the monitor before any decisions are made. As soon as we were done with the neurologist we split and went to Fenton's to meet up with Erica and Nolan. Really and truly, this was the absolute highlight of the day. No, it wasn't the highlight because the ice cream was so good, although, it was very good. It was a simple text and a small thing that made it. I have known that Erica is a great friend, then as we planned this a week before she offered to get there early and save a table so we wouldn't have to wait. As we drove there, yes, again I was running late, she texted me and asked if she could order food for the girls. I know it sounds really cheesy, but it was then that I thought to myself just how great my life is. I have the BEST friends. We got there and again, I was humbled by a small thing, Kat sat between the girls. Restaurant etiquette states that the point man be strategically seated between the two children and the wing man on the end. With Kat running the show, I was not only able to chat with Erica, I even got to eat while my food was hot, amazing! Chloe and Nolan did there typical super cute kid stuff, Claire ate an entire bowl of ice cream and we shared a lot of laughs, it was great!!! We went back late, but with such such a lightness in my heart, it was great! The second half of the appointments was about 4 hours. We saw a lot of people who all seemed to share the same opinion, Claire is doing great! I guess my work with her is not done for now, rather keep it up, but we just have to maintain. While that really is a best case scenario, it feels like I am being asked to drive across the country at the exact same speed with no cruise control to keep the bomb from going off. Keep it up, for longer, um, I think I can, I think I can... but with friends like this, it really isn't a question, I know that they will be with me for the drive and if I swerve off the road or the bomb blows up, they will be there with me through that too. All that to say, the doctors, not all that exciting, but I have some really great friends and I am very grateful for.

Silly Monkey

2011-01-16T22:32:00.000-08:00

I know that I talk a lot more about Claire on this blog than I do about Chloe, mainly because if it was just fun little Chloe I wouldn't need a blog to sort through all the mess of my head, she is easy! I never understood why people would want to have such large families after having Claire because just the one was so exhausting. But now with the perspective that Chloe offers, I get it. Chloe gives, she gives joy, she gives life, she offers freely. While it might just be my incredibly biased opinion, I think that Chloe is very special. For starters, she is smart! Yes, I am a proud momma. At first I tried not to think about it much. I didn't look at developmentally where she was supposed to be because I have found those charts to just be depressing. In the last few weeks her language has exploded and several people have told me how advanced she is, I have to say this is something new to me and I like it. Tonight, as Claire surprised us be standing completely on her own for 15 seconds Chloe exclaimed "AMAZING!", it was so sweet. Not only is she sweet, she is so compassionate and caring. When Claire gets upset Chloe will look at me and say "Claire is sad." then walk up to Claire who is normally bright red from screaming and crying and will kiss her forehead and tells her that she loves her, as I think to myself, AMAZING! When we walk away from people she says, "bye, take care" and also greets people with a "s'up dude!" and some sort of silly expression. Not only is she smart and a sweet spirit, Chloe is a girly girl! How has this happened to me twice? I am not sure, but Chloe looks to outpace Claire with her love for princesses, tutus, jewelry and makeup. She is our silly monkey, such a special little girl that I am so grateful for. I just love getting to spend the days with her and all that she is teaching me about laughter, fun and general silliness.

Enough?

2011-01-13T20:22:00.000-08:00

How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was right in the front of my mind. I wanted to go as long as we could before having to advocate and fight. At that time, the idea of a severely disabled child seemed so far off, and in some ways it still feels that way, in others it doesn't. Claire is doing very well right now. By very well I mean that she wakes up alive in the morning and is present throughout the day. Sure there is a lot of screaming and crying and she isn't doing any brand new things that are mind blowing (like standing up and walking away) but she is doing small things that I had forgotten to hope for. With that said, it doesn't seem all that broken. But then we talk to other families, learn what is working for them and a mean little voice creeps into my head, maybe we should be doing that too? Why is it that being content with this is so hard?!?!?!? It is certainly guilt and fear driven, what if there is something that I could have done more of that would have made a difference? Well, I guess we will just never know. I am mentally psyching myself up, today we go over the hill and through the city to Children's Hospital Oakland, to Katie's Clinic for Rett Syndrome. I had hoped to not go this year, but with the creepy seizure or neurological craziness that is going on, I called and they were able to get us in. These people are the experts, they see lots of girls and know all the stuff to recommend. They know what kind of equipment might help, what type of therapy to do and other stuff that I wouldn't know. We normally get a report a few weeks later with a short list of things to do. But honestly, I don't want a list, I would like to be done please. I would like to hear that I have done all that is humanly possible and that I can just enjoy Claire the way she is and not worry about the future. Is that too much to ask? I know that won't happen, at the minimum I see a long EEG in our future, maybe some seizure medication. Perhaps somethings for scoliosis and advice on getting BMI up. So here goes, off I go to walk that fine line, advocating and getting what Claire needs, but not getting greedy and trying to get things for her just because we can, enjoying her for all the joy that she is while grieving that we are going to a hospital because her body doesn't work right, and of coarse getting some ice cream along the way.

Play time?!?!

2011-01-08T16:34:00.000-08:00

It isn't much of a secret, I am much better at working than I am playing and honestly, it makes me a little sad sometimes. I know how to slow down, relax, soak things in, but play or have fun, not so much. I really gave it a good try when Claire was born. I tried so hard to not be the sum of the tasks involved in taking care of a baby. For a while, I was really doing well. Then life got a little crazy. But I was convinced to get back on the wagon and keep trying to have fun when we moved to Santa Cruz. If there was ever a place to blow life off and play, it's Santa Cruz. We didn't know it at the time, but Claire's regression had just started as we unpacked the boxes and tried to get to our new, and fulfilled groove in Santa Cruz. The best that I can explain my relationship to Rett syndrome is to that of an alcoholic working in a bar because somebody is holding a gun to their head. I've always loved to work. I had a full time job as a salaried banker lined up 4 weeks before I graduated from high school. I was blessed with a situation where my parents begged me to just go to college and enjoy being young. But no, I chose to work instead of have fun. So with that as the context, I had a very playfully productive week last week!!!! I am so proud of myself that I just had to share it with you all. Please note that I wish all of you would come join us for some fun, as I am figuring out, it is something that is much needed if you are going to survive the rett roller coaster. So here is the week in pics, Monday we went for a walk and it was so nice we decided to go for a walk again on Tuesday, these are pictures from two different days if you can imagine.
Wednesday Claire had ABA at home, but her screaming and having other people in our house didn't stop Chloe and I from having our first (and I doubt last) princess dress up fashion show.I don't have a picture for Thursday, we went to Music Together and it was really depressing, despite Chloe being undeniably adorable. I am sure it will be a blog in the future, maybe once class starts and I get through one without crying, but for the record, I attempted to have fun. Friday was a surefire fun day! We started at the beach with some friends, then went to horse therapy, which I know is technically work, but our insurance pays for it and we pay the rest privately, so it seems more like a fun thing than a state granted therapy that you have to meet goals for. Captain Awesome joined us, he is always good for a big dose of fun!

Drum roll.... on Saturday I went for a message, not because my back was so bad that I couldn't move. More because I wanted to, I knew it would help to keep me from that place where I get stuck in bed for days on end and I could, so I did. Because I am a crazy person, I requested to listen to Mumford and Sons which was really, different, but yes, fun! Now I am leaving, just before dinner, to go have a cappuccino at Verve and play on our new iPad and try to figure out what it does. Huge thanks to Captain Awesome for making each of these fun days possible and for helping me remember how to laugh.

Of Course I Can

2011-01-04T16:25:00.000-08:00

A few weeks ago we took a quick trip down to the Monterey Bay Aquarium (MBA). We decided to go late in the afternoon instead of first thing. With this change in schedule we were able to see the otter feeding, something that in my delusional mind, would be fun for the girls. Claire and I went up a few minutes early to get a good spot to see the show. As people crowded around, she got overwhelmed and just as the feeding started, totally lost it, so we retreated. As soon as she had some space she was fine, so we opted to watch on the video screen below. The trainer was telling the crowd how the feeding wasn't just a play time, rather it was also a period of a rich environment that the otters learn important skills they need, and with that I stopped breathing. That sounded so familiar! Here all sorts of people were gathered around and so interested in the rehab of these otters, as they stared at Claire as she rolled around the exhibits wringing her hands. Don't they get it, she needs a rich environment too! With that, we went home, me with a pretty heavy heart. Fast forward a few weeks, the Layton family was hanging around in the area and we were able to meet up with them at the MBA. I love being around Maren and Leah and couldn't think of a better way to try my hand at being in public again. We showed them all of the highlights including the hot pink flamingos exhibit. At the end of it, is a display about changes everyone can make to help, Maren found the picture that said it all and it was then that I knew this would be my theme for the year.
It was a good thing that Maren's husband Ryan was there, he watched all three girls while we had our picture taken, which I have to say I was very impressed with. I just loved the expression on the lady in the picture, because regardless of what I look like, that is how I am feeling almost all of the time. Five days have now passed since our fabulous play date with the Layton family. Today I found myself having to wake Chloe up to go get Claire, we were already 10 minutes late when I went to get her only to find that her shirt had obviously been used to wipe off her hands after having them in her poopy diaper. With no time to spare I took her little poop cover self and strapped her in the car to get Claire. Once we were home, the first order of business was to change Chloe. Of coarse I got her completely naked before remembering that the diapers were still in the car. So I put her down to run around while I fly down the stairs, but before I go out the door I see that Claire had fallen asleep on the couch. I knew that if I left her there she would certainly end up with a finger in her eye or a naked butt on her face, so I quickly laid her down on our bed. I then again started to make my way for the car when I saw Chloe, standing on the carpet in the hall, peeing, sigh. Went down got the diapers and got Chloe dressed. By that point I was laughing, in a crying sorta way. Then I got a message on my phone and saw the picture "OF COURSE I CAN" it's my new background, a much needed reminder. I really wanted to have a giant pity party and sit in the corner and eat my weight in sugar, but Claire was waking up so there was no time for that. So I did the next best thing, I ate sugar with the girls. I think that a large part of the pity party and my frustration in general is that we are no longer in crisis and I am not sure what to do with that really. Aside from the creepy neurological activity that has been pretty random, Claire is doing GREAT!!! At school today she used her talker to get popcorn that her aide was having as his snack, she is calming down pretty quickly, standing better, getting more confident with her walking and learning a bunch of academic type stuff too. So other than the fact that she has Rett syndrome, life is actually normal right now and is scares the daylights out of me. For years I advocated like hell, pushed insurance companies and had IEP's every month or two. But I don't have to be doing that right now, it is all working like a fairly recently oiled machine. So without the need to work on sitting, standing, hand use or anything else, we made brownies. When I first had the thought it seemed so logical, Of coarse I can. And you won't believe it, I did! It was my first cooking demo with both girls and it was great! We then watched Beauty and the Beast while they baked and following that had a dance party to veggie tales while I folder little link clothes. For the icing on the cake, after dinner, Claire pooped on the potty, for the third night in a row!!!!!!! All that to say that I am not entirely convinced, but I will keep saying it out loud until I believe it, OF COURSE I CAN.