Connected

I suppose that it is slightly ironic that in true Miss Amazing fashion, my month of amazing didn't exactly turn out as I had planned. I had so many fun posts to write about the many amazing things around me, but I got the flu and didn't have enough energy to think in sentences more or less type. A few days after I fell to it, Claire got it. Then as she almost started to get better, she got a secondary pneumonia. She went 11 days without eating solid food. We used syringes to feed her pediasure. It wasn't fun. It was in fact, rather scary. This certainly wasn't our first round in the world of crisis mode. We are sorta experts at operating in crisis mode, or so we thought. This round was different. This time we were connected. Connected to our hearts, able to feel the pain and the fear of the reality of our child not eating. We were connected to friends who came around us in support. We had people around us to encourage us, a friend brought over the most amazing homemade chicken noodle soup that I have ever had and a few different people were available to take on Chloe and her energy while Claire and I rested. It truly was amazing. So instead of blogging about amazing, I was just sitting back and absorbing it and that was indeed such a beautiful gift. Crisis mode takes on a whole different tone when you are connected, one that has more hope than the version of crisis management that just involves one being super strong and trying to merely survive. Then this morning, literally the clouds broke. After days of grey and rain it was sunny and warm and Claire woke up with her trademark grin that we had missed so very much. She ate her entire breakfast and laughed at Chloe's ridiculousness. Since it is now spring break, we dropped Chloe off at preschool and opted for a stop at Verve for coffee and treats before heading down to the ocean. As we rolled, Claire had the sun on her face and a big smile. Somebody on their bicycle even commented that it appeared that she was indeed enjoying herself immensely. Sure that comment made me cry a little bit, Claire has such a special way of blessing everyone around her when she can be herself, and I appreciate each and every day that she can do that.

Heart Rate App

I've talked with a few people who mentioned wanting to find the app. So here is a link to the iTunes store, you do have to have an iPhone 4/4s in order for it to work.

Apple is amazing

I had much grander plans for my month of amazing. Life happened, that's a whole new blog post, but I will give you this one last bit of what I think is amazing.

Claire is home sick from school today. She just woke up and is laying in her bed watching netflix on the ipad. It blows my mind that there is such a thing, that is so portable and easy to set up and can stream tons of stuff that she would want to watch, for sure it gets filed under amazing. Then I got a call from Claire's pediatrician. We talked about a lot of things, one of them being dehydration. He told me that an easy way to see if it is going to far is that her heart rate will rise to around 130ish and if that happens we need to get in asap. After we talked I was able to pull out my iphone and open the heart rate app. By placing her finger over the camera lens I was able to see that her pulse was 83, she is fine for now. That is why I think apple is amazing. There is a lot more to the story as you might be wondering, will write more soon.

The amazing world of AAC

This doesn't need any words from me, watch it, this man is truly amazing.

Daffodils

More randomness that falls into the category of amazing. This doesn't need much more explanation.

530. Daffodils

I WANDER'D lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,	5
Fluttering and dancing in the breeze.
Continuous as the stars that shine
And twinkle on the Milky Way,
They stretch'd in never-ending line
Along the margin of a bay:	10
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.
The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,	15
In such a jocund company:
I gazed—and gazed—but little thought
What wealth the show to me had brought:
For oft, when on my couch I lie
In vacant or in pensive mood,	20
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

 

Verve is amazing

This certainly isn't the first time that I have mentioned Verve on my blog. But I don't think that I have ever had a post just about them and I figured that my month of amazing was the perfect opportunity to do it. Sure it's coffee shop, a really good one at that, but to me it is so much more. It was the good coffee that got me in the door at first and if I am honest I don't often get coffee anywhere else because I have been completely spoiled by their consistent high level of quality. I haven't found anywhere else that makes coffee that I like, of course, Captain Awesome being the exception, he's been known to make phenomenal coffee at home. The insanely good coffee aside, Verve has been a safe place for my children. People don't stare at Claire, the staff always talk to her and know that her favorite thing is a cup of whipped cream with chocolate sprinkles. It is also a place that Chloe enjoys. They have not only tolerated her craziness but embraced it. When she stood in the corner and peed all over the floor they were so gracious in how they handled it. I am pretty sure that it was the baristas at Verve that first introduced Chloe to high five and giving knuckles and now they engage in her asking everyone the same questions over and over. Last summer, Verve was the only public place that I could take both girls to by myself. In part because Chloe knew the rules for the space pretty well and in part because if she jumped off a chair or some other sort of shenanigans I knew that it would be fairly well tolerated. It also helps that they have great access to disabled parking and a bathroom big enough for Chloe to push Claire in circles inside in the event that I might have to pee. Now that summer is over and both girls are in school four days a week I am most often here alone. It's a place that I can enjoy being, not doing anything and that's a pretty big thing for me. In fact, there are a lot of people just being here. Sure some of them are busy working away. There are the super cool hipster types on their various levels of apple products (admittedly I am sitting in the corner typing this on my ipad with my fancy bluetooth keyboard) and the professionals that meet to discuss some sort of business. Then there are some that read and others that are there to socialize and some of us who just sit. It is a beautiful mix of all sorts where it's all pretty much accepted and there doesn't tend to be one predominant group. It doesn't hurt that it is a short walk to the beach from here and that I often here Michael Jackson playing in the background here, what more could you want along the lines of ambiance? All that to say, Verve is amazing. Between the wonderful staff and unparalleled coffee, I sure am lucky that I get to have this place as a part of my life.

Chocolate and strawberry

I was recently shocked when I made this discovery. I was a skeptic. It didn't really sound good, but there was intrigue. Chocolate body scrub was among the latest offerings from the Body Shop, my favorite place to indulge my senses. So I went in to investigate. I will say that I didn't like the chocolate body butter as it smelled of cheap chocolate in my opinion. Then I smelled the scrub. It was rich and dark and had an aroma that made me think of Valhrona. Still I wasn't convinced so I left with a little tiny sample. Wow! I have to say that I never thought that I would find myself saying something like this, but the chocolate body scrub was amazing. The only thing that made it better was my strawberry body butter. I felt like a big chocolate dipped strawberry and as weird as it sounds, well, it really was amazing.

Santa Cruz is Amazing

That last post was a bit of a departure from my month of amazing, but at the same time, that seemed like an important part of my amazing story that I needed to tell. When I talk about living in Santa Cruz and how amazing it is I am referring to the county. It is a fairly diverse area and it is a pleasure to have it all as part of my backyard. For starters, here is a picture that I took during my morning sit and do nothing routine.

I don't always stay up on the cliffs, we often go down to the beach if the tide is out and play in the tide pools, like on days like this.

 The ocean is a 10 minute drive from where we live. One of the treasures that is closer to us is something that Jared takes better advantage of but I hope to spend more time there in the coming months. Henry Cowell Redwood State Park is truly amazing. This is a picture from the side of the road, being inside it is just more than a photo can explain, so you will have to do with this.

 To round out my love of being close to the ocean and the forest is our proximity to our farm. Yes, I wrote that correctly, "our" farm. For the last few years we have belonged to a CSA for Live Earth Farm. It is such a gift to be able to pick up a box of veggies every week that were just picked and feed my family with them. It is as equally good for the soul as it is for the body and something that I don't know how I ever lived without it. This picture was taken last Sept. at the farm when we picked a years worth of tomatoes. I just opened a jar of them tonight and I swear that you can almost smell the warm sunny air when it popped open.

So there you have it, Santa Cruz is amazing. I am so thankful that I am aware of that now. If you had asked me five and a half years ago if I would ever visit Santa Cruz much less live there, I would have laughed and cringed at the thought of all the weirdos. Now that I am getting closer to being one of them, man am I glad that we lost our minds and moved here. Living here is a gift that I cherish every day.

Remembering when

Five years ago today Claire and I got on an airplane in Phoenix and flew to San Jose. Jared picked us up at the airport and drove us home. As we drove down the windy mountain road to our new home peace settled in, it was just so good to be together. It was exciting. Jared had spent one night in the apartment on the bed that was delivered, so aside from a brand new bed and a suitcase of his clothes, the place was empty and it was wonderful. Light filled the rooms and as I laid on the bed, a warm gentle breeze carried in the fresh aroma of trees (something we did not have in AZ) and I remember just taking a lot of deep breathes, just trying to soak it up. The reality of the move was sinking in and as I laid there, waiting for the movers I dreamed about taking Claire to a farm to get fresh fruits and vegetables. I imagined warm afternoons at the beach, sitting and watching as she and Jared ran in the waves. I laid there for a while because well, I was exhausted. You see, the day before had marked one year since my mothers large stroke. We had just moved from San Jose to Arizona the previous July to help out with her care. Miraculously she recovered well and despite the doctors suggestion that she had 4 months to live, she is alive and well to this day. Between her improved health and us hating living in Arizona, in Nov. Jared returned back to work in California. It was four months of transition. He lived in a hotel and Claire and I moved in with my parents while we worked on finding a place to live in Scotts Valley. During that period I had a lot of complications with my Chrone's, my wisdom teeth came out, I was nearly admitted to the hospital twice after that, had a fever of 103 for 8 weeks and severe sores on my feet so that I couldn't walk. So you can imagine the relief that I felt, to finally be in better health, to be living with my husband and to be resting in the middle of the day. I was so thankful to be done with all the chaos. Life was just starting for us. We would attend a new church, make new friends, start our new life. The world was wide open and we could make whatever we wanted of it. The only thing in the schedule was a quick check with Claire's pediatrician the next day, well that's a whole new story. I'll just say that I will remember March 7th as the day that I was able to dream like that. I still rest by the same window with the same beautiful warm breeze and dream. Although they have become more guarded over time, my dreams for myself, our family, for Claire have become bigger and brighter than anything that I could have conceived of five years ago.

Erica is Amazing

I'm not sure, but I think that I first "met" Erica on facebook. Then I met her in person at Erika's Dream in Feb. 2010 for about 30 seconds. Eventually we met again and it was then, at Pizza Antica over a long lunch that I realized that Erica was AMAZING. We laugh now, how I remember telling her that she needed to get into Katie's Clinic to get connected with the doctors and therapists that would be more helpful. She was stressing because her insurance wouldn't approve it and didn't believe me that she could just call them and it would work out. It's funny because now Erica is the coordinator for Katie's Clinic and she's the person to talk to if you need to get in. It is also just a little funny that the two of us are friends. If it weren't for rett syndrome our worlds would never have intersected. She belongs to a country club and likes to play golf (Erica you know I don't hate you for this!) and I am hippie who only wears flat shoes and spends my free time canning what I get from the farm we belong to. Yet somehow, tonight we had dinner and we didn't talk about rett syndrome. In fact neither of us talked about either of our children. I'm not sure what we talked about but I do know that we did each buy a pair of shoes at Nordstrom, albeit two very different pairs of shoes. Erica's been my travel buddy on a few different adventures, Erica you are right btw, Virgin is absolutely the best, hands down, thank you for introducing me to them! I have truly been blessed with getting to have Erica as a friend to walk with me on this journey. Her perspective is often very different than mine but it makes me think outside of the box that I live in and I so deeply appreciate that. She's a vibrant woman who has faced challenges including but not limited to rett syndrome with such dignity and grace. She's not afraid to talk about all the crying and sadness that goes on and how truly trying it all is sometimes. One of my favorite things about Erica is that despite all the extra rett crap she has not lost herself or her life. It is easy to feel guilty and not do the hard work of taking care of yourself but she does. Erica is sorta my hero for this, I hope that someday I can be as good at having fun as she is. So that is my little bit about Erica. If you think that she is amazing too, leave a comment, she'd like that.

Thanks for the birthday dinner Erica, you are indeed amazing friend!

180° SOUTH

A little while back something miraculous happened, Jared got to choose the movie we watched on Netflix. The poor guy lives in a house with three females so I indulged him in a documentary that I thought was about mountain climbing. Less than 30 seconds into it and I knew that I didn't need to indulge him, this was going to be a great movie and it was. That is why I am starting off my month of amazing by talking about it. You can click here to see a short trailer (there are two, I prefer the newer one) for the film if you are interested, in my mind it is worth it for the scenery alone. They call themselves the conquerors of the useless. Perhaps it is because so often I feel as if I have no margin, no room for anything that doesn't count at least twice, either way this story really intrigued me. We have adopted a new motto for The Adventures of Captain Awesome and Miss Amazing that we got from the movie and I will leave you with it. Seriously, if you have time to kill and Netfix, you won't be disappointed, it's amazing!

"It's not an adventure until something goes wrong." Yvon Chouinard

March, the offical month of amazing

I had meant to post this at the start of the month but the weather was spectacular and I couldn't bring myself to do much with my free time outside of walking on the beach. It has been an amazing way to get this wonderful month started! I don't know how long you have been reading my blog, so you may or may not know that I like to refer to myself as Miss Amazing and I am married to Captain Awesome. We came up with the names for when we do things like worry a ton when all of the sudden Claire doesn't seem to be able to walk when a few hours later we realize that her braces were on the wrong feet, things like that. Anyway, March is the month of my birthday. I've never been super big on celebrating my birthday. Last year Captain Awesome did surprise me and I very much enjoyed that. If I am honest, I was never super huge about my birthday because I just didn't think it was that big of a deal, that I was that big of a deal. I sit and write today, on the other side of a full-fledged identity crisis and can say that I finally get it. I am special, really everyone is, but that includes me too. How did I miss that? I don't really know but I know what started to change my thinking. I was reading a book and the author described humility as not being down on yourself but viewing everyone equally. This might not sound like that big of a thought, but it blew my mind. It started the unraveling that at first made things a lot more messy. Eventually I got most of it sorted out and am excited to get on and see what it looks like to live this out. So I am taking March to celebrate different things in my life that are amazing. It isn't hard to think of a list longer than what I could ever write about and I have become a bit of a beach bum, so we will see how this works out.

Imagine

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

Valentine's Day, minus the heart attack

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

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

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

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

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

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

Celebrating

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

Let It Be

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

How I do it, again

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

Student of the Week

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

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

PT

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

Another Wave

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

Monday

Tuesday

Wednesday

Thursday-morning

Thursday-night

Friday

Saturday

Sunday

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