The Sweet Sound of an Adult Male Voice

The day finally came, and two weeks early! Yesterday Claire's Eco2 with EcoPoint came and we immediately got it set up. Well, we at least got it turned on and her page set loaded. Claire loved just playing with the pages and checking things out yesterday. She went through several letters of the middle of the alphabet and was very impressed with herself as was I. The other thing that she kept saying was "put silly hat" just like she had when we did the trial in Dec. So I dug out the hat and had it ready for the morning. I wish that there were words to describe the sweet look on her face when we went in this morning, it was better than Christmas! I had positioned the device on the table so that she could talk while I fed her breakfast. Immediately she navigated through 3 pages to get to her music and she selected "Rockstar" to play. I have read about how this whole system is based on muscle memory but I had no idea that the map would be right there for her! This is what she did every morning during the trial, of coarse she did it right away. I gave her a choice of color for her outfit and after a bit of thinking, she chose purple, not too much of a surprise. She then reminded me of her silly hat. I just can't say how sublime it is that we have this and she can use it in such simple and practical ways. What 4 year old doesn't want to have a say in what they wear? I sometimes give her the choice between jeans or a dress, or two different t-shirts. But this has so much more potential! I think that the first programming order of business will be to make a morning page where she gets to pick colors for clothes, hair style and have options to talk about the day. I did already get her a female voice "Crystal" is the name and I slowed it down just a bit so that we can hear everything that she wants to say.

Chloe Loves Her Blanket

It might not seem like that big of a deal, but it is so exciting for me! Chloe will frequently go to her crib and reach in and pull out her blanket which she then plays with and drags around. Typically she sits on it as she reads her books, it is just too darn cute! I am so grateful for the fun and joy that she injects into life, Lord knows I need it!

The Reality of it All

Isn't it funny how sometimes separate events in life all seem to work together. Yesterday we had the chance to go down to our friends house and play. They got chicks for Easter and Claire was just in love with them! Our friends also have an amazing little girl Leah who is almost a year younger than Claire. Of coarse things couldn't go too smoothly, after playing with the chicks Claire got very upset about something and the demon version of her took over. I sat there on the couch restraining her as she screamed and cried. We had been there less than 15 minutes and I was ready to leave. By leave, I felt like I was ready to leave not just my friends house but the outside world altogether. I hate that Claire does so well in our stable little environment but I know that it is not good to allow her to just stay in that security. We worked through it and I am so proud of her, after a bit of screaming she started to regain composure and we were able to have a lovely lunch eating pizza and green juice with Leah at the princess table in their kitchen. As we sat and I fed Claire, Leah would talk about all sorts of things. She was calling her mom on her play cell phone, reorganizing the jewelry in her purse and explaining how she liked The Cat In The Hat. Leah is just too precious! She gathered all of her treasures into a big bag and took them into her room to play with Claire. They dressed up in fancy Ariel dresses to wear as we read Cat In The Hat. As my friend Jess would read the story, Leah would interject the words that she knew as she has memorized the book in its entirety. We had a really nice time! So why did I cry most of the way home? After being around a typically developing child my mind wonders. I think of what silly things Claire would say if only her body would let her. What objects would become her prized possessions? Later that night after the girls were down I started to look through all the pictures that I just transferred from my old computer to my new one. I found pictures of Claire before her regression. Oh the pain of remembering when she would sit and feed herself, when she would crawl like lightening to avoid pj's after the bath, when our life was "normal". It was a lot of emotion for one day. I sobbed and sobbed and eventually fell to sleep in the early morning. I did pretty well in the morning, I was able to hide the tears from the girls. Then it was time for church. I knew that the topic today was the into to a series on pain and suffering which oddly enough, isn't a subject that I have ever struggled with. Dan did an amazing job handling the delicate topic. One of the things that he touched on that really caught my ear was that what we do have is a choice, that pain can make you harder or softer. It was then that I felt so validated, that my tears won't be wasted. I know that years ago, I was really hard, through this process I am slowly getting softer. As I sit here and type, I breathe a huge sigh of relief. I got through this round. The reality of the situation is that there will be many more rounds like this. I know that I will get through them all, somehow (I'm guessing by the grace of God). I know that the next few months will be particularly hard for me as I am entering the world of Chloe doing new things each day that Claire has never done and might never, so please forgive me if I sound a little down in my posts. I am going to be fine, it is just a very challenging (and super wonderful!) period for me.

And We're Back!

Wow! We've been to Arizona and back in the last week and it is so good to be HOME! Many would consider Arizona to be home as we both lived there for the majority of our lives, but no. This trip made it ever so clear that we are where we belong for now. It was a pretty uneventful trip. We didn't go to any hospitals which was a very welcome change. Jared did throw Claire's lunch in the trash can, before feeding it to her, then had the pleasure of retrieving it so she didn't starve. We managed to see some friends and family and squeezed in some fun here and there. One of the absolutely most wonderful things was my parents dog Maggie. Let me be honest, I don't like dogs, I am not a dog person, never have been. We own two cats, because I don't like dogs. Enter Maggie, of all the well behaved dogs that are out there that might change my mind, she isn't on the list. Maggie is more of a grand-dog. My brother rescued her from a bad situation and then was working to much to keep her, so my parents got her still as a puppy. Technically she has been to school and my mom is working on discipline , in a you can do mostly whatever you want sort of a way. So we get there and what does the dog do, jump and lick and jump and lick. Here is the kicker, Claire loved it! Not only did Claire love Maggie, Maggie brought things out of Claire. Her hands were so quiet, her smile so wide, her spirit so calm. The first dinner I am pretty sure that Maggie managed to lick Claire's face after almost every bite that we fed her. Claire was in charge of taking her for walks while we were there and she loved it. We also took two trips to the dog park where Claire practiced walking and petting the dogs all at once. It was amazing at how regulated she was, which is really hard to do while out of town. As much as I love to say how I am not a dog person, Claire has changed my mind. Funny how she tends to change my mind on a lot of different things that I thought I knew about, but that is a whole new post. The drive home went much better than the drive there. I think that it helped that we didn't let a sippy cup get stuck behind Chloe's back like we did on the way there. I think that the hardest part of the trip was that we didn't get to leave Rett Syndrome at home. Vacations just aren't as fun when you have to bring all your baggage with you. Don't get me wrong, I love Claire exactly how she is. At home we have lots of systems in place to make her life as easy as possible. Take all that away and all the sudden you start to realize how hard it all is. So I guess we will just be stuck on the Monterrey Bay for a while, which doesn't seem all that bad at all!

Things Other Than Packing

We are all really excited for our trip to Arizona. So excited that I didn't even realize that in less than two days we will be there. So I decided to do everything that I can think of besides pack and get ready. Not sure why, but I rarely pack before an hour before we are leaving and it doesn't stress me out. This trip is a little different because we plan to leave some time between 2am and 3am. The plan is to have the truck packed before we go to bed, wake up in the middle of the night (which has been known to happen anyway) throw the girls and and off we go! I have been doing lots of planning in my head, like knowing what I have to do, thinking about what order I should do things in, which doesn't make much difference if you never start on the list. In my defense, it is so hard to pack when Chloe is around to have so much fun with! So while she napped today I put together this little video. I have been meaning to make a video for Claire and her Rett Syndrome journey for a while and haven't taken the time to figure out how to do it. So this is my practice, isn't she wonderful! Thank you Apple for making one part of my life so simple!!!

I love it when I wake up and this is what we do!

Let me start by saying that this post is not about politics. If you are for or against the health care reform I really don't care. However, with all that stuff going on a group on facebook caught my eye and I have been very troubled by it. So I will rant about it here and be done with it. I had seen three or four people that have joined the group "I hate it when I wake up in the morning and Barack Obama is President." So I looked at it and there are nearly half a million "fans". Seriously?!?! I hate it when there are so many whiny Americans who take so much for granted! Last I checked most people that have facebook also have a computer with Internet or a ridiculously expensive phone. They also live in a place where for the most part you can drive around (in it's own right something else we take for granted) without fear of being held at gun point, go to the grocery store and purchase fresh fruit that is flown in from all over the world so that we aren't kept from enjoying whatever fruit we feel like regardless of if it is in season. If somehow there was an auto-accident along the way there would be an emergency response team that would do whatever they could to save your life. Then there is just the fact that you are alive, be grateful! Life is a gift, if you are alive, regardless of who the president is, make it a good day. You might say that's easy for you who has a charmed life. It is true, I lead an amazing life and have many blessings, it hasn't been without it's hardships and any day that I enjoy is because I choose to. Perhaps if there was a group "I hate it when I wake up and my daughter has Rett Syndrome" I might consider clicking to join, but I doubt it. For the most part when I wake up I pray and thank Jesus that we all woke up, then go for a nice walk and listen to the waves.

The Adventures of Jared, Claire and the Smart Car

This picture was taken just after Claire and Jared returned from their adventures in the Smart car. I so wish I could figure out what it is about that car, but she loves it!!!! Tonight the two went out after dinner to go down for a special event at their favorite coffee shop, Verve. I know it is cliche but there is something about having a place to go where people know you. The two walked by Rick's Barber Shop and waved at a friend who was working inside. By the time Jared was putting Claire down in line at Verve, Rachelle (friend from Rick's) was there taking Claire to say hi. Then they saw Kat, one of the awesome girls that helps during the week, at the register (I have to share her with Verve, she loves coffee). Jared was able to quickly enjoy an espresso and a cappuccino before they were off for some shopping. Apparently Claire enjoys advising Jared on fashion, which really couldn't hurt. She picked out a few shirts at the Billabong store from what I was told. How amazing is it that we both tell Claire what it is that we want the other one to get for us for gifts, and she normally comes through. As if that wasn't enough fun the two decided to drive East Cliff and enjoy the waves at dusk. When they returned home Claire came in the door with the biggest grin on her face. I love it when we have those moments that life slows down enough to work at her speed and she thrives!

Is everything alright?

Lately I have been feeling pretty well. My iron levels are almost into the normal range for the first time in 5 years. We had a good trip to Oakland Children's for the natural history study and I have even been cooking a bit. Yesterday I was a little bit stressed out. It was the first week for Bible study and even though I knew that Jess would be leading the group I was nervous. I hate going to anything that is exclusively female, it just isn't my gig. Claire was trying to have a tea party with Jessi and Chloe was playing the role of Gozilla, trying to climb up Claire, so I took her to play in my room while I got a few last things done. She was playing with my iphone but it was locked so it wasn't a problem. I was calling Jess to tell her that I was almost ready to start panicing I was so nervous. After hanging up on her answering machine the phone rang. It was 911, they wanted to know if everything was alright. Oh the irony! They had gotten a call from my number and a hang up, so they would be sending an officer out to check on the situation. How is it that I dialed 911 without noticing? It would be one thing if Chloe did it while playing with the phone, but no, it was me. It wasn't too long before there was a solid knock on the door. The officer stuck his head in the door and Chloe started to flirt with him. I explained that Claire was in the bath with Jessi and they were the only other people here. I told him that I am just an idiot and dialed 911 without even knowing it. Is it bad that this is what happens on the good days?

The snail and the CSA

Last week I made a huge mess in the fridge in the process of thawing some beef. Over the weekend my wonderful husband took it all apart to clean it out well while I had all the veggies out prepping for the week. He did such a good job that he even found the snail that was on the underside of the bottom shelf, which doubles as the top to the produce drawer. I was so glad that it was still alive and we set it free in the bushes off the porch. It seems very ironic to me that just as we are finally slowing down we would stumble upon a lovely little snail, which to me is the embodiment of slow. We are proud members of Slow Food USA but in the last few weeks haven't been taking the time to prepare meals and enjoy them together. So being in the kitchen with Jared when we found the snail was just so special, I am crazy, I know. It is so nice that things have calmed just in time for the start of the CSA season. Not that I don't love the beets, kale and cabbage that we have been getting all winter, but the start to the CSA season is a sign of lots of yummy food to come. Last season was a little crazy, I eagerly anticipate being able to soak in all of the bounty from our local farms a bit more this year. I really feel like farm fresh foods is one of the ways that God tells me he loves me. I am in such awe at the diversity of different crops and how fragile the system is. Too much rain or heat and there is a problem. Yet, it all works out and large populations have sustained on this fragile system. What a beautiful example of God's beautiful control of everything. I love how much my little Claire is like the snail and the farm. So fragile, yet she perseveres, with a great deal of patience, she can do the most amazing things. It is so hard to learn to back off and not facilitate nature, this morning as I was patient Claire stood up using only contact guard for assistance, something that she has been able to do, but it depends on me giving her the time and not rushing. So many lessons to learn, too bad my brain is so finite, I guess I will just have to keep trying to go slow and absorb what I can.

Disneyland, the full story

Since returning from the trip I really haven't talked about it much, after finally talking about it with friends I think I am ready so here goes. Thursday morning we went into the girls' room to find Claire covered in vomit, pretty much my worst nightmare. I held her and contemplated the reality of why we were going on this trip, because she has a life threatening condition, my heart sank. The vomit was dry and matted in her hair, she was weak, it wasn't good. We made a bath and washed her hair, with that she perked up a bit so we figured it was most likely reflux and she was fine to go to school for a few hours before we left for the flight. She got dressed in her new skirt for the trip and ate breakfast well. Once we got to school her aide and her OI instructor met us in the parking lot. Before taking her seat belt off we talked for a moment to give her some time to process. Just before I went to get her out she vomited violently, poor little thing, even out her nose. So we went home. The limo was coming to pick us up in just over an hour and Claire didn't look like she was in the mood for a big fun trip. I called Make A Wish and was surprised when they said this happens often. After a short nap and a snack, she started to surface. About half way to the airport she was all smiles and back to the vibrant Claire that we love so much, there was a huge sigh of relief. We had a "Home Alone" style rush through the airport. By the time we got to the gate everyone was lined up and pre-boarding was about to begin. Southwest Airlines, was amazing! The guy at the gate helped me down the jetway as I had both girls (in two separate strollers) while Jared went to get lunch for Claire. The flight was short and sweet, Claire enjoyed Dr. Seuss on the ipod until she fell asleep. The guy in front of us had his hands full with the cutest little girl (Chloe) who was jumping and climbing all over the place. Everyone got off the plane and Claire was still asleep. Jared went to get her wheels set up and was greeted by 4 Orange County firemen and a Sheriff. They had come on their days off to help us! They had a big welcome sign for "Princess Claire and the English family" Gift's in Ariel gift bags, flowers for Claire, even toys for Chloe. For the first time in my life I walked through the airport with not a thing to carry. They pushed the strollers and carried the bags, it was unbelievable! By the time they loaded the luggage into the car for us, both Jared and I were fighting back tears. We exchanged hugs good bye and were on our way. Their presence encouraged Jared and I in a way that I really can't put into words, I will just leave it at amazing. We headed straight for the hotel to get settled in. Just a bunch of normal stuff, Jared got lost and a possible traffic ticket on the way to two different grocery stores trying to get the right food for the girls, Chloe screamed for about an hour (my parents heard her in the room across the hall) and Claire slept through it all. I sat and watched as she occasionally smiled in her sleep, I assume she was having unbelievable mermaid princess dreams. Friday was our first day, we went to Disneyland and got the largest cinnamon bun ever for breakfast. Then it was over to California Adventures for the princess filled lunch at Ariel's Grotto. Being overwhelmed we forgot about Claire's desire to use the potty and she got pretty upset at us, but she made a quick recovery and had a great time with all of the princesses. She was so excited that she was asleep at the table before dessert got there, always a good sign of a lot of fun. Saturday was the big day. Claire loved having breakfast with Minnie Mouse, who kept coming to our table and admiring Claire's pink glitter shoes. She also enjoyed the pancakes, her favorite. After breakfast we headed into the Magic Kingdom where Claire met her fairy-godmother-in-training. We picked out a dress and then Claire enjoyed sitting while her hair was done up. It seemed that the day was going well, dress up is one of her favorite things to do. Disney has an official "Wish Lounge" that we were able to go back to and rest a bit. Claire enjoyed her lunch while watching Aladin, I think a new favorite. Then we were off for the big meeting with Ariel. Of coarse I left the paperwork in the room and remembered the wrong place to meet, because I am awesome! After a bit of stress amongst the grown-ups we figured it out and made our way down to see Ariel. We were ushered into a private room that was nice and quiet. Ariel came in and sat right next to Claire. She started to talk to Claire and asked what she had enjoyed. Claire's sweet little lips started to move, yet no speech came out so I offered an answer for Claire's approval. Her eyes swelled up with tears, bottom lip quivering. She wanted so badly to answer herself. Ariel was great but it was too late, the weeping intensified and she was screaming and very unhappy. It was about a 6 minute walk back to the wish lounge. People starring at the girl in the wheelchair who was so deeply upset. I kept playing it over, I don't think I could have done anything different or better, it was bound to happen. I thought that the whole vomit thing was a nightmare, having Claire's one wish ruined by her physical limitations, worse. We sat and watched Aladdin and she fell asleep. I sat there sobbing, feeling like such a failure. All I wanted was for her to have one day that Rett didn't ruin, too lofty of a goal for now, maybe someday. I do have to say that the cast at Disney was great. They wanted Claire to come back if she was up for it and would do anything to make it happen. After resting we decided to wander in that direction and test the waters, turns out there were white caps. It was such a blessing to have my parents with us as my dad took Claire for a walk as she just wasn't really happy. Wouldn't you know that 10 minutes later they returned, Claire had a Minnie Mouse doll on her lap and a huge smile on her face. We mentioned that Ariel might be around and asked if she would want to say hi again, she lit up, a sure "Yes!". Jared went and made the arrangements and they took Claire back to meet her right away. Ariel was so genuine and glad that Claire came back. She wanted Claire to hang out all day, her friend Snow White even came by to say hello. I could see that the Princess Faire was going and Ariel was late, but she had all the time in the world for Claire. It turned out that she too loved Minnie Mouse's pancakes and gave Claire a tip on Minnie's chocolate chip cookie, who knew that the two had so many favorites in common. We left only because we decided to go on a hunt for cookies, with Claire who had a giant smile on her face. That night Jared and I had reservations for dinner, I was numb. It had been so low, and so high. The goal was to just keep breathing, which I did. Sunday my parents had to go but my brother joined us. It was so special that Andy came to help, he took Chloe duty while Jared and I went on rides with Claire. Crazy that a year ago I hadn't spoken with my brother for about a year, and here he was, such a joy to be with and have fun together. I think that one of my favorite parts of the trip was when he was trying to convince Claire to share her chocolate parfait that she got for dessert. The girl likes her chocolate, but with a lot of persuasive smiles, she obliged to share with Uncle Andy. In that moment she spoke so clearly with her gestures, it was as if she was a typical little girl who was just playing silent in an effort to keep all of her dessert for herself. Claire got her story book ending, which is really all that matters. So if somebody asks how the trip went, I'll say good. What I will mean is good, in good in a rip your heart out, stomp on it, put it back in and it works even better sort of way.

And I'm spent!

I last blogged just before we headed up North for Erika's Dream. It was an amazing weekend. I wore what will most likely be the most fabulous shoes of my life (after wearing them once I'm good for another 30 years). We saw many of our Rett family and were joined by our friends Rick and Rachelle. For the first time in four and a half years I was confident that the girls were fine and I was able to really exhale. I woke Sunday morning at about 4:30 so excited that I couldn't go back to sleep. I just kept thinking about what Dr. Jones (one of my favorite people on the planet) said in her speech the night before, "Rett Syndrome is no longer considered a degenerative condition." Those words carry so much weight in my heart, in Oct. 2007 when we got our diagnosis it was thought to be degenerative. In 2008 I was told by the school that having Rett meant that you were mentally retarded (they used nicer words, but that is what they meant). On Wed. msnbc.com had an ad for IRSF on their homepage, that night Charlie Rose had Dr. Huda Zoghbi, one of the researches who found the MECP2 gene in 1999 on a panel that discussed early brain development and the role that Rett Syndrome is playing in how scientist understand it all, really amazing. The next day Dr. Bird (rett expert that reversed it in mice) released a paper that redefined what was thought to be understood about how the Rett Syndrome protein worked. So it has been a pretty exciting and emotionally exhausting few weeks for me in Rettland. While all this was swirling around in my head we went to Disneyland for Claire's big trip, Chloe figured out how to crawl, pull to stand and is nearly climbing. All in all I do think that Feb. 2010 was one of the greatest months of my life. As intense as all of it has been, I hope to just remember it as the month that I wore the most fantastic shoes ever!

It feels so good to feel!

I think that the best way to describe it all is that it has been quite a ride. I had such a normal life, then Claire was born. Then she didn't gain weight, just as we took her out of the hospital "AMA" I got the call that my mom had suffered a huge stroke. Then we moved to AZ, six months later we moved back. Then we learned that something was amiss with Claire. Lots of specialist and testing and we learn she isn't necessarily going to die soon, she just has Rett Syndrome, such good news, sort of. As Claire stabilized I tried to try to be alive and feel. There were glimpses of life, but much more numbness. Then I was pregnant and somebody drove through the back of our truck. Then Chloe was born. So many highs and lows, yet along the ride I have felt very little of it. The last few months I have really been fighting to to regain myself and not just be the sum of my circumstances. Through all of the progress and set backs I am emerging and it feels so good to feel again! This weekend we will be attending Erika's Dream. An event that funds Katie's Clinic for Rett Syndrome. As I prepare myself for this I think of all of the other families that need this. Rett has not only stolen my dreams for Claire, but dreams for many others too. The hard part about feeling is that you can't just pick the good. But I have to say, it is so much better to feel both the good and the hard than none of it. It truly is what gives my life the depth that it has. It is what allows me to look at this picture and smile, not half, I'm busy and sure that is cute smile. Rather a slow, thankful, awe struck smile.

Adventures in Surgery, con't.

I think that I may have mentioned that typing has been hard in the last few months because of my wrist. I was referred to a surgeon as I wasn't healing as well as I should have. Turns out I wouldn't get better until they took the cyst of the center. So on Monday Feb. 1st they took it out. It is a little disturbing how good I am getting at this surgery stuff, seriously, I am fine to not have another for a long while. Nothing too exciting about this one. Jared dropped me off at the curb and I was texting him to hurry up and pick me up a few hours later. I do have to say that general anesthesia never leaves you feeling good, nor do cuts on your body that are an inch or longer. The hardest part was the 10 days following. I had a bandage on and could not move my wrist at all. So I wasn't able to pick up either of the girls as that requires two hands. I got the bandage off yesterday. It worked out well that as I got home Chloe was just ready to get out of her crib after her morning nap. She was up on her knees which helped, I picked her up and it was the most excruciating pain. She buried her head into my should and then smiled the sweetest smile. It was great! Then Jenna saved me and I went and iced it. It is so good to be working on healing. I am thrilled that I will be in a lot less pain for the big trip to met Ariel and will have two hands to help as both girls are working on standing and walking.

I am loving February!

This will be short because typing with one hand takes forever! I knew that we just had to make it through January and that things would improve. I had no idea that they would get so good so fast! Claire and Chloe are both amazing and so much fun. I do miss caring for them very much. Only 5 more days until I am allowed to try to lift them, I am anxious and eagerly anticipate my recovery. I know that I won't be 100% right away, but now that the problem has been fixed it is nice to know that I am at least recovering and not just managing the pain. We got approval for the Eco Point and are just waiting for a denial from our primary insurance, which has never been hard to get. It is possible that Claire will have her computer to speak with in the next two weeks. Just the thought is so unimaginable! Chloe is certainly determined and full of energy. Her newest trick is pulling to high kneel. It looks like she will be pulling to stand soon, a feat that Claire is still working on. Such is my life, amazing levels of joy and grief in a perfect coexistence, even in the greatest month of my life. I have been taking pictures in an effort to replace the words that I don't have time to type. Please check my flickr page with the link on the sidebar. Their faces tell the story better than I can. I hope that you are having a great February and celebration of love, life and today!

Pink glitter!

I think that a new tradition may have started around our house today. Typically, Jared takes Claire out on a date on Saturday mornings. First they hit the Verve for some coffee and a cookie and then find their way to a few different surf spots to practice walking, listen to waves and just enjoy time. Recently the local Ducati dealer relocated to being right on the way between our home and the coffee shop and surf spots. You can see from the picture where the two of them ended up. I am just in awe that Claire loves motorbikes so much. She is a very sweet girl but can be particularly impatient when the activity is something that is not to her liking. I do think that the pink glitter helmet had a lot to do with. If I had a crystal ball, I would guess that there will be many more pictures of Claire around various motorbike stuff and there will be glitter, in some form or another of each of them.

Celebrating today

Mt optimism for this year has been tempered with reality, but still I am choosing to celebrate today. Our trip up to Oakland for clinic went well. I didn't get any really bad news that day, so it was an improvement over last year. Already there have been many hard days. As Claire grows and continues to amaze me the torment of the reality seems so much more. The brighter the day, the harsher the reality but I have to just keep praying and keep putting one foot in front of the other. I did get half the Christmas cards out and today I am mailing the rest. I used cards with a tree since we never put one up. It is so great to sit and reflect on the miracle of the birth of Christ away from the holiday busyness. Truly, it is today, every day that the birth of Christ becomes something amazing and worth celebrating. Without the hope that the birth brings, I can not imagine how I would get through today. So far I am aware of 6 girls with Rett Syndrome passing this year, two of them yesterday. I struggle every day that I want her to be free yet I am so blessed by her presence, I do not want her to leave yet. So we continue on with the constant emotional roller coaster between joy and grief, and with that I will just try to celebrate today.

Almost Normal

Ah, a sigh of relief. It's a new year and I am so excited. Last year I was excited to, but I really do think that things are going to improve. Our latest new year tradition is a trip to Katie's Clinic at CHO for our annual every January. Last year I was almost in the parking lot when I got a call from my mom that my grandfather had passed. It seems like between that point and this point there were many more hard days and that is why I am so glad to say hello to 2010! We are headed there today and I am hopeful that it goes a lot better. It was the first week back in school and Claire got to school on time every day, which has to be some sort of world record. Yesterday afternoon we took a long afternoon stroll with some good friends. Coffee at Verve, happy girls in a stroller, the sound of crashing waves. I have to say that I think we are almost back to normal and I am really excited. So excited that I might even get the Christmas cards out in the next week, crazy I know, but it could happen.

Sweetness

I am again in awe of life and how ironic it has been for me lately. A doctor noticed that Claire's spine has started to curve a bit so we were referred to a specialist to monitor the situation. The trip to the doctors office was the perfect storm of circumstances. My wrist was hurting, Claire needed to be in her chair (instead of our double stroller), Chloe was over tired and woke up as soon as we got out of the car. Then we waited forever, at least 30 minutes, while trying to feed two children, it felt like forever. Then we went back and waited more. After the first interview with the nurse practitioner it was decided that we needed an x-ray. Thankfully by that time the cavalry had come. Jared helped Claire to stand for the x-ray and back into a room we went to wait. Finally the doctor came in with nothing helpful to say. As we left I was so upset that Claire had to jump through so many hoops, all for somebody who didn't get her. He actually recommended a "real" wheelchair for her so that she could play with the wheels. I didn't know what to be mad at, him for such a crazy recommendation or me for being the pessimist that assumed that she couldn't benefit from reaching the wheels if she wanted. It had been a long day, I am still emotionally exhausted from Christmas, and I had just spent almost three hours at LPCH and had little to show for it but over tired girls. As I got onto the freeway Claire started to get more unhappy so I reluctantly put on "her" music. Her favorite song in the whole world is "Sweetness". As the song started she turned her head to look at me in the mirror with that slight "Mona Lisa" smile that she has. Then the best happy sound came out of her. I love it when a favorite song comes on and all my problems melt away and I love it more that Claire has this. As we drove home, Claire soaked in the beauty of the forest and bobbed her head to the music. I pray that some day she can dance to her favorite music on this earth, that day will truly be sweetness.

The Sound of Silence

It's not something that I hear much. I typically fall asleep while the dish washer is running or music is playing. When I am awake there is almost always a lot of things going on. But not today. Jared and Claire went to get coffee, watch the surfers and go shopping in Los Gatos. This left Chloe and I home and she took a great nap. I roasted some squash and made the baby food for the week. Then took a shower. Once I was dressed the most amazing thought happened. There was nothing pressing. Sure there are 4 loads of laundry waiting on the floor, the carpet needs to be vacuumed and the dished could use some attention. But the phone wasn't ringing, I wasn't late for an appointment, there was no child in need of my help. I sat down and the only thing that I could hear was a bird chirping, then it flew away. Then I heard a rattle in the crib and the phone rang, but it was a very nice moment. I am reposting as there was a comment that I wanted to remove and couldn't figure out how.

On My Drive to Work Today

It might sound odd as I am a stay at home mom, but I do feel like I commute every day. Claire goes to school five days a week at two different locations, each at least a ten minute drive from our home. Getting Claire a public education is indeed a full time job in itself. Enough explaining, on with my story. As we started our journey to school today I was thinking about all of the usual stuff. When should I call the County Office of Ed to discuss the next IEP, I have to call the district and find out what on earth they are thinking, when are we going to see the specialist about scoliosis the appointment is in Dec so it must be soon, the typical monotonous part of my job. As we got onto the highway the light was coming through the very thin layer of clouds, it was breath taking. Normally we go to school in a dark grey fog, this was more like low laying clouds. I told Claire that I felt like we were driving in clouds and we could pretend to be angels, I got a big positive yes to that! As we dropped getting closer to sea level the clouds cleared and the sky was so amazing, crisp and clear. I tried so hard to soak in the beauty of the morning. The trees were such a deep bright green since it rained a few days ago, the leaves were bright red and the blanket of light fog was slowly starting to reveal the dark blue water beneath it. I seriously have such a beautiful commute. It did help that both girls were sitting quietly smiling. Then we got to school. As I helped Claire to walk toward the classroom I discovered that she had puked inside her shirt, but I had a clean set in her backpack, so we are still up for the day. Now I need to get a referral to GI, another thing that I have been meaning to do.

There are no great and humble cooks

Maybe it has something to do with my time in culinary school or the work I did in the kitchen at the Westin, but I am a pretty confident cook. To be honest, confident most likely doesn't cover it, more accurately over-confident, humility lacking, and down right boastful would better describe how I view my skills. Lately, all I've been making is food for the girls and every once in a while, us. Chloe has been working on solids for almost two months and aside from rice cereal, I've made it all. However, with the surgery I got a little behind on my food mashing activities. Knowing that we were getting low on the supply I picked up a few jars of Earth's Best organic baby food while we were out. Two nights ago Chloe devoured the pears and cinnamon and I figured that I would try a jar of carrots since we were out of veggies. You would think that I was trying to kill her. I got one spoonful into her mouth and she looked at me as if I had tried to feed her poison. I put on a smile and tried for a second bite, intercepted. She then, in the agony of being fed horrible jarred food covered her eyes in disgust and then tried to pull her hair out, in the process, getting carrot all over! I have to say it was the greatest complement ever! To those of my friends that are a second child and have voiced concern about Chloe not getting full attention in the shadow of her sister, know this. Claire was fed jar after jar of baby food (still the organic stuff) since I was chasing around AZ with my mom post stroke. Chloe has been eating fresh cooked veggies from the farm one town over. She might eventually have to wear hand me down clothes, but she is eating like a queen. After this incident I promptly roasted some winter squash. Yesterday we had it for lunch and she gobbled it right up! I have to admit that as a mom I screw stuff up all the time, like completely forgetting to give her a bottle before bed, leaving the diaper bag at home and so on, but at least I know that she loves my food and will turn her nose up to anything of lesser quality.

Christmas Continues

The struggle in my heart continues as we celebrate this advent season. I hate the association between Christ and His absolutely miraculous birth and the height of consumerism. But Claire loves the lights and all of the fun crafts that happen at school for the season. I had resolved to celebrate Hanukkah as that story is one that speaks to my heart and where I am right now. I so desperately need to be reminded constantly of who God is and what He is capable of, much more than I can ever dream. But I can't find the candles for the menorah and I don't have the energy to prepare any special food. So I am back to square one. We did manage to put our tree up, it is a nice size for the girls to play with and it requires very little maintenance. I did use the season as an excuse for Claire to buy Chloe some presents. It was so much fun to hook her switch up to my computer and go shopping on amazon with her. She was very thoughtful as I said we could get Chloe three things. She absolutely refused to get her toys and was reluctant to pick out clothes. So we settled on two books and a hat. We also wrapped our presents that we got for the little girl off the tree at church. It gives me such joy that I can have a conversation with Claire about giving. I so wish that she could talk back to me with more than her amazing smiles and thoughtful looks. I know that she hears me and that she is learning about all of this, maybe that's really why I hate the holidays, it is just so hard seeing her not getting to do the many things that I know she wishes she could.

Adventures in Surgery

Earlier this week I had the unique pleasure of having my right thyroid removed. It was a nodule that measured 4.5cm cubed. It was really getting annoying and I am very happy to have it out of my neck. Of coarse, getting to that place, like most things in my life was an adventure. It started when I went to meet the surgeon. We had a quick discussion about risk and all that stuff. He was more interested in Chloe, who could blame him? He kept saying how beautiful she is, I see that stemming into another problem further down the road, but we have a while. So after a quick casual chat I signed some papers and off we went. Two weeks later I have to not eat or drink after midnight and show up at 10:30 for a noon surgery. The sad thing is that it was no problem to not eat or drink, after thinking about it, I normally don't because I wake up running and don't normally stop until noonish for some nourishment. I get into my super wonderful surgery dress with matching stockings. The nurse comes in to put in my iv. She asked which side was my left and after thinking for a moment, I figured it out and raised my hand. She then wrote yes on the left side of my neck, scary part is, I didn't see this as a problem. Somehow, before she sat down to start the iv I pointed to the giant lump protruding from my neck on the right side. Oops! She said which is your left side, not which side are we taking out and I was too relaxed to care. So after a good amount of alcohol wipes to clean the sharpie marks off my neck, she wrote yes on the other side, started the iv and left me to work on the afghan I am making for Claire. A few minutes later the surgeon walked in and introduced himself as Matt, pausing and then adding his last name in an effort to seem a little professional. Jared and I loved it, we joked that only in Santa Cruz does the doctor come in talking like a laid back surfer. Then the anesthesiologist came in. He asked a few quick questions, stated that I seemed fine and didn't need anything to calm down at this point. I continued on my hand work and he appeared again pretty quickly. He asked two questions and then asked Jared if he had a Ducati. Of coarse, Jared was wearing a Ducati sweater. I then sat there while the doc talked with Jared about the Monster that he had purchased six months ago and all of the custom work that had been done to it. How ironic, minutes before this guy came in Jared had stated that we might need to buy a Monster as the sale that morning hadn't performed at expectations. Eventually, he asked me the rest of the questions you ask somebody before you put them to sleep for three hours and left. Two minutes later he was back to discuss roads and winter gear suggestions. It really was a gift from God. Jared hates anything to do with needles and the pre-op is much harder for him. So in the weirdest way, it was the best experience. An hour late they wheeled me back I took a few deep breathes and woke up in the recovery room with the worst headache. The afternoon didn't get much better, the night got worse. I faded in and out of sleep trying to wait out the drugs. Somewhere in there I had the pleasure of a very nice visit from a friend to break up the monotony of waiting it out. Around 4am I woke up and the headache was gone, I was a human again. By the time that the surgeon came in at 7 I was sitting in bed watching the news and checking my email. He told me how he had used a spoon to try to pry it out but it was too big so he had so cut a bigger whole. That explained why it took an hour longer and why my chest was so sore. I was out by 9, less than 24 hours in. It has taken two days of extra naps and taking it easy, but I am about back up to speed. I'll chalk it up to an interesting experience and a reminder why Claire gets her medical care not in Santa Cruz.

The Adventures of Captain Awesome and Miss Amazing

I'm hoping that it is just a lack of sleep and not some sort of mental regression. Lately Jared and I seem to screw stuff up a lot. We have resigned ourselves to accepting our mistakes because we are doing the best we can given our circumstances. So when I do something that ends up to work to my detriment, I will tell Jared that it was Miss Amazing that did, as if that somehow makes it alright. Enter Christmas time. We normally don't even try to attempt many things that "normal" families do because it is too hard. But Christmas got the best of us. Los Gatos has a park with a huge light display. You pay a few bucks and drive slowly through the park and soak in the "holiday spirit". Saturday was going well and we were organized enough to feed the girls early and get them into their pj's before 6. We told Claire that all of this effort was to go look at Christmas lights and she got so excited! So we put them in the truck and off we went. I was so proud of myself, I even got the address online to put into the nav so we didn't get lost. Somehow even with the exit now prompts, we still got the wrong exit but thankfully still found our way to the entrance to the park. Where we discovered that several hundred other people had the same idea that we did. Even if we had sat in line to get in, Claire would have been asleep by the time we got in and she was already borderline bored. Great, Captain Awesome and Miss Amazing strike again! We felt like such failures. Claire was so sweet with her smile anticipating the lights. After driving in circles a few times and misunderstanding each other a bunch, we hit the jackpot. In the square in downtown Los Gatos was a huge tree with very simple lights on it. Of coarse, it was on the wrong side of the car and we couldn't get Claire to look out the other window so she didn't see it. Since it was such a simple display, there were no people around and plenty of parking. We parked and Jared got Claire out and wrapped her up in a blanket. They walked into the square and were surrounded by the trees all lit up. Jared described her as having the most content and sweet smile and peacefulness, I so wish I could have seen it (it was cold and Chloe was asleep, so we were in the truck). We headed home and in about a minute and a half, she was out with that soft sweet look on her face. Why is it that we keep falling for wanting the bigger and better? So often that is not where it's at. But is does make a good story for the adventures of Captain Awesome and Miss Amazing.

This crazy life that chose me

As I sit at the computer tonight I am torn in half with emotion. Claire was very upset this afternoon at a failed attempt at a wagon ride. Clearly she did not want to read the stories we picked, play the games we had, we just didn't have the right answer. After a short time out she calmed enough for us to talk. I asked if she would want to use her talker (her computer that reads eyegaze, we are in trial) to give us some hints for something that might help. I set her in front of it and she went right to the art page. Earlier in the afternoon she had made a paper snowflake with Jessi while I was gone. She wanted more. To see her light up as she instructed Jessi on what she wanted done with the art project was amazing. She was very clear. She wanted red paper with triangles. Just as the world of communication seems to be getting a little easier we find out her spine is starting to curve, not the end of the world. But I really was hoping to not start any new battles for a little while, oh well, change of plans. She was so worn out from the art direction she threw herself into that she was exhausted. I kissed them both and left for Jessi to read one last story. I started my wind down routine, check email and facebook. There it was, another angel flew home last night. That makes two in two days. Lucy was 14, Elizabeth 8. Why must the Rett Syndrome be such a monster. Why did it have to take a healthy girl who wasn't fighting. When will it take Claire? I love having her here so much, I pray that our day to say goodbye doesn't come for a long, long time. It is such a painful reminder, life is so rich and so fragile. We must be very careful with it. Growing up I was never exposed to children with life threatening situations. It was nothing that I ever thought of because there just wasn't much of it. Now I find myself surrounded by it. I know that it is with reason and purpose. I know God is with me. It is surreal, this crazy life that chose me.

Best Thanksgiving Ever!

Words can't explain, so here are a few pictures. I recently inherited my late grandmother's rolling pin. I woke up early on Thursday morning to make my pie crust with it. It was so good to be back in a kitchen and loving what I was doing. Then we went to a good friends house for the feast. As good as the food was, it wasn't even the best part of the day.

Holiday Rant

It started yesterday with my desire for a Christmas tree. We haven't had one for the last 4 years for one reason or another. I got irritated that I don't have the energy to 1) Keep a tree alive in our home 2) Buy one, put it up and eventually take it down. I started feeling resentful that we live with such little margin. We don't even have the means to celebrate Christmas! After getting the girls down Jared and I collapsed on the sofa to eat our Pizza My Heart (because we don't have energy to cook or clean up) and watch amazing race. We were both taken by every commercial revolving around the holiday spending season. That sure cured my desire for a Christmas tree fast. As I drove Claire to school this morning we discussed the thankfulness gifts that we are distributing to her entourage this week. Maybe it's just because gifts is my love language, but to me, it makes so much more sense to give gifts at Thanksgiving than Christmas. Christmas is the celebration of the birth Jesus and his gift of salvation to the world, it's about Christ. Not families or eating together or trees with lights. Which leads me to my next tangent, the White House holiday tree. Get over it people! Putting lights on a tree has to do with the celebrating of Christ how? I think it has a lot more to do with the material and commercialism of the holiday spending season. I think that calling it a holiday tree seems more appropriate that it being another symbol that devalues the true meaning of Christmas. So back to Thanksgiving. Shouldn't this be the biggest holiday of them all. As Americans we have running water, hospitals that are sanitary and do a pretty good job of not killing people, we can drive our cars to Starbucks and get a latte without even thinking about the back breaking work of the poor people on the other side of the world who picked the beans for us. As Christians we can rejoice that every day of the year God is intimately involved in the details of our life and that He loves us and forgives us despite our sinful nature. I have so much to be thankful for, I don't know that I am going to be able to squeeze it all in this week. My hope is that I won't and that I will have a spirit of thanksgiving all year, but I am a work in progress. I look forward to getting our Hanukkah menorah out and celebrating God's fulfilled promises. I look forward to eating lots of peppermint flavored treats and looking at lights because its winter and it gets cold and dark early. I look forward to our advent calender and birthday cake for Jesus. I like winter time because it has a lot of good celebrations and because the cooler weather brings us to do fun things that make us feel all warm inside. I don't buy into the "Jesus is the reason for the season" bit. Jesus is the reason for each day, every month all year long. Shouldn't we love on everyone like Jesus would want us to all the time and not just in December. Well there it is. You can tell I am feeling a bit feisty this morning, which is good, because I have been numb for far too long and it is good to be back.

Sorry, it's been a while

I am so glad to have survived October. Every year now, that month kicks my butt. Now that we are more than half way into November I am starting to recover. The time has been filled with lots of really great and fun times. It is really nice to have a little time to breath and stop and be thankful for it all. Claire is making a lot of progress right now and I am finding myself overwhelmed. I really didn't realize how I had stopped dreaming for her until she started to do things that I had never dreamed of and the process has been amazing. This morning she sat at the kitchen table with her talker. She kept playing her favorite song, stopping after 30 seconds and then starting it again. I really had hear the song enough so I returned to the usual running around in circles getting ready to get out the door. Since the shock value was gone she listened to the song in its entirety. Once it was done, I heard the talker say, put, put. So I went over and she had gone to the dress up screen on her own. Again she started "put silly hat" On the table in front of her was her new rainbow striped hat with purple flower ear flaps. She wanted it on for school. In her own 4 year old way she was getting through to me that she wanted her hat on for school, how typical is that! I love how she reminds me to take big pleasure in the small things. The other thing that she is teaching me is that God has a good sense of humor. I don't get computers, I don't like them. When it stops working I normally unplug it, walk away for a few hours and hope it is magically better when I go back. I am not a girly girl, never was. I wear jeans and a t-shirt whenever possible and might put makeup on twice a year, if you count lip gloss. Enter Claire, who wants to use her computer that reads eye gaze to discuss what dress up dress she will wear to the tea party with her dollies. I seriously don't think that I could feel any less equipped for this gig. Yet somehow, we make it through the days and most of the time we even have tons of fun. Who knew? Will try to be a bit better about posting, I always say that and never am, but I am trying.

Not typing

I just thought I would let you all know, I am not updating the blog much as it is currently very difficult to type. I am wearing a wrist splint on my left hand, which leaves me typing with one hand. I am going to hand therapy twice a week and hopefully I will be better with a few weeks. When I get it off, I will update more. I hope you all can enjoy your fall as much as we are!

October is Rett Syndrome Awareness Month

Good Morning! Today, October 1st, is the first day of Rett Syndrome Awareness Month. Rett Syndrome is a devastating neurodevelopmental disorder that happens almost exclusively in females. Girls develop typically from birth to 6 - 18 months of age. ... At some point after at least 6 months of age the effects of this syndrome begin to ravage our daughters. Our sweet Claire lost the ability to use her hands to feed herself over Thanksgiving 2007, weeks after she turned 2. The only word she said was Daddy, something we have not heard in years. She cannot tell mommy why she is so sad or when something hurts her, she cannot tell her daddy if something scares her, she cannot tell Gracie that she is her best friend. What she can do is look into your eyes, that look speak volumes, with that look she tells you THANK YOU and I LOVE YOU. When she giggles you can't help but giggle right along with her. She is determined. She is strong. She is happy. She, Miss Claire Olivia English is pure light, love and joy, our angel sent straight from heaven. Please help us spread the word and help us find a cure so that my beautiful girl can do all that she cannot do at this time.

September, where did you go?

August 26th was the first day of school (see pic to left) and then I woke up and somebody told me October was next week. What happened to September?!? School is going really well this year and I am so excited about all the things Claire is going to get to experience with this class. Somehow, things going well doesn't make much less work for me. I can only hope that October does not fly by in the same way, but I have a feeling it will, oh well. A lot of really important ground work was laid with the school in the last few weeks. Claire's teacher is awesome and the people working with her really get her, which is nothing short of divine intervention. October 1st we have a meeting at the school with the rep from Prentke Romich, who will be bringing the non-beta version of the eco-point. Click here for a demo video. We will have the device to try for 30 days, as soon as we can get one. There is a list, but everything is set for insurance to pay for it, once our name is up. Oct. 3 is even more excitement. We go up to Oakland for the study. A bunch of really famous people in the Rett world will be there and I hope to learn more about the IGF-1 trial that was announced earlier this week. We will also get to have some good rich down time with some of our favorite Rett families, which is always nice. Then Oct. 5th we have the IEP, which will certainly go better than last year, but we still have a lot to do to get ready for it. Fall is my favorite time of year and even though we have a lot going on, there is much fun to be had. I have a big pile of apples just waiting to transform into apple butter and baby food, that should make the house smell good. Chloe has just started to eat off a spoon and that process promises to be great fun, pretty much everything with her right now is great fun. We also plan to visit a pumpkin patch or two, just because it is such a good time. We are anticipating working with a "wish" team in the near future as we are in Stage 2 with Make a Wish. Oct. 17th we will journey to Chico for Alexis Dream, anyone is welcome to join us in supporting Katie's Clinic and IRSF. Then Claire turns 4! The big decision will be what flavor cupcakes to bring to school, I am pretty sure they will be pink, even if she is the only girl in her class. I am so excited, but I do for see being bad about updating the blog, sorry. I will get on when I can. It is far less motivating to do any sort of typing since my wrist is giving me a bit of trouble. Thanks for still checking in, even when I am worse about updating.

Feeling Blessed

Things are starting to slow down enough that I am able to think a little and feel as I move through the days. I hate it when I go through a day and know that there were a lot more blessings in it than I saw. Friday was a little intense. Claire got out of school two and a half hours earlier and the two previous night Chloe had kicked our buts. Then our nanny called to say that she was at the doc with strep and wouldn't be around any time soon. So I pretty much freaked out and felt so overwhelmed. Then, I assume by the grace of God, I found the strength to take a deep breath. So glad I did! I had so much fun with the girls that day. Then Saturday we went up to Oakland and had a nice relaxing morning at a street food festival. As I sat there feeding Claire, of coarse with people staring, I was thinking how blessed I am to be able to share my love of food with her. One of the suckier things about Rett is that often the girls have to get a feeding tube to keep weight on. Claire still has very good control of her mouth, so every day we try to put the yummiest food we can find in it. I am finding the richest and most amazing moments that I get to have each day come out of really hard things like this. I guess that has lead me to start to cherish the tough things, because ultimately, they truly lead to such sweetness. Like talking on the phone with my mom or watching Claire take 8 minutes to wiggle out of bed. Maybe they are just everyday things to most, but because of some hard circumstances they have turned into the biggest blessings. So I sit here this morning and think about my life and I just have to say how amazed I am that I have gotten so much blessing, far more than I ever could have imagined.

Food Rant!

I begin writing with such mixed emotions. It may seem silly to you, but I am very passionate about food. It gave me such joy today when I went to get my CSA stuff and I saw that I was getting a watermelon. A real watermelon, not one that is perfectly round, but one with flavor and character. After picking up my fruit, veggies, eggs and goat milk from the porch of a home a few blocks away, I stopped by Safeway to get some tortilla chips for Jared to enjoy the salsa that I made a few weeks back. Wow, what a different emotion that experience was. I almost felt violated. All of the rows of packaged food, stacked to the ceiling, yelling at me with their loud marketing. I am still in my 20's, it isn't like it has been that long since I have been in a market, but this was horrible. The package sizes and low quality ingredients just blow my mind. There was an open refrigerated case with single serving beverages as well as bottles of wine. I was not really surprised that the case didn't contain any decent wine but I was taken back by the other beverages. Who needs to drink 24ounces of Frappacino, nobody, ever! The soda was sold in 1 liter bottles, what happened to a 12 ounce can? Then there was the check out. I was aghast at the magazines degrading various famous people for whatever they are doing in their lives mixed with the convience foods put forth by the Hershey company. I almost ran out of the store crying. The poor people that go there regularly. Such a good reminder of how important it is to "Vote With Your Fork". It might sound crazy that we eat mostly beef and veggies, but we are blessed with those resources close to us, so that is what we eat. I know that I am not perfect. I have a bad habit of occasionally enjoying Panda Express (which I normally regret) or when trapped in the car with two sleeping girls going to a drive-thru for some french fries. I guess the part that makes me so sad is that so many people just don't realize what they are doing and the options that they really do have. Those that think that they are doing the world a favor by purchasing really small individually wrapped organic snacks are missing it. Eat an apple or a carrot! It is tragic to me that our nation is so missing the big picture on our food system. On the bright side, there is movement, momentum is stirring for a sustainable food system. I belong to a preservationist society. I am able to get tomatoes and cucumbers among other things in quantity almost directly from local farms. When their fields are brimming with food faster than they can get it all sold at market, an email goes out and I can put my order in for a Friday afternoon pick up. There are few things I would rather do than spend a Saturday at home with the girls, in and out of the kitchen and wind up with shelf full of salsa for the winter or strawberry jam. Actually, there is one other thing I would rather do, go to a festival celebrating food and it's place in culture. If you are in the Oakland area at the end of Aug. you might want to check out Eat Real, we hope to go, girls and weather permitting. So that is my rant, I feel better now, time to go make some fruit spread with all my fresh berries.

Claire and her Daddy

They got dressed for church matching, not even on purpose, how could I pass it up!

Ah, the good life

It has always been a good life, but finally, this weekend I was able to exhale and soak it all in. Saturday we wandered down to the aquarium to meet up with our good friends Garrett and Heather and their two children. Since we were with friends we were able to get a picture of the four of us. It was sunny, Chloe being as smart as she is, refused to open her eyes in the bright light. Pretty good though, no one was screaming ;-) After we lost the will to go on in the crowded exhibits we went out to the tide pool. There were groups of four diving and doing some sort of educational instruction. I stood with Claire and Alicia as the two were transfixed watching the group below us. As we stood there it was the perfect balance, warm sun beating down with a gentle sea breeze to take the edge off. Since the weather was so epic it was decided among the grown ups that the day should be further enjoyed while eating ice cream. It was leaving the touch pool that was a huge surprise highlight of the day. Claire was so calm after standing and watching the divers that I thought she could walk up the stairs to leave, and she did! There were about five stairs. She would pick which leg to step with and I would help her to place it on the stair, then she would step up and take another step to get to the next stair. She was so proud of herself, so I told her we would go celebrate with ice cream. She didn't need to know that was already the plan, she was stoked! I can't say that I remember much of the rest of the weekend. Once we got home Jared and I rotated so we both got naps, for some reason we were exhausted. Both girls are a good time, but both facilitating and enjoying the fun does wear one out. Now I find myself at Monday afternoon and off to a pretty good start to the week. As I type Chloe is very excited about the octopus rattle hanging above her and her new found ability to twirl it over and over. It is warm, a perfect end to the summer only 10 days left of being home alone with both girls. I am already starting to miss having Claire around all day, but I know she loves being in school. So we will just go slow and enjoy today and deal with the rest later.

Hi, My name is Chloe and I found my tongue

And the Adventure Continues

Well, it appears that I have made it through yet another day. Maybe because I got to go for a walk this morning. I actually woke up with a bit of energy, compliments of two girls sleeping seamlessly through the night. Since we were both up before any of the little ones, I took a quick walk down to Peet's for an iced coffee to get the day going. Even with sleep, I need the help at this point. It was so nice to be back outside so early. The fog was still hanging on the trees and the sun hadn't burned through yet. I am not sure why, but I think that flowers actually smell more in early hours, either that or I just notice them more when I go slowly. It was only 30 minutes and a medium coffee, but I did revel in it. It is the small things in life that make such a huge impact. One of the other small things today was the cat. (I use the term small liberally, she is a very fat cat) Claire has been a bit down lately, each day she gets stronger and smarter, she is more aware of her limitations. Today Athena joined her for nap time. Claire was so excited that she couldn't sleep, so they sat and listened to Dr. Seuss, book on ipod. Since Claire was resting, by 3pm I found some time for a quick bite to eat. Of coarse, being Miss Amazing, I dropped the glass dish with the fork in it, starteling Chloe awake and bringing he straight to screaming for her life. From there on I can't remember much, I do recall that they were both very tired. When Jared got home I announced that we were getting takeout sushi as I would not be cooking do to complete exhaustion. Only sixteen days home alone with both girls before school starts, I think, that by the sheer grace of God, we will actually make it. Yeah! for those of you that would like to see more pictures ofthe girls, here is a link to my flickr page

Anoiting With Oil

Last Sunday was the baby dedication at our church. We realized that with all of the stuff that was swirling around in our life for the last 3 and a half years, we never had Claire dedicated. So we took the opportunity to dedicate both Chloe and Claire. We have been blessed with an amazing church that we are part of. The dedication was different than others that I have seen, it was so special. As a prayer was said, we anointed the girls oil, Jared Chloe and I Claire.





This was the Prayer:

May her mind have Your wisdom
May her eyes see Your Glory
May her ears hear Your voice
May her mouth tell Your truth
May her heart be Your home
May her hands do Your work
May her feet follow wherever You lead
And may her knees only bow before You,
her loving Lord and God.

I was really surprised at how intense an experience it was for me, it has taken a few days to process it all, thus the delay in blogging. As I touched her hands it was as if it all hit me at once, God is going to use these. I continued and touched her feet and her knees. I am just so in awe of a God who not only does not discriminate, He excels at using the weak and the broken. As I continue to process what happened that morning, what we promised our church, what they promised us and what I know God has promised I am so encouraged. It is as if the weight that I put on myself was lifted. We are always working, on standing, hand use, communication and we will continue to. But the difference is the realization that God is already at work, using who Claire is right now. I loved the process of publicly recognizing that the girls are a gift from God. If only I could do that every day for everything in my life. With all this rattling around in the back of my head, we come to bedtime tonight. We did our usual, two girls in the bath tub, fun splashing routine. After Chloe was down and the lights were out, Claire got a huge frown face. The dramatic frown that quivered slightly with one giant tear slowly rolling down her cheek. I talked with her and asked some questions to try to figure it out. It is really a tough thing to explain to a three year old that Jesus loves her so much, that He made her special so she can't talk. Lucky for me as we had this conversation the cat came and sat on her pillow and nudged her head, for this a small smile broke. So in this literally dark hour, as I sat by the bed with a sweet little girl, I am awe struck. That she does know the peace of the Lord, weather she knows it or not. Could it be, that God can work through fat kitty cats too? The picture is of the lovely Claire, on the way to the church building for the dedication.

I spoke too soon

I was feeling better, so I went ahead and gave myself my medicine just after the last post. Sure enough, I have been under the weather ever since. I think that I am starting to turn the corner and get a little more energy. Of coarse, another dose is due next Monday, oh well! So I am not having much energy for the blogging, here is a quick summary. Claire is doing great, there haven't been many recent pictures of her by herself because she always wants to be standing(hard to take a picture and catch at the same time). She is getting really good at finding her center and we are hopeful that she will take her first steps sometime soon (by soon I mean this year, Rett world moves very slowly) She has one more week of summer school and then a six week break. I am trying to get strong so we can have lots of fun during that time. Chloe is doing great! She went for her 2 month check and the doctor said she was "perfect" I agree. She too has the cold, which I just hate. Somehow she still manages to get out lots of smiles and coo's. That's all for now, we are off to PT, the fun continues...