Christmas 2010

Over the last few weeks there have been a lot of posts out there about what people have been doing to celebrate the holidays, how the holidays are hard and how cute their kids are in special holiday attire. So the holiday celebrating was supposed to start Dec. 1. For the second year in a row, I forgot to get candles for the Menorah so the Festival of Lights was off to a weak start, really I think 2011 will be my year, it is later in the month, which I am sure will help. We did however manage to pull off a few successes in the weeks leading up to Christmas. We took the girls out to look at the lights in Vasona park and they really liked it. Considering that the last time we did it Claire was screaming in the entire way through, followed by vomiting , which explained the screaming, this was a huge success.

We also put up a tree and had the sense to buy a fake one that was pre lit, so it even had lights. We only got four ornaments on it, I figure I need to leave something to improve on for next year. There was also a very successful trip to the Christmas party for where Claire rides horses. She was very excited to see Santa and as it turns out, Chloe was not. On the bright side there was a firetruck for her to play in so there wasn't too much crying.
Beyond that, we really didn't do much during the advent season. With that said, it has been a huge improvement from the last three years, so I am pretty excited about it. The thing that really made this year stand out over last year was that we got to be with family. Last year was a bit depressing doing Christmas just the four of us, Jared and I were the only two who could speak. Claire was hating life without her talker as we had just returned it from the trial and Chloe was more of a danger to herself because she could get into things but didn't have the understanding of what she was doing or consequences so she was a handful. What a difference a year has made! Claire has really started to be able to better express herself with her talker and Chloe has grown by leaps and bounds. Instead of sticking her hand in the fire she can now stop and say 'no that's hot no no no' which really helps, A LOT. We drove down to San Luis Obispo and met up with my parents and my brother. We took a boat ride on an electric boat in Moro Bay, Claire has always loved going on boats. This was Chloe's first trip and she wanted to get off and tried repeatedly to jump into the water, by the end of the trip she settled on steering.
Sometime after our boat ride Claire started having some extra weird neurological activity and that sorta put a damper on the cheer level for Jared and I. We tried and to just push through and enjoy the time with family and it was nice. It was the most fun we've had opening presents (my rett friends out there know just how horrible this activity is) since Claire was 1. I am guessing that night we just didn't get enough sleep or the month of advent caught up to us. But Christmas Day wasn't the smoothest of rides, although rather eventful. During the chaos of trying to keep both girls happy at the breakfast table,
Jared put the crayons in Claire's juice, which was a lot funnier than it was frustrating, only because he immediately labeled it a Captain Awesome moment. It was pouring rain outside so we had to stay in. Chloe made friends with many people as she went up and down the stairs and up and down the stairs. Claire fell asleep by the fire as I sat and cried, mourning all of the things that rett has taken from us, struggling to be thankful that at least she is doing well and still with us, thinking of the two families that had lost girls recently. We wrapped up the holiday with a family picnic in my brother's room. The only place in town was a taco shack and so that is what we had for dinner. It felt reminiscent of A Christmas Story and a small part of me wanted to break out into Deck the Halls with the ra-ra-ra from the movie, but I was too tired. We drove home that night, a little early. As we laid the girls down and got settled back in, it is good to be home, I am thankful for a lot and I am so happy that the holidays are over! Now onto fixing Rett syndrome in 2011, who's with me????

My Little Slice of Joy this Season

It might not look like that exciting of a picture, just some dirty dishes, but to me, they are so much more! With the background that I have in pastry, I love the candy cane and gingerbread Christmas themed stuff, for several years I had the honor of assisting on gingerbread works of art at the Westin and I am forever changed. In my soul I wish I was in the Midwest snowed in a baking cookies and other such holiday traditions that are cultural like that. So a few years ago, when I saw this set of mugs and dessert plates with joy on them, I decided it was something that I had to have. They have been very safe in my cupboard, although they have been lonely. Since getting them in 2008 I had yet to use them. Tonight was the night that that changed and it was wonderful! Not only did I get to use my plates and mugs, I got to cook for friends, which is one of my favorite things to do in the whole world. Erica and Maren came over for our advent conspiracy type craft night. I really didn't do much, I was more in a management role really. I had hands available to hold a tight knot or take excess trash away. Erica was the mastermind behind it all, doesn't she look crafty!
Maren, well, she gave a good effort, you can see that she had a few challenges. I kid, Maren is the craftiest of the crafties. She just happened to have a little bag of hair clips and earrings that she had made (who makes jewelry more or less wear it???) and left the cutest pair of little purple flower earrings that I think a certain 5 year old will be pretty happy about in the morning. Anyway, back to our night. I could go on and on about how we laughed, made a mess and sent Jared to the grocery store. It is a good story and I suspect pieces of it might end up out in the blogoshpere from my partners in crime. But for me, I just liked having friends over, a lot. I have been really blessed to get to have two moms like this close enough that they can come over, even if it is a two hour drive.

The Irony of Christmas

Today was one of those days, you know, those days that you feel too close to loosing the will. It wasn't anything too big, a few crazy teething poop diaper blow outs, an ant hill that ended up in Chloe's hair along with Claire's frustration with my inability to read her mind resulting in several bouts of sad/angry screaming. Then it was dinner time. Jared went to pour Chloe a cup of milk when I noticed that the milk was almost gone and we wouldn't get more until Thursday, wait Thursday, we pick up the veggies and milk on Thursday, today is Friday, nobody got the milk and veggies yesterday, it was this realization that pretty much threw me over the edge. So I did the only thing I had energy for, I locked myself in my room and went to facebook. Something so oddly numbing about that site, comforting and isolating all at once, it seemed an appropriate place for my pity party. I chatted with two of my rett mom friends (btw, so thankful for you guys, chatting helps, I do feel better). One of them said something interesting, about it being that hard time of the year. Her daughter is younger than Claire and this will be her first Christmas with the Rett syndrome diagnosis. Funny how holidays in general aren't easy. Add a kid who can't use their body and they get a lot harder. It got me thinking about the O'Rourke family, who laid their precious little Aidan to rest today. I hate that Rett syndrome takes children, I hate even more that it can happen during any period of time that is "supposed" to a time of joy and celebration. It is so hard to get excited about Santa at the mall and baking cookies when pain like this is so close to you. I know that none of that really has anything to do with Christmas and the birth of Christ, but it has become culturally accepted that that is what we do to celebrate. Tonight I am stuck on this great irony, that as we all slow down to celebrate the birth of the Christ child, a messenger of peace, that it is such a painful time for so many who have experienced loss. Ultimately, it is the peace that I have from the grace I have in Christ that gets me to keep putting one foot in front of the other on these hard days. I guess I just don't like that the way we go about celebrating so often excludes our girls because of their disability. I would love to hear what others out there is blogoshpere think, do you find it hard to celebrate, how do you do it?

Happy Holidays!

I honestly didn't think it would be possible, but we had a great Thanksgiving. Even better than that, we had a great Thanksgiving weekend. I knew that we were going in the right direction when Wednesday started well and before things got out of control, Jared called saying that he was on his way home. I got the pleasure of leisurely shopping all by myself for those last few things I had forgotten. One of the great things about living in hippieville is that they all grow their own organic feast so they weren't all in Costco, it was creepy how few people were out, but it was good. Since I was relaxed and had time to do whatever I wanted, I went to Whole Foods to get some cheese and olives so we could have a nice antipasti for dinner. Much to my delight, while I was there they announced that the fisherman had just caught a bunch of crab that morning and he was there selling them, already cracked and cleaned. How could I not? It was such a great end to a day, just a Wednesday, but none the less a day that we decided to celebrate. I think that part of why I have such a hard time with holidays is because it sometimes feels forced. Be thankful NOW give gifts to people NOW and the only reason why we do it on that day is because everyone else is. Of coarse it is fun to do what everyone else is doing but sometimes you just don't feel like it. With the history of Thanksgiving day being as sad as it has been, it felt so good to genuinely celebrate the day before it. It just felt good to genuinely feel, something that is really hard to do when you are as tired as I am. So with the momentum of our crab feast and two happy little girls we went into...dundundun...the holiday, and it was good. I got to cook all morning at a casual pace while Jared watched the Macy's parade (which makes my skin crawl) with the girls, it felt like a pretty normal family, weird right? We went to a friends where we deep fried a turkey, which is awesome, vasts of hot oil make everything better, Chloe played with Luke and Claire fell asleep watching football after showing off her super awesome standing skills. We went home super full and it was good. Friday stated a little slow, we didn't know what to do and somehow we ended up going shopping. You didn't think I was going to say THAT did you? Claire and I hit the Carter's store for a bunch of super comfy clothes for both of the girls, we even got matching holiday pj's (see flickr to right). Feeling the exhilaration of having completely lost my mind, we went to the BIG mall. I have a special place in my heart for The Body Shop. Jared loves me so much that he dropped me off and fed Claire lunch while I went in there all by myself! The smell of that place takes me back to my senior year, back when I could take 4 bathes a day if I wanted. I did the unthinkable, I purchased 4 things and they were all for me. I have made an early resolution starting today, I will take a bath or a long enjoyable shower at least once a day. That's right, I am going to take 20 minutes every day just for me, I am so excited! I am completely amused that it took black Friday to get me to go out and do something like this for myself, God does have a good sense of humor. The weekend was great as well, I enjoyed a bath, Claire and I went to see Tangled and we purchased our first Christmas tree in the last 10 years. We also went out after bedtime to look at the lights in the park and watched some football. I am so content and relaxed and ready to soak in the advent season as well as the festival of lights. Sitting back today reveling in it, knowing that it might be another 5 or 10 years before we get this again, so I will bask in the glow of a holiday gone well for as long as I can. To those of you in that special place in my heart, the ones with daughters younger than Claire, please have hope, there is life after Rett Syndrome, it is different, but it can be good, the potential is still there!

Down and Up and All Around

I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!

Thankfulness Gifts 2010

I love gifts, I really love giving gifts. I think it might be because of how I grew up, my mom was really good at picking out gifts that made you feel like she really knew you. She always managed to pick things out that I had not even thought of, but were just what I needed. I am still working on honing this skill and it is hard when time is restricted by the two little girls that require much from me. This year I opted to do thankfulness gifts for all of Claire's entourage instead of something at the holidays. I chose to do this because I don't get why I would give people a gift for a religous holiday when I have no idea if the people that I am giving to celebrate the same holiday. I also want to make it clear why we are giving the gifts, because we are thankful for them, as opposed to some sort of guilt induced commercial hype that motivated me. So this was our week and it was great! We gave jars of raspberries in a light honey syrup that we had made during the summer break. Truly, the best part about giving is seeing the receivers eyes light up and a smile come across their face. I didn't get to see everyone as Claire distributed them around during school, but I am pretty confidenet that she really enjoyed seeing those faces herself. Now with all of the gift giving done, I am free to savor Thanksgiving and the advent season, and I am really excited about it.

Thanksgiving and stuff

As I sit and write I can't believe that in a week Thanksgiving Day will already be done and over. I have so enjoyed this fall so far. Yesterday I had a lot of driving to do but it was so beautiful the time just flew. It was gray out and it made the yellows and reds on the trees pop, truly spectacular. I have enjoyed different people posting about what they are thankful for and the anticipation of the Christmas season. Got me thinking about what I would say if somebody were to ask me what I am thankful for. Honestly, my mind and my heart really took off on this one and I am going to try to sort it out here. According to Wikipedia "Thanksgiving was a holiday to express thankfulness, gratitude, and appreciation to God, family and friends for which all have been blessed of material possessions and relationships." Maybe it is just me twisting things in my head, but the premise of this is that we are choosing to give thanks because God 'did' because we 'have'. As I prepare to cook the stuffing and the pies I have really been thankful not just to God, but for Him. I am thankful for my friends and family and all of the things that I have been blessed with. But I don't want to be thankful just because I have all of that. I am choosing to be thankful because I am grateful that God loves me. As dark as it sounds, just that He loves me doesn't mean that it will always be bountiful and easy, and I don't want to feel that I am only thankful because it is so good right now. Which brings me to the rant part of this post, how on Earth did we get to the place that we celebrate being thankful by waking up at 4am to go shopping for stuff we don't need?!?!?!? It would seem to me that thankful and content would go hand in hand, but alas, I am wrong. We want more and we want to pay less for it! I am so frustrated by my country's willing participation in this marketing frenzy that ends every year in people spending money that they don't have on stuff that they don't need. That doesn't sound very thankful to me. It also strikes me as odd that we would choose to celebrate being thankful just one day a year, that is all the time that we can take for that? I am really excited that this year our little family will be celebrating The Festival of Lights (Hanukkah). It seems to me that 8 days is a much more reasonable time to celebrate God and our thankfulness. We will still celebrate Christmas and the advent season as well, I don't think we should have to choose, so we are doing both! So there it is, I am very thankful for the many blessings that I have, yet without any of it I would still be sitting here in awe, that God would love me, as broken as I am.

Ah, November at last!

Don't get me wrong, October was a lot of fun. It was just a lot! My poor little brain is still pretty sore from just how much was in October. It was mostly highs, with a few lows, it was just a lot. I am so glad that November has come, Thanksgiving has always been my favorite holiday and I find the transition at the end of fall to be remarkable. The last three Thanksgivings have been the exception. The last meal that Claire fed herself was Thanksgiving 2007. Ever since then, I have had a hard time even thinking about it. But Claire is doing so well right now, after the huge success of the birthday and our first year of trick or treating, I am thinking that we are on a role. It also helps that Chloe is coming into her own, for lack of a better way to say it. She has given good balance to our family. Chloe has also taken me to new levels of exhaustion as I struggle to balance making everything super accessible for Claire and out of reach for Chloe (certainly a battle I will forever loose). As the wind dies down and I attempt to savor the season and all of the wonderful that my life is, it is hard. I don't mean that it is hard to savor, I mean that life is hard. I am wrestling with the concept of living in a storm forever. Of coarse there are good days and bad days. But the good days aren't easy, we just smile and laugh more. So the question swirls in my head, how do I live in a storm. I have heard "Life's not about waiting for the storm to pass, it's about learning to dance in the rain." and I hate that phrase. It is cute and if it gives relief in a hard moment then great, honestly I love rain, the thought of dancing in rain makes me very happy. But storms are hard. Feeding Claire for at least 90 minutes a day is hard. Balancing everything that it takes to keep Rett Syndrome from eating her alive is hard. Trying to be something more than a caregiver is hard. I think I am getting to a good place where hard isn't bad, it is just hard. My hope is that I can take that, and enjoy the beauty of my storm. Much like the monsoons that I grew up with. There was awe inspiring lightening that would fill the sky. Water would blow so hard it would go under the doors, trees would blow over, cactus would be uprooted. It was such a demonstration of beauty and power. It was great to take in, but putting the yard back together was sure a chore. Replacing roof tiles, getting the furniture out of the pool and so on. I see the next few months as a bit of a monsoon for us. It comes around the same time every year, is fairly predictable, there is always wind and lightening and a terrible mess. That is what my life feels like on Rett Syndrome, a monsoon. However, I have learned that if it starts to hail, I will not put on my swim suit and go dance in it. Yes, when you live in Arizona weather really is that exciting, and I was young, but I learned my lesson.

October 24th

For the last 4 years I have hated October 24th. 2006 I was traveling home very ill after doing the Nike 1/2 marathon for my mom, who I thought was dying (Oct. 24 is also her b-day). 2007 we had just gotten the diagnosis. 2008 we were just starting school and in iep hell and a huge legal battle 2009 Chloe had started to shove in my face just how not typical her sister was. Aside from the 1st birthday, which I was required by grandparents to, I haven't done a real cake for Claire. It has been a friend or a small dinner party, but nothing really for Claire. 2010 was our year and I am hoping that this is just the start of the birthday celebration that just gets better every year! It was more of a long birthday weekend than a "day". It started after horse therapy on Friday. Our ABA conveniently canceled so we got to go to lunch with my parents who had just flown in and my cousin who was in town for hockey. We ate at The Counter and Claire got a milk shake and french fries (can you tell we are trying to fatten her up?) this was huge considering she typically gets organic whole grain pasta with grass fed ground beef, kale, eggplant, peppers and tomatoes. Saturday morning we did our usual trip to Verve for coffee, but Claire got a special treat, a whole cup of whipped cream sprinkled with chocolate shaving. Then we were off to the mall for shopping with Nana and ear piercing! A few weeks ago Claire announced "My birthday is October 24th presents earrings" how could I not give positive reinforcement to such wonderful and clear communication! We had a lot of fun shopping, she is very good at picking out clothes. Later Saturday we chose to open presents and then watch a movie before bed. Sunday was the actual birthday. We slept in a bit, played wii bowling and went out to breakfast all bundled up for the rain. I don't know why I am so consistently shocked, but Claire does so well eating out. She had a quesadilla with peppers, onions, mushrooms and some other stuff that looked really good, and she ate it up fast! A little later we did "the cake" which was a pretty big deal. Not only did she get a real cake, we hooked up a switch to the fan so that she could blow out the candles. So we ended up singing close to 5 times, just so she could keep blowing the candles out, it was such fun! For the final birthday feet, Claire took in a tray of gluten free cupcakes dripping in purple and yellow sugar crystals, the closest thing to glitter that I could find. Her class had a huge party for her and even gave her a present of a little toy cat to hold on her lap (it is super creepy but she loves it!) and some hair clips. All in all, I think that 2010 will go down in the books as a huge success!

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.

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.

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.

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.

The Good Life

Again, I must begin with apologies. I have been a bad blogger. It has been over a month since my last post. The best excuse that I have to offer is that Disneyland got into our system and we have been busy enjoying life. I have been really trying to spend as little time as possible at the computer, there are just so many better things to do. Like take walks along the cliffs, get iced tea at The Verve, take a nap on the couch, giggle with Claire, bowl with Jared on the Wii, the list goes on, but I think you see where I am going with this. I am not trying to brag about my charmed life, I assure you that we have bumps, lots of them. Lately I have had the ability to really thank God for everything in my life as a blessing. Tonight I found myself saying to Claire, "How is it that you are so happy, shouldn't that be a crime." Made me think. I really do believe that God wants us to abundantly enjoy life, and with Claire leading us, we are. It has been really amazing to see her continue to come into her own in the last few weeks. We are finally getting things with her schools ironed out and we have been able to prioritize. The amazing thing about Claire is that we could work on everything. She tries so hard and if we take the time to teach her, she is a little sponge. The problem is that she is three and there are twenty four hours in a day. Recently we have moved fun up on the scale. I am so glad we did. It is amazing how less tiring it all seems, when you stop to have fun. I had a birthday in March and I got the Fit for our Wii. Everyone should know that watching my husband and neighbor hoola hoop and attempt yoga is a wonderful source of fun.
For the more humbling portion of my life, it started with a trip to Lucile Packard Children's Hospital. We had a 9 am appointment with genetics. By the grace of God I had left early and we weren't in a hurry. Since I was not in a hurry, when traffic came to a halt on the freeway, I stayed in the slowest lane. Unfortunately there was another driver who was in a hurry, and she almost missed me. She did manage to rip the wheel off my truck, push me into another car and spin in front of us and get hit again. Claire and I were fine, after many long hours of watching, it was determined that Chloe also seems to be fine. For being fine, I am amazed at how sore I got. It really forced me to rely on others to make it through the week. I am grateful that we have Jen, Kim and Jess who help with Claire and around our home. It has been a humbling experience having to get so much help, but it has been good. You don't realize how much you take for granted being able to stand up and get a glass of water whenever you feel like it. So I have learned lots of lessons from the "accident". First, don't be in a hurry, you are more likely to plow into somebody and get hurt. Second, it is alright to take help, you never know who will end up blessed by it.
So that is the update on what we have been up to, having fun and recovering. We are planning on welcoming Chloe into the world on May4th, unless she has other plans and we are very excited (understatement ofthe year). Claire can't wait to be a big sister and Jared is dying to get to hold her. I just want to watch her sleep. Since learning about genetics through Claire, the concept that anybody is born really trips me out. The other thing that we are currently dealing with is the recent diagnosis of Jared's mother. She has not been well and was just told that she has plasma cell leukemia. Yet another oppertunity for God to show us who He is and for us to rely on Him throughout every second of the day. Please keep her and the family and doctors in your prayers. For those of you that are reading this in AZ, it does mean that we will be back sometime in May, so watch out for us. For those of you that knew me when I did the Nike half marathon for the Leukemia & Lymphoma Society, watch out for that, I plan to train with the team again, only in Linda's honor this time. Here is one last picture of Claire, just because she is so darn cute. I hope that you all have an amazing Easter and celebrate all of the amazing gifts that were given to us through this life, death and resurrection.

We went with the less traditional Christmas this year. Christmas Eve we spent with our neighbors sharing a lovely meal. Afterward the children played and we finished with a birthday cake for Jesus. Once the sugar wore off and they were asleep we had some much needed adult time, complete with carols by the lights from the tree, while the boys had some Hennessy (Jared's contribution to the post). Christmas morning we laid low and called our family. Then it was off to the hospital to hang out with our friends Dani and Bobby. How we had such a nice time sitting in a hospital room for several hours I don't know, but we sure did. It was such a blessing to see how Claire uses her powers of cuteness to encourage people. She has such an amazing story to tell, and she tells it well. We returned home and the little thing was exhausted and slept. She woke up so happy and pleasant. We walked to the table to dinner and we were amazed at how well she did. We thought that we would push our luck and try on our way to brush teeth afterwards. This time we were a little more prepared and used our nifty new "flip" camera, complements of DNA :-) So here, we share our Christmas gift with you. There isn't anything that I could think to ask for that would be better than seeing Claire make progress toward walking independently.

The best gift

I don't know about most three year old children, but I hear stories of what they do. With the way she works, Claire is not able to go sit at the table and draw me a picture and call it a gift. She does however do the most amazing things that I would never think to ask for. The other night I decided that I needed to check the warmth of her new down comforter, to make sure she does not get too cold at night. She was just waking from her nap and it was starting to get dark, so we plugged the Christmas lights in and looked at the trees outside. Of coarse, the big fat cat jumped up to join us, she can't not be the center of attention. As we lay there, Claire laughing at the cat, her hands were so quiet. She rolled on her side to look closely at the cat, and had the most serene smile. We had a quick discussion and decided that I would help her to pet Athena. As we pet the cat the most amazing thing happened, her arms and hands flowed like water. Often when giving Claire a map like this, her body often stiffens or resists. But is was so fluid, her little fingers would run through the cats soft hair and she just smiled. This went on for about 25 minutes, then Daddy came home and the cat jumped off the bed to guard the door. This meant so much to me, especially during this "holiday" time. We have had to make a focus for walking right now, which means not working a lot on Claire's fine motor skills. Of the challenges that she has, her hands are by far the biggest at this point. As we laid there and cuddled, it was like she was reminding me to not give up. I always have hope, knowing that God has a perfect plan for her. But I have also accepted that she will not do some things that others do. It was the greatest gift that I could ask for, her reminding me in her quiet way, that there is more to work on, that she can do it.

Left hand???

Typically, Claire has her most success with the right hand. Recently she sat down to watch Elmo's Christmas Countdown, a video that I have now seen at least 20 times too many. Athena the cat had been sitting in the chair and was not interested in getting out, so Claire joined her. The cat was shoved to her left side. As she sat there and watched the show, I could not believe what I saw. Claire was sitting, watching Elmo and using her left hand to pull the cats hair out. To make it more amazing, the cat just sat there and took it. It really amazes me how Claire will do things that we never would think to ask of her, when we give her the time. So we continue to go slow, take it moment by moment and treasure what we can.

Sweetness

I know that her eyes aren't open, but seriously, that smile says it all. We had a good bit of fun last night. The little bear truly enjoys wearing different hats and being a big ball of silliness, which we absolutely embrace. I have been thinking a lot lately, part of the process I guess. We have had the"diagnosis" for over a year now, and still I wrestle with what it is and what to do with it on a daily basis. Recently I have found myself so grateful for the whole thing. The month of December seems to be such busyness for so many people, who work very hard to make sure that they have that memorable holiday. We have kept it pretty simple. A string of lights around the window, a small tree and a Menorah on a small table. I haven't gone shopping or purchased any presents yet, and I don't intend to. I have been enjoying hours spent in the kitchen making apple butter and other canned goods. Each day I have had the opportunity to enjoy so many moments, and I have. Taking time to listen to a stranger over a cup of coffee or not being the car rushing in traffic, the whole of it has been very enjoyable. It makes me so grateful for how I have gotten to know God in a very different way as a result of the messiness that has resulted from Rett Syndrome. I think that through it I am able to see so much else, not just being able to celebrate the 10 seconds of standing that Claire surprised me with or being pateint with her during meal time. But also being able to see the smaller victories that happen all around me and being able to see the charachter of God in them. It has left me on so many occasion thinking to myself, sweet.

Frailty

It has been since Christmas 2005 since I have been able to say that I have had a really nice holiday. New Years Eve, 2005 my mom was in the hospital recovering from a series of small strokes. By the time Easter came in 2006 she had had her "big" stroke and had been told that with her new diagnosis of Amyloidosis, we shouldn't expect more than 6 months with her. Several holidays have come and gone since then, and she is well. It was a year after the stroke and she seemed to be doing better and we were able to move back to California. It was at this same time that we came to realize that there was something different and special about Claire. It wasn't until Oct. of 2007 that we got the diagnosis for Claire, that she had Rett Syndrome. It is very interesting to go through life with two of the people closest to you on the National Organization of Rare Disorders list. It makes me think about the whole Christmas thing so differently. Is it fantastic that God sent his Son to save the world, absolutely. But I have such a different and deeper appreciation for who God is, based on how he did it. The human form is so frail. We are creatures of such complex design. With all the DNA that makes up our body, so much can so easily go wrong. To me, the miracle is not just that Jesus was born a virgin, but that he walked and talked and led a normal life. I am so grateful to get to take the month preceding the celebration of the birth to contemplate how amazing God is, that He loved us enough to send a Savior, and that He is awesome enough to do it like He did.