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?

LPCH, where everyone's the same

Yesterday was a pretty routine day for us, with the exception of a little trip over the hill to LPCH for Claire to see the eye doctor. Jared decided to take the day off so that I would be spared from taking Chloe along to Claire's appointment. After dropping Claire off at school we started the day slowly with coffee and a walk down to pleasure point, to say that it was epic is indeed an understatement. As we walked and enjoyed the sound of the waves gently crashing we did the download on all that the day contained. I really wasn't that worried about the trip to the doctor. It was a routine appointment and the worst that would come of it would be glasses. Funny how even on a good day, with the sunshine on my face and my husband by my side to help, deep down in there was a little bit of fear. We have so many memories from LPCH. Most of them involve needles and Claire or some sort of doctor telling us how worried they were. As much as I tried to believe that today would be different, a little voice inside me quietly whispered, she still has Rett syndrome. With that I was able to soak in the beauty of our morning walk and knock off a few things on the to do list before it was time to get Claire and start on the day's journey. We didn't have much traffic and we actually got there on time, which in itself is a small miracle. After checking in it was time to do what everyone else in the busy waiting room was doing, wait. It is an interesting area due to the variety of doctors serviced by that area. The lab is there, so you can hear young kids screaming as the friendly vampires do their best to stick them with needles and suck their blood in the gentlest of ways. There were a few people in wheel chairs and lots of people with glasses as the clinics that were open today were the orthopedist and the optometrist. A sweet and healthy little boy that was standing in front of us turned to look at Claire and said with so much care in his tone, "Did you break both of your legs?" She smiled and I told them that they weren't broken and he smiled and walked away. One dad that was patiently waiting struck up a conversation with me, he was there with two of his kids. They are both in different stages of the scoliosis surgery process, his eldest child also has scoliosis but hasn't had the surgery, yet. Got me thinking, they looked like such a normal family, kids dressed in varsity gear from the local upitty Palo Alto high school, but none the less, they were sitting in the same waiting room that we were. There were also families that looked to be of far more humble means. As I said to the father that I was not in line and that he could go, his son translated for him. There were people from so many different backgrounds there, so many different medical challenges. Reminded me of how we are all the same, so vulnerable, so helpless when it comes to our children. Finally we were called back and Claire was her 85% of the time wonderful little self and did everything that the doctor required of her. When we got around to seeing THE doctor she was so excited to see Claire. She remembered us from 3 years ago (memorable in a good way I hope) and that she was so glad to see that Claire was doing so well. That is code for "we expected her regression to be much worse and for Rett to have taken a lot more" but at least she chose to put it politely. I am also very glad that Claire isn't doing worse as they all had expected. So we took our script for glasses, packed up all of our gear and piled into the Smart car. We paused under the big tree before driving home to marvel at the leaves, to put it all back into perspective, that we all have a lot, that God is bigger than us and that He loves us enough to make really great children's hospitals that everyone can afford and then we drove home.

Maybe I'm Dreaming

There is a big difference between being a dreamer and an idealist, and I am not a dreamer. I have a rather bizarre high standard that I attempt to hold myself to because I have this ideal image in my head of what I should strive for. I know that ultimately this is not a good trait and have been working on it for a while. But I think I was cheating. In an effort to not constantly be striving for perfection I just changed the ideal in my head, trying to convince myself that in some way that was better. All I did was change the ideal, not the constantly striving part. Along with all of the craziness of surviving for the last while I think I was too tired to even try to reach my somewhat lowered ideal of what I expect in life. I think (the jury is still out) that this is a good thing because it forced me to ultimately let go which felt like a huge load off my shoulders. And when I wasn't looking, I think I might have even had a moment that I dreamed. It is no secret that my life with Claire is often exhausting, both physically and emotionally. I was talking with Jared about how tired I am and discussing our options. One of them is that we could just let her stay home all the time and watch television and listen to audiobooks. That's when it came out of nowhere! I am not going to let her do that because I am going to dream that one day, while she is still with us, there will be treatment, a cure, something that will help. It would be difficult if all of the sudden her body was less restrictive and all that she was used to was getting to lay around and watch Martha Speaks. When my mom had just had her stroke and we were told that she had a few months I remember a family member telling me how she was praying for my mom. That God is a big God and that we can ask big things of Him. Somehow I felt selfish asking for my mom to be completely healed, I was happy to take making it to Claire's first birthday. But I prayed and I tried my hardest to make the biggest "god sized" request that I could. It is that very same concept that I am just trying to wrap my head around again. I know that just because I dream it and just because I pray and ask God doesn't mean that it will happen. It just feels so nice to be able to move forward through today with the hope and faith that it can happen.

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.

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.

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.

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.

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.

Back to life, our weekend

I know it is a bit delayed, but I have been meaning to blog about our fantastic weekend. We started the weekend with a pancake breakfast to celebrate the opening of the courtyard for The Abbey, the coffee shop at our church. I know that a lot of love went into planning and executing the courtyard and it came out amazing. It was so fun to see it unveiled in it's glory. I hope to be able to go and sit and soak it in sometime soon. Next Jared was off to get his first tattoo (kelp wrapping around his forearm). It was great fun to wait outside for him to come and show me his arm with the stencil. He has been thinking about this and imagining it for a while, it was great to see him so excited about how the art work came out. Since I had both girls asleep in the car and I was already on the West side, I took the opportunity to drive up Highway 1 a bit. It was such an amazing mix of Santa Cruz weird and God's amazing creation, which seems to be true of so much of my life. As I drove I first saw a distinguished woman walking with bright purple hair, then a guy in his 20's walking down the sidewalk on his hands, as I drove a bit further I was blown away by the field that grow right up to the edge of the ocean. All God's unique creation and I got to go slow and take it all in. Sunday also brought me amazing experiences. We were able to leave the house an hour before we needed to for church. So we headed down to get coffee and sit at the cliffs. Normally in June it is "gloom" in the mornings, but this day was an exception. It was finally warm enough to take Chloe out to sit and watch the surfers with her sister, something we have been wanting to do. Words cannot describe the awe I felt as I sat there with our girls, looking at the vast amazing ocean. God continues to blow me away with how He designs things. Both Chloe and Claire so uniquely perfect. After a few deep breaths and taking in a bit of sun, we were off to church. We so enjoy being a part of that community and this week was no different. The icing on the cake was the message given by Dan on encouragement, it was as if he was speaking right to my heart and just what I needed to hear. Since it was still beautiful out we decided that we couldn't go home and sit inside so we headed down to the Monterey Bay Aquarium. What a treat! We hadn't realized that it was world ocean day, but at the aquarium celebration was in full force. After lunch I sat with the girls and watched the otters play as we listened to a steal drum rendition of Bob Marley's "No Woman No Cry". Even in the middle of the chaos of the busy exhibit, it was the sweetest moment as Claire watched the otters and we sat and enjoyed it all. Chloe slept the whole time (which was nice) but her dad and sister got her a turtle to mark the event. As we drove home, I sat watching the strawberry fields and realized that we were back to life as normal. I thought it would never happen, but it did, and it is great!

Getting Ready

Finally, we have had a week that has been nice and even keel. Nothing terribly dramatic to report. On Tuesday I left to run a few errands and Kim stayed home with Claire. When I returned, the two had made a "present" for Chloe. Claire was just beaming with pride, it was so precious. She functioned as art director while Kim did the manual labor on the sign, but they are such a good team. It was so precious to see the excitement in Claire's face as I took in the gift that she made for her sister. We have been talking a lot about what being a big sister looks like and she is so excited to be in that role. I am expecting that it will be a very bumpy transition, but part of that seems so normal. Claire is turning into quite the 3 year old princess. She manipulates every situation that she can and when she can't she looses it to the point that we can't talk with her until after a time out. She is also becoming more and more fun by the day. Her sense of humor is great! She is so sly and sneaky and when she can get something by, she is so proud of herself. So with all this 3 year old personality stuff, we can only assume that there will be problems. Maybe problems isn't the right word, learning experiences. Irregardless, it will be a ride. We are so excited to meet our sweet little Chloe. Enjoying each day until then, but so excited to be able to meet her. I have heard it said that all any parent wants when their child is born is to make sure there are 10 fingers and 10 toes. I have to say that I don't think that is so accurate. I want an entire DNA stand that folds properly. I want her to have enough air to her brain and all the other organs. But I know that that isn't how God works. So as I get ready to go through this amazing process of the miracle of life, I am trying to focus on how God does work. He works through children who's DNA doesn't fold right, He works through flawed people all day long. It is possible, that somehow, He will even use me to teach Chloe about what an amazing God He is. That is the part that blows my mind. With as dynamic as life is, that I might be used is the most humbling and amazing concept. Enough of my rambling for tonight. Make sure to check back later in the day on Monday, we will be putting up pictures of Chloe as soon as we can. You can check the flickr page by clicking here, we might just post photos without blogging. Here is a picture from nap time on Wed. It was just too cute to keep to myself.

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.

Focus

That's right, when I go out I take four dates with me. Not really, we got to get out and go to the local Ducati Owners Club's bike night. The food was alright, the service was horribly slow, and the company was amusing. The sound of the older bikes as they went by made it all worth it. It is so easy to get frustrated when Jared works late another night. It was a good reminder to not take things too seriously. Yes, there is a lot of money involved and lots of other stuff, but in the end, it is the motorcycle business, it is cool. I am particularly happy with Ducati lately because of the love they have been showing to Claire and her friends with Rett Syndrome. I don't know if I can say at this time, but it is so nice that they want to do what they can to help. It is some much needed encouragement in this ugly time of IEP's and evaluations and all sorts of hoops and stuff. I cannot believe that it is so complex to have a three year old in preschool. I figure that in all, I communicate with almost 50 individuals for Claire and this Rett stuff. I am not counting her friends that she plays with, only business things like school, doctors and therapy. So I figure I have a bigger department than Jared and more on the line (if you value life more than $$$). So in theory, I should be more stressed than he is. Then it is like God hits me in the face with his truth. I need to be grateful for all of this, He made Claire like this, put her in these situations. Is is possible that in this big mess of preschool nonsense that God could be at work for a greater good, I suppose. I am trying very hard to take a new approach. To remember that with every interaction that I have, I am to love first. Before I am Claire's advocate, I am a sinner that was blessed by the mercy and grace of God. I know that I need to fight to get Claire in a good environment where she can learn and thrive. But I think that sometimes I start to limit God by thinking that I know what that is. How narrow minded of me. Funny, as I spent today focusing on how I can be quiet in this situation and listen for God to move, I was full of peace. It is so easy to loose focus each day of that. I guess that is why we go to bed every night with the challenge of waking up and making the decision each day, what will the focus be. Thank you to those of you that have been encouraging me through this walk. It has been such a blessing to have people whispering in my ear to stay focused.

Frameshift

I was recently saddened as I read the pain that a friend of mine was going through. She too has an amazing little girl with Rett. The day came for her to go to the DMV and get her disabled place card. She described it as a hard, tear filled experience. Her blog was filled with comments from other families that too have taken that difficult trip. It got me thinking. Why is it that we view disabled people the way that we do? I thought about my experiences growing up. Honestly, I can't think of any with disabled people. I imagine that is the way many people are raised. Because it is something that is so far removed and foreign, we begin to view it as something bad. If I had a dime for every time I have told somebody that Claire has Rett and they respond with some sort of devastating reaction. I wish so badly that that wouldn't be so. I am so convinced that God has already and will continue to do great things through Claire, using her even the way that she is. Having a child with Rett Syndrome is definitely not easy, it it very hard. But it seems that to compensate for the added degree of difficulty, it is so much richer. I never would have thought to ask for this, for the "disabled for life" club, but I have to say, it has the most amazing members. I am grateful for this "frameshift" it has enabled me to see the world differently, using more of a panoramic type lens.

The picture is from Saturday, Claire has really taken to playing the Wii with her dad, she can't get enough!

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.

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.

Still here

I am sorry for not posting for so long. The last few weeks have been trying times for me. I have had to focus on Claire and spending every moment on structuring our world for her success. It has been very rewarding. Since I last posted, Claire has pulled to stand off of a stool, with only the help of secured hands, once she places them. That is so huge, also her standing balance has improved greatly. These two things are very important pieces two walking, something that I pray that I see her do. This week Claire has started to use her left hand to make choices and hit her swithces, something that I never would have thought to work on or ask for, she just started. It is so amazing to me how fearfully we are designed and the things that we are capable of. On the more overwhelming side of life is our battle with the schools. Claire turned 3 October 24th. In the special needs world, that is a pretty big deal. She aged out of her 5 therapist that we worked 9 hours a week with. We got two new ones that we work with between 2 and 3 hours a week, but it was a shock. The way it is supposed to work is that Claire starts school when she is 3, something that she is looking forward to. Unfortunately the school district is afraid of her, they don't understand her. As a result, they have chosen to take the lower road and through little diligence on their part, we still have yet to meet for an IEP. The IEP is the plan for having Claire in an education environment. Currently the meeting is set for Monday and I am trying to stay focused until then. Otherwise, life is going amazing well up here. We are still enjoying the bounty of the harvest and all of the fun things that food brings. We have enjoyed many meals with good friends who are walking with us during this trying period in life. Now that it is Novemeber I am starting to look forward to the holidays. This will be our first year celebrating Hanukkah and I look forward to teaching Claire about it. So there is the update, now I feel like I can start blogging again. The picture is from Claire's birthday, but she wore the same thing for Halloween.

Having fun in AZ

We have been here a few days now, long enough for the dust to settle, and we are having a great time. It is such a blessing to see Claire and her acomplishments through the eyes of my friends. Today we had the pleasure of spending some good play time with my friend Kathleen and her two boys. Kathleen was so excited to see Claire in her walker chasing the two boys around the living room. She might not be fast, but she is smart and we had a great time with it. It is so easy to forget how far we've come when you look at all of the things that you are working on in that moment, last time we were playing together Claire was struggling to stand and watch the boys play, she has come so far! Next we went to the park and Claire turned herself into a sand castle while the boys monkey climbed all over the place. It gives her such peace when she gets to play side by side with other little ones. It is such a good remeinder of the perfect little girl that she is and that she is "typical" in so many ways. I have also found myself thinking about how perfect God is that He would create her this way so that I can learn these lessons from her. I am so humbled that He would give me this incredible gift and everything that I need to take care of her. Now that there is a picture, Sam in the stripes is 5 weeks older than Claire and his brother Gary is a year older. The question is, are they giants, or is Claire a minature?

Trying to make sense of it all

If this post makes any sense to you, you are most likely crazy like I am. With that said, let me set the backdrop. Claire and I have been going to Music Together once a week for over a year. At the start of every class we sing the same song and pat our hands on our legs to the rhythm. Claire's little tiny gene mutation for some reason causes her to have a lot less use of her hands than the other children. Today the teacher asked who knew what song we would start with. Before any child could shout out, Claire quietly tapped her hand on my leg three times, to the rhythm of the Hello Song. She knew, she just can't tell us. During the songs she had fun and laughed and played until the egg shaking song. My heart breaks as she sits there and looks at everyone else and gets sad. I pick her up and dance in an attempt to distract her from the disappointment of not being able to shake her egg. At the end we sit in the circle for the Goodbye Song and again, she quietly tapped her hand on my leg, hitting about every 12th beat. My heart broke and I tried to fight the tears. I can't believe the strength of my two year old. I don't think that it has ever occurred to her that not trying is an option, and she has to fight so hard for each small thing. It blows my mind how much she and I live in such a different world than a lot of the other mommies and children. I try very hard to try and maintain a typical life, but why? Because a typical life is better? This forces me to wrestle with so many issues. I struggle from feeling isolated from the world that we live in. When I stop and take inventory I do feel that the world that Claire and I live in is much richer and I wouldn't want to be anywhere else. I guess that like anything else balancing between two things is harder than the comfort of either extreme. This is something that was just talked about at our church. Perhaps it's easier to be a liberal or conservative and swing all of the way in one direction. But that is not the example that Jesus set for us. I guess I am doomed to a life of finding balance, but given the circumstances, maybe that isn't the worst thing.