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...

Not going far

In case you are wondering why it was so long between posts, I was off traveling. Last weekend Chloe and I took a quick trip to Arizona. I was there barely 24 hours before I had a fever of 102.2 I spent the next 24 hours trying to break the fever so that I could get on the plane. I flew home with the help of lots of over the counter drugs and a sturdy set of hands to catch us on the ground. Jared has done such an amazing job of taking care of the girls at night so I can try to rest and heal. I got strep throat and a nasty cold, so it has been several days of getting better. Today I am feeling better so we journeyed down to the cliffs for our Sat. morning get coffee and watch surfers routine. I sat on a bench feeding Chloe a bottle while Jared and Claire went and practiced standing in the sand. I got to thinking how much better I like not feeling sick. It also occurred to me that we live in a really amazing spot. So it has been decided that I am not traveling anywhere by plane for a while, thanks to my Crones and the awesome immune suppressing drugs I take for it, I just can't handle it. So I invite you all to come and visit us, we have lots of fun stuff in the area and the girls are a pretty good time.

My little Engine that did

It is a quiet afternoon at home today. I am alone with the girls while Jared is getting his arm finished (pictures to come :-) I was working on getting Chloe down while Claire had just gotten up. She was sitting on the couch when I had to go check on her little sister. While I was in the other room, Claire had started to lean to the right and was now leaning on her arm. This is significant for many reasons. Lately she has been leaning to the left a bit and we were starting to worry. Also, she has been working with our awesome OT Kaya on going up and down with graded muscle control in several different positions. It is so neat to see that Claire is translating it and using it in different situations with no prompt. As Claire was leaning on her right arm I asked her if she was trying to get down, she looked up at me with a big grin, so I took that as a yes. I told her that I knew she could do it and that if she wanted help she would have to ask. So I sat there watching as she worked her one leg over the other and finally got down onto her tummy. At that point I realized that she was going to do this and I started looking for the camera. Good thing we have the little flip around, so handy! She took her time (this was actually pretty fast by her standards) less than 5 minutes! Eventually she got down and she went down to her knees, something that we never taught her, she figured that one on her own. After she got down she crawled right over to the Little Engine That Could book that was on the floor a few feet away and gestured for me to read it. As if I could actually read through the tears (of joy) but I managed. When we got to the part about the little blue engine saying, "I think I can" to get up the mountain, I asked Claire if that is what she was saying to herself as she wiggled down. The squeal that she let out was too much, as if to say, of coarse that is what I was thinking! I am so proud of my little monkey. Again I sit here and learn so much from her. I am feeling a bit overwhelmed by thirty seven E.O.B's that came in the mail last week and trying to reconcile accounts with five different medical providers. God has given me so much and certainly the resources to get through all of the paperwork, the laundry and other odds and ends that I find filling up my days. From Claire I am reminded that I can do it, that there is no rush, that I should enjoy the process. It is from Psalm 46 that I am reminded of who God is. The earth giving way, the mountains moving into the sea and waters that roar and foam is about what it feels like having a child with Rett. I hope that you enjoy the video clip and rejoice in this small victory for Claire with us!

Words Can't Descibe

So much going on these days, I can't possibly type it all out. Here are a few pictures of our life recently. Overall, life is good, but we are staying on the move and when we aren't we are trying to sleep. Last Friday Claire graduated from her class at school, Sat. we got to spend time with good friends at a picnic for Rett families and the rest of the time we have just been having misc. fun with Chloe. Sat. Chloe and I are off to AZ for a little fun in the sun. So if I don't post for a while, it is because I am recovering from the trip.

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!

4 Weeks???

How can it be? Chloe is now 4 weeks old and I have no idea where the time has gone. It is so amazing to see her grow already. She has developed a little roll on each of her legs. I have heard that babies get cute little rolls of fat, but I have never had the joy of this discovery until this week. Claire struggled to get into the 1 percentile for the first 6 months, thus no fat rolls. Tomorrow is a weight check for Chloe and if the little rolls of fat on her legs are an indicator, I think it is going to go well. The doctor was a little concerned that she wasn't gaining at the rate they would like, but she is gaining, so we aren't concerned. Sad really how much it takes to get a doctor to scare us. We are using a new pediatrician that is closer to home for Chloe. When the doctor told us that she had only gained half of what they would like our response was alright, when do we come back to check in. She said she couldn't believe how calm we were and how well we took it. Funny how good we have gotten at taking news. Still, the weight stuff did bring some stress. I have come to the realization that I have to let go of yet another thing. It is good that I have God to trust with both our girls, but it is hard to keep letting go and trusting in the Lord with every aspect of their lives. Why I am not sure, because He seems to do such a better job than I. So down the road we continue, learning with each step of the way. I just wish I could figure a way to learn without making so many mistakes, but that is why I call it the organic experience, youjust never know what will come :-)

Little Miss Two Face

Today we got a call from Katie, Claire's teacher. She was very concerned because Claire didn't feel well and was tired. She hadn't been eating and was screaming and biting herself for about 20 minutes. I know that Claire has been on antibiotics for a week and those can make you feel not well. But I didn't think that Claire was that badly off. She stuck out the last hour and was tolerating life at school when I went to pick her up. We came home and had lunch and she turned into the giggle monster. I am at a loss for what to do. I've been told by some that she could very well be mentally retarded, it is just to hard to tell. Here she is completely manipulating her school and her parents, just because she can. I don't think I have ever seen her so happy and talkative after school as she has been today, the irony. Good thing we have a flip camera, here is a clip of Claire at lunch, just as she was getting warmed up with the laughing and silliness.

Mona Lisa

The day started out typical for a Sunday. We over slept because we didn't sleep much during the night. We left the house 15 minutes late and discussed it (with much tension) most of the way to church. We got Claire to her classroom and found some seats in the back of the sanctuary. Chloe had finally gotten to sleep and we were excited to listen to Josh Fox speak. Then somebody walked by and kicked Chloe's seat, enter screaming baby. We couldn't get her calmed down, so we opted to leave early and try not to ruin the sermon for everyone else. By the time that Jared got Claire to the car I had Chloe calmed down a bit so we planned to go the long way home and drive by the cliffs. Of coarse Chloe fired back up and we had to pull over twice, she did eventually nod off. After she was asleep and Jared and I had begun to use kinder words with each other we looked back at Claire. She sat there grinning, we call it her Mona Lisa smile. We tried to guess what she thought was funny, if she liked it that Chloe stopped crying, if it was the dogs that we drove by. It is any body's guess, but it is so beautiful. As we tried to get it out of her she just kept grinning, as to say, I'm not going to tell you, and you'll never guess. So we left it that she is really good at keeping her secrets and we just love it when she gets that Mona Lisa smile. So that is the organic experience for today, a bit messy, but beautiful in the end, it normally is.

Fun Day

Today was "Fun Day" for one of Claire's preschool classes. When I first heard of this I had to smirk. My dear friend Melinda has "Fun Friday" with her kids every week, Claire's autism school does it once a year. So this morning we woke up, excited for the big event. Well, Claire and I were excited, Jared a bit more on the terrified end of the spectrum. We actually got out of the door with both girls and to the bus stop on time, something I never would have thought we were capable of, I reveled in the achievement. For our first act of fun we jammed to Jimmy Eat World in the car. We can't figure out why, other than exposure, but Claire loves to rock out to their older stuff. As the day went on, Claire got to have her first ride on a school bus, she chose to have a yellow and pink flower painted on her cheek and then she got to ride a pony with her dad. Unfortunately, during all this fun we figured out that Claire has horrible allergies. Her coughing got really bad and we had to leave early. Before we left we got to see some other parents and some of the staff from the school. One of the nice things of an event like this is seeing that you aren't alone. We can joke with the other parents and they get it because they have similar issues. As we were loading up the car Liam's parents, asked about bringing over some dinner. When I declined they then offered dessert and beer. I responded that real friends bring booze when you have a baby, their reply, real friends bring you beer and have one with you. I loved it! It was a total aha moment for me. We are surrounded by the greatest friends. We have had the blessing of friends to laugh with not just since Chloe was born, but for a while. Some are near and some far, but I am truly overwhelmed by the blessing of friendship from so many. Thank you to all of you.

One more

Jared is loving this little thing and can't stop with the video, so here is another.

Chloe screen debut

Here is the first video that we took of Chloe. We are having so much fun with the little bundle.

It was a good Monday

Jared and I have enjoyed a nice, relaxing Monday. All went well with the C-Section and Chloe was born while listening to the Red Hot Chili Peppers in the O.R. She came in at a whopping 7 lbs 8.5 ounces. We enjoyed a nice visit from pastor Lee and some Charlie Hong Kong for lunch, well the Jared and Lee did at least. It's been fun having the Franklins two doors down, shame neither of us can come out of our rooms to say hi to one another. :) We're working on finding out if Claire can come to visit. They've put new rules in place for children as a result of the pig flu. Thank you everyone for your prayers; it has been a really great transition so far. If you want more pictures you can go to my flickr page here.

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 Queen Bee

Wednesday night Jared and I got to go to parents night at Claire's school. This was our first time at this sort of event and it felt a little strange. We are trying to convince ourselves that we still are not grown ups, but parents night sure made us question that. Since Claire goes to a school for autism the event was set up with lots of resources to help families who are living with a child with autism. Clarie started into the system at a pretty young age, so we were already familiar with many of the things that are out there to help. Jared and I had a good little chuckle when the guy from the Play Project presented. It is a really great program that is intended to use floor time to help the kids connect and socialize. One thing Claire definitely does not need help with is socializing, so we didn't bother that rep. We checked in with teacher Katie who agreed with us that socialization is not Claire's current weak area. She then informed us that earlier in the day, she had one boy on each side of her holding her hand. The exact word that the teacher used to describe little miss Claire was "The Queen Bee". Apparently, Claire enjoys being the center of attention in the group, as she is the only girl, it looks like she gets that role a lot at school. Lord help us, she needs a little competition, and it is coming, soon. Here is a picture from Eater, you can see that she gets plenty of love and attention from her daddy. If you would like to see more of the pictures from Easter, here is a link to my flick page.

Pure Bliss

It was a typical Saturday. We tried to convince Claire to sleep in, she didn't. I went to the chiropractor and Jared tried to get stuff done around the place. Exciting stuff, like cleaning the kitchen, folding laundry and assembling the various things that I decided we needed during the week. At 4pm we had the behaviorist over to go over the plan. I knew that we needed to have a serious look at making some changes when her first suggestion for communication involved teaching Claire sign language. I had a huge opportunity to educate yet another person on what Rett Syndrome is and is not. Of coarse this took longer than we had expected. We lost our window to go to the Monterrey Bay Aquarium as planned and Claire was not happy with that. We had discussed petting the starfish for the whole day. Plan B, we go to the boardwalk. After some smooth talking, I calmed her down and we settled on going to the aquarium tomorrow, the boardwalk immediately. Apparently, everyone in San Jose had the same thought. Traffic was worse than we expected, but thanks to rock music compliments of Uncle Zach, she was happy to sit and move inches at a time trhough downtown. After Jared nearly had a break down finding a parking spot and we pushed our way through the crowd, we got to the carousel. After waiting in line, they went for the first ride and had fun. Then we took our cherry icee and soft pretzles down to the beach and had a little picnic. We couldn't believe that we were having to bundle her up at the beach, but we did, it was cold. In the time that we sat in traffic and waded through people Jared swears it dropped 15 degrees. None the less, we sat on our towel, wiggled our toes in the sand and talked about God's beautiful big ocean. It was getting late and it was time for one more ride on the carousel and to get home for dinner. We timed it perfectly, there was hardly a wait. Jared and Claire found a big brown horse to climb on that was close to where I was sitting. After all that walking in the sand, I was so content to be sitting. I was processing the day. Thinking about how I need to help the behaviorist to understand Claire. What do I need to be communicating to her teacher, the usual heavy stuff that I try so hard to get out of my head, often with little success. Then the carousel started and it was magical. She lit up. It was such an honor to see her in a moment of such pure bliss. There was no biting or hand wringing, no shakyness, she just glowed. Again, I find myself learning so much from her. Here is this child who is becoming painfully aware of her differences with every day. I can no longer discuss her "disability" in front of her as it upsets her. But in this moment, none of it mattered. She was sitting on the horse with her daddy, like many of the other children, and she glowed. It was so great that I even stood up to take a picture so that I could remember the moment and share it with all of you. I hope that wherever it is, that you get a moment of pure bliss this weekend like we did.

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.

Non-verbal and loving it!

Sorry I haven't posted for a while, there will be an update soon, but I want to be in right now right now. Claire and I had a marvelous day. It was not a perfect day, or an easy day, but we relished each moment of it. Today we got to go see a doctor at Lucile Packard Children's Hospital and we didn't need to leave until 9:15, a full hour later than normal. Of coarse Claire woke up an hour early as she just couldn't wait to get to the happiest place on earth (please hear the gentle sarcasm). I had hoped that we could sleep in, but it turned out to be such a blessing. We took the morning slow and deeply enjoyed it. We took the time to play with the Tango and it's "morning"ezset. We listened to Dr. Seuss on audio book. Eventually we were ready and off to our 55 minute drive to LPCH to meet a new doctor. The doctor came in and apologized for having to ask so many questions, but they were not able to locate Claire's chart so they were going off a few notes. I explained a bit about where we are and where we had been. The doctor then asked, so what can I do for you, why are you hear? The appointment had been scheduled to follow up after Claire started school. The process has been long and painful and I don't know if we are even heading for the right goal. I was there for her to weigh in. I got the speech about how hard it is to tell with a child with these types of limitations, I already knew that. So after she told me that she couldn't believe how many resources we were using ( I guess I am doing things right???) she asked if some residents could come in to see Claire. This is the kind of thing that they normally only get to read about, so I am always happy for them to meet Claire and see what a real girl with Rett Syndrome looks like. I just love how ornery Claire got at the clinic, she can totally tell when people don't get her. There is no performing for these people, none! After two hours in the little room, we were free to go, and Claire was thrilled. It amazes me how well Claire reads body language, I suppose it is how she best communicates, so it is what she understands. She can pick up the slightest bit of doubt. I wish that I could learn to be quiet like her and to absorb as much as she does. I am always so busy participating in or try to alter the scene that I am in. Next we were off to food, and there was a Panera Bread, a treat for us! As I rolled Claire in she had the sweetest smile on her face, a little worn out from the circus that we had just come from, yet so content and softly full of joy. She and I don't often go out for lunch the two of us, we have a few times in the last month and I think we will be doing it more often. As we sat there and she enjoyed her fresh fruit and grilled cheese I became overwhelmed. Without words, she says so much, the joy she expressed through her giggles when given a grape and the smile that radiated from her as she enjoyed her sandwich. We didn't talk much. I finally felt comfortable communicating with her on her level. I am always trying to talk with her and expose her to speech and make her feel included. It was when I stopped and slowed down to her level that the moment became some rich I almost lost it. The emotion that I felt was amazing. I felt as if these were the last minutes that we had together, we hadn't wasted them. After lunch it was time for us to head up to the city, we planned to see my cousin Zach who was in town for his work. To get there we first had to run through the rain to get to the truck . Claire giggled the whole way and she was wet by the time I got her in her car seat, lucky for us, by the time we made it to San Fransisco, it was all dry. As we wove our way to our destination, it was great to see her stare out her window and take in all the different buildings, very different from Santa Cruz, that is for sure. We had a really nice time with Zach, Claire enjoyed the sights and all the people that were around to see. We talked for a while and she was often the focus of the conversation. Like any good three year old, she did eventually begin to melt. Her screams of tired were cute, she had had it, done. With that we decided to go and let him get back to work. Here is the greatest part, the whole time we had chatted, she seemed content and involved. When we got on the car, she was glowing! I thanked her for her patience while the grown ups talked and asked her if she enjoyed being in the city. She radiated a smile for the next 35 minutes (I had been sure she was a minute from sleep). I love how active she is without using words. She teaches me so much. Even though she couldn't say witty things and run around playing, she had a great time. There is so much that I can learn from this. The irony, my three year who has wisdom that is so great, yet the common perception is that she is functioning cognitively at a 6 month old level. Makes me so thankful that God gave me this gift on this packaging, I can only imagine how long it would take me to figure this out without her.

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.

Trip to the Market

Earlier today, my lovely husband went to the market to get lunch since I was exhausted. When we run around town without Claire, we take our Smart car. He parked and began to walk in when a lady a parking spot over shouted at him, "Did you see the video on youtube showing your car in a crash test into a wall at 45 mph?" Jared replied, "No." She then said, "You won't live." Being the great guy that he is, Jared said, "Awesome!" I take the car to work every Saturday and often get curious comments. I have had a few friends make jokes, but never had a stranger upset with our purchase. If anything I am more self conscious driving my SUV around after I drop Claire off. I wish I had a sign that says "I don't hate the planet, my daughter requires durable medical equipment." As Jared told me this story over lunch I was aghast. It really got me thinking. Poor Jared has a lot on his plate right now, he is coming to terms with Claire and what Rett means for our life, his work is wanting more and more of him as he is trying to set boundaries and maintain sanity, and his wife is pregnant, as well as irrational and overwhelmed. Why would this lady want to say something so horrific to my nice Jared, "You won't live." Maybe she was having a bad day or just lost a loved one in a car accident. My guess is that she says horrible things like this more than once a week. Sad part is that I think there are a few people out there that offer their opinions to people who really don't need them or care. So as a response, for the next week I am going to watch what I say to others. You never know what is going on in the person you are talking with, the clerk at the market or a friend in the parking lot.

Here is the irony, Jared normally rides a motorcycle, so if he hits anything at 45mph, it is going to be a very bad day. This lady was driving a Cadilac sedan that was a few years old, which on the Highway Loss Data Institute, every year prior to 2008 for Cadilac sedans is rated poor, the lowest possible rating. The moral here is don't drive into walls.