The things that fill my days and help me to understand the work that God is in the process of.
5.27.2009
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.
5.17.2009
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.
5.15.2009
Fun Day
5.08.2009
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.
5.04.2009
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.
5.02.2009
Getting Ready
4.24.2009
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 Cla
ire'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.
4.18.2009
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 tow
4.10.2009
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.
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
3.04.2009
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.
2.10.2009
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.
2.08.2009
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.
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.
1.25.2009
Bedtime
Thought that I would share more of what bedtime around our house has been like lately. We are incredibly blessed to have a three year old that, for the most part, enjoys her bedtime routine. I now wait to see if she will stay in her bed where we put her or wiggle her way out. Either way we win!
Thank you for the award!
I am very excited that an award was bestowed to our blog. My amazing friend Brooklyn gave it to me. You can check out her blog here. I am supposed to put up some logo and pass the award to 10 friends. I am so sorry for not doing this, it is a little too complicated for my fragile mind. But we are grateful for the award and wanted to make sure to say a huge thanks to Brooklyn for it. Brooklyn and Kelly we love you and wish you didn't live so darn far away!
1.22.2009
So excited!
I haven't been blogging much lately because I have been using all of my energy to communicate with several schools and all of Claire's various people. Today we had a very exciting day. She got to go back for her second day of school to Mount Hermon's Playschool. Playschool is a really neat preschool that has many fun things that Claire really enjoyed, mainly lots of kids. She had great fun playing with clay, watching the fish and hanging around the train table. When I went to pick her up she was beaming, she was so happy. We then got to take a break at home for a little down time and food before heading off to physical therapy. Sue our amazing PT could notice a huge difference in Claire's demeanor. Since she has spent most of the morning having fun and playing, her body was very loose. She was able to take several steps while holding onto a swing, a very unstable object. As we left Claire was so proud of herself for doing such a good job. I can't believe how hard she worked, but she was so excited to be able to put the pieces together and do it. She was really aware of where her body was and what she was doing. She knew that she was doing things that don't normally come. We came home, both of us exhausted from the rigours workout. I was surprised that she didn't crash in the car. When we got up to our place I laid her down, took off her shoes and read a story. Certainly, she was close to sleep. Imagine my surprise when I went in her room 45 minutes later to find her in her bed laughing and playing. We had a little talk about how exciting it was that she had such a great day and important it is that she sleep so that we can play later on when Daddy comes home. Amazing, after that she went right out. Here is a video of what I saw when I went in, before our chat. Thought I would get it on tape, in case I need to remember of great she is some other time when she is overtired and unruly.
1.16.2009
Victory is Mine!
I think that it is safe to say that things have been a little more on the overwhelming side lately. January has a lot of volume of things happening for us, which is great, but it is a lot to manage. With so much going on, I have decided that I just might never be on time to anything, but I am not about to spend a bunch of time rushing around, life is just too short. Today was a full day, like most are. I worked from 4-7 in the morning, so I got a bit of a jump on the day. For the first time this year, Claire was actually a minute early to school, they weren't looking for us, as they have grown familiar with out five minutes late routine. Next we had a neurology appointment with Lucile Packard Children's Hospital, which is about a 45 minute drive. It was a miracle, somehow we got there 4 minutes early, we never get to doctors early. It was fun. Being late does not bother me, but it was fun to be on time for two appointments. By the afternoon, we lost the momentum, Claire's babysitter called to ask where we were, she got to the house 40 minutes ahead of us, you just can't win them all.
1.06.2009
1.04.2009
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!
12.26.2008
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.
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