I am again in awe of life and how ironic it has been for me lately. A doctor noticed that Claire's spine has started to curve a bit so we were referred to a specialist to monitor the situation. The trip to the doctors office was the perfect storm of circumstances. My wrist was hurting, Claire needed to be in her chair (instead of our double stroller), Chloe was over tired and woke up as soon as we got out of the car. Then we waited forever, at least 30 minutes, while trying to feed two children, it felt like forever. Then we went back and waited more. After the first interview with the nurse practitioner it was decided that we needed an x-ray. Thankfully by that time the cavalry had come. Jared helped Claire to stand for the x-ray and back into a room we went to wait. Finally the doctor came in with nothing helpful to say. As we left I was so upset that Claire had to jump through so many hoops, all for somebody who didn't get her. He actually recommended a "real" wheelchair for her so that she could play with the wheels. I didn't know what to be mad at, him for such a crazy recommendation or me for being the pessimist that assumed that she couldn't benefit from reaching the wheels if she wanted. It had been a long day, I am still emotionally exhausted from Christmas, and I had just spent almost three hours at LPCH and had little to show for it but over tired girls. As I got onto the freeway Claire started to get more unhappy so I reluctantly put on "her" music. Her favorite song in the whole world is "Sweetness". As the song started she turned her head to look at me in the mirror with that slight "Mona Lisa" smile that she has. Then the best happy sound came out of her. I love it when a favorite song comes on and all my problems melt away and I love it more that Claire has this. As we drove home, Claire soaked in the beauty of the forest and bobbed her head to the music. I pray that some day she can dance to her favorite music on this earth, that day will truly be sweetness.
It's not something that I hear much. I typically fall asleep while the dish washer is running or music is playing. When I am awake there is almost always a lot of things going on. But not today. Jared and Claire went to get coffee, watch the surfers and go shopping in Los Gatos. This left Chloe and I home and she took a great nap. I roasted some squash and made the baby food for the week. Then took a shower. Once I was dressed the most amazing thought happened. There was nothing pressing. Sure there are 4 loads of laundry waiting on the floor, the carpet needs to be vacuumed and the dished could use some attention. But the phone wasn't ringing, I wasn't late for an appointment, there was no child in need of my help. I sat down and the only thing that I could hear was a bird chirping, then it flew away. Then I heard a rattle in the crib and the phone rang, but it was a very nice moment. I am reposting as there was a comment that I wanted to remove and couldn't figure out how.
It might sound odd as I am a stay at home mom, but I do feel like I commute every day. Claire goes to school five days a week at two different locations, each at least a ten minute drive from our home. Getting Claire a public education is indeed a full time job in itself. Enough explaining, on with my story. As we started our journey to school today I was thinking about all of the usual stuff. When should I call the County Office of Ed to discuss the next IEP, I have to call the district and find out what on earth they are thinking, when are we going to see the specialist about scoliosis the appointment is in Dec so it must be soon, the typical monotonous part of my job. As we got onto the highway the light was coming through the very thin layer of clouds, it was breath taking. Normally we go to school in a dark grey fog, this was more like low laying clouds. I told Claire that I felt like we were driving in clouds and we could pretend to be angels, I got a big positive yes to that! As we dropped getting closer to sea level the clouds cleared and the sky was so amazing, crisp and clear. I tried so hard to soak in the beauty of the morning. The trees were such a deep bright green since it rained a few days ago, the leaves were bright red and the blanket of light fog was slowly starting to reveal the dark blue water beneath it. I seriously have such a beautiful commute. It did help that both girls were sitting quietly smiling. Then we got to school. As I helped Claire to walk toward the classroom I discovered that she had puked inside her shirt, but I had a clean set in her backpack, so we are still up for the day. Now I need to get a referral to GI, another thing that I have been meaning to do.
Maybe it has something to do with my time in culinary school or the work I did in the kitchen at the Westin, but I am a pretty confident cook. To be honest, confident most likely doesn't cover it, more accurately over-confident, humility lacking, and down right boastful would better describe how I view my skills. Lately, all I've been making is food for the girls and every once in a while, us. Chloe has been working on solids for almost two months and aside from rice cereal, I've made it all. However, with the surgery I got a little behind on my food mashing activities. Knowing that we were getting low on the supply I picked up a few jars of Earth's Best organic baby food while we were out. Two nights ago Chloe devoured the pears and cinnamon and I figured that I would try a jar of carrots since we were out of veggies. You would think that I was trying to kill her. I got one spoonful into her mouth and she looked at me as if I had tried to feed her poison. I put on a smile and tried for a second bite, intercepted. She then, in the agony of being fed horrible jarred food covered her eyes in disgust and then tried to pull her hair out, in the process, getting carrot all over! I have to say it was the greatest complement ever! To those of my friends that are a second child and have voiced concern about Chloe not getting full attention in the shadow of her sister, know this. Claire was fed jar after jar of baby food (still the organic stuff) since I was chasing around AZ with my mom post stroke. Chloe has been eating fresh cooked veggies from the farm one town over. She might eventually have to wear hand me down clothes, but she is eating like a queen. After this incident I promptly roasted some winter squash. Yesterday we had it for lunch and she gobbled it right up! I have to admit that as a mom I screw stuff up all the time, like completely forgetting to give her a bottle before bed, leaving the diaper bag at home and so on, but at least I know that she loves my food and will turn her nose up to anything of lesser quality.
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.
Earlier this week I had the unique pleasure of having my right thyroid removed. It was a nodule that measured 4.5cm cubed. It was really getting annoying and I am very happy to have it out of my neck. Of coarse, getting to that place, like most things in my life was an adventure. It started when I went to meet the surgeon. We had a quick discussion about risk and all that stuff. He was more interested in Chloe, who could blame him? He kept saying how beautiful she is, I see that stemming into another problem further down the road, but we have a while. So after a quick casual chat I signed some papers and off we went. Two weeks later I have to not eat or drink after midnight and show up at 10:30 for a noon surgery. The sad thing is that it was no problem to not eat or drink, after thinking about it, I normally don't because I wake up running and don't normally stop until noonish for some nourishment. I get into my super wonderful surgery dress with matching stockings. The nurse comes in to put in my iv. She asked which side was my left and after thinking for a moment, I figured it out and raised my hand. She then wrote yes on the left side of my neck, scary part is, I didn't see this as a problem. Somehow, before she sat down to start the iv I pointed to the giant lump protruding from my neck on the right side. Oops! She said which is your left side, not which side are we taking out and I was too relaxed to care. So after a good amount of alcohol wipes to clean the sharpie marks off my neck, she wrote yes on the other side, started the iv and left me to work on the afghan I am making for Claire. A few minutes later the surgeon walked in and introduced himself as Matt, pausing and then adding his last name in an effort to seem a little professional. Jared and I loved it, we joked that only in Santa Cruz does the doctor come in talking like a laid back surfer. Then the anesthesiologist came in. He asked a few quick questions, stated that I seemed fine and didn't need anything to calm down at this point. I continued on my hand work and he appeared again pretty quickly. He asked two questions and then asked Jared if he had a Ducati. Of coarse, Jared was wearing a Ducati sweater. I then sat there while the doc talked with Jared about the Monster that he had purchased six months ago and all of the custom work that had been done to it. How ironic, minutes before this guy came in Jared had stated that we might need to buy a Monster as the sale that morning hadn't performed at expectations. Eventually, he asked me the rest of the questions you ask somebody before you put them to sleep for three hours and left. Two minutes later he was back to discuss roads and winter gear suggestions. It really was a gift from God. Jared hates anything to do with needles and the pre-op is much harder for him. So in the weirdest way, it was the best experience. An hour late they wheeled me back I took a few deep breathes and woke up in the recovery room with the worst headache. The afternoon didn't get much better, the night got worse. I faded in and out of sleep trying to wait out the drugs. Somewhere in there I had the pleasure of a very nice visit from a friend to break up the monotony of waiting it out. Around 4am I woke up and the headache was gone, I was a human again. By the time that the surgeon came in at 7 I was sitting in bed watching the news and checking my email. He told me how he had used a spoon to try to pry it out but it was too big so he had so cut a bigger whole. That explained why it took an hour longer and why my chest was so sore. I was out by 9, less than 24 hours in. It has taken two days of extra naps and taking it easy, but I am about back up to speed. I'll chalk it up to an interesting experience and a reminder why Claire gets her medical care not in Santa Cruz.
I'm hoping that it is just a lack of sleep and not some sort of mental regression. Lately Jared and I seem to screw stuff up a lot. We have resigned ourselves to accepting our mistakes because we are doing the best we can given our circumstances. So when I do something that ends up to work to my detriment, I will tell Jared that it was Miss Amazing that did, as if that somehow makes it alright. Enter Christmas time. We normally don't even try to attempt many things that "normal" families do because it is too hard. But Christmas got the best of us. Los Gatos has a park with a huge light display. You pay a few bucks and drive slowly through the park and soak in the "holiday spirit". Saturday was going well and we were organized enough to feed the girls early and get them into their pj's before 6. We told Claire that all of this effort was to go look at Christmas lights and she got so excited! So we put them in the truck and off we went. I was so proud of myself, I even got the address online to put into the nav so we didn't get lost. Somehow even with the exit now prompts, we still got the wrong exit but thankfully still found our way to the entrance to the park. Where we discovered that several hundred other people had the same idea that we did. Even if we had sat in line to get in, Claire would have been asleep by the time we got in and she was already borderline bored. Great, Captain Awesome and Miss Amazing strike again! We felt like such failures. Claire was so sweet with her smile anticipating the lights. After driving in circles a few times and misunderstanding each other a bunch, we hit the jackpot. In the square in downtown Los Gatos was a huge tree with very simple lights on it. Of coarse, it was on the wrong side of the car and we couldn't get Claire to look out the other window so she didn't see it. Since it was such a simple display, there were no people around and plenty of parking. We parked and Jared got Claire out and wrapped her up in a blanket. They walked into the square and were surrounded by the trees all lit up. Jared described her as having the most content and sweet smile and peacefulness, I so wish I could have seen it (it was cold and Chloe was asleep, so we were in the truck). We headed home and in about a minute and a half, she was out with that soft sweet look on her face. Why is it that we keep falling for wanting the bigger and better? So often that is not where it's at. But is does make a good story for the adventures of Captain Awesome and Miss Amazing.
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.
Words can't explain, so here are a few pictures. I recently inherited my late grandmother's rolling pin. I woke up early on Thursday morning to make my pie crust with it. It was so good to be back in a kitchen and loving what I was doing. Then we went to a good friends house for the feast. As good as the food was, it wasn't even the best part of the day.
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.
I am so glad to have survived October. Every year now, that month kicks my butt. Now that we are more than half way into November I am starting to recover. The time has been filled with lots of really great and fun times. It is really nice to have a little time to breath and stop and be thankful for it all. Claire is making a lot of progress right now and I am finding myself overwhelmed. I really didn't realize how I had stopped dreaming for her until she started to do things that I had never dreamed of and the process has been amazing. This morning she sat at the kitchen table with her talker. She kept playing her favorite song, stopping after 30 seconds and then starting it again. I really had hear the song enough so I returned to the usual running around in circles getting ready to get out the door. Since the shock value was gone she listened to the song in its entirety. Once it was done, I heard the talker say, put, put. So I went over and she had gone to the dress up screen on her own. Again she started "put silly hat" On the table in front of her was her new rainbow striped hat with purple flower ear flaps. She wanted it on for school. In her own 4 year old way she was getting through to me that she wanted her hat on for school, how typical is that! I love how she reminds me to take big pleasure in the small things. The other thing that she is teaching me is that God has a good sense of humor. I don't get computers, I don't like them. When it stops working I normally unplug it, walk away for a few hours and hope it is magically better when I go back. I am not a girly girl, never was. I wear jeans and a t-shirt whenever possible and might put makeup on twice a year, if you count lip gloss. Enter Claire, who wants to use her computer that reads eye gaze to discuss what dress up dress she will wear to the tea party with her dollies. I seriously don't think that I could feel any less equipped for this gig. Yet somehow, we make it through the days and most of the time we even have tons of fun. Who knew? Will try to be a bit better about posting, I always say that and never am, but I am trying.
I just thought I would let you all know, I am not updating the blog much as it is currently very difficult to type. I am wearing a wrist splint on my left hand, which leaves me typing with one hand. I am going to hand therapy twice a week and hopefully I will be better with a few weeks. When I get it off, I will update more. I hope you all can enjoy your fall as much as we are!
Good Morning! Today, October 1st, is the first day of Rett Syndrome Awareness Month. Rett Syndrome is a devastating neurodevelopmental disorder that happens almost exclusively in females. Girls develop typically from birth to 6 - 18 months of age. ... At some point after at least 6 months of age the effects of this syndrome begin to ravage our daughters. Our sweet Claire lost the ability to use her hands to feed herself over Thanksgiving 2007, weeks after she turned 2. The only word she said was Daddy, something we have not heard in years. She cannot tell mommy why she is so sad or when something hurts her, she cannot tell her daddy if something scares her, she cannot tell Gracie that she is her best friend. What she can do is look into your eyes, that look speak volumes, with that look she tells you THANK YOU and I LOVE YOU. When she giggles you can't help but giggle right along with her. She is determined. She is strong. She is happy. She, Miss Claire Olivia English is pure light, love and joy, our angel sent straight from heaven. Please help us spread the word and help us find a cure so that my beautiful girl can do all that she cannot do at this time.
August 26th was the first day of school (see pic to left) and then I woke up and somebody told me October was next week. What happened to September?!? School is going really well this year and I am so excited about all the things Claire is going to get to experience with this class. Somehow, things going well doesn't make much less work for me. I can only hope that October does not fly by in the same way, but I have a feeling it will, oh well. A lot of really important ground work was laid with the school in the last few weeks. Claire's teacher is awesome and the people working with her really get her, which is nothing short of divine intervention. October 1st we have a meeting at the school with the rep from Prentke Romich, who will be bringing the non-beta version of the eco-point. Click here for a demo video. We will have the device to try for 30 days, as soon as we can get one. There is a list, but everything is set for insurance to pay for it, once our name is up. Oct. 3 is even more excitement. We go up to Oakland for the study. A bunch of really famous people in the Rett world will be there and I hope to learn more about the IGF-1 trial that was announced earlier this week. We will also get to have some good rich down time with some of our favorite Rett families, which is always nice. Then Oct. 5th we have the IEP, which will certainly go better than last year, but we still have a lot to do to get ready for it. Fall is my favorite time of year and even though we have a lot going on, there is much fun to be had. I have a big pile of apples just waiting to transform into apple butter and baby food, that should make the house smell good. Chloe has just started to eat off a spoon and that process promises to be great fun, pretty much everything with her right now is great fun. We also plan to visit a pumpkin patch or two, just because it is such a good time. We are anticipating working with a "wish" team in the near future as we are in Stage 2 with Make a Wish. Oct. 17th we will journey to Chico for Alexis Dream, anyone is welcome to join us in supporting Katie's Clinic and IRSF. Then Claire turns 4! The big decision will be what flavor cupcakes to bring to school, I am pretty sure they will be pink, even if she is the only girl in her class. I am so excited, but I do for see being bad about updating the blog, sorry. I will get on when I can. It is far less motivating to do any sort of typing since my wrist is giving me a bit of trouble. Thanks for still checking in, even when I am worse about updating.
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.
I begin writing with such mixed emotions. It may seem silly to you, but I am very passionate about food. It gave me such joy today when I went to get my CSA stuff and I saw that I was getting a watermelon. A real watermelon, not one that is perfectly round, but one with flavor and character. After picking up my fruit, veggies, eggs and goat milk from the porch of a home a few blocks away, I stopped by Safeway to get some tortilla chips for Jared to enjoy the salsa that I made a few weeks back. Wow, what a different emotion that experience was. I almost felt violated. All of the rows of packaged food, stacked to the ceiling, yelling at me with their loud marketing. I am still in my 20's, it isn't like it has been that long since I have been in a market, but this was horrible. The package sizes and low quality ingredients just blow my mind. There was an open refrigerated case with single serving beverages as well as bottles of wine. I was not really surprised that the case didn't contain any decent wine but I was taken back by the other beverages. Who needs to drink 24ounces of Frappacino, nobody, ever! The soda was sold in 1 liter bottles, what happened to a 12 ounce can? Then there was the check out. I was aghast at the magazines degrading various famous people for whatever they are doing in their lives mixed with the convience foods put forth by the Hershey company. I almost ran out of the store crying. The poor people that go there regularly. Such a good reminder of how important it is to "Vote With Your Fork". It might sound crazy that we eat mostly beef and veggies, but we are blessed with those resources close to us, so that is what we eat. I know that I am not perfect. I have a bad habit of occasionally enjoying Panda Express (which I normally regret) or when trapped in the car with two sleeping girls going to a drive-thru for some french fries. I guess the part that makes me so sad is that so many people just don't realize what they are doing and the options that they really do have. Those that think that they are doing the world a favor by purchasing really small individually wrapped organic snacks are missing it. Eat an apple or a carrot! It is tragic to me that our nation is so missing the big picture on our food system. On the bright side, there is movement, momentum is stirring for a sustainable food system. I belong to a preservationist society. I am able to get tomatoes and cucumbers among other things in quantity almost directly from local farms. When their fields are brimming with food faster than they can get it all sold at market, an email goes out and I can put my order in for a Friday afternoon pick up. There are few things I would rather do than spend a Saturday at home with the girls, in and out of the kitchen and wind up with shelf full of salsa for the winter or strawberry jam. Actually, there is one other thing I would rather do, go to a festival celebrating food and it's place in culture. If you are in the Oakland area at the end of Aug. you might want to check out Eat Real, we hope to go, girls and weather permitting. So that is my rant, I feel better now, time to go make some fruit spread with all my fresh berries.
It has always been a good life, but finally, this weekend I was able to exhale and soak it all in. Saturday we wandered down to the aquarium to meet up with our good friends Garrett and Heather and their two children. Since we were with friends we were able to get a picture of the four of us. It was sunny, Chloe being as smart as she is, refused to open her eyes in the bright light. Pretty good though, no one was screaming ;-) After we lost the will to go on in the crowded exhibits we went out to the tide pool. There were groups of four diving and doing some sort of educational instruction. I stood with Claire and Alicia as the two were transfixed watching the group below us. As we stood there it was the perfect balance, warm sun beating down with a gentle sea breeze to take the edge off. Since the weather was so epic it was decided among the grown ups that the day should be further enjoyed while eating ice cream. It was leaving the touch pool that was a huge surprise highlight of the day. Claire was so calm after standing and watching the divers that I thought she could walk up the stairs to leave, and she did! There were about five stairs. She would pick which leg to step with and I would help her to place it on the stair, then she would step up and take another step to get to the next stair. She was so proud of herself, so I told her we would go celebrate with ice cream. She didn't need to know that was already the plan, she was stoked! I can't say that I remember much of the rest of the weekend. Once we got home Jared and I rotated so we both got naps, for some reason we were exhausted. Both girls are a good time, but both facilitating and enjoying the fun does wear one out. Now I find myself at Monday afternoon and off to a pretty good start to the week. As I type Chloe is very excited about the octopus rattle hanging above her and her new found ability to twirl it over and over. It is warm, a perfect end to the summer only 10 days left of being home alone with both girls. I am already starting to miss having Claire around all day, but I know she loves being in school. So we will just go slow and enjoy today and deal with the rest later.
Well, it appears that I have made it through yet another day. Maybe because I got to go for a walk this morning. I actually woke up with a bit of energy, compliments of two girls sleeping seamlessly through the night. Since we were both up before any of the little ones, I took a quick walk down to Peet's for an iced coffee to get the day going. Even with sleep, I need the help at this point. It was so nice to be back outside so early. The fog was still hanging on the trees and the sun hadn't burned through yet. I am not sure why, but I think that flowers actually smell more in early hours, either that or I just notice them more when I go slowly. It was only 30 minutes and a medium coffee, but I did revel in it. It is the small things in life that make such a huge impact. One of the other small things today was the cat. (I use the term small liberally, she is a very fat cat) Claire has been a bit down lately, each day she gets stronger and smarter, she is more aware of her limitations. Today Athena joined her for nap time. Claire was so excited that she couldn't sleep, so they sat and listened to Dr. Seuss, book on ipod. Since Claire was resting, by 3pm I found some time for a quick bite to eat. Of coarse, being Miss Amazing, I dropped the glass dish with the fork in it, starteling Chloe awake and bringing he straight to screaming for her life. From there on I can't remember much, I do recall that they were both very tired. When Jared got home I announced that we were getting takeout sushi as I would not be cooking do to complete exhaustion. Only sixteen days home alone with both girls before school starts, I think, that by the sheer grace of God, we will actually make it. Yeah! for those of you that would like to see more pictures ofthe girls, here is a link to my flickr page
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.
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 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...
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.
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!
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.
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!
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 :-)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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!
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.
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.