Feeling Blessed

Things are starting to slow down enough that I am able to think a little and feel as I move through the days. I hate it when I go through a day and know that there were a lot more blessings in it than I saw. Friday was a little intense. Claire got out of school two and a half hours earlier and the two previous night Chloe had kicked our buts. Then our nanny called to say that she was at the doc with strep and wouldn't be around any time soon. So I pretty much freaked out and felt so overwhelmed. Then, I assume by the grace of God, I found the strength to take a deep breath. So glad I did! I had so much fun with the girls that day. Then Saturday we went up to Oakland and had a nice relaxing morning at a street food festival. As I sat there feeding Claire, of coarse with people staring, I was thinking how blessed I am to be able to share my love of food with her. One of the suckier things about Rett is that often the girls have to get a feeding tube to keep weight on. Claire still has very good control of her mouth, so every day we try to put the yummiest food we can find in it. I am finding the richest and most amazing moments that I get to have each day come out of really hard things like this. I guess that has lead me to start to cherish the tough things, because ultimately, they truly lead to such sweetness. Like talking on the phone with my mom or watching Claire take 8 minutes to wiggle out of bed. Maybe they are just everyday things to most, but because of some hard circumstances they have turned into the biggest blessings. So I sit here this morning and think about my life and I just have to say how amazed I am that I have gotten so much blessing, far more than I ever could have imagined.

Food Rant!

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.

Claire and her Daddy

They got dressed for church matching, not even on purpose, how could I pass it up!

Ah, the good life

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.

Hi, My name is Chloe and I found my tongue

And the Adventure Continues

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

Anoiting With Oil

Last Sunday was the baby dedication at our church. We realized that with all of the stuff that was swirling around in our life for the last 3 and a half years, we never had Claire dedicated. So we took the opportunity to dedicate both Chloe and Claire. We have been blessed with an amazing church that we are part of. The dedication was different than others that I have seen, it was so special. As a prayer was said, we anointed the girls oil, Jared Chloe and I Claire.





This was the Prayer:

May her mind have Your wisdom
May her eyes see Your Glory
May her ears hear Your voice
May her mouth tell Your truth
May her heart be Your home
May her hands do Your work
May her feet follow wherever You lead
And may her knees only bow before You,
her loving Lord and God.

I was really surprised at how intense an experience it was for me, it has taken a few days to process it all, thus the delay in blogging. As I touched her hands it was as if it all hit me at once, God is going to use these. I continued and touched her feet and her knees. I am just so in awe of a God who not only does not discriminate, He excels at using the weak and the broken. As I continue to process what happened that morning, what we promised our church, what they promised us and what I know God has promised I am so encouraged. It is as if the weight that I put on myself was lifted. We are always working, on standing, hand use, communication and we will continue to. But the difference is the realization that God is already at work, using who Claire is right now. I loved the process of publicly recognizing that the girls are a gift from God. If only I could do that every day for everything in my life. With all this rattling around in the back of my head, we come to bedtime tonight. We did our usual, two girls in the bath tub, fun splashing routine. After Chloe was down and the lights were out, Claire got a huge frown face. The dramatic frown that quivered slightly with one giant tear slowly rolling down her cheek. I talked with her and asked some questions to try to figure it out. It is really a tough thing to explain to a three year old that Jesus loves her so much, that He made her special so she can't talk. Lucky for me as we had this conversation the cat came and sat on her pillow and nudged her head, for this a small smile broke. So in this literally dark hour, as I sat by the bed with a sweet little girl, I am awe struck. That she does know the peace of the Lord, weather she knows it or not. Could it be, that God can work through fat kitty cats too? The picture is of the lovely Claire, on the way to the church building for the dedication.

I spoke too soon

I was feeling better, so I went ahead and gave myself my medicine just after the last post. Sure enough, I have been under the weather ever since. I think that I am starting to turn the corner and get a little more energy. Of coarse, another dose is due next Monday, oh well! So I am not having much energy for the blogging, here is a quick summary. Claire is doing great, there haven't been many recent pictures of her by herself because she always wants to be standing(hard to take a picture and catch at the same time). She is getting really good at finding her center and we are hopeful that she will take her first steps sometime soon (by soon I mean this year, Rett world moves very slowly) She has one more week of summer school and then a six week break. I am trying to get strong so we can have lots of fun during that time. Chloe is doing great! She went for her 2 month check and the doctor said she was "perfect" I agree. She too has the cold, which I just hate. Somehow she still manages to get out lots of smiles and coo's. That's all for now, we are off to PT, the fun continues...

Not going far

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

My little Engine that did

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

Words Can't Descibe

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

Back to life, our weekend

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

4 Weeks???

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

Little Miss Two Face

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

Mona Lisa

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

Fun Day

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

One more

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

Chloe screen debut

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

It was a good Monday

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

Getting Ready

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