We are all really excited for our trip to Arizona. So excited that I didn't even realize that in less than two days we will be there. So I decided to do everything that I can think of besides pack and get ready. Not sure why, but I rarely pack before an hour before we are leaving and it doesn't stress me out. This trip is a little different because we plan to leave some time between 2am and 3am. The plan is to have the truck packed before we go to bed, wake up in the middle of the night (which has been known to happen anyway) throw the girls and and off we go! I have been doing lots of planning in my head, like knowing what I have to do, thinking about what order I should do things in, which doesn't make much difference if you never start on the list. In my defense, it is so hard to pack when Chloe is around to have so much fun with! So while she napped today I put together this little video. I have been meaning to make a video for Claire and her Rett Syndrome journey for a while and haven't taken the time to figure out how to do it. So this is my practice, isn't she wonderful! Thank you Apple for making one part of my life so simple!!!
Let me start by saying that this post is not about politics. If you are for or against the health care reform I really don't care. However, with all that stuff going on a group on facebook caught my eye and I have been very troubled by it. So I will rant about it here and be done with it. I had seen three or four people that have joined the group "I hate it when I wake up in the morning and Barack Obama is President." So I looked at it and there are nearly half a million "fans". Seriously?!?! I hate it when there are so many whiny Americans who take so much for granted! Last I checked most people that have facebook also have a computer with Internet or a ridiculously expensive phone. They also live in a place where for the most part you can drive around (in it's own right something else we take for granted) without fear of being held at gun point, go to the grocery store and purchase fresh fruit that is flown in from all over the world so that we aren't kept from enjoying whatever fruit we feel like regardless of if it is in season. If somehow there was an auto-accident along the way there would be an emergency response team that would do whatever they could to save your life. Then there is just the fact that you are alive, be grateful! Life is a gift, if you are alive, regardless of who the president is, make it a good day. You might say that's easy for you who has a charmed life. It is true, I lead an amazing life and have many blessings, it hasn't been without it's hardships and any day that I enjoy is because I choose to. Perhaps if there was a group "I hate it when I wake up and my daughter has Rett Syndrome" I might consider clicking to join, but I doubt it. For the most part when I wake up I pray and thank Jesus that we all woke up, then go for a nice walk and listen to the waves.
This picture was taken just after Claire and Jared returned from their adventures in the Smart car. I so wish I could figure out what it is about that car, but she loves it!!!! Tonight the two went out after dinner to go down for a special event at their favorite coffee shop, Verve. I know it is cliche but there is something about having a place to go where people know you. The two walked by Rick's Barber Shop and waved at a friend who was working inside. By the time Jared was putting Claire down in line at Verve, Rachelle (friend from Rick's) was there taking Claire to say hi. Then they saw Kat, one of the awesome girls that helps during the week, at the register (I have to share her with Verve, she loves coffee). Jared was able to quickly enjoy an espresso and a cappuccino before they were off for some shopping. Apparently Claire enjoys advising Jared on fashion, which really couldn't hurt. She picked out a few shirts at the Billabong store from what I was told. How amazing is it that we both tell Claire what it is that we want the other one to get for us for gifts, and she normally comes through. As if that wasn't enough fun the two decided to drive East Cliff and enjoy the waves at dusk. When they returned home Claire came in the door with the biggest grin on her face. I love it when we have those moments that life slows down enough to work at her speed and she thrives!
Lately I have been feeling pretty well. My iron levels are almost into the normal range for the first time in 5 years. We had a good trip to Oakland Children's for the natural history study and I have even been cooking a bit. Yesterday I was a little bit stressed out. It was the first week for Bible study and even though I knew that Jess would be leading the group I was nervous. I hate going to anything that is exclusively female, it just isn't my gig. Claire was trying to have a tea party with Jessi and Chloe was playing the role of Gozilla, trying to climb up Claire, so I took her to play in my room while I got a few last things done. She was playing with my iphone but it was locked so it wasn't a problem. I was calling Jess to tell her that I was almost ready to start panicing I was so nervous. After hanging up on her answering machine the phone rang. It was 911, they wanted to know if everything was alright. Oh the irony! They had gotten a call from my number and a hang up, so they would be sending an officer out to check on the situation. How is it that I dialed 911 without noticing? It would be one thing if Chloe did it while playing with the phone, but no, it was me. It wasn't too long before there was a solid knock on the door. The officer stuck his head in the door and Chloe started to flirt with him. I explained that Claire was in the bath with Jessi and they were the only other people here. I told him that I am just an idiot and dialed 911 without even knowing it. Is it bad that this is what happens on the good days?
Last week I made a huge mess in the fridge in the process of thawing some beef. Over the weekend my wonderful husband took it all apart to clean it out well while I had all the veggies out prepping for the week. He did such a good job that he even found the snail that was on the underside of the bottom shelf, which doubles as the top to the produce drawer. I was so glad that it was still alive and we set it free in the bushes off the porch. It seems very ironic to me that just as we are finally slowing down we would stumble upon a lovely little snail, which to me is the embodiment of slow. We are proud members of Slow Food USA but in the last few weeks haven't been taking the time to prepare meals and enjoy them together. So being in the kitchen with Jared when we found the snail was just so special, I am crazy, I know. It is so nice that things have calmed just in time for the start of the CSA season. Not that I don't love the beets, kale and cabbage that we have been getting all winter, but the start to the CSA season is a sign of lots of yummy food to come. Last season was a little crazy, I eagerly anticipate being able to soak in all of the bounty from our local farms a bit more this year. I really feel like farm fresh foods is one of the ways that God tells me he loves me. I am in such awe at the diversity of different crops and how fragile the system is. Too much rain or heat and there is a problem. Yet, it all works out and large populations have sustained on this fragile system. What a beautiful example of God's beautiful control of everything. I love how much my little Claire is like the snail and the farm. So fragile, yet she perseveres, with a great deal of patience, she can do the most amazing things. It is so hard to learn to back off and not facilitate nature, this morning as I was patient Claire stood up using only contact guard for assistance, something that she has been able to do, but it depends on me giving her the time and not rushing. So many lessons to learn, too bad my brain is so finite, I guess I will just have to keep trying to go slow and absorb what I can.
Since returning from the trip I really haven't talked about it much, after finally talking about it with friends I think I am ready so here goes. Thursday morning we went into the girls' room to find Claire covered in vomit, pretty much my worst nightmare. I held her and contemplated the reality of why we were going on this trip, because she has a life threatening condition, my heart sank. The vomit was dry and matted in her hair, she was weak, it wasn't good. We made a bath and washed her hair, with that she perked up a bit so we figured it was most likely reflux and she was fine to go to school for a few hours before we left for the flight. She got dressed in her new skirt for the trip and ate breakfast well. Once we got to school her aide and her OI instructor met us in the parking lot. Before taking her seat belt off we talked for a moment to give her some time to process. Just before I went to get her out she vomited violently, poor little thing, even out her nose. So we went home. The limo was coming to pick us up in just over an hour and Claire didn't look like she was in the mood for a big fun trip. I called Make A Wish and was surprised when they said this happens often. After a short nap and a snack, she started to surface. About half way to the airport she was all smiles and back to the vibrant Claire that we love so much, there was a huge sigh of relief. We had a "Home Alone" style rush through the airport. By the time we got to the gate everyone was lined up and pre-boarding was about to begin. Southwest Airlines, was amazing! The guy at the gate helped me down the jetway as I had both girls (in two separate strollers) while Jared went to get lunch for Claire. The flight was short and sweet, Claire enjoyed Dr. Seuss on the ipod until she fell asleep. The guy in front of us had his hands full with the cutest little girl (Chloe) who was jumping and climbing all over the place. Everyone got off the plane and Claire was still asleep. Jared went to get her wheels set up and was greeted by 4 Orange County firemen and a Sheriff. They had come on their days off to help us! They had a big welcome sign for "Princess Claire and the English family" Gift's in Ariel gift bags, flowers for Claire, even toys for Chloe. For the first time in my life I walked through the airport with not a thing to carry. They pushed the strollers and carried the bags, it was unbelievable! By the time they loaded the luggage into the car for us, both Jared and I were fighting back tears. We exchanged hugs good bye and were on our way. Their presence encouraged Jared and I in a way that I really can't put into words, I will just leave it at amazing. We headed straight for the hotel to get settled in. Just a bunch of normal stuff, Jared got lost and a possible traffic ticket on the way to two different grocery stores trying to get the right food for the girls, Chloe screamed for about an hour (my parents heard her in the room across the hall) and Claire slept through it all. I sat and watched as she occasionally smiled in her sleep, I assume she was having unbelievable mermaid princess dreams. Friday was our first day, we went to Disneyland and got the largest cinnamon bun ever for breakfast. Then it was over to California Adventures for the princess filled lunch at Ariel's Grotto. Being overwhelmed we forgot about Claire's desire to use the potty and she got pretty upset at us, but she made a quick recovery and had a great time with all of the princesses. She was so excited that she was asleep at the table before dessert got there, always a good sign of a lot of fun. Saturday was the big day. Claire loved having breakfast with Minnie Mouse, who kept coming to our table and admiring Claire's pink glitter shoes. She also enjoyed the pancakes, her favorite. After breakfast we headed into the Magic Kingdom where Claire met her fairy-godmother-in-training. We picked out a dress and then Claire enjoyed sitting while her hair was done up. It seemed that the day was going well, dress up is one of her favorite things to do. Disney has an official "Wish Lounge" that we were able to go back to and rest a bit. Claire enjoyed her lunch while watching Aladin, I think a new favorite. Then we were off for the big meeting with Ariel. Of coarse I left the paperwork in the room and remembered the wrong place to meet, because I am awesome! After a bit of stress amongst the grown-ups we figured it out and made our way down to see Ariel. We were ushered into a private room that was nice and quiet. Ariel came in and sat right next to Claire. She started to talk to Claire and asked what she had enjoyed. Claire's sweet little lips started to move, yet no speech came out so I offered an answer for Claire's approval. Her eyes swelled up with tears, bottom lip quivering. She wanted so badly to answer herself. Ariel was great but it was too late, the weeping intensified and she was screaming and very unhappy. It was about a 6 minute walk back to the wish lounge. People starring at the girl in the wheelchair who was so deeply upset. I kept playing it over, I don't think I could have done anything different or better, it was bound to happen. I thought that the whole vomit thing was a nightmare, having Claire's one wish ruined by her physical limitations, worse. We sat and watched Aladdin and she fell asleep. I sat there sobbing, feeling like such a failure. All I wanted was for her to have one day that Rett didn't ruin, too lofty of a goal for now, maybe someday. I do have to say that the cast at Disney was great. They wanted Claire to come back if she was up for it and would do anything to make it happen. After resting we decided to wander in that direction and test the waters, turns out there were white caps. It was such a blessing to have my parents with us as my dad took Claire for a walk as she just wasn't really happy. Wouldn't you know that 10 minutes later they returned, Claire had a Minnie Mouse doll on her lap and a huge smile on her face. We mentioned that Ariel might be around and asked if she would want to say hi again, she lit up, a sure "Yes!". Jared went and made the arrangements and they took Claire back to meet her right away. Ariel was so genuine and glad that Claire came back. She wanted Claire to hang out all day, her friend Snow White even came by to say hello. I could see that the Princess Faire was going and Ariel was late, but she had all the time in the world for Claire. It turned out that she too loved Minnie Mouse's pancakes and gave Claire a tip on Minnie's chocolate chip cookie, who knew that the two had so many favorites in common. We left only because we decided to go on a hunt for cookies, with Claire who had a giant smile on her face. That night Jared and I had reservations for dinner, I was numb. It had been so low, and so high. The goal was to just keep breathing, which I did. Sunday my parents had to go but my brother joined us. It was so special that Andy came to help, he took Chloe duty while Jared and I went on rides with Claire. Crazy that a year ago I hadn't spoken with my brother for about a year, and here he was, such a joy to be with and have fun together. I think that one of my favorite parts of the trip was when he was trying to convince Claire to share her chocolate parfait that she got for dessert. The girl likes her chocolate, but with a lot of persuasive smiles, she obliged to share with Uncle Andy. In that moment she spoke so clearly with her gestures, it was as if she was a typical little girl who was just playing silent in an effort to keep all of her dessert for herself. Claire got her story book ending, which is really all that matters. So if somebody asks how the trip went, I'll say good. What I will mean is good, in good in a rip your heart out, stomp on it, put it back in and it works even better sort of way.