Ain't No Mountain High Enough

It was a whirl wind weekend, but it was fabulous! Going to Colorado and back in less than 60 hours was a pretty crazy thing to do, but I am so glad that we did it! The weekend was packed with lots of opportunity to listen to some really remarkable people talk about Rett Syndrome and it's many facets and what we can do as parents to help. It is way to fresh to know what we heard in much detail. I am hoping that after I sleep for a few more hours my memory will come back to me. I have noticed that I am talking funny now after being at the conference. For example, we stopped at Chipotle on our way to the airport after a very long day of listening about lots of super important stuff. They were having happy hour, if you buy one Corona they give you a second one with chips and salsa for free, sold! Jared and I both stick our limes in and in the moment that you normally tip the bottle slightly to mix up the lime, I completely spaced out. If you do that for too long, you make a beer explosion, which I certainly did. But what was the first thought, clearly my synapses are not firing correctly and I don't have an established motor plan for this (lately I have been sticking to North Coast Brewing= no fruit in beer) so of coarse there was a significant delay. Jared tried to tell me that he has communication apraxia and that when I tell him something that he needs to do, it only slows him down, clearly we listened way too much at the conference. On a caretaker level it was nice as I felt like it was way more affirming than Chicago was two years ago. We are actually doing some things right, who knew?!? Claire had the honor of getting her picture in Dr. Jone's presentation about an enriched environment and Judy Lariviere shared a story of Claire's recent success with her device with the one of the larger groups that she spoke to. There are plenty of things that we learned that have us fired up to tweak or change for Claire, but really I need to sleep before I can try to remember what any of those are. What is fresh and in the front of my memory are the good times that we had with friends, both new and old. I did feel a little odd when I met one mom that I knew through the blogosphere for the first time. As she would tell a story I could interject details because I had read her blog, awkward! But the coolest thing about Rett families is what would normally be an awkward conversation isn't. They get how much the 3rd birthday sucks and the stress of a nap that goes too long or feeling like a failure because you didn't realize how much pain your daughter was in after a fall and the crazy stress of super complicated hospital bills. They are normal just like us. That's right, you read it right, normal! Because in Rettland everyone worries about seizures and weight gain and it is normal, and honestly, I like it there. Of coarse if there was a cure I would leave in a heartbeat, but so would everyone else. While we were gone the girls had a tremendous amount of fun. We surprised Claire with the game Pretty Pretty Princess once we were gone and from the pictures that were taken(at the top), it looks like she enjoyed it! From the looks of the pictures Chloe had a good deal of fun as well. Then again, when has she ever not?

Sweetness

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.

The Adventures of Captain Awesome and Miss Amazing

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.

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