The Sound of Music

I am really excited about this post. This story really embodies the whole concept of my organic experience in the sense of life giving you something completely unexpected and wonderful and I got to sit back and just soak it up. However, like many of my stories, it begins with frustration related to rett. We were on our way out the door to take Claire to Kid Quest so that I could get some respit. I suspect that while I was putting Chloe in the car Claire developed the urge to go to the bathroom. As Chloe was already in the car, I asked her to hold it and told her that if she didn't make it it was no big deal. That provided absolutely no solace and she proceeded to go absolutely crazy. Screaming and biting her hand, yes you can do both at once. It wasn't normal I am irritated screaming, it was the venomous I hate my body, I hate that I can't talk, I hate that you don't read my mind raging anger screaming. By this time we were in the car and the thought did occur to me, just put on her favorite audiobook, it will calm her. But I know that she can calm down on her own and I do not want to lower the expectation just because I am tired. So in the interest of neutral music (Claire and Chloe each have their favorite and we typically rotate between them) I put the radio on the classical station. I then drove and count to five out loud, modeling deep breathing. As Claire started to calm I could hear Chloe speak, "Mommy, is this the song about Ariel?" In an instant I felt as if a bomb had exploded in my head, so many thoughts, so many emotions, stay calm, it is a two year old, you can do this I thought. I then answered and we had a dialogue about the story that Chloe heard in the music. First of all, I am still in awe every time Chloe speaks in a clear sentence not to mention that she can convey what she experiences in her imagination. I don't have an imagination really so that part really amazes me. We dropped Claire off at Kid Quest and then drove home. Now that the screaming wasn't filling the background, I could think a little more. Listening to the music and the narrative that Chloe provided took me back to 7th grade when I lived in Albuquerque. My cousin played the cello and was really my introduction into classical music. I remember her explaining how she favored Handel as it had preferable cello pieces in it. During the year that I lived there I enjoyed when I got to hear her practice or perform. Perhaps it was the exposure to the music in person that had such a deep effect on me and when we moved away, I heard less of it, with time my fondness and appreciation for it just faded. Until today that is. It must have been because I was in such an emotionally raw state, but when Chloe started to describe it to me, I heard the song in a very different light and I enjoyed it. In fact, I reveled in it. I thought of how I had dreamed when Claire was a baby that someday she might play an instrument such as the cello or the violin. Even the memory of the shattered dream didn't kill the moment. I began to think what a wonderful vehicle music is for non-verbal communication. In a sense it seems like an equalizer of sorts. Words are such a hard thing. There are some that are good with them, but many are not. Words seem to be so limiting when it is something greater that you desire to express. I do believe that Claire will have her chance at this expression. She enjoys the arts so much, today was such a sweet reminder that even without spoken words, she has a lot to say and there are vehicles for that don't involve language, good thing I have Chloe to remind me of that.

Foggy

This week I learned that you never know just how close you were to the edge until you take a few steps back. We have just two more days and Claire will be back to school after three full weeks off. It is all a bit of a blur. I know that there were a few doctor and therapy appointments, playing in the sand and Claire has been spending almost each day at Kid Quest. There has certainly been a lot of ups and downs or excitement as I like to put it. As wonderful and exhausting as the days have been, it has really been the nights that have gotten me through this stretch. If you live in Arizona or some other really hot climate, you might not want to keep reading, I am about to brag about our weather. It started after my first Monday with both girls all day. After three hours of Claire screaming and me calling our social worker sobbing, I thought it best to get out solo once Jared was home. I met up with my friend Kat and we walked, stopping down to chat at the cliffs. As we stood and I took several deep breathes of the cool salty air, I saw the most amazing thing. The picture above does not do it justice, but it is of a momma sea otter who was carrying her baby across the bay. They would separate and play and then she would swim with the baby on her stomach. It was so absolutely enthralling to watch. Watching the fog roll in, the otters playing and listening to the waves, it just melted away the tension in my body. I have made several more trips to the coast at night since then and I really think it has been one of the most important things that I have done over the period of the last few weeks. I have found that I have had more energy and a little more focus throughout the day and a slightly clearer mind. The picture below was taken on West Cliff, at the light house. Jared and I got out to walk together in the cool fog and it was absolutely life giving. It feels a little shallow to be so thankful for just weather, but I am. It has been the margin that I needed to get through a long stretch. Yes I am a little foggy this June, but I really do think that is a good thing.

Out of this world

Claire uses an Eco2 with EcoPoint to speak. She has had it for just over a year. Over the last few months her use of the device has really blown up so to speak. Her communication with it is less frustrating for her, she is less fatigued after using it and the people around her have gotten better at implementing it. I have seen a lot of talk in the rett community about page sets and different set up options for the various talkers that the girls use. We have found that the best option at this time is to stick with the Unity language that PRC has for it's devices. The icons are very strange to most adults who have to learn it and at first glance the organization seems odd. But Claire took well to it, so we have stuck with the 45-sequenced for her page set for the last year and I am so thrilled that we have. For the last week, she has been going to her school tab, then to science, where she then says moon and planet over and over and over again. It has been so incredibly annoying. Then came father's day. At the end of school she had brought home a wrapped gift for Jared and we opened it this weekend. As soon as it was unwrapped, we turned to Claire to ask her if that is what she meant with all of the moon/planet talk, she lit up. She was so proud of herself for saying what was on her mind, even if we didn't understand and when we did get it, it was clear that she felt validated. It was one of many, small moments that made the year of trial and paperwork to get the device as well as the year that it has taken to learn the language completely worth it. So to those of you who are on your way to a talker I really want to encourage you. It takes what feels like an eternity, the circus tricks that you have to perform to get the device are ridiculous and could easily lead one to give up hope and stop trying, but please don't. When you are least expecting it, she will use it in a way to communicate that you hadn't dreamed of her using it before. Especially when it is spontaneous and you are not looking for it, that is when she blow you away. My two other cents: I love PRC and Unity, it is the access to the typical words that we use every day that have most allowed Claire to talk about the things that she wants to talk about. If she was using page sets full of words and things we already knew she wanted to talk about, how could she ever surprise us with the stuff we didn't know about her. If you are still in the trial phase, look into PRC, for whatever reason they get less press, but it is an amazing way to give communication to the girls.

Happy Father's Day to Captain Awesome

It is true. I am one lucky momma to have a counterpart like I do. In case you are wondering how my husband got to have such a title, you can read about it here. I don't know if awesome is really a good enough word to describe a man who can: wear a crown to a tea party, wear a glitter covered t-shirt in public to support team Claire, drop everything the second he walks in the door to have bath time with a two year old, stay up late when he is exhausted to check on Claire and make sure she is still breathing and read Dr. Seuss over and over enough to have memorized most of the collection, but it will just have to do. So here is to Captain Awesome, the best daddy these two girls could dream of.

Little Miss Hot Wheels

Finally, it's here! After what seemed like forever, the chair is mostly here and it was clear very quickly, this chair is a game changer. It has taken a little getting used to and it doesn't help that some of the parts that were ordered still haven't come. They called to cancel delivery for the 4th time and I told them that as long as there was a cushion and four wheels, we would take it. One of the parts that is missing is the seat belt. We never really used the belt on the other chair, so I figured no big deal. Which it wouldn't have been, except as fate would have it, on our first long walk, we had a bit of a run in. You see, since we go on walks by the ocean, there are often surfers. Well on Wednesday there was one in particular that was walking the other way with a pretty fancy short board. He smiled as he passed us and somehow as we crossed, the leash from his board snagged something on Claire's chair and she went flying, face first, open mouth, into the dirt. It really happened the best possible way, that she flew sideways so that her face did not land on the pavement, like her knees did. The guy felt horrible and stopped to help. Some old miserable bastard riding by on his bicycle took the time to ask me why she wasn't belted in, that sure helped things a lot, not really. As I got her back in the chair and tried to pick as much of the dirt out of her mouth as I could it was impossible to notice that she was beaming. Each time I told the story to different people throughout the day, her smile just got bigger, the girl is made of tuff stuff for sure! That night Captain Awesome routed around the treasure trove of spare bits and pieces from all the durable medical equipment we have around. He found the foot straps that we had taken off the old chair and we now have a fabulous makeshift seat belt, should we have any more run ins with rogue surf boards. For our next adventure with the chair we headed down to the Monterrey Bay Aquarium. Not long ago Chloe broke Captain Awesome's favorite coffee cup with their logo on it, so we adventured out in an attempt to fill the coffee mug void. They no longer had the cup that we were looking for, so Claire, Chloe and I decided to make the most of the trip and play while we were there. First we hit up the slide in an effort to vent some of Chloe's unending energy. While she ran in circles, Claire was able to roll right up to the glass of a beautiful saltwater tank, she so loved being able to see the fish up close. I hadn't realized how much of a barrier her old chair was until we were out and about with the new system, but it was dramatic. If you look closely, you can see that the old chair was at an angle, so her legs were out farther than her head and she could not roll up to things to see them because of the slight tilt.

From there we went to touch the sea stars, which I could do with both girls by myself since Claire could reach while still in her chair, it was amazing. Since my journey with rett has driven me to insanity, we journeyed a little further to the other side of the aquarium to the drifters exhibit. At the entrance to the exhibit there is a huge tank in the ceiling with sardines swimming in circles. For the first time, Claire was able to move her head all around to take in the full scope of it all. Even Chloe stood still to marvel at the fish in the ceiling and as I watched them both turning their head to look up, in a completely similar fashion I almost lost it. I have found that people do stare more when you cry when your children are behaving well and with that thought I was able to take a deep breath and just enjoy it.  The head turning and the enjoyment of the new wheels didn't stop there, I can't believe how much more she is taking things in at her new and improved viewing position. In addition to just the improved angle, this chair seems to have given her a bit more confidence. People seem to see her as a little girl a bit more, they tend to be more apt to wave and say hello now that she is in a wheel chair. I forget how people just aren't familiar with our weird and intricate special needs world. When they saw her in the big stroller I don't think they knew what to say, but a little girl in a wheel chair for some reason, as strange as it sounds, is much less intimidating. I will leave you with one more picture, it makes this point well, she could never lean like this in the other chair. So if for any reason you are looking into a chair for your daughter, I urge you to look past the stroller looking chairs. This chair does have a flip away head rest and once the seat belt gets added, she can use this on the school bus. It is lighter than the convaid that folded and fits easily into the back of my car. It also comes in a lot of cool colors, which I desperately tried to convince Claire are better than pink, but you can see that didn't work. My only regret is that we didn't do this sooner.

YES SHE CAN

Oh, and she just did! I know that it is nothing new that life is a roller coaster. The last few days have been a ride with levels that I never could have imagined. But before I get into that, let me back up. In my last post I discussed how Claire had been having a really hard time. It seemed as though she didn't have a standing chance against her body. I will admit that at the very end of this last run of crazy, even I had lost sight of the possibility that she would bounce back. Watching her flail like that was new and different and I for some reason associated different with not good, praise God, I was WRONG. Never in my life have I been so happy to be corrected by my child. It is so humbling, knowing that I had started to give up a little when she was deep inside, fighting like hell to come back, and she did just that. It has been almost two weeks since the end of that craziness. I wish that I could figure out what happened, what caused this to turn. Logic tells me that in order for somebody to go from being so out of control of there body, for an unspecified reason, that something has to change or happen to make it better. Here is a list of the things that we have changed, not sure if any of these by themselves or in some combination are what did it, but these are the only variables that I can think of:

-stopped using Nasonnex for allergies
-added coconut yogurt as dessert after dinner
-started listening to the Beastie Boys in the car
-learned that Guy Fieri has a restaurant close enough for us to visit (she is overcome with him, could watch Diners Drive-Ins and Dive all day!)
-was given the oppertunity to answer questions in group at school and got them all right (sad, this is new, all due the Susan Norwell handouts from the conference)

Yes, our life is that boring and predicable that in 10 days, those are the only things out of routine that happened. With those being the only changes that have happened since she snapped back and came back to us, let me tell you what new and exciting things she has done in the last 48 hours. I will have to just list them because there is too much for me to try to put in paragraph form, I am loving this problem!

-reached ot goal of lip closure with straw drinking, I can count on one hand the ot goals that she has reached in a lifetime
-when a new consultant came to the house to meet her, Claire immediately looked at her talker to say "It's nice to meet you. My name is Claire. I am 5 years old. This is my talker, it helps me speak.) Before going to to tell her full range of jokes.
-played keyboard (the full range of keys) with her elbow while holding the pt's finger and side sitting, she also laughed hysterically when she turned on the very loud background beats, which she had to cross mid line to do
-walked 12 minutes on the treadmill without a break, using much less assistance from the pt than normal
-drank an entire glass of milk, ate all of her veggies, pasta and yogurt in just over 30 minutes (dinner typically takes at least an hour)
-balanced on the toilet all by herself for several minutes
-communicated with her aide that she wants to use the raising of her leg as a signal for when she wants to go to the bathroom, then used the signal 5+ times, going right away each time
-stood holding onto nothing more than the bottom of my shirt for several minutes (while Chloe peed on the big potty for the first time)
-stood for 20+ minutes, with her arms on the counter in the bathroom while I again attempted to wrangle Chloe, the whole time either looking at herself in the mirror and making funny faces or laughing at the shenanigans that was underway, not leaning or slouching once.
-purposefully threw her arms around my neck and squeezed to give me one of the best and most memorable hugs of my life

It has really has been a record breaking few days in our little world. It leaves me with so much to wonder about. Like how does she she go through the bad days, never giving up. When she can't hold her head up to eat but she is still trying. When her legs won't support her weight and she still does her best to stand. What on earth is going on in her head that would temporarily take so much away from her and then return it only to be stronger. As a 5 year old, how does she cope with these sudden swings in what she can and can't do. How did I ever let myself give up before her? How much longer will this go on? Will it be two weeks on two weeks off forever? Either way, I will take it. As hard and painful as the hard times have been. Knowing what I do know now, I would do it all again to get where we are today. Today Claire was better able to be herself than I would have dreamed of a year ago. She continues each day to show us the level to which she fights, the depth of her spirit and the brightness of her personality. Our first week in rettland another rett dad told me, "Claire will do exactly what Claire will do." To this day I am still wrapping my head around that profound truth. As I step into tomorrow, not knowing what it holds, I know that she will do just that and with no expectations I look forward to it, knowing that it will be far greater than what I could dream up.

BOSTON!!!

Making your way in the world today takes everything you've got.
Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away?

Sometimes you want to go

Where everybody knows your name,
and they're always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

You wanna go where people know,
people are all the same,
You wanna go where everybody knows
your name. 

Cheesy I know, but it just fits! Last summer a bunch of us ended up in Las Vegas on a whim.  Erica, my always wonderful travel buddy gave everyone in the group little photo books with these lyrics inside, it was the theme to out rettaway. Fast forward to Memorial Day weekend 2011, in Boston and the Cheers bar is right around the corner from where we were staying. Many of the crew from Vegas were there, those that weren't were certainly missed! It worked out that a few new friends joined in too. I have to say that the absolute best part about the trip was my rett family. Being at a table, where it is just understood that everyone there has been pushed closer to the edge than they would ever have imagined. We didn't need to talk about rett or our girls, but just that everyone had the same common thing in the background made it that much easier to laugh and cry together, which is pretty much what we did all weekend. As much as rett can often feel like a nightmare, being with these people really does feel like a dream. I didn't bring my camera so no group picks, sorry. The pic up top is Dawn, who I wish I had seen more of but the little bit I got was great! Also along on the trip was Maren, who I have to give some sort of flexibility and funness award to. Because of her faith she doesn't drink tea or alcohol, yet she went to high tea and sat in a few bars with us, I hope that someday I can be as easy going, spontaneous and fun as the lovely Maren. In addition to being out and having some good friend time, I also got to enjoy the Boston Common and Public Garden.

Having lived most of my life in Arizona where everything was relatively new, it was so much fun to learn about the rich history of this area. From the flags on display to the statue of George Washington and all of the unique trees, it was a wonderful place to stroll with a few different friends as well as a haven when I had hit my information limit on Sunday.

To top off my escape to the garden on Sunday, the church bells from the church in the above picture were amazing. After the chimes for noon they played the hallelujah chorus and it was stunningly beautiful. A true gift. The trip wasn't just fun with friends and strolls in the garden. There was a wealth of information to take in and honestly I think I am still processing it all. Dick Hoyt of the world famous Team Hoyt spoke. To say that was emotional would be a great understatement, it was more than I can put into words, so I will just put up the video and tell you that as this video played on the screen in front of the whole group, Dick Hoyt stood on the stage and wept while watching it, there wasn't a dry eye in the room.

From there on a lot of people talked about a lot of important things. I mean really smart people who are amazing and have given to our community in the most generous way with their dedication to either working to fix it or make it better today. One of the presenters was a sibling, who grew up alongside rett syndrome and now teaches and has a lab and is a part of the solution that is coming. There was also a lot of info on literacy and communication. I am very excited that I have already shared some of what I learned and Claire's teacher is already making a plan to teach her to read next year! The biggest news of the weekend was IGF-1. The idea is that somehow having the MECP2 (which is where rett lives) broken in your brain reduces BDNF and IGF-1??? So if they raise the IGF-1 then the BDNF goes up and then the body works better. It is really pretty complicated and there were a lot of very smart people who did there best to explain it to the pea brains like myself. But regardless of how it works, most importantly, I think it DOES WORK!!! After two days of brain numbing information, there was a little two sentence blip by the primary researcher. It included words like 'preliminary' and 'very positive' and 'moderate improvement'. All words that I don't generally associate with rett syndrome, until now. I left humbled and encouraged. There are amazing people working so hard to get the girls a better life. Both in the labs, in the clinics and the schools. I am in the company of some of the greatest friends a girl could dream of. As hard as it might seem day to day, I keep hearing the words of Dick Hoyt in my head, "YES YOU CAN!"

A wrinkle in time, or just a week

A week ago I posted this pic to my facebook profile with a caption "Flight departs in less than 12 hours. I should be packing but clearly I am just too busy for that right now."

While that was true, it was really only a half truth. What you can't tell from this picture is that I was trying to give Chloe some much needed attention as her sister had been getting  most of it lately. The past two weeks had been very hard for Claire as I mentioned in my previous post. We had spent all afternoon in the GI's office at LPCH the day before and we had pulmonary scheduled for later in the day. We had gotten to the point where all of the sudden all the specialist could see us not because they had time, but because they were worried and honestly, so was I. So to prepare for our second straight day of marathon doctor time we went to the beach. As it turned out, none of the specialist had anything helpful for us other than, this is not good, sorry I can't help you, call neurology. I was really nervous about leaving with Claire in that state. That is just how she is, no intervention was needed, but I was worried about leaving. Her primary care ped. told me "well, at least if something crazy happens in the middle of the night we all know that she was checked out and everything was fine" As comforting as she was trying to be, it was yet another painful reminder that it does happen, that you wake up and your child doesn't, morbid I know, but that is where we were at. We finally got home around 5:30 and my ride to the airport was coming at 6:15 so I decided that I did indeed need to pack. Then the most amazing thing happened, Claire came back, just like that, she came back! Jared had taken her to brush her teeth and go to the bathroom and she just popped right back into her body. As I kissed them both goodbye, Claire sat on the couch, straight as an arrow, bright eyes, quiet hands and that sweet smile. It was a really great way to leave, I honestly can not think of any better circumstances to leave under other than maybe being a little more rested. What happened next, as far as going to Boston, being in Boston and then coming home will have to be another blog post, which I will try to get out sooner then later. But you can see from my picture below that I took today, I really am just too busy to be bothered with a lot of things. This picture is a much better representation of what is going on in my life today. This morning we went to the beach not because we desperately needed to, but just because we could.