Really Big Trees

Today I felt like crap. I think it is a combination on allergies, Chrone's disease and Rett syndrome with an element of toddler and oh yeah, it's Monday. Chloe thought it was so much fun to take a nap she pretty much jumped on her bed all the way through it. On the bright side, I didn't have to wake her up in order to go get Claire from OT. It was sheer joy to walk in to see Claire working with her OT, sitting with her legs crossed on the floor, straight as an arrow and working on drinking from a cup with a big smile on her face. Really, other than me just being tired beyond belief, the day was going along rather well. Claire pushed Chloe around in her wheel chair and walked out to the car. By the time we got packed into the car, it was just more than two hours until dinner, what to do, what to do. I knew that if we went home it would be a long two hours, but if we drove in circles and killed an hour in the process of getting there, we could have some fun before dinner and maybe I would make it. To test this out without committing too much, I first drove down by the water. Claire smiled at the ocean, closed her eyes and check out, perfect, now if I could just get Chloe down! Sure enough she dropped on Hwy 1 so it was off into the enchanted forest, or Hwy 9 as some people call it. It was amazing! As I started to soak in how beautiful light is as it filters through the trees it occurred to me, wow, I can see the forest AND the trees. Cliche I know. But really, I have driven this road before numb and not noticed either. As the girls slept and I enjoyed the winding road that went through the towering trees I got to think a bit. I love that I live somewhere that my natural surroundings give me so much beautiful perspective on life. Granted, my life is not easy and I am not just blowing my trials off in some sort of trite manner. But I am starting to see it in more of a big picture sort of a way. While I wish that I could have been home, fulfilling my delusional desire to cover our table in glitter in the process of hand making valentines for the kindergarten class, I was driving around to give Claire's body a break after a long successful day of school and therapy. Today, I am alright with that. Most likely because there was less screaming and more smiling. At the bottom of it all, the trees are really big and quite wonderful and it leads me to believe that somehow, so is my life.

Our Playground

I have to admit that it isn't just because of Rett that I don't like playgrounds. Even before there was anything special or different about us, they just weren't our thing. As time wore on, I somehow lost sight of that and assumed that we didn't go to the playground because we couldn't. Over the last year we have made a few trips to the playground and Chloe loves it, but I don't. I just didn't get that gene. It must have something to do with the struggle that I have with playing, regardless, there has been some guilt, that we don't go often because I really don't enjoy it. The last few weeks we have absolutely epic weather. So I did something very brave, something I hadn't thought to do before. We went to the beach. I know is sounds obvious, but the beach that I am talking about isn't one that is populated with other little children, Chloe is normally the only one. Today the tide was pretty high, so there was no beach, but that didn't stop us from enjoying it! We sat on the stairs and watched the waves crash. I love that Chloe is growing up knowing that little bubbling sound that the ocean makes as the waves recede, it is one of my favorite sounds. We talk about the smell of the salt in the air and how pretty the sun is at it glitters over the smooth parts of the water. Truly I am very thankful that this has been part of my organic experience.

Silent Angel...Not So Much!

I am sure that most of my rett friend readers have heard the term "silent angel" in reference to the girls that have been diagnosed with Rett syndrome. I imagine the term references that the girls don't use words spoken with their mouths to communicate. However, Claire is far from silent. First of all she has a voice through her computer and secondly, there is nothing quiet about Claire. Weather it is her laughing or screaming or maybe grinding her teeth, certainly none of these things make me think of silent. On Friday Claire's computer had an error that required me to call tech support. Of coarse Miss Amazing remembered roughly 30 seconds after they switched their phones off for the weekend, drat! With that as the stage, Friday afternoon and evening were pretty painful. Claire wanted to talk and she made it abundantly clear she was not happy. It was an emotional 5 year old, why are you doing this to me cry/scream that slowly ripped my heart out as it went on. We were aggressive on keeping the fun levels up over the weekend and that helped take the edge off her missing voice. Monday passed, it was long, but aren't they all? Again, I didn't call tech support in time but at least Claire's allergies were bad so between a long nap and being out of it at dinner she hardly noticed. Tuesday was my day! I got on the phone and the great tech support at PRC walked me through resetting it to factory settings, problem solved! Too bad I hadn't backed up the device since September, drat! Oh well, what's done was done, I was having a good day and wasn't going to let that set me back. I even took the time to help Claire walk to the dinner table and she did so well! Too bad Chloe tipped too far back in her chair and went crashing down with a loud thud to her head. Buckle Claire, attend to Chloe, situation back under control and tada, Claire's talker is working! Right away Claire started saying all sorts of things. Typically when she says something, she pauses and looks for a response from her audience. But she wasn't looking away at all, it was a run on, she looked stuck. I gently turned her cheek toward me and told her that it was alright to take a break from her talker, that she could just look at me and we could chat. Immediately tears welled up, her glasses steamed up and the whaling began. Chloe looked at me and said, "Claire's mad Claire's sad" what a perceptive little girl. It was an hour of the high pitched mad as hell business. She never ate her dinner and got into her pj's screaming. There is no doubt in my mind that she is a sweet little girl and that my life is better with her. She is strong, smart, funny, caring, loving and so many wonderful things. Silent, not so much.

Silly Monkey

I know that I talk a lot more about Claire on this blog than I do about Chloe, mainly because if it was just fun little Chloe I wouldn't need a blog to sort through all the mess of my head, she is easy! I never understood why people would want to have such large families after having Claire because just the one was so exhausting. But now with the perspective that Chloe offers, I get it. Chloe gives, she gives joy, she gives life, she offers freely. While it might just be my incredibly biased opinion, I think that Chloe is very special. For starters, she is smart! Yes, I am a proud momma. At first I tried not to think about it much. I didn't look at developmentally where she was supposed to be because I have found those charts to just be depressing. In the last few weeks her language has exploded and several people have told me how advanced she is, I have to say this is something new to me and I like it. Tonight, as Claire surprised us be standing completely on her own for 15 seconds Chloe exclaimed "AMAZING!", it was so sweet. Not only is she sweet, she is so compassionate and caring. When Claire gets upset Chloe will look at me and say "Claire is sad." then walk up to Claire who is normally bright red from screaming and crying and will kiss her forehead and tells her that she loves her, as I think to myself, AMAZING! When we walk away from people she says, "bye, take care" and also greets people with a "s'up dude!" and some sort of silly expression. Not only is she smart and a sweet spirit, Chloe is a girly girl! How has this happened to me twice? I am not sure, but Chloe looks to outpace Claire with her love for princesses, tutus, jewelry and makeup. She is our silly monkey, such a special little girl that I am so grateful for. I just love getting to spend the days with her and all that she is teaching me about laughter, fun and general silliness.

Enough?

How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was right in the front of my mind. I wanted to go as long as we could before having to advocate and fight. At that time, the idea of a severely disabled child seemed so far off, and in some ways it still feels that way, in others it doesn't. Claire is doing very well right now. By very well I mean that she wakes up alive in the morning and is present throughout the day. Sure there is a lot of screaming and crying and she isn't doing any brand new things that are mind blowing (like standing up and walking away) but she is doing small things that I had forgotten to hope for. With that said, it doesn't seem all that broken. But then we talk to other families, learn what is working for them and a mean little voice creeps into my head, maybe we should be doing that too? Why is it that being content with this is so hard?!?!?!? It is certainly guilt and fear driven, what if there is something that I could have done more of that would have made a difference? Well, I guess we will just never know. I am mentally psyching myself up, today we go over the hill and through the city to Children's Hospital Oakland, to Katie's Clinic for Rett Syndrome. I had hoped to not go this year, but with the creepy seizure or neurological craziness that is going on, I called and they were able to get us in. These people are the experts, they see lots of girls and know all the stuff to recommend. They know what kind of equipment might help, what type of therapy to do and other stuff that I wouldn't know. We normally get a report a few weeks later with a short list of things to do. But honestly, I don't want a list, I would like to be done please. I would like to hear that I have done all that is humanly possible and that I can just enjoy Claire the way she is and not worry about the future. Is that too much to ask? I know that won't happen, at the minimum I see a long EEG in our future, maybe some seizure medication. Perhaps somethings for scoliosis and advice on getting BMI up. So here goes, off I go to walk that fine line, advocating and getting what Claire needs, but not getting greedy and trying to get things for her just because we can, enjoying her for all the joy that she is while grieving that we are going to a hospital because her body doesn't work right, and of coarse getting some ice cream along the way.

Play time?!?!

It isn't much of a secret, I am much better at working than I am playing and honestly, it makes me a little sad sometimes. I know how to slow down, relax, soak things in, but play or have fun, not so much. I really gave it a good try when Claire was born. I tried so hard to not be the sum of the tasks involved in taking care of a baby. For a while, I was really doing well. Then life got a little crazy. But I was convinced to get back on the wagon and keep trying to have fun when we moved to Santa Cruz. If there was ever a place to blow life off and play, it's Santa Cruz. We didn't know it at the time, but Claire's regression had just started as we unpacked the boxes and tried to get to our new, and fulfilled groove in Santa Cruz. The best that I can explain my relationship to Rett syndrome is to that of an alcoholic working in a bar because somebody is holding a gun to their head. I've always loved to work. I had a full time job as a salaried banker lined up 4 weeks before I graduated from high school. I was blessed with a situation where my parents begged me to just go to college and enjoy being young. But no, I chose to work instead of have fun. So with that as the context, I had a very playfully productive week last week!!!! I am so proud of myself that I just had to share it with you all. Please note that I wish all of you would come join us for some fun, as I am figuring out, it is something that is much needed if you are going to survive the rett roller coaster. So here is the week in pics, Monday we went for a walk and it was so nice we decided to go for a walk again on Tuesday, these are pictures from two different days if you can imagine.
Wednesday Claire had ABA at home, but her screaming and having other people in our house didn't stop Chloe and I from having our first (and I doubt last) princess dress up fashion show.I don't have a picture for Thursday, we went to Music Together and it was really depressing, despite Chloe being undeniably adorable. I am sure it will be a blog in the future, maybe once class starts and I get through one without crying, but for the record, I attempted to have fun. Friday was a surefire fun day! We started at the beach with some friends, then went to horse therapy, which I know is technically work, but our insurance pays for it and we pay the rest privately, so it seems more like a fun thing than a state granted therapy that you have to meet goals for. Captain Awesome joined us, he is always good for a big dose of fun!

Drum roll.... on Saturday I went for a message, not because my back was so bad that I couldn't move. More because I wanted to, I knew it would help to keep me from that place where I get stuck in bed for days on end and I could, so I did. Because I am a crazy person, I requested to listen to Mumford and Sons which was really, different, but yes, fun! Now I am leaving, just before dinner, to go have a cappuccino at Verve and play on our new iPad and try to figure out what it does. Huge thanks to Captain Awesome for making each of these fun days possible and for helping me remember how to laugh.

This much I know, it wasn't boring

I just looked at the calendar and noticed that on Saturday, it will be a whole new year, wow, that was fast! I have to say that all in all, I think it was a good year for us. It wasn't easy and certainly wasn't boring. It started off a little rough. I was in a terrible amount of pain from injuries I had gotten in an accident the previous March. After having a really great trial with the Eco we had to send it back and again, Claire had no voice, which she found very frustrating. Chloe was just starting to really do all of the things that Claire had once mastered and then lost which felt a lot like having my heart constantly ripped out and stomped on. However it was through that craziness that I got back to a place where I started to feel again and I can not say how wonderful that has been. I think I had been pretty close to a zombie, trapped on a hamster wheel of survival for a solid 2 maybe 3 years and this was the year that I got off. February was really the month that changed the pace. First I had surgery on my wrist which really helped once I recovered. Since I wasn't much use with one hand I got to sit and have my tattoo finished, which was such a good way to really feel, I am still surprised at just how therapeutic that process was. Then we had Erika's Dream which was a lot of fun. There is something so rejuvenating about being around our Rett family, they just give life. Then Make A Wish sent Claire and our family down to Disneyland to meet Ariel. That was a game changer, really, Make A Wish is awesome. The way that trip encouraged and inspired Claire was transformational, it gave her the confidence that she carries today. I think it was around the end of March that the Eco came, that was also a huge part of this year. I can't imagine life without her voice, even when it is annoying and she says the same thing 30 million times in a row, I love it! I would have never imagined that Claire would be teaching her sister how to say silly things, but with the Eco that has happened. Chloe has grown by leaps and bounds by the minute the whole year through. She is such a sweet and caring little girl. I have loved getting to know her spirit and seeing what is possible when all the DNA gets in the right order, it is amazing! Before Chloe I honestly didn't get why people would want to have so many kids (more than 2) but now I can say that it makes a lot more sense. No, that is in no way an announcement, we are very content with 2 little girls, if I were to guess, the next thing we add to the family would be a male service dog. Back to the story, this summer I had my first and most likely last trip to Las Vegas. I got to spend time with some of the greatest moms that grace this planet today and with no kids! Erica dubbed it the rettaway and I am hoping that something of that nature lines up again for 2011 because it was epic. I think that one of the defining things of the last year has been the deep friendships that I have made within the rett world. Even though many of them are not really close, just knowing that there are others out there has given me great peace and I love you guys so much! If there were a metaphor for this last year I would compare it to a scab. The injury wasn't super fresh, but it hurt. As it heeled and peeled off it was a different kind of fresh hurt, but I could start to use it more. After this year of having the scab picked off and regrow and eventually heal, there is still a little scar tissue, but I am functional. I am excited for 2011. If there is anything that the last year taught me it was that I don't dream big enough. So with that, I suppose that I can't even start to think about the fun and exciting things that will take place in the next year, but I know that it is out there, and I am ready for it! I am hoping that among the fun stuff for next year is a trip to Boston in May and since I am working on the whole dreaming big thing, I am going to through out that I hope they announce the cure while I am there, that would be really, really cool! Final thought, I have decided that Sigh No More by Mumford & Sons was my theme song to 2010, so here are the lyrics for you.

Serve God love me and mend
This is not the end
Lived unbruised we are friends
And I'm sorry
I'm sorry

Sigh no more, no more
One foot in sea, one on shore
My heart was never pure
And you know me
And you know me

And man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing

Love it will not betray you, dismay or enslave you,
It will set you free
Be more like the man you were made to be.
There is a design,
An alignment to cry,
Of my heart to see,
The beauty of love as it was made to be (x4)

Field Trip!

Since Claire has started kindergarten, she has 35% of her day in inclusion with a mainstream kindergarten class. Last week they went to the children's discovery museum and Claire got to go along for the whole day! I knew that I had to go guarded but that I would have to go. I drove Claire, her aide and another little girl from the class. Lucky for us, there was an accident so the 40 minute trip took an extra hour and used up all of our boredom margin in the process. Once we got there is was a little rough at first. The first exhibit I saw the kids playing in was the access/ABILITY. This was the exhibit that the teacher was so excited about for her peers to see. See it they did, one girl played in a pediatric wheel chair and wheeled her self around. How horrible is it that I watched this all I could think is, that is hardly disabled, sure they can't walk, but that's it. Show me a blind person with CP, that is disabled. I don't really think mean things about people who are confined to wheelchairs. really, I have friends with that singular handicap and it by no way shape or form easy. It just seems like what we have is so hard! So hard that an exhibit would never even think about ABILITY on our level, what it takes to get Claire to participate in life. So with that I sat hiding in a corner after a short time I could hear Claire as she was clearly not happy and her aide didn't have a clue. I stayed back and really tried to let Lupe, the aide, do her thing, but she didn't so I stepped in. I have to remind myself that Claire is in an autism classroom and the aides are trained to work with that population, it is easy to forget that Claire works very differently because similar behaviors present. So Lupe was trying to calm her sensory system when I stepped in. I asked a few questions and figured out that Claire was lonely. Lupe had been playing one on one with Claire, while Claire wanted Lupe's help to play with her friends, a very different thing. Once we figured that out, Claire did a little of her heart wrenching sad crying and calmed down. I can't imagine what it would be like to be 5 and want to play with your friends and just not have the ability to get the grown ups around to help, so I really think the screaming was fully warranted. I took them to find the classroom teacher Mrs. J who would know who Claire's friends were. She pointed them in the right direction and Claire was happy as a clam. The teacher also took the time to ask me questions about placement and weather or not Claire was in the most appropriate class. I know she was well intended but it pretty much came across like, "I don't think this is good for her." Sigh. I know it is hard, but sadly, it id the best option and it took me about 15 minutes to explain this to the teacher, not sure that she ever got it. Claire went on to make a corn husk doll and play in the clay room where she again got a little upset, only because she was starving and a little snack fixed that quickly. By that time I had also showed Lupe how to use the yes/no cards, that helped a ton! We finished up with face painting, where one of Claire's friends, the little girl in the car with us, painted Claire like a tiger. Claire loved being a tiger, loved! We sat and enjoyed lunch on a park bench with her peers and left happy. I am so glad that Claire gets over things faster than I do, her perseverance continues to amaze me. In the end, we did it! We went to the museum and we left with smiles on our faces, I do think that it will be a long time before we go back though.



On a side note, I want to share this very exciting research. It pretty much says that what we are doing really works. Putting Claire in a rich environment really is critical to her brain development, so we will most likely continue to torture ourselves with fun stuff like this until we get the medicine in the trial, in which case hopefully we will be able to do the same fun stuff, it will just be less torture because her brain will fire better.

Clinical Trial For Rett Syndrome Launched

Study marks the emergence of disease-modifying treatments for autism spectrum disorders

BOSTON, Dec. 16, 2010 /PRNewswire-USNewswire/ -- Researchers at Children's Hospital Boston have begun a randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome, the leading known genetic cause of autism in girls. The drug, mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), is already FDA-approved for children with short stature due to IGF-1 deficiency.

The trial, now enrolling patients, marks the beginning of a trend toward drug treatments seeking to modify the underlying causes of autism spectrum disorders, rather than just behavioral symptoms such as anxiety or aggression. It follows research in animal models, published in 2009(1), which suggested that raising IGF-1 levels can reverse features of Rett syndrome by enhancing maturation of synapses —the points of communication between brain cells.

"We expect that therapy that stimulates synaptic maturation will serve as a model for pharmacological treatment of not only Rett syndrome, but of other autism spectrum disorders," says Omar Khwaja, MD, PhD, the study's principal investigator and director of the Rett Syndrome Program in the Department of Neurology at Children's.

Rett syndrome, occurring almost exclusively in girls, is an X-linked neurodevelopmental disorder causing severe cognitive, motor and language problems and autistic behaviors. Other features include loss of purposeful use of the hands; repetitive, stereotyped hand movements; slowed brain and head growth; and heart-rhythm and breathing problems. Although affected children appear normal during their first six months of life, symptoms emerge, tragically, between 6 and 18 months of age, a prime period of synaptic development.

The three-year pilot study will randomize 40 girls (aged 2 to 12) with Rett syndrome to receive the drug, known as Increlex® (Tercica Inc., a Subsidiary of the IPSEN Group) for five months. The study will use a cross-over design, allowing girls assigned to placebo to switch to active treatment after a six-week "washout" period. The main outcome measures will be improvement in neurodevelopment and in cardiorespiratory function.

Although Rett syndrome used to be seen as a degenerative, irreversible disease, recent research indicates that brain cells aren't actually lost, and the brain is structurally normal – instead, the synapses between cells are weak, preventing brain circuits from maturing. Rett syndrome's usual cause is mutation or deletion of a gene called MeCP2, which itself controls a group of genes that regulate synaptic changes in response to input from the environment. In 2007, working with a mouse model of Rett syndrome, researchers used genetic tricks to restore MeCP2's function in the brain.(2) The mice showed a striking recovery, suggesting that Rett syndrome, even when well established, might be a treatable disease – if only synapses could be built back up.

"This was an enormous intellectual proof-of-principle that we aren't wasting time thinking of therapies for girls who are already symptomatic," says Khwaja. "Before, it was thought that if there ever was a treatment, it would have to be given before symptoms appeared, and that once the disease started it couldn't be reversed."

IGF-1, the drug used in the trial, is indirectly regulated by MeCP2. It has been shown to enhance synapse maturation, and in mice missing the MeCP2 gene, treatment with IGF-1 ameliorated several features of their Rett-like disease.(1)

"There's been a big sea change in how Rett syndrome and other neurodevelopmental disorders are viewed," Khwaja says. "The synapses are very dynamic. They need to be stabilized, and if they don't receive the right stimulus, they'll naturally disappear. That change in paradigm has really affected the way that we look at treatments, and I think it brings a lot more hope."

The new view has already affected the way schooling and education of children with Rett syndrome are being approached. "There's more and more evidence in animals that enrichment and schooling can help synapses form and strengthen," says Khwaja. "The battle is getting the girls into appropriate educational settings. If you are repetitive, and give them ways to communicate, they actually can learn, and that's probably because you're reinforcing these synaptic connections."

The clinical trial is funded by the International Rett Syndrome Foundation, Autism Speaks and Harvard University's Catalyst Pilot Awards for Clinical Translational Research. For information on enrollment, contact Katherine Barnes (katherine.barnes@childrens.harvard.edu; 617-355-5230) or visit www.childrenshospital.org/rett.

LPCH, where everyone's the same

Yesterday was a pretty routine day for us, with the exception of a little trip over the hill to LPCH for Claire to see the eye doctor. Jared decided to take the day off so that I would be spared from taking Chloe along to Claire's appointment. After dropping Claire off at school we started the day slowly with coffee and a walk down to pleasure point, to say that it was epic is indeed an understatement. As we walked and enjoyed the sound of the waves gently crashing we did the download on all that the day contained. I really wasn't that worried about the trip to the doctor. It was a routine appointment and the worst that would come of it would be glasses. Funny how even on a good day, with the sunshine on my face and my husband by my side to help, deep down in there was a little bit of fear. We have so many memories from LPCH. Most of them involve needles and Claire or some sort of doctor telling us how worried they were. As much as I tried to believe that today would be different, a little voice inside me quietly whispered, she still has Rett syndrome. With that I was able to soak in the beauty of our morning walk and knock off a few things on the to do list before it was time to get Claire and start on the day's journey. We didn't have much traffic and we actually got there on time, which in itself is a small miracle. After checking in it was time to do what everyone else in the busy waiting room was doing, wait. It is an interesting area due to the variety of doctors serviced by that area. The lab is there, so you can hear young kids screaming as the friendly vampires do their best to stick them with needles and suck their blood in the gentlest of ways. There were a few people in wheel chairs and lots of people with glasses as the clinics that were open today were the orthopedist and the optometrist. A sweet and healthy little boy that was standing in front of us turned to look at Claire and said with so much care in his tone, "Did you break both of your legs?" She smiled and I told them that they weren't broken and he smiled and walked away. One dad that was patiently waiting struck up a conversation with me, he was there with two of his kids. They are both in different stages of the scoliosis surgery process, his eldest child also has scoliosis but hasn't had the surgery, yet. Got me thinking, they looked like such a normal family, kids dressed in varsity gear from the local upitty Palo Alto high school, but none the less, they were sitting in the same waiting room that we were. There were also families that looked to be of far more humble means. As I said to the father that I was not in line and that he could go, his son translated for him. There were people from so many different backgrounds there, so many different medical challenges. Reminded me of how we are all the same, so vulnerable, so helpless when it comes to our children. Finally we were called back and Claire was her 85% of the time wonderful little self and did everything that the doctor required of her. When we got around to seeing THE doctor she was so excited to see Claire. She remembered us from 3 years ago (memorable in a good way I hope) and that she was so glad to see that Claire was doing so well. That is code for "we expected her regression to be much worse and for Rett to have taken a lot more" but at least she chose to put it politely. I am also very glad that Claire isn't doing worse as they all had expected. So we took our script for glasses, packed up all of our gear and piled into the Smart car. We paused under the big tree before driving home to marvel at the leaves, to put it all back into perspective, that we all have a lot, that God is bigger than us and that He loves us enough to make really great children's hospitals that everyone can afford and then we drove home.

Mission Accomplished, well sort of

We did it, Claire had fun at her first birthday party with her peers. It was a little awkward to walk in as I had no idea what the birthday girl looked like or who her parents were. Claire goes off to class with Donna in the mornings so I haven't really met many of her friends yet. It was pretty crazy when we got there, kids running around like crazy, balloons all over the ceiling and Claire got overwhelmed pretty fast. Good thing I thought ahead and invited the amazing Sara to join us, she is our ABA trainer and is so good at helping Claire to calm down. We went for a walk and Claire came around pretty quickly. She is so brave, she went back into the party with a big smile on her face. We opted to watch from the window of the dance studio. It was pretty fun to watch the other kids dance, they had no idea how to break dance, but they sure tried! I always love seeing her bright smiling face after we do things like this with the rest of the world, but it always makes me sad, really really sad. I hate that the world doesn't know what to do with anyone who is different. One of the girls who is a friend to Claire asked why she wasn't feeding herself the cake with her own hands. On one hand it is sweet that she thinks that Claire should be able to do it, on the other hand it is so screwed up that she can't. I hate this game of having to walk on the edge, trying to keep one foot in the world of the typical people, where I know Claire loves to be and the other foot rooted safely in rettworld. I keep telling myself that this will get easier with time, and while I do believe that it true, I know that it won't get to the place where it will be easy. I guess I get the privilege of grieving for the rest of my life or so I hear. No time for that today though, we get to go to Jared's company Christmas party tonight. Two parties with the normal world in one day, I think I will be done for a while after this :-)


Here is a little clip of the kids dancing, you can't really see us sitting in the mirror, but Claire had a huge smile on her face, promise.

Happy Holidays!

I honestly didn't think it would be possible, but we had a great Thanksgiving. Even better than that, we had a great Thanksgiving weekend. I knew that we were going in the right direction when Wednesday started well and before things got out of control, Jared called saying that he was on his way home. I got the pleasure of leisurely shopping all by myself for those last few things I had forgotten. One of the great things about living in hippieville is that they all grow their own organic feast so they weren't all in Costco, it was creepy how few people were out, but it was good. Since I was relaxed and had time to do whatever I wanted, I went to Whole Foods to get some cheese and olives so we could have a nice antipasti for dinner. Much to my delight, while I was there they announced that the fisherman had just caught a bunch of crab that morning and he was there selling them, already cracked and cleaned. How could I not? It was such a great end to a day, just a Wednesday, but none the less a day that we decided to celebrate. I think that part of why I have such a hard time with holidays is because it sometimes feels forced. Be thankful NOW give gifts to people NOW and the only reason why we do it on that day is because everyone else is. Of coarse it is fun to do what everyone else is doing but sometimes you just don't feel like it. With the history of Thanksgiving day being as sad as it has been, it felt so good to genuinely celebrate the day before it. It just felt good to genuinely feel, something that is really hard to do when you are as tired as I am. So with the momentum of our crab feast and two happy little girls we went into...dundundun...the holiday, and it was good. I got to cook all morning at a casual pace while Jared watched the Macy's parade (which makes my skin crawl) with the girls, it felt like a pretty normal family, weird right? We went to a friends where we deep fried a turkey, which is awesome, vasts of hot oil make everything better, Chloe played with Luke and Claire fell asleep watching football after showing off her super awesome standing skills. We went home super full and it was good. Friday stated a little slow, we didn't know what to do and somehow we ended up going shopping. You didn't think I was going to say THAT did you? Claire and I hit the Carter's store for a bunch of super comfy clothes for both of the girls, we even got matching holiday pj's (see flickr to right). Feeling the exhilaration of having completely lost my mind, we went to the BIG mall. I have a special place in my heart for The Body Shop. Jared loves me so much that he dropped me off and fed Claire lunch while I went in there all by myself! The smell of that place takes me back to my senior year, back when I could take 4 bathes a day if I wanted. I did the unthinkable, I purchased 4 things and they were all for me. I have made an early resolution starting today, I will take a bath or a long enjoyable shower at least once a day. That's right, I am going to take 20 minutes every day just for me, I am so excited! I am completely amused that it took black Friday to get me to go out and do something like this for myself, God does have a good sense of humor. The weekend was great as well, I enjoyed a bath, Claire and I went to see Tangled and we purchased our first Christmas tree in the last 10 years. We also went out after bedtime to look at the lights in the park and watched some football. I am so content and relaxed and ready to soak in the advent season as well as the festival of lights. Sitting back today reveling in it, knowing that it might be another 5 or 10 years before we get this again, so I will bask in the glow of a holiday gone well for as long as I can. To those of you in that special place in my heart, the ones with daughters younger than Claire, please have hope, there is life after Rett Syndrome, it is different, but it can be good, the potential is still there!

Down and Up and All Around

I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!

Thankfulness Gifts 2010

I love gifts, I really love giving gifts. I think it might be because of how I grew up, my mom was really good at picking out gifts that made you feel like she really knew you. She always managed to pick things out that I had not even thought of, but were just what I needed. I am still working on honing this skill and it is hard when time is restricted by the two little girls that require much from me. This year I opted to do thankfulness gifts for all of Claire's entourage instead of something at the holidays. I chose to do this because I don't get why I would give people a gift for a religous holiday when I have no idea if the people that I am giving to celebrate the same holiday. I also want to make it clear why we are giving the gifts, because we are thankful for them, as opposed to some sort of guilt induced commercial hype that motivated me. So this was our week and it was great! We gave jars of raspberries in a light honey syrup that we had made during the summer break. Truly, the best part about giving is seeing the receivers eyes light up and a smile come across their face. I didn't get to see everyone as Claire distributed them around during school, but I am pretty confidenet that she really enjoyed seeing those faces herself. Now with all of the gift giving done, I am free to savor Thanksgiving and the advent season, and I am really excited about it.

Mainstreaming

Mainstreaming is a concept that is at the forefront of my mind right now. Claire has recently started to spend 35% of her school day in the "mainstream" environment. So far this has been both a blessing and a curse. Claire loves being around the kids, considering that the rest of her time is spent in a small class with a lot of autistic boys that scream a ton, I can understand. Yesterday it was warm here so I sent Claire in a dress. I didn't think to put shorts on because it is hard enough to do everything to get her on the potty as it is. Somehow, in transitions from circle to a chair, some of the students observed that Claire was wearing a pull up. I haven't heard the full story but there were a lot of questions and Claire got embarrassed and upset. This morning the teacher from the autism classroom who really gets Claire went to talk with the mainstream class, answer their questions and close the discussion. I know that she is made of some tough stuff and that she will be alright, hopefully not scarred for life. Just because she had a hard moment, I am not going to pull the plug and put her back full time in the autism class. Easy to say when I am talking about Claire. This morning I went to BSF (Bible Study Fellowship) as I do every Wednesday morning. I had looked into getting into BSF when we first moved here and I had a normal life and was looking for some friends. Unfortunately childcare started at age 2 so I had to wait. By the time Claire was 2 the option of sending her in for 2 hours was not an option so I didn't go. Rather my life was dominated by children's hospitals, therapy appointments, IEP's and eventually grieving. With the start of this school year it felt like a lot of the dust had settled and I was ready to try to step out of my rett bubble and be part of the world. (Huge thanks to Chloe for this, without her I don't know that I would have attempted this!) Since BSF now takes younger kids, it was a good fit. I could get a two hour break from Chloe and spend some awake time really seeking God. I hadn't really thought about it, but this really is my attempt at mainstreaming and honestly, I am not sure if I am cut out for it. Today I went out on a limb and shared a prayer request since there was a little extra time at the end before we went to go listen to the speaker (we meet in a small group then all gather). My request was for prayer for me in light of the Thanksgiving holiday, that it was that day three years ago that Claire fed herself her last meal. I really want to be real and genuine in all areas of my life and it seemed like this request was just that. I got a few responses, one woman said "That's heavy" and another just smiled and said that she would pray. Another turned to me as I tried to bolt for the door and walked with me. She really did try to help. Unfortunately she tried to encourage me and tell me that it would be alright. She went on to say that these circumstances could be protecting Claire from becoming a drug addict when she gets older or some other hard thing. Gotta say this made me so mad! Why is it that people feel the need to cheer you up and encourage constantly! As if there is some sort of social force that says that hard is bad and that everyone should walk around happy all of the time. AAAAAAAHHHHHHHH!!!!!!! I love to be happy, I am often happy. Not always and that is alright. Certain days are harder for me and I am choosing to allow myself to feel as I go through rettland and everything else in my life. I really feel like telling those over positive encouragers that they should try it to. I know that they are well meaning, just like the kids in Claire's class who ask tons of questions, but it still makes you want to run and hide. I don't think that I am going to give up on mainstreaming yet, but it is on my radar. We might be moving into the middle of nowhere and starting a rett compound, where there are lots of extra outlets, so all of the girls can sit around and chat on their talkers. There will also be horses and a garden dedicated just for crying.

That Went Well

No surprise that so far, today is going better than yesterday. Yesterday there was no school, which immediately makes a day hard. Then we drove 45 minutes to see a doctor and Miss Amazing remembered the wrong time and doesn't seem to be able to read so we showed up at 10:30 for a 10am appointment, which I then rescheduled for the end of November. We then rushed back home to get to OT instead of doing any number of more fun things, to find out that the OT left a message at home, she was out sick, sigh. Not today, today is so much better so far! Today was Claire's first day in her new class. I think it is pretty safe to say that I was more nervous than she was. I know so much more about rejection and how mean people can be than she does. I remember being laughed at in 1st grade. The thought of her having to endure such pain, on top of already having to deal with a lot just makes my heart sink with weight. But this morning we had our act together. We were in the car and rolling even a few minutes early after enjoying an easy going breakfast as a family. Just to clarify, breakfast as a family consists of the girls eating oatmeal that Jared and I feed them, Jared also drinks coffee. It just didn't involve vomiting or screaming or a tantrum of any sort, which was nice. Even the walk down to the car was nice this morning. It was 40 degrees which is my idea of a perfect morning temp. Cold enough for the air to have that crisp clean feel, but not so cold that you can't breathe it in. The fog was in pockets throughout the redwoods and burned off as we got closer to town. We pulled in and there was a blue spot open for us (I was a little worried about that) which was nice. Another blue placard holder, sneered at me as I got out, clearly, it was her spot. We were early, really early. But Claire really wanted to go, so we loaded up and went to sit outside the class. She obviously hasn't learned the trick of sneaking in just as the bell rings so as to draw very little attention to oneself. She rolls up and immediately three little girls come to say hi. Not in a hi sweet little baby sort of a way, more like a hi Claire what's up sort of a way, it was great! She's the popular kid. Seriously, how did I end up with the popular little girl that wants to be covered in pink glitter, loves art, horses and dogs, how can this be?!?!?!?! But I did, and she is great. I have to say how laid back the parents in that crowd are. They look way more rested than the parents at the autism school drop off. It was really nice to be part of that parent crowd. There was a very easy going feeling about it. I am really excited for Claire to get more time with the typical, more laid back kids too. I imagine that as she hears them speak and act, that she will have the affirmation of being around people who are just like her.

The Beautiful People

Today was supposed to be the first day that Claire got to go to her inclusion class for an hour to start the day. Unfortunately, her aide that was trained for it couldn't be there today so we postponed the start until Tuesday next week. Side note, this works out well because Captain Awesome and Miss Amazing completely forgot to set an alarm and woke up an hour late today. When we decided to postpone yesterday, we completely forgot to tell the new teacher, Mrs. J, oops! So this morning I get an email from her, asking where Claire was, understandable. She also added that she wanted to be notified so that she can not make extra copies for Claire on days she will miss, today it was one piece of paper. I have to admit I was a little irritated by this. I have a sort of full plate, sometimes I miss things, I am after all human. So I responded and explained what had happened and offered to stop by after school to pick up the missed activity. Claire was very excited to show me her new classroom, she is over the top excited about kindergarten! The teacher gave me the activity and explained it. I verified that really, really, Claire is planning to come to class on Tuesday. It was then that the teacher politely reminded me that Claire should arrive at 5 minutes before 8 and that she is very strict about students coming late as it is very disruptive. I have to admit, at first I was a little mad. I have to drive 15 minutes to get to school and traffic is randomly very heavy, adding an extra 10 minutes. Claire has to have her meds in the am, stretch, walk, eat and get dressed before leaving for school. It is a miracle we make it on time as often as we do, on average about once a week. I really felt like this teacher had no appreciation for all the stuff that I have to do for this little girl, just to keep her alive and sorta well. Then it dawned on me, Mrs. J is no different than I was 4 years ago, back when I had a healthy 1 year old little girl and no idea about people with disabilities. My next thought was one of those huge, mind bending thoughts, that really made my brain stretch. She is treating Claire like all of the other kids, isn't that what I want? With that, both my brain and my heart exploded. This is real inclusion. The teacher is putting the same expectations on Claire and her mom as she is the other students, what an honor. I guess I figured that I would always have to fight for Claire, that people suck and don't get it and that life would be an uphill battle. I am so deeply humbled as I stand corrected. As I have been soaking in this idea of respecting other people enough to assume that they are not being disrespectful or malicious, I was hit again. Mrs. J replied to an email that I had sent. I had written a letter to go to the new classmates and sent it for approval. Her response was that it brought her to tears and that she would send it home with the students. She also invited Claire along on a field trip that is being planned for December. The class is going to the children's discovery museum. There is a visiting exhibit called accessAbility. She wrote "The concept is that kids can get an experience of what it is like to live with a physical difference and explore the similarities and differences in the ways we each participate in the world in." All I can think to say is wow, I am truly blessed. Claire is surrounded by a lot of really beautiful people. Looks like with my whine and cheese, I'll be having a big helping of humble pie too!

Ah, November at last!

Don't get me wrong, October was a lot of fun. It was just a lot! My poor little brain is still pretty sore from just how much was in October. It was mostly highs, with a few lows, it was just a lot. I am so glad that November has come, Thanksgiving has always been my favorite holiday and I find the transition at the end of fall to be remarkable. The last three Thanksgivings have been the exception. The last meal that Claire fed herself was Thanksgiving 2007. Ever since then, I have had a hard time even thinking about it. But Claire is doing so well right now, after the huge success of the birthday and our first year of trick or treating, I am thinking that we are on a role. It also helps that Chloe is coming into her own, for lack of a better way to say it. She has given good balance to our family. Chloe has also taken me to new levels of exhaustion as I struggle to balance making everything super accessible for Claire and out of reach for Chloe (certainly a battle I will forever loose). As the wind dies down and I attempt to savor the season and all of the wonderful that my life is, it is hard. I don't mean that it is hard to savor, I mean that life is hard. I am wrestling with the concept of living in a storm forever. Of coarse there are good days and bad days. But the good days aren't easy, we just smile and laugh more. So the question swirls in my head, how do I live in a storm. I have heard "Life's not about waiting for the storm to pass, it's about learning to dance in the rain." and I hate that phrase. It is cute and if it gives relief in a hard moment then great, honestly I love rain, the thought of dancing in rain makes me very happy. But storms are hard. Feeding Claire for at least 90 minutes a day is hard. Balancing everything that it takes to keep Rett Syndrome from eating her alive is hard. Trying to be something more than a caregiver is hard. I think I am getting to a good place where hard isn't bad, it is just hard. My hope is that I can take that, and enjoy the beauty of my storm. Much like the monsoons that I grew up with. There was awe inspiring lightening that would fill the sky. Water would blow so hard it would go under the doors, trees would blow over, cactus would be uprooted. It was such a demonstration of beauty and power. It was great to take in, but putting the yard back together was sure a chore. Replacing roof tiles, getting the furniture out of the pool and so on. I see the next few months as a bit of a monsoon for us. It comes around the same time every year, is fairly predictable, there is always wind and lightening and a terrible mess. That is what my life feels like on Rett Syndrome, a monsoon. However, I have learned that if it starts to hail, I will not put on my swim suit and go dance in it. Yes, when you live in Arizona weather really is that exciting, and I was young, but I learned my lesson.

Perspective

Three years ago today the phone rang. I saw that it was LPCH and figured it was somebody to either set up an appointment or remind me of one that we had. You can imagine my surprise when it was Dr. Suttcliffe. She was calling to let me know that the test had come back for Rett Syndrome and it was positive. WHAT?!?!?!?!!!!! You see, three days earlier I had sat in our neurologist office, it wasn't that big of a visit. She had told me that the test for Rett Syndrome was negative and that Claire seemed to be doing well, so we could come back in a year unless we needed to see her about something urgently. So what did I do, what any parent would do, call another specialist for a third opinion. We were scheduled to see genetics in a few weeks, so I called them to be a tie breaker. When they called there was all sorts of apologizing for the mistake, but it was true. She had Rett Syndrome, we could stop searching for the problem. At this point, I had no idea what Rett Syndrome was, none. I had taken the approach of not looking anything up until we had a conclusive diagnosis. So I googled it. The first thing that popped up was the International Rett Syndrome Foundation. I went to their website and looked around a little bit. I remember feeling so deeply relieved, this didn't seem that bad! I read about how they couldn't toilet independently. I thought it wouldn't be a big deal to help her unbutton her pants, maybe we could just go elastic. I had no idea that she would not have the ability to walk in there and sit down on her own, I figured it was coming. The next morning I went to Bible study and shared how overjoyed (DENIAL) I was that the search was over, we had a diagnosis. One of the ladies in our group told me that there was a story about it on the front page of the paper. I thought that surely she was confused. This is super rare, not headlines in a small town rare. I was wrong, there it was Madelyn's Dream. There was a whole gala for Rett Syndrome that week, 8 minutes from our home. We wouldn't be able to go for the dinner, so I emailed the lady organizing it so ask if we could attend without paying if we left before dinner. I think my phone rang 30 seconds later. We talked for almost an hour. Later in the week I got a call from Paige, who had a daughter Katie, as in Katie's Clinic, I wasn't alone. Through the whole thing, every day of the last three years, I have been in awe of the people that I have crossed paths with at just the right time. I have learned a lot about the "system" and how to be in it but not defined by it. Claire has taught me to slow down, to notice the smallest muscle movement when she is trying to help. It has been a very long three years and I am very tired. But I am still strong, not because I am some sort of freaky superhero who feels no pain and advocates relentlessly. It is because I have started to feel the pain, because I know that I will never be enough and that I am dependent on my creator. I know that He has put each of you in my life to help me through this storm. As much as I wish the phone never rang 3 years ago and that it was just environmental and Claire was in regular ed now, I am so deeply honored to have met each of you, my rett family that I am on this journey with. I love you all so very much.

The Pearl

I know that I have been super bad about posting lately, I promise I really am trying, it just doesn't seem to happen. I feel like a huge update is due but it is too much to take on right now, so I will just stick with this little slice of the story. Today, the highlight of my day has been Ducati. Weird right? For many years I have had a love hate relationship with that word. It is the company that Jared works for and it pays our bills, for which I am very thankful. A lot of the time I feel like all the work might not be worth it and that is when I have a more hate relationship with it, but today it is love! Let me give you a little background. Jared LOVES motorcycles. In fact, that is how I hooked him. I was the only girl in our school that pretended to like motorcycles, so he talked to me, and my evil plan worked, a plan that began in 1997. Soon after we married Jared got his first bike and has always had one since then. I have always said that I couldn't be married to him without it because he gets so cranky when he hasn't rode in a while. Enter life, he is at the top of the motorcycle world. In December we purchased the bike that he always dreamed of, 'the pearl'. Jared thinks that he is a pirate and likes The Pirate's of the Caribbean way too much! So he has a blacked out bike that he named after the ship in the movie. He really loves this bike, he takes pictures of it by the ocean he likes it so much. Through this whole little Rett shitstorm it has been his outlet, the closest thing to therapy. So you can imagine the fear inside me when I figured that we needed to sell it. The accident that I was in 18 months ago has been very expensive and we still haven't settled, so we need money. Lucky for me, Jared has been hating his job lately, so he quickly warmed up to the idea. Not only did he warm up, he sold it within days! When we got up this morning, the wire had come through, the pearl was sold. We both felt a huge sigh of relief, happy that the whole thing went so smoothly. I am so proud of Jared! He has really let go and moved on in the healthiest way I can imagine. He is looking into mountain biking and some other things that he could do to get a release, he is even getting excited about taking both girls out for bike rides so I could stay home ALL BY MYSELF!!!! I have to admit I really like that idea. As I have a huge grin on my face because I feel like I have won the battle against Ducati, Jared says he got an email (which are normally Ducati related, back to resenting). There is a dealer in Florida that has an open house every year. I guess he just woke up and thought he would do something super awesome and is doing a raffle and silent auction because of Claire, to benefit IRSF. Wow! I think that the part that has meant the most to me is the wording that was used. You can click here to see the newsletter that went out and the explanation of the event. So now the pearl is gone and Jared is feeling loved by Ducati, can a girl have her cake and eat it too?

Too Marvelous!

October is Rett Syndrome awareness month and I have a team for the strollathon, so I put together this little video to help promote my fundraising page. It certainly wasn't an easy process. Going through old pictures, remembering all of the things that Claire used to be able to do. How she would feed herself, hold her cup and push her little wagon around. It got me thinking about everything that Rett Syndrome means for me and our family. Sure, it is a pain because we have to do so much lifting and it takes forever for her to chew, meals feel like an eternity. Then I look at her, I love how she reminds that nothing has changed. Sure she can't talk or use her hands, but nothing has changed. Claire is who she is and today, other than allergies, she is doing very well, and I am so in love with her!