Scary

I don't know about your life, but one of the most common things that we talk about is yesterday. We are often updating therapist or just reliving fun stories and today was no different. As it turns out, yesterday was a pretty big day for us. First off, Tangled came out. So Chloe and I ventured all of the way to Target to get it and talked all day about how we had to wait for Claire Bear to watch it, it was a pretty big deal. Chloe really liked her Tangled themed coloring book, I assume because Rapunzel has wonderful hair and there is a horse. None the less, Chloe was excited about the movie. Claire had had a pretty rough day at school and fell asleep as we watched, she did see it three times in the theater. Pretty quickly Chloe opted to watch from the kitchen, only occasionally peeking out to actually look at the tv. We talked about how it was scary and that it was alright to hide. With Claire asleep on the couch and Chloe playfully dancing to one of the songs in the movie, I thought I might run into my room for a minute. I heard a sound, an unfamiliar, run too it as fast as you can sound. As soon as I turned the corner I saw Claire's poor little body convulsing/ jerking. Her arms were in sync going up and down and she was foaming at the mouth. She stared out the window, there was no connection to the world that was around her and just as quickly as it happened, she was back asleep. I immediately called Fairy Mary and after talking I really do think this was her first honest seizure. After 25 minutes she slowly woke up, but her body did not. She was so floppy and jerky and Jared had to hold her in his lap and steady her head while I tried to get her a little dinner. We ended up having to lay her in her bed because it was the only safe place for her, heart wrenching really isn't adequate, what Jared and I felt was something worse than that. I kept thinking about poor little Chloe as this went on, Claire required both of our attention and Chloe just got the scraps that night, it isn't always like that, but I feel like it really should never be that way either. Claire slept it off and woke up to a new day. She was back to her normal self, she even opted for two layers of nail polish, first pink, then purple glitter, a true sign that nothing was out of the ordinary. Sara our ABA trainer was here (I would never put two coats of alone with them both!) and chatted with Chloe while the nail polish was drying. The discussion quickly turned to Rapunzel. Chloe said in the cutest, almost two year old tone, 'it was scary'. While I admit it is scary, Disney does a great job of creating antagonist for a thrilling story line. But she saw Claire's seizure. She saw Claire weep and scream as she struggled to control her body. Yet, that didn't seem to evoke feeling of scared. She can walk up to Claire when she is screaming at 110%, give her a hug, tell her she loves her and then turn to me and announce that Claire is sad. So the word for yesterday will be scary, for Chloe it was the creepy evil lady in the movie, for me it is the mecp2.

Now and Then

This past weekend we had the pleasure of journeying up to Oakland for the natural history study that Claire participates in twice a year. It is a fun time, we get to see people that we don't see often but love very much. We have a few friends that are very close in age to Claire and it is always interesting to see what their path has looked like and what rett has thrown their way. When you are dealing with hard stuff it is always easier to deal when there are other people who get it and in similar circumstances. Soon after we arrived on Saturday, Fairy Mary (also known as the unbelievable Dr. Jones) told us that there was a family that we had to meet. I really didn't think anything of it, until we met. Her name is Lucy, she just turned three and is the closest thing to Claire that I have ever seen in my life, she was wonderful. It feels like my life goes by very slowly, so I don't often see the change, but Saturday afternoon it smacked me in the face. I didn't realize that Claire had grown up until I saw this sweet little girl who had just turned three. She still had a stroller just like Claire did at that age, she also had the same willpower to stay awake and see it all much like I remember Claire doing. I looked back through pictures to try to remember more of that time, it was a really great time. Recently as I have been more actively working through grief and the basketful of stuff in my head and heart related to all things Claire, I have associated that period with being numb. While that does still hold true, after seeing Lucy I have a little fresh perspective, my new word to attach to that period is tender. Like a really bad bruise from a recent injury, it was sore, but it didn't paint the whole world yet. It got me thinking about the two and a half years that have transpired since Claire turned 3. In that period she went crazy for all things princess and is now over it. She has developed a deep love for learning while at the same time attaining new levels of silliness and play. The road has been rough and long, there haven't been many water stops and I am very tired. Looking back, it hasn't been all bad, with the hard and the ugly there has been so much good. It was really fun to get a little window into our past in the form of another sweet soul a little further back on the road. I am finding myself refreshed and renewed, in two and half years we are no worse off, we are still just enjoying the days that we have together and I just don't think it can get better than that, cure for rett aside :-)


The first picture was taken of Claire just before she turned three and the second was taken at the study on Saturday by Megan, a fellow rett mom and truly amazing woman.

The Greatest Birthday Ever!

I love my birthday. Why wouldn't I, it is a celebration of me! But when you grow up, which, technically, I think I might have, birthdays can be a little trickier. First off there is work, my current employer is not fond of any type of time off. Then there is the budget and a host of other annoying things that fall into the category of 'adult type responsiblities' that can take away from one's birthday. In my 20's I had the pleasure of having colonoscopy three years in a row, on my birthday. Other than that, I have very fond memories of my birthday. My mom was awesome at making me feel like the most important thing in the world on my birthday. I always got corned beef and cabbage made just for me, alright, it was St. Pat's Day anyway, but I do love that feast! The last few years have been less exciting. I imagine that I am not the only person out there who has had disappointment from a spouse's failure to adequately celebrate the birthday. Add young kids with some other random complications and it is pretty easy to not have much energy to celebrate, it happens. This year was different, it was exceptional! It started getting to cuddle with my Claire Bear and she gave me a card and a necklace that she had made just for me, priceless! It wasn't long before Chloe joined the party and things were rolling. Jared took her out to get cat food as we can completely neglected to remember that we were entirely out, oops! When they returned home, Chloe came running into my room yelling, "mommy, mommy, birthday cake!" It was brilliant! I don't think that I had ever conceived in my mind just how great it would be to have a little girl run in and ruin a surprise, it was bliss! Even the best birthday ever had a little blip in it, Claire had a pretty major episode where she stopped breathing and got super floppy following. I was so proud of Jared for rolling with it and staying calm, I had no idea that we had reservations, more or less at the greatest restaurant ever and Claire needed to be dropped off so that we could get there. Our friend came to stay with Chloe and we left to take Claire to Kid Quest, both with pretty heavy hearts. Watching Claire stop breathing isn't fun. Even with her doing it almost daily, it does not get any easier, but it is our lot, no use fighting it. We dropped her off and started our journey to the still unknown destination. It was nice to have some time to talk about how hard the whole Claire thing can be but quickly the conversation turned to the crazy weather and our destination. About 20 minutes into the drive I started narrowing down options as we passed exits and freeways. In typical Captain Awesome fashion, I was given a clue, wonderland streams. It took me half a second to figure out, ALICE WATERS! It never even occurred to me that I would be going to Chez Panisse. That Jared had reservations and had gone to great lengths to keep the secret spoke volumes to me. I pretty much giggled in the car the rest of the way there, despite gale force winds and massive amounts of rain, all I could do is grin. We were seated at a very cozy table (they pull it out for you to sit down and push it back, small space!) and given the days menu. I didn't think it could get better until I read that today's menu featured dishes inspired by Julia Child, one of my other heroes. I won't do the food the injustice of my words, I will just say that it was marvelous. The company was also very nice and I am amazed at the fun grown up, non kid things that we can talk about when given the chance to eat at a time that we are also not completely exhausted, again marvelous is the best I can do to sum it up, but that really is an understatement. Eventually we had to leave and journey home, again through crazy wind and rain, but I was so content that I drifted off to sleep. We finished the day off with a princess movie, pizza and a birthday cake with two of the greatest little girls ever. Huge props to Captain Awesome, I felt like the luckiest girl in the world that day, probably because I am.

Sometimes You Want to Go Where Everybody Knows Your Name...

...sometimes you don't. In my case, it seems to be that I don't really get to pick, but none the less, I have recently had great experiences with both. The past Wednesday was far from a normal day. Jared had taken it off because Claire had to go up LPCH to get wired up for an ambulatory EEG. Since he is Captain Awesome, he offered to take her, at first and I must admit I was a little nervous. I pictured him in a ball crying while Claire screamed during the long process of gluing 28 wires to her head. I have done it twice and both times my nerve were a little fried at the end. I had BSF, which I figured would be a good distraction and maybe the wonderful children's program that they have would wear Chloe out so she might nap well. Of course I was running late, it was the day I was supposed to get there early for the fellowship and I had all I could do to put one foot in front of the other without bursting into tears because Jared and Claire were off doing something that makes me very sad. As I dropped Chloe off, one of the women who runs the toddler room handed me a card. A few months ago I had run into her at Verve, my favorite coffee shop, while I was out with both Chloe and Claire. I quickly noticed that it was a gift card to Verve :-) and thanked her. She smiled and laughed with a remark about how I must need all the energy I can while watching Chloe run across the room. I honestly think this is one of the kindest gestures that anyone has ever done for me, at least in recent memory (which I admit is bad). Since I am being honest, I really don't enjoy BSF that much. I go because Chloe loves it and I don't mind the lectures and small group, I sit in the back, don't talk much and try to blend in as best I can. But it didn't work, somebody noticed me and it turned out to be the biggest of blessings. The two hours had gone by, it was time to head home and still I hadn't heard from Jared. Eventually, this picture is sent to my phone, of coarse it went smooth as silk, that is why they call him Captain Awesome. I don't really remember what the rest of the day held, I do remember being really tired, but in a good we did it sort of way. Then I woke up. Thursday morning I opened my eyes, looked at the video monitor and saw just the wire in Claire's bed, no Claire. I ran in to find her giggling, sitting on the floor with the bandages that protect the wires off her head. Panic ensued, doctors were called and it was decided that she needed to go back in and they could squeeze us in at 8:30. I had a meeting at our home scheduled for 8:30 with the ABA team and Claire's classroom teacher. So, Captain Awesome volunteered to take her. They were there and back quickly, other than the freaky episode in the car (which is why we are doing the EEG in the first place) again it was smooth. The rest of Thursday was pretty uneventful. We met up with Jared's brother and his wife at the aquarium, saw fish and ate ice cream. Friday we were very pleased to see Claire in her bed in the morning. She was pretty excited to be going to get the wires off her head, it was obvious that it was very uncomfortable. Of course we opted to go get coffee first. I just love that I can take her into Verve with her head taped up and everyone talked to her as if it were no different than any other day. It really is one of those places where it feels good to go in and yes, most of the people in there know my name. After that the drive was surreal. She lit up, in the purest and most typical little girl sort of a way.

 The video doesn't really do it justice, but it is all that I have to try to show you. In the moments in the car, she didn't hate rett syndrome, she wasn't being actively robbed in the form of a dystonic episode, it was just pure. We pulled up to LPCH and the valet looked surprised, his remark was, different driver today. For some reason that really took the wind out of my sails. Being recognized at the coffee shop is way better than at the children's hospital. As we waited for them to look at the data before unraveling the wires, it felt like everyone who walked by knew Claire. It was truly one of those bittersweet blessings.  While it is great that we have a place to go that offers such great care, I really wish that we didn't have to go.

Good Grief!

It has now been five years since I really entered the land of the grieving and five years ago I had no idea. Honestly, I spent a solid three years in denial, without even being aware that there was a grieving process and that I had anything to grieve. After all, my mom didn't die. Claire didn't die. It seemed like the appropriate response would be to be thankful for this, right? I remember the day we got the diagnosis for Claire, I was so genuinely joyful that it wasn't a death sentence, something that we had feared. Last week I was speaking with a friend who was struggling to pull herself together and push on. She too has had a life altering set of circumstances that have left her with some physical challenges. She said to me that what she has was not nearly as bad as what Claire has and that she shouldn't feel so bad for herself. She had articulated so clearly the elephant that is often in the room when I am with others. For some reason, we tend to compare our trials to others. If what we have isn't as bad as somebody else, then shouldn't we just get over it? No. I think this happens a lot in rettland. I have friends who's daughters walk, which is amazing! I have heard musings of how hard it is to be frustrated when they have friends who are in the hospital with seizures or feeding problems. All this to say, my new answer to so many is to grieve. You don't have to have it worse than everyone else in order to be entitled to grieve, you just have to have a loss, that is the only prerequisite. I really wish that somebody had told me it was alright to grieve years ago when we were in the earlier stages. So to any of my friends not as far down the road to rettland, it is alright and I highly recommend it. I do think that grief had a pretty negative tone in my head at first. In part it has to do with my upbringing within the church. There is a need to always be praising and grateful, while those are very good and important, the Bible does also say to 'mourn with those who mourn' but that really gets a lot less publicity than the everything is fine message. The last two years have really been a much more active part of the grieving process for me. I can look back and see that there were periods that were full of anger, bargaining, depression and acceptance. But with my situation, there is no completion. Claire is not dying and she is not really getting better. A few weeks ago a friend asked me if I felt like there was a place that I would reach, that would allow me that final acceptance. Sadly, my answer was that once Claire passes, I will get there.  Hopefully, that won't happen for a really, really long time. In the mean time, I think that I have adapted to go through the whole grieving process on a daily basis.  On rough days I think I might go through it two or three times and sometimes it might span a few days. It looks like this, Claire screaming her head off, thoughts in my head are along the lines of, this is typical she is five, kids are hard. Then the screaming evolves into heartfelt sobs, I begin to see her for the normal kid she is, trapped inside her body and get mad, why?!?!? this is typically when I have my WTF conversations with God. Then she starts to calm, I think to myself, if I can just get her walking, talking or more regulated, then we can get through this. Once she is better, I turn on pbs and go hide in my room, look at baby pictures and cry my eyes out. Eventually, I hear the girls laughing in the living room, which brings so much joy to my heart, I wipe the tears away and go and enjoy them. The point is, that allowing myself to go through and feel the different stages, has really allowed me to feel more in general. I have given up on trying to be the strong one who is really alright with it all and have come to rest with the notion that it is hard and not alright, yet everything is going to be fine, sort of....you can see that it is a work in progress.

Good

Today I walked down the beach holding my daughter's hand. We played in tide pools, stood in the sand as the gentle tide washed over our feet and it was good.

Being

It has been a year now since I actually have been feeling again. Within that time there have been plenty of ups and downs along with the twists and turns and I can confidently look back over the coarse, with a grin on my face. I feel proud that I have not just survived it but took a lot of it in. Sure there were a few corners that I closed my eyes for a minute and the occasion that I had to let up on the gas, but overall it was a good time. Through all the tears and the joy, I think that I am finally starting to maybe learn a few things through it. Right now, that seems to be the concept of being. The thought has been floating around in my head for a while, I often pause, think to myself what it would look like to be and then get on with my doing. It is easy to do, to just keep putting one foot in front of the other, it doesn't take much thought, after time it becomes automatic, the treadmill slowly increases speed and without too much effort, you just adapt. But I don't want that. My problem is then, what? How do you not do? Seems impossible. Today we went to the aquarium with the girls. While Jared chased Chloe I sat and fed Claire while trying to just soak it all in. Like most nice moments it was cut short by a toddler (thankfully not mine!) wondering off in a direction that was clearly against his mother's plan. He was interested in looking at the ocean tide pool area through the fence, his mother desperately tried to get him interested in the display. She ran after him saying, don't you want to see the frogs? They have water over here too. Claire and I relocated and yet another mom, was chasing after her youngster, trying to get him interested in the exhibit, with this it occurred to me that this is a very noticeable trend. Since I was already volleying the concept of being in my head, I couldn't help but notice that both mothers were clearly trying to get their son to 'do'. As a culture I think we are wired that way, even as toddlers we teach this. My next filter was to think about this in the lens of a special needs parent. The list of things that I NEED to DO is very long, so long that it would be very easy to hide in for roughly the rest of Claire's life. She must be fed, walked, stretched, dressed, groomed and communicated with and that is just before school. Is it even possible to think about really trying to make this shift from doing to being or am I just doomed to fail? When we entered the land of special needs we were in the early intervention program. As the term suggests, the intervention was pretty comprehensive. We had a minimum of 9 hours a week of appointments for 18 months. During that time I learned to advocate for Claire, I would strive to get her everything that she needed without overloading her and giving her enough down time to process, but not so much that she was bored, it was a fine line. Then in 2008 research was released showing that mice with rett showed improvement when exposed to a rich environment. It was the evidence that I needed to keep going to keep pushing. Then I blinked and it was 2011. It has been 4 years to the day since we saw our primary doc and she was alarmed, sending us to the regional center for support. Today, Claire is 'doing' well. She is learning a lot, slowly getting stronger and more confident with her walking. As she napped today all of this swirled in my head, can I just 'be'? What is that? Am I crazy for even attempting such things? Then Claire woke up, Chloe had just fallen asleep and I had to be quick to keep Claire from waking her. I climbed into bed to cuddle with her and she looked straight into my soul with her vibrant eyes and bright smile. She was happy and it sounded like she was trying to talk. I told her how I love the sound of her voice and that I know she wanted to control her mouth but that it doesn't happen. She started to make the sound of the letter f. She carefully blew, with her two teeth over her bottom lip, she tried so hard. We laid for a long time just saying f words like fun, Friday, father and flower. I would wait and she kept trying to speak, over and over she would blow and try to say fun, she got pretty close several times! I was humbled by how hard she tried and how much she relished the smallest of her accomplishments. Then it dawned on me, I was being. While I was trying to get her to talk which can be construed as speech therapy, which would go under the column of do, I was following her lead, which I think is one of the defining differences. If I hadn't been still enough to notice what she was doing, I would have moved her to the couch, put the tv on and missed a really beautiful time. As for the video, it was one of Claire's favorites when she was into Seasme Street, now she likes the real Beatles, but it seemed fitting for the wide range of things that are in my head tonight.

Rare Disease Day 2011

I know that at lot of my blog posts center around Claire and Rett syndrome, but today she will share the spotlight. Feb. 28th is the 4th Rare Disease Day, which is a pretty big deal for me. It is very easy to feel isolated and overwhelmed when dealing with the multitude of hard things that come with a rare diagnosis. Rare Disease Day is about calling attention to the over 7,000 rare diseases that more than 30 million Americans suffer from and so many more globally. So, to bring attention to my favorite rare diseases (and by favorite I mean have hit VERY close to home for me) I figured I would blog about them.

I will start with Amyloidosis. In March 2006 my mom was diagnosed with primary amyloidosis after having a major stroke and being rushed to the Mayo clinic which was close to her home. The amyloid protein had deposited in her heart, causing it to be very thick and pump inefficiently, thus the stroke. Doctors painted a very grim picture, they doubted that she would be around more than 4 months. The primary treatment at the time was a stem cell transplant but because of the stroke and the damage to her heart, she was not a 'candidate' for that. Mayo being on the edge of what is new and exciting offered an option referred to as the Italian protocol. They didn't know if it would work, but there was very little to loose by trying, and as it turns out, so much to gain! The experimental treatment worked!!! It was through Amyloidosis that I was introduced to the concept of a support community and the science of the body. I learned about the Congo Red Dye test that is done to check for Amyloidosis and about the importance of the light chain assay to keep track of where the disease was as far as active or inactive. I learned about special cows in Vermont (no joke!) that are raised to produce a specific substance that allows for this test, that in turn allows doctors to take my mom's blood and report back that she is fine. Yet again, I find myself loving cows! I also learned about how very intelligent, well intended doctors, just don't know everything. While at the same time, strangers with no medical background can at times be the greatest of resources. The strength that was shared through the community of others as we went through the treatment was amazing, I think at the first support group meeting there were 8 other people from 4 states and none of them felt like strangers.

Next up, Crohn's disease. Just after I turned 19 I was sick a lot. My parents thought I had an eating disorder as I lost weight like crazy and spent a lot of time in the bathroom. It felt like the viral infection from hell that lasted for months, turns out, I wasn't anorexic, it was Crohn's. I had to take what seemed like a thousand pills a day and none of them helped. I ended up in the category of severe Crohn's and in the chemo unit at Mayo Clinic getting infusions every few weeks. In retrospect, it was a pretty crappy (ha,ha) way to spend my 20's but I really had no choice. I was tired for years. Finally in 2007 I got really sick. I was in the hospital in Santa Cruz and the GI doc came to visit me. He pretty much said that I was so bad that nobody in the Monterey Bay area was qualified to help me. The next day I was on a plane for a consult with a colorectal surgeon back at Mayo Clinic in Arizona. One of the things that I have learned in my experience with the various rare diseases, it is never good when a specialist can see you right away, never. It did work out that this doctor knew a lot more than the guy I had seen at home. He even knew of somebody in my state who could care for me. Ever since then I have been sticking needles in myself every two weeks and my Crohn's is under the best control that it has ever been! I never joined a support group because I didn't really want to talk with others about the stress from constant diarrhea or how frustrating it is to get sick from everything since your immune system sucks. Rather Crohn's taught me to laugh. My friend Kathleen and I would inflate exam gloves while we waited for doctors and write different parts of the exam in appropriate places. Jared and I played hangman in the waiting room at the ER when I had beauts of uncontrolled vomiting. I learned to let laundry pile up and that cleaning the carpets was more of an optional thing. As much as having Crohn's is truly a pain in the ass, I know that I am a better person for having to get the lessons from it.


That brings me to Rett syndrome. While it is more common than Amyloidosis, and with a longer life expectancy, more debilitating than Crohn's and even more socially awkward, Rett has brought with it the strongest community that I have experienced in rare disease land. There is no doubt about it, if I could undo any of these, it would be Rett, I hate it. It holds our daughter Claire captive, makes me second guess just about every thought that I have and has driven Jared and I to the edge of exhaustion and we are just at the beginning. But I do have so much hope. Research is being aggressively pursued. Of the three rare diseases in my life, I most expect that Rett will have the biggest leaps in treatment and what we do with it in my lifetime. That is why Rare Disease Day is so important. Awareness is so critical as each of these different causes strives to make progress and ease the effects on the body. So on Monday, as you might be tired for one reason or another, I encourage you to think about the significance of Rare Disease Day. If you are somebody who has a rare disease close to you, know that you are not alone, there is support, there are other people out there. If you do not have somebody close to you in this exclusive club, perhaps you would have strength to share or encouragement to give and if you do, please do not hesitate, you can make a difference.

Shoes!

I know that my last few posts have been a little bit heavy so I wanted to share about today, because it was brighter. Nearly two weeks ago Claire had filled up her token board by eating her breakfast in a timely fashion and getting to school on time. I was so desperate to get her to eat that I bribed her with shoes, and it worked! It kills me how easily she can do things when motivated. Last weekend we decided to put off the shopping trip to play at the boardwalk, so Claire has had a lot of time to think about this. Captain awesome, being awesome, had noticed pink and black high top converse with Velcro down the back when we were in then shoe department at Nordstrom a few weeks back. So Claire and I did a little online research and as it turns out, she was keen on the high tops. So this afternoon the four of us piled in the car and drove over to the "big" mall. We listened to Claire's music much to Chloe's dismay, but this was Claire's reward. We had to take the elevator up to the third floor. Nordstrom being the fancy place that it is has floor to ceiling mirrors that we passed and wow, that little diva! Claire shamelessly checked herself out as she rolled by with the biggest smile on her face. I don't know why I am so surprised but she was so peaceful and bubbly while we looked around for the high tops. Her hands were quiet, there was no teeth grinding and no shouts. She just beamed as the lady brought out the box. We tried them on and walked around, I think we need to look into doing pt in the shoe section of Nordstrom. Her steps were so planned, soft knees that bent and a narrower gait, it was beautiful. She was even patient while we paid and made the rest of the plan for the day. After such a long week, it was sure nice to do something so normal and have it go well. Proof that it doesn't always rain and occasionally there are rainbows after the storm.

yeah...

Captain Awesome has a certain way of saying "yeah" in a way that I really can't portray online, it is a jack of all trades response. He uses it for just about everything regardless of what he really means to say, yeah, is what comes out. I have to say that often this drives me nuts, but I am starting to really warm up to it. I don't know if it is just life or life with rett, but "yeah" seems to be the best response I can come up with these days. Monday was crazy, I assume that you read and if you haven't, reference my last post. Tuesday was nearly just as maddening. Claire had another episode but we spared the trip to the er. The neurologist had apparently called the er on Monday to tell us they could admit us to LPCH but we had already gone home and nobody tried any harder to find us?!?! After several phone calls back and forth, the neurologist had again found a bed for Claire at LPCH so we could get an EEG going and figure out what crazy was going on in her head. We checked in around 9:30 Tuesday night and Claire fell asleep around 2:30 that morning and woke for the day at 6. She was an excellent patient, she had three good freaky episodes and we got it all, we even discovered that her heart drops to 40 just before it happens, isn't that exciting, not really. When the expert came to read the EEG he kept asking if I hit the button when she had the episodes, yes, of coarse I did, but there was no abnormal (for Claire) activity when the button was pushed. She's wasn't having seizures, she has rett syndrome, why didn't I think of that! Claire was getting less patient about being in the hospital bed. We danced on the bed, read stories, painted nails and anything else I could think of, but she was tired, too tired to sleep. She laid there motionless and awake until 4 so I knew there would be no daytime sleeping as we had hoped. With the good news that it was not seizures, I asked to be released. They said no. I lost it. First the attending came in to explain it to me, apparently my sobbing really concerned her so she sent in a social worker to talk through it with me. You know it is bad when the social worker leaves themselves fighting back tears and no real advice other than, here's my card, if you ever just need to talk. I think that by 5 I had cried so much I was dehydrated but I did regain composure. Jared felt it safe to leave and I promised to be nice to any more doctors that I came in contact with. Around 6 the neurologist came in, I tried to keep my cool but it didn't work. She was sympathetic and understood why I didn't want to stay the night. We have a 72 hour EEG at home scheduled in 3 weeks and diastat in the mean time, so they honorably discharged us (instead of making us leave AMA which had been in the conversation). We finally left around 8 and by 9 had Claire home and tucked into her own bed. As I faced reentry there have been many questions, people asking, how's Claire? The best I can come up with is, yeah. Part of me wants to scream "what part of severely disabled do you not understand" but I know that is a little harsh, they are well intended. She has rett syndrome. Since she has that she has these super freaky spells that make her stiff, her eyes close and her tongue turns in her mouth, she darts her eyes at me in a silent plea for help, there is no medicine, nothing I can do when this happens, and as quickly as it comes it leaves. Yes, we are out of a hospital and we didn't go in an ambulance today, so by that standard it was a good day. For having rett syndrome, Claire is doing very well and I can't forget that. With each of these episodes comes something new and wonderful. She spoke three words on Thursday and Friday had such an epic horse therapy session they went long (in 40 degrees and rain), certainly these episodes are not damaging her brain and that is indeed a good thing. But can I just be selfish and wish that we could make small gains like this without having occurrences every day that force me to think, do I call 911 or not? I am sure I will come up with more words if and when I become well rested, but for now, I think 'yeah' about sums it up.

My Valentine's Heart...Attack

Last time I blogged it was a Monday and I wasn't feeling too hot and yet again, I find it is Monday and I feel less than stellar. I was very happy to wake up to rain (it has been so warm and sunny I have actually missed rain, crazy I know) even though my body was clearly not happy about having to get moving, it obliged. Claire was bright eyed and bushy tailed all ready for the big party at school. For us Valentine's Day is almost bigger than Christmas; pink, glitter, hearts, all up our alley. Claire was even a little wise cracker this morning as I was trying to get things together she used her talker to say "mom late" as if I wasn't aware already. We made it to school with a minute to spare and she was off to her mainstream classroom with a sack full of cards to hand out and a huge grin on her face. Chloe and I got coffee and took her gift over to her little buddy Lucas. It was so cute to see them really start to play together. She handed him the little bag and the picture she drew, he gave her a hug and said 'thank you Chloe' in the cutest almost 2 year tone, it was wonderful. Next was Whole Foods, while I am aware not everyone loves that place I do and I was excited to get back into the groove and just try to make myself feel better with business. Just before I got to the exit my phone rang, it was Claire's teacher. She said Claire was having some crazy episodes and asked if I was close, so I went straight there. When I got there she looked alright, I took her and she smiled, she even stood very well. We thought maybe a bit of food would be good so we walked to her chair at the table and sat down. Then it happened, she closed her eyes and clenched her fist, this was different from the other weird creepy laughing spells, her tongue rolled in her mouth and she really looked like she was trying to fight it. Quickly I got Dr. Mary (who I am convinced is actually an angel in a human body) on the phone. You know it is bad when you get the doc quickly, it says that they are really scared too. She advised me and I called 911. I called 911, for my baby, it was surreal. I hung up with them, called Jared and asked him to come get Chloe. I then sat on the floor and held Claire until the medics arrived. During that time the episodes got worse, at one point she went a little purple and I swear my heart stopped beating in that moment. The crazy thing about it all was that in between the episodes, she was pretty close to fine, not 100% but 90% and for us, a good day is 90%. The medics came and we told them that we had hoped to go to LPCH where her neuro was. But since we are out in the sticks they couldn't so we went to the local hospital to get stable and discuss a transfer. When we got there it was scary. She wasn't getting better so the plan was to get an IV in and then give her Diastat to stop it. In the process of the intake, getting the vitals and enough people to get the IV in 30 minutes passed. Somehow, in that 30 minutes the episodes stopped all on their own. Just as they were getting ready to give the medication we decided to wait for one more episode since it had been awhile, and it never came. Slowly the plan morphed from getting an ambulance to take us to LPCH to maybe driving ourselves to eventually just going home because she was fine. We are working on getting the EEG moved up so that we can figure out what to do with this little girl who just loves to keep everyone on their toes. We got home and she had a huge lunch and a good nap. She woke up for dinner smiling and really enjoyed her special Valentine's Day chocolate that she got. It is hard to know what to do with a day like this. It stared normal and ended normal, but man was there a lot of crazy in between. I think that the biggest take away is to know that we can go through something like this and come out on the other side. The medics were great, the er staff was great to us, my friends were there and Jared and I make a mean crisis surviving team. It's all reminds me of the lyrics to the song we had listened to on the way to school, The Beatles: All You Need is Love:
There's nothing you can do that can't be done
Nothing you can sing that can't be sung
Nothing you can say but you can learn how to play the game
It's easy
Alright, maybe it wasn't easy, but we did it.

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.

Kid Quest Needs Help

There are so many aspects of our life with Rett syndrome that I hate and honestly begging for money is one of them. Yet I get so many opportunities. I will get my ranting part out of the way first, then move to the begging. On a personal note, the begging comes so hard because of the relationship that I have had with the church (meaning local people) as a result of us becoming a family with disabilities. Prior to being part of this world I never new it existed, it was neatly hidden away, somewhere else, out of sight out of mind. Truly, that is a VERY SAD statement. I know what the thinking of the people I am frustrated with is like, I at a time, felt much the same way. However, it is flawed. So to anyone reading this blog who is not a member of the disabled community, let me clue you in. As Claire's disability evolved, her needs became greater than what we could handle as a family, without support we could not keep her in our home, yes, Rett syndrome is THAT hard. As we realized this there were plenty of well intentioned people that just didn't know what to do, it was one of the most painful and awkward parts of that regression period. I never thought that I would depend on public support, but we do and we have never been so happy to pay taxes. I wish it wasn't so, that the church could give us the support that we need, but sadly the world has come to a place where that is just not how it works. So, in the void of a community that we expected to be filled by the church, we found Kid Quest. It is a house full of wonderful loving people who just hang out and have fun, which is pretty much the thing that Claire needs more than anything else. She goes on Thursday nights so that I can get a break from giving her dinner once a week. They have theater day and put on play and all sorts of wonderful shannanigns. It was through her time at Kid Quest that I learned Claire liked the Beatles, who knew? During the summer they will go to the boardwalk or bowling. it is a place that I can drop Claire off without worry. I know that they are 110% capable of meeting her needs and keeping her safe. She has gained so much confidence having a place like this to go and hang out at. In rettland we discuss the rich environment and getting the wires to fire together, certainly, Kid Quest does this so much better than most of the therapy that we go to. So you can imagine the sick feeling in my stomach as I read the email that there was a $75,000 shortfall and unless the center gets some money fast, it would be closing it's doors at the end of February. That isn't much, it really isn't. It is more than I could write a check for, so here I am begging again. Please, if you would like to help the families of the Santa Cruz area or just Claire, consider making a donation. You can visit this link, then click on the fundraising tab on the left or you can mail a check to 704 North Plymouth Street Santa Cruz, CA 95060 checks made payable to Balance 4 Kids as that is the 501c3 that runs the program. Thank you very much for your support!

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.

Brene Brown: The power of vulnerability | Video on TED.com

Brene Brown: The power of vulnerability | Video on TED.com


This is a really great 20 minute video from Ted. I so appreciate all of you that are on this journey with me, those close and far away. The connection that we share online really truly helps as I continue on this path that Rett Syndrome has led me down.

The Rett Clinic, not what I expected

Last Friday we made the brave journey all the way to Oakland to Katie's Clinic for Rett Syndrome. So maybe it wasn't that harrowing of a drive, but I really don't like roads with more than two lanes and this trip involved lots of freeways. For this journey I was blessed to have Kat come with us. I love Kat for a lot of reasons, I might at some point just blog about that, but for now, here is a short list. 1. She accidentally taught Chloe to say 'dude' just by modeling it. 2. She wears jeans a t-shirt and either vans or cons, just like me. 3. If she were to be a character from a book it would be Amelia Bedelia 4. She has no other affiliation with the special needs world other than Claire, but she loves her and treats her like the normal little girl she is. 5. It is impossible not to have fun when she is around. And yes, that is the short list. Anyway, we got there and I got right to embarrassing myself. While Claire and Katie (as in Katie's clinic, she is such a cool girl!) hung out I went up to the desk to ask if I needed to fill out forms, sign something and offer insurance cards. Turns out the lady sitting there was the neurologist, not the receptionist, oopsie! I honestly don't remember much of what was said during our appointment with her, she started with how old were you when you had Claire and my brain went numb from there on. I do know that we are looking into booking ourselves a lovely suite at LPCH for a long EEG and hope to get the activity on the monitor before any decisions are made. As soon as we were done with the neurologist we split and went to Fenton's to meet up with Erica and Nolan. Really and truly, this was the absolute highlight of the day. No, it wasn't the highlight because the ice cream was so good, although, it was very good. It was a simple text and a small thing that made it. I have known that Erica is a great friend, then as we planned this a week before she offered to get there early and save a table so we wouldn't have to wait. As we drove there, yes, again I was running late, she texted me and asked if she could order food for the girls. I know it sounds really cheesy, but it was then that I thought to myself just how great my life is. I have the BEST friends. We got there and again, I was humbled by a small thing, Kat sat between the girls. Restaurant etiquette states that the point man be strategically seated between the two children and the wing man on the end. With Kat running the show, I was not only able to chat with Erica, I even got to eat while my food was hot, amazing! Chloe and Nolan did there typical super cute kid stuff, Claire ate an entire bowl of ice cream and we shared a lot of laughs, it was great!!! We went back late, but with such such a lightness in my heart, it was great! The second half of the appointments was about 4 hours. We saw a lot of people who all seemed to share the same opinion, Claire is doing great! I guess my work with her is not done for now, rather keep it up, but we just have to maintain. While that really is a best case scenario, it feels like I am being asked to drive across the country at the exact same speed with no cruise control to keep the bomb from going off. Keep it up, for longer, um, I think I can, I think I can... but with friends like this, it really isn't a question, I know that they will be with me for the drive and if I swerve off the road or the bomb blows up, they will be there with me through that too. All that to say, the doctors, not all that exciting, but I have some really great friends and I am very grateful for.

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.