Awareness

As painful and heart wrenching as my last post was, during that period we also had experiences that overwhelmed me with joy and had encounters that really gave me hope. As obvious as it sounds, it started the day after we received our diagnosis. That morning I shared with my Bible study the good news, that we didn't have to search any longer, we had received a diagnosis of Rett Syndrome. I was really surprised when one of the first responses was from a lady, who I honestly thought was a little crazy, that had read about it in the paper that morning. I didn't normally think she was crazy, I just thought surely she must be confused, nobody has heard of Rett syndrome. Sure enough, she was more sane than I. There was going to be a big event that Friday and there was an article about an amazing little girl with Rett syndrome and her super-hero parents. Things fell together and we stopped by at the start of the night to say hello to the family that was hosting it as well as a few other families that had driven hours to be there. So the week that we received our news, we were also able to meet 3 of the most inspiring families that were already living with Rett Syndrome. The only reason that we got that connection that, at the time was so inspiring, was because there was a bunch of people out there promoting awareness. It is no secret that I don't generally enjoy awareness. Last year I blogged about how I was done with it on Oct. 3. This year it was Chloe that at first changed my heart. I don't know how, but each time that I have felt like I am over it and just crave an hour that I can pretend that Rett doesn't exist, things happen to change my mind. First it was a friend's middle school-aged daughter putting together the most thoughtful and heartfelt presentation and getting excited that there are 30 less people who haven't heard of Rett Syndrome. Time goes by and then a friend that I hadn't heard from in a while is in school to be a medical assistant and she is doing her presentation on Rett Syndrome and wants to work with Claire and I on her project. A few more days go by and I learn that a friend wants to use his business to raise not just money but awareness and all for Rett Syndrome. I sit and I think about how over my five years in this world, one of the things that is consistently encouraging and refreshing is when somebody knows what Rett Syndrome is or has at least heard of it. It is the difference between being tired in line at the coffee shop and somebody commenting on my t-shirt and telling me that they have a friend who has a daughter with Rett Syndrome, changes the day. So to the those of you who have gone before me I say thank you for talking about it when nobody else was. To those that I have been on this journey with, thank you for sharing your child and letting people learn about them. To those of you that choose to talk about it, not because you have to but because you care and strive to make the world better you have my sincerest appreciation. It is the combination of them all, people working together in small little groups all over the country world so that families that are newly diagnosed this year will come across a few people that have heard of it; and that friends, is a world of difference. So thank you to you all for doing your part and for embracing Rett Syndrome Awareness month at the level that you can.  If you are interested, a wonderful video was produced a while ago, it features Julia Roberts and discusses Rett Syndrome. If you are on facebook you can click here it will take you to an app that is streaming the video free for October. If you have 50 min. I think it would be worth your while, but have a tissue close as it might pull hard on your heart-strings.

If I knew then...

Yesterday I posted this picture to my profile with this caption, "I didn't know it at the time, but this picture was taken the day that Claire lost her hand use. The day before she fed herself Thanksgiving dinner, she hasn't eaten a meal independently since then." What I did not share was how I almost passed out just typing those words. I have really strong memories of that day and I wanted to share them, for those families who are dealing with a recent diagnosis, you are not alone.

It was Thanksgiving, about six weeks after we had received a diagnosis of Rett syndrome. Claire had just turned two and on that day fed herself birthday cake. That wasn't at all unusual because at the time, she fed herself a lot of her meals. She drank her milk from a sippy all by herself too. In fact, she had such good hand use that they ran the test for rett syndrome to rule it out. Still the news sat heavy with us. Like anyone with this diagnosis, we wondered if the regression had started or if it had already stopped. Amongst the uncertainty we tried to keep living, we tried to move on that our little Claire hadn't changed just because her label had. Since it was just the three of us we went up to Petaluma to stay at a fun hotel and eat a turkey dinner cooked by somebody else. We sat and tried to enjoy it but the tension was inescapable. Claire fed herself stuffing and mac'n'cheese. Jared and I were annoyed with the service. I don't remember what exactly the problem was but I do remember something frustrating. Sadly I wonder if there was really an issue or if we were both just so stressed out that we made things more difficult than they needed to be. We went back to our room where Claire passed out and we went on pretending that everything was alright. The next morning we found the closest Starbucks and got our usual order but something was different. Claire would typically eat little snacks but she didn't. Jared stared at Claire as she obsessively moved her fingers and hands. I tried not to notice. We had such fun planned for the day. We were driving out to Bodega Bay and stopping at an old creamery on the way there, what a perfect way to avoid black Friday. Claire passed out in the car and Jared and I fought. I told him not to obsess about her hands because freaking out wouldn't help anything and he shut down. It is easy to look back and say if we knew then what we know now. The truth is that I have learned a lot. I have had to apologize to Jared. I didn't realize it but his freaking out was just as much a real form of grief as my denial was. The problem is when neither of the two see the other form as acceptable. Since then I have met many families that have had the heartbreak of the diagnosis and the regression associated with Rett Syndrome. I just want you to know that it is alright. Whatever you are feeling, it is alright. Perhaps I am trying to make up for those fights that we had when I told Jared that it wasn't alright and that he had to embrace Claire how she was. Either way, just know that you are not alone. The pain that goes with watching your child slip away and not knowing what is next seems obvious, but sometimes it helps to hear somebody else say it's alright.

We Walk Slow

Again I sit here and struggle to know where to start. The highs were so high and the lows so painful. Claire's brain did some really scary stuff while we were in the car, twice. At the stroll-a-thon she got deeply sad as our friend took the mic and started to discuss why we do it. When Dr. Kaminsky started to explain the various trials she got really upset and I took her to were she couldn't here. But once everyone was done talking about rett syndrome things turned. She had a lovely time. She definitely enjoyed her escort of caped-crusaders as we strolled around the park. She smiled on the way home that sweet content smile. She laughed at dinner and quickly drifted off to sleep without anymore brainstorming. It was such joy to be in the presence of people that we love so much and to be supported by friends like we were. I struggle as I think was it worth it. It is easy to say that you would do anything to keep your child from having an episode like that but I know that this happens with things that are this exciting and I don't know that I can fully commit to a completely planned and boring life. Over the course of this eventful weekend a song has been playing in my head. So instead of exhausting the subject of how annoying Rett Syndrome is, I will leave you with this. It inspires me, certainly we must walk slow.

Why I think Rett Syndrome Sucks

As I sit down to write tonight the question in my head isn't how did Rett Syndrome affect my life today, it's where do I start. Thank you for bearing with me as I try to get to my point.

This is a really exciting weekend in rettland. A documentary was being filmed about research, I got to go up and volunteer at the natural history study and see many of our extended family and tomorrow is the 3rd annual NorCal stroll and I made our team capes. So much fun! I spent the bulk of my day catching up with some families that I haven't seen in a while and love so much. I got to meet some new people and a few of them told me that they read my blog, so humbled, really it means so much to me. After a full afternoon of fun at the study I had intended to go home. I however stink at directions and got on the wrong freeway and I ended up at the hotel where the family get together was so I stayed and got to hear Dr. Steve Kaminsky give an update on the three larger trials as well as answering questions and discussing the overall big picture for research to help fix Rett syndrome. Just before the talk started I heard from Jared that Claire was experiencing some weird stuff that started with her holding her breath and gagging, I could hear that he was worried even though he assured me that it was fine. So I stayed for the talk and am I ever glad I did. It was amazing! There are real people, very smart ones, that are doing everything in their power to get some help to the children and families affected by rett. It was surreal to sit and listen to him explain the biology behind what is going on in the brain with rett and actually understand most of it. Oddly and not surprising, it really explains why Claire experiences what she does. It makes more sense than ever why she has such crazy brainstorming on good days at school when she learns a ton. I hate it that we have to slow our selves down when Claire is loving learning but the truth is that her brain can't handle it.  I left the meeting feeling fired up and ready to do everything in my power to fund raise and support all of the efforts that are taking place. I left encouraged that there is a real chance that in a few years there could be a medicine that might help. Dr. Kaminsky even discussed what they are doing to begin to start a rehabilitative program, they think this is a need, amazing! I called Jared to share my enthusiasm as I got on the correct freeway and headed home. We only spoke for a moment before he had to hang up because Claire was vomiting, again. My drive home was just over and hour and I came in to find Jared, holding Claire over the toilet, her pj's cover in vomit. I gave her a bath while he changed the sheets. I talked to her and tried to calm her down. After an hour of brief moments of dystonia, gagging and vomiting, it got bad enough and we had to give her diastat. It was heart breaking to go from listening to a doctor discuss how he thinks he can help what I perceive to be our biggest problem to looking at it straight in the face, tonight it was holding Claire hostage as well as Jared and I. Here is the part that makes it worse, I am pretty sure she was just excited. We've never had a team for the strollathon. We've never made our our shirts much less awesome capes. I am so mad that her body can't let her just enjoy the excitement and now I understand why but it still sucks. I guess that is the point to todays story, even though it brings some of the greatest people in the world into your life, rett syndrome sucks.

They say that sometimes a picture is worth a thousand words. As I sit and look at this picture I find that to be true as I am truly speechless. This was taken just before Claire turned 3. I know that those were hard times but as the years pass I remember less of the pain and more of the joy.

Therapy and lots of it!

Tonight Chloe and I went to Whole Foods for a few things. Being the Chloe that she is, she hopped through the entire store instead of walking.  Some people laughed as she fell over again and again. Some people were obviously annoyed with my lack of parenting. I really don't think those people understand just how much I enjoy that she can hop around like that.  Perhaps they don't know that there are people out there who have to fight for each step that they take. If you have Rett Syndrome and you don't walk, that becomes your life's work, and a hell of a lot of it. Claire was referred for physical therapy at 15 months. She hadn't pulled to stand or taken steps so early intervention was deployed. We worked three days a week for just over a year and a half with a lovely pt named Tiffany. When we began I had no idea what Rett Syndrome was. We had no diagnosis so I was just on a mission to better understand Claire and help her to thrive. Early on Tiffany explained to me that a lot of what she did was just waiting on Claire. She would stand and wait minutes for Claire to take the next step on her own. Over and over as we worked Tiffany would tell Claire that she could do it and show me how to wait for it. It was true, if her helper would slow down enough, Claire was able to take her steps on her own. As it turns out, a major component of Rett Syndrome is Apraxia (more on that soon!) and because of this, children with rett require lots of time to respond. To combat this we worked on motor planning which is just doing the same thing over and over and over so that it becomes automatic, much like I am typing right now. As I think back I am in awe of just how much Claire worked at it. Sure she had her days, but she kept trying. Even as her hands stopped working and she could no longer hold onto her walker, she kept trying. As Claire got older we had to move our pt sessions out of our home and that is when we met Sue. It has now been 4 years since we have been seeing Sue. Claire has been averaging 3 hours of pt a week for all but the first 15 months of her lifetime. The great part about this story is that with all of this work, Claire is making progress, it is very slow, but it is progress and it is important. Claire has yet to stand by herself for more than a few seconds or to take a step by herself, but she is getting there. Each day as she fights for it she teaches me what patience and perseverance is.  Claire now works on the treadmill and is getting faster and stronger over the weeks and months that we have been at it.

These years of work are what enable her to do the walking that she does around the house as well as out and about. This week she was able to stand strong with her feet in the sand while the waves came up to her knees. She was able to walk into a friends house and look at the bunny in his cage. We don't yet have a cure for Rett Syndrome but with physical therapy Claire is working to overcome some of the challenges that it brings with it.

Monday Funday

 I'm not typically a person who loves Monday, but I'm willing to make an exception for this week. As circumstances would have it, Claire's horseback riding got canceled because it was over 100 degrees for most of the day. It is never hot here, not for more than an hour, but it was today. Since we don't have air conditioning in our home, I had to get creative be adventurous. Routine is the foundation that Claire's regulation is built on, in a way, it compensates for the communication gap. So the thought of doing something unexpected scared me, a lot. Since crazy is as crazy does, we went for it. I called a friend and asked if she and her kids were going to the beach after school. She knew that I had a lot on the line and we discussed the chance that I would have to leave with Claire and if that happened she would just take over with Chloe. Last time that we went to a beach Claire had crazy seizures from the excitement and I braced for this, figuring that if she didn't have seizure it might just be fun and it was. Our time at the beach felt like a brief vacation from life with Rett. Other than having to carry her through the sand there wasn't much else that Claire needed from me. She was able to relax and enjoy the sights and sounds all on her own. She laughed as we let the waves run up her legs before I swung her in the air as we ran to the safety of the dryer sand. The rest of the story is better told in pictures, it was great.

One thing that I have learned along this road is that you really have to enjoy the moments that you can. I am so glad that we took the risk, these are memories that no amount of seizures or dystonia can take away from me.

A Picture of True Inclusion

I wrote previously about how concerned I was about the start of school. I have never been so happy to proclaim, boy was I wrong! Sometime in the first week or two I was told that Claire was enjoying wheelchair races at recess with some of her friends from her mainstream class. I was relieved, Claire was having fun and with other kids, what more could I ask for? A few days later I learned that one of her friends took on the task of making very special medals for these races over the weekend. I was so touched. A friend was thinking about Claire, this was more than just not being isolated, this was normal 1st grade stuff. Then last week I received this picture from the teacher. Still when I look at it I am overwhelmed with joy. When I look at this picture I see three kids all on an equal plane, each with their own idiosyncrasies and insecurities but just having fun. I never thought that this sort of acceptance would be available to Claire. It's hard to say that, but after a few rough years, I had given up on trying to have normalness with Claire. Isn't it beautiful what the genuine authenticity of these two kids (and the others in the class) has overcome. They have restored my vision that Claire can thrive and play and do normal things, albeit a little different, it can still happen. In a world that is full of adults who believe and teach children that everyone has equal value, certainly great things will happen and right now that is the world that I live in!

The World by Chloe

She talks, she never stops. When she started to speak a while back I was in awe. It was a miracle. Still, I am in awe when she speaks, more because of what she says, so I thought I'd share some of the world from Chloe's perspective with you. Here are a few of the things that she has said in the last week and a little of their context.

During nap time I overheard her leading circle time, to her imaginary friends he says, "brass monkey, what song do you want to sing? The funky monkey? Alright I can play that on my guitar."

In the car, listening to Airborne Toxic Event, "When I grow up, I want a rock n roll accordion that is bright purple with pink polka dots!"

She doesn't just say fun things about music, in fact, most of the more surprising things that she says involve her sister, who she cares so much for.

In line at Chipotle, another little girl stared at Claire. Chloe, "Mom, does she have rett syndrome? Look, she's talking with her eyes!"

I'm trying to make the beds and the girls were playing in the other room. I called out to ask Chloe what she was doing. Chloe "Nothing mom, nothing! I'm just trading mouths with Claire." Me, "What?!?" "I traded mouths with Claire, so not I have rett syndrome and she doesn't"

Watching the movie Tangled, there is a mime in the scene, "Look, he has rett syndrome too!"

When I picked her up from school last week, Chloe's  teacher explained that during snack time, when the bowl of oranges was passed to her she just looked at them. The teacher asked her if she wanted some to which Chloe exclaimed, "I said yes with my eyes!"

There are so many more funny things that she says, but most of the ones that really catch me off guard have to do with Rett syndrome. Chloe's a little obsessed with the whole thing really. She has reminded me of what a big deal it is to me too. I work so hard to enjoy Claire for who she is, outside of her diagnosis, that sometimes I forget to acknowledge the role that Rett syndrome plays in her world. So....October happens to be Rett syndrome awareness month and in honor of that and the role that Rett plays in the lives of many that I love, I am going to try to write every day about a different facet of life and Rett, we will see, here goes!

Right Now

Right now things are alright. They are actually pretty good. The point is that lately I have been able to be alive and in each day and it has been amazing. Last Thursday I picked Claire up with a giant grin on her face. Her aide told me about the wheelchair races that Claire is having with the 1st graders from her reg. ed class. She loves racing and honestly, I am not at all surprised. We went off to a fun pt session and the girls were both in good spirits so I gambled. Instead of going home to have nap time we first went downtown to the bookstore. I had gone the day before with Chloe and she fell in love with an Olivia book. So we went back to get it on the premise that she had to share it with Claire. As we stood in line to pay the woman behind us remarked that Claire seemed very in tune to the music. She had noticed that Claire was doing her hands along to the tune of the violin that was being played outside. I watched and sure enough she was right. After we purchased out new little jewel we wandered outside and basked in the sun and soaked in the lovely sounds of the violin.  As Chloe went and dropped a dollar in his case I couldn't help but be overwhelmed by the goodness of my life. It isn't anything extraordinary. It is picking tomatoes, going to book shops and taking walks be the ocean. Right now it is all in balance. I have learned enough to know that it won't always be like this. Claire has developed a little cough and I know that a pneumonia might very well be on the horizon. Part of me thinks practically, that short of a nebulizer and a humidifier there isn't much that can be done. But there is more. I can enjoy each day for what it is. I just wanted to say that out loud and post it for the day in my future that I don't want to be in the present. To my future self, remember that when it is harder than you can handle, soon it will be more wonderful than you can imagine, hold on.

Claire's Crusaders

It is that time again. Last year I really wanted nothing to do with Rett Syndrome awareness or fundraising. Still I was (and still am) painfully aware of it and as much as I struggle with how to share that awareness, it happens. One of the things that I am continuing to learn is how much other people enjoy it when I do share.  Recently, a new angle has been added to this story, Chloe. It has been humbling how she has changed my perception of the whole rett situation. Honestly, she has been the driving force for my participation in this years strollathon. She wants to share her sister with the world and wants for her sister to be able to go to the doctor and get "better". Chloe has reminded me that I want those things too. So it is with great excitement that I promote our team, Claire's Crusaders and ask that you might consider visiting our fundraising page here to make a donation and be a part of the solution to rett syndrome. Thank you.

Lost Dreams and Hope Found

I had this post nearly worked out and ready to write when I received heart breaking news. Those of you in our rett family may also be experiencing grief after learning about Anna. After I got the news, I got really angry along with a whole bunch of other emotions and have had to fight really hard to get back to a place that I can see beauty in life again. The simple truth is that life is made up of lots of little moments. The past weekend I had a few that caught me off guard and it was pure joy. So I have decided to share that story with you in a hope that it might encourage or inspire you. Sometimes hope pops up when you least expect it.

It had been a very long week.  The process of Claire starting a new class with a brand new teacher and a brand new aide with a new SLP and PT had me pretty overwhelmed. Claire was doing well and I was terrified that I would let them learn Claire and in the process we would loose ground, the spark in her eye would dull, the anxiety would take over, the seizures would come and the little ability to use her body that she had would decrease. Those emotions alone were enough to exhaust me. Add to it the ignorant and hurtful things said by random people and the work of taking care of the girls. I was moving through each day, trying to put one foot in front of the next and be as optimistic as I could, but I was tired.
When the weekend came we had the opportunity to go to our farm and pick a load of tomatoes.  Food inspires me. Knowing where our food comes from gives me such joy. Every year I can enough tomatoes for the year. Each week, when I open a jar, I think back to the times that we have visited the farm, what the air smelled like, what the girls faces look like stained with tomato seeds, catching Jared eating off the vine (he claims to not like tomatoes, so it's a big deal) and the trunk of my car stuffed with bags of beautiful early girls. We had a relaxing morning and eventually made our way down to the farm. Claire had fallen asleep in the car as she was recovering from some "brainstorming" for lack of a better word. I had low expectations of this trip. I figured I would stay at the car while Claire slept and enjoy watching Jared and Chloe in the field. So I was delighted when Claire woke up pretty lucid and ready to go have some fun. It turned out to be a spectacular day. After testing a few tomatoes and hanging out in the field a little, farmer Tom started up his tractor and we went for a ride. I am not sure what exactly it was, but sitting on a hail bail bouncing around on the dirt was an equalizer, in that moment, rett syndrome wasn't keeping anything from Claire. She sat and enjoyed the sights and sounds like all of the other kids. As we went down a row of apple trees, Chloe picked them, eating two apples, one in each hand. We stopped at a field of strawberries and Claire savored the soft fruit, warm from the sun. Other than one moment of boredom, Claire was so at ease, not fighting her body or frustrated that she couldn't tell us something.

 After eating our fill of tomatoes, apples and strawberries, we packed up and headed home. As we drove I felt content.  Claire hadn't had a seizure and Chloe didn't tantrum. We had 35 pounds of dry farmed early girls that were begging to become salsa and a handful of padron peppers to snack on during salsa production later on. Typically, I start the whole canning process after the girls are in bed for the night. Being as tired as I was, I thought that perhaps I would get a head start while the girls were still up. Then the most obvious of thoughts finally popped into my brain, let them help. So Chloe washed 10 tomatoes for me. We hooked up Claire's switch to the blender. I put the serranos in and then Chloe added the tomatoes. Then it was Claire's job to pulse it and she did great. Both girls loved being part of the process. Claire lit up and Chloe jumped up and down cheering her on. The whole process that they were involved in was only 10 minutes but I think it might have been the best 10 minutes of the year for me.

It was in that time that I remembered about a dream that I had long ago. When we moved here, Claire was still a typically developing child. I dreamed of taking her to Pie Ranch and other fun food things. As the regression set in I stopped dreaming and I honestly had forgotten that I ever had. In that 10 minutes I not only remembered that I had a dream, that was being fulfilled, I was reminded that Claire continues to do lots of amazing things. Her life is full of so much potential. I was inspired once again to dream bigger and to hold on to hope. Hope that today can be wonderful, that Claire can be her own person, outside of her diagnosis. Hope that our life can at times feel normal and be filled with joy. In the context of all of the events of last week, I am reminded of the gift of each day. Some of them filled with things harder than I ever imagined and others filled with dreams bigger than I knew. Now I just hope that on the next hard day I can remember this and maybe even dream a little.

The Payoff

Much to my delight, the risk paid off. The first day of school was amazingly wonderful. The second day was a little more complicated. One of the many things that the aide reported to me was a description that included, "she was really blue" and they also got to see the sad side of Claire that hates her body. But they did great with it. She didn't end up in an ambulance or watching movies plopped in a bean bag, so I consider it a success. Friday I got a call, 40 minutes before school ended. My heart stopped for a minute, it was the teacher calling to ask if Claire could eat ice cream, crisis averted. When I went to the pick up Claire was wearing different clothes. I thought perhaps she vomited because she didn't get time to burp during lunch or she swallowed a lot of air in a seizure, but no, some of her pasta got on her shirt and her wonderful aide thought that she would feel better in clean clothes. Needless to say, I feel like I can take a few deep breaths. She is in good hands. They will be able to meet her needs as well as possible and the rest of the stuff, well, there is just no figuring rett syndrome out. I was also reminded that it's all a little bigger than one person. While there were a few comments based in ignorance, there was no malice. All of the people close to Claire believe in her and she has already started to open their world to hers. After three short days, the thing that I am most impressed with was although I was most aware of the risk, the payoff is something that everyone shares in, Claire is one of those gifts that just keeps giving.

High Risk

It is a common assumption in our society that high risk is often paid off in high rewards. I have never been one to shy away from risk, after all, I consent to my husband riding a Ducati, in the Santa Cruz mountains. Recently I was given a choice that required a risk of the highest investment, Claire. Our school district contacted me last May. The classroom that Claire had been in, a county program at our local school was being shut down. We had the option to place her in a classroom for those more severely affected further from home or to place her in a new classroom at the same school. It seemed like an easy decision at the time, she should stay at the same school, close to home, in a class with kids that were higher functioning. Side note:stomach turns at the mere thought of higher functioning and more severe as the options. Being in a county program at a local school was oddly isolating, as much as everyone wanted to pretend that it was all one big happy group of kids, I had a hard time feeling like Claire attended the actual school as opposed to just the county program. I was very optimistic about how great it was going to be just being in the special ed classroom on campus. I don't know what I pictured but as we are getting closer to the start of school (roughly 10.5 hours away) I am realizing just how delusional I was. At first I was a little concerned when Claire's class was left off the class roster that was posted at school last week. It bothered me that the students in Claire's class were invisible but I thought that maybe it was a small clerical oversight. Then, it all hit me like a ton of bricks today, as we went to the meet and greet. First we went to visit our teacher in the special ed classroom. She is wonderful! She believes in Claire. After meeting a few of the other students in that class we wandered over to her 1st grade classroom (she is repeating 1st grade due to a lot of environmental craziness) to see her teacher that she will be mainstreaming with again. As we crossed the campus I heard a lot of children say to their parents, "there's Claire!" However, not one said hello to Claire. I wrote it off to start of school jitters. After 1st grade we headed over to meet the new school nurse. She was busy and called to talk to me later. Claire is missing a few immunizations. I explained that due to the regression associated with what we did not know at the time to be rett syndrome, we missed some but were working to be caught up. Her response shocked me. She felt that it wasn't a big deal because the kids in Claire's class didn't really mingle with the rest of the students. As she said that I couldn't respond as I was just trying to keep breathing without uttering a string of profanity at her ignorance. I somehow muttered that Claire was also in a reg. ed 1st grade class and she suddenly remembered that and went on with the rest of the interview. Between being left off the class list, being talked about and not to, as well as the assumption that Claire need not be immunized since she isn't around that many children, I realized just how much was at stake, a lot. It is risky to challenge the status quo. Perhaps it would be easiest to just stay in her special class and not make the rest of the school see that there are people who are of high value and cannot walk or talk. I am scared. Claire is in the best place that I can remember in years. She is thriving. Tomorrow I hand her over to a new teacher, an aide who is wonderful but new to Claire and this role and an environment that does not lean in the direction of true inclusion or overall understanding of people with disabilities. Things can go one of two ways. Either I will be right, Claire will scream when she feels isolated and scare her aide to death when she stops breathing due to anxiety, she won't eat for days and spiral into a pattern of seizures or it will go better than I could have dreamed of. Classmates will be yelling goodbye to Claire as I take her to the car and her aide will be telling me how seamlessly Claire pulled through her episodes and all of the fun they had through the day as they learned lots of fun new things. I really hope that I am wrong. I believe that I might be, rather hope that I am wrong. It is just so scary when the risk that you take is with your child but at the same time, if we had just retreated to the county program far away, there would have certainly been very little reward. So here is to hoping that my next post is about how you shouldn't judge and how great school is going!

The Verve Diet

When I was in high school I got to spend a few weeks in Antigua, Guatemala. I was part of a group that was spending time at a hospital playing with babies. These children had cleft palette and needed surgery but were too small to be operated on. Our job was to play with them as it was explained to us that they would grow better in a stimulating environment. Fast forward over a decade or so and I am presented with another similar situation. Due to the complications from Claire having Rett Syndrome we are constantly fighting to put weight on her to avoid a feeding tube. For years she has been on the edge of healthy. At 6 and a half years old, she was a whooping 39 pounds, with her shoes on. With a solid five week break from school, I thought it the perfect opportunity to work on a few things, one of them being Claire's weight. I figured that I would make calorie rich lunches and carve out a solid hour every day to make sure that she had enough time to eat as much as she possibly could. Funny, how whenever I try to plan and organize what I think is best, somehow a better plan emerges. I must say, the plan that haphazardly came together, is far better than what I had thought of. Claire and I have come to call it the Verve Diet. It started out of desperation, like most of our life these days. I was exhausted and down after a morning of seizures and just wanted to sit and pretend that life wasn't that complicated for a few minutes. So after sitting in the car while Claire slept off the crazy head stuff we went to Verve for coffee and a treat. Claire opted for a good fellow which consists of puff pastry, some sort of custard and olallieberries. It worked well so we did it again the next morning and the morning after that. In fact, we have now done this every weekday morning since summer school got out, almost 4 weeks. I had noticed that Claire seemed a little heavier so we weighed her. Words cannot express my joy/relief/pride when she weighed in at almost 44 pounds, that is a 10% increase in 4 weeks, never in her life has she gained like this. Needless to say, wishing to build on this huge success I decided that we should continue our daily Verve Diet. So this morning, we dropped Chloe off and headed straight there. As we came up to the register Jillian greeted Claire and asked her if she would like a good fellow today. Claire beamed a smile and looked right at them in the case. Jillian then continued to talk to Claire about which one she would like and picked out the 'best' one for her. As I stood and watched this interaction, a giant light bulb went off in my head. It's not just the calories in this delectable pastry that are helping Claire to be so healthy, but everything else around it. Each day not only does the staff greet Claire, there are several customers who say hello to Claire by name and ask her something random because that is what people do at coffee shops. There is normally some two year old little boy who breaks away from his parents and tries to push Claire and she loves it. It's a special little place where we don't have to explain anything, people just smile and not that, I'm sorry this is your life smile, they just smile. It starts her day out feeling accepted and appreciated. In the process of sitting and enjoying a good fellow every morning, not only has she gained a few pounds and improved her oral motor skills, Claire has become more comfortable being a part of the public. In rettland it often comes up at how scary it is to share our children with the world. We fear them being a bother (screaming is rather socially unacceptable) or people saying hurtful things even when they are well intended. This morning I was reminded not just of what Claire can add to a group, but just how valuable that sense of being in the normal world is to her. That is why the Verve Diet is now my favorite, better than a sensory diet, ketogenic diet or gfcf diet, it's is a safe bridge between our crazy life and the rest of the crazy world and best of all, exactly what Claire seemed to be needing.

Survival Mode

I think back to last summer it was a very challenging time. The healing process from the madness had started but transitioning to life as normal felt like a space shuttle re-entering the atmosphere and we were having to fight just not to burn up (I wrote about it here if you care to read). It felt like life kept ripping off my scabs before they were healed. Each day, I tried to manage all while fighting to find some extra space to make sense of the chaos that was still swirling in my heart and my head. I had been feeling and like most new things, it was hard. A year has passed. A lot has changed. The scabs have healed and I am left with very visible scars. Chloe is potty trained and and can feed herself without making a mess so there is a little less busy work for me. Yet, Claire is heavier, stiffer, she shakes and stops breathing more often. It is hard to see how over time, the chasm gets bigger, one child becoming dependent and requiring less while the other seems to need more help. The gap doesn't rip me into pieces every day like it used to. There is an odd rhythm of crazy that fills our days. It generally includes periods of laughter, community and strength along with heartache, loneliness and weakness, some how all woven peacefully together without too strong of a sense of being overwhelmed. I'm sure that there is more going on that I am absorbing that I just haven't rested enough to know what it is yet. For today, I am taking solace that this summer, we are operating in survival mode, not crisis mode. All efforts go to the basics, eating, sleeping, therapy and so on. Energy is conserved whenever possible and you just keep putting one foot in front of the other. But it doesn't feel like the ceiling is caving in or that the heat of re-entry might burn me up before I get my feet on the ground. I must say, that is a great feeling to not be experiencing.

Fading to anger

This morning Claire and I dropped Chloe off at her preschool and headed over to...Target. It's a pretty big deal as it went from being a 30 minute drive each way to being right on the way from Chloe's school to the ocean. Claire beamed and I thought to myself how different things are from just a few short weeks ago. I had even started to write a blog post in my head about how much I love drugs. I was going to explain why I was so hesitant to start her on them but once we did the positive change it has made. Last weekend she went to the aquarium with no episodes and yesterday was the last day of summer school with no episodes or seizures, the drugs were working! I am lexapro's new biggest fan. No longer would I have to fear Claire getting too happy, lest she twitch and stop breathing, with the medication, she was happy and herself without the horrible stuff. As I thought about this I looked into my review to see that her hands had stopped, her neck was bent back and her face taught, it was coming. First it was the dystonia and then it was a small focal seizure. I cringe as I say small because she still turned purple and before I could pull over she had gasped for air and started to foam at the mouth. Needless to say, I have decided that I would rather blog about how mad I am. I am really, really mad. I hate this! I just want to enjoy Claire and I can't. Sure she recovered quickly and still wanted to go shopping. She picked out a new hello kitty outfit but I had to stop and do deep breathing with her every minute or two as we shopped to ensure that she didn't all out stop breathing again. We went down to the cliffs to watch the waves and I couldn't laugh at the funny and witty things that she said because they weren't out loud. We went to Verve for some coffee and a treat and as much as I do truly enjoy time with Claire, I imagine how fun it would be to watch her feed herself, how she might fidget if she could. We came home and she loved her bath. I told her that she could have a special strawberry body scrub because her sister wasn't home but the truth is we were bathing without Chloe because Claire needed to be scrubbed, to find her body, to know where all her muscles were. I let her pick my fancy lotion and gave her a special massage which is really code for checking range of motion and I absolutely hate that I have to do this. Of course she knows all this too. Claire is a smart cookie and knows the difference between a gentle rub and when I am trying to get her to relax into her body. I truly believe that she might even hate that this whole charade goes on more than I do. Sure she handles it better. She grins and laughs her with her dark sense of humor whenever I screw something up. She is aware that for most, summer is fun and not just a series of appointments and therapy. Yet she plays along, knowing that regardless of what other people are up to, this is what we do and she does her best to enjoy it all for what it is worth. I do enjoy it, if you can enjoy something while simultaneously being really mad about the whole thing. I just imagine how much more amazing she might be if she could just use her body a little more and today I couldn't get past that thought. Maybe I will get some good rest tonight and in the morning I will sail right on by the anger and settle right into acceptance, I sure hope that I do.

Otters, Dolphins and therapy

A while back I remember going to the Monterey Bay Aquarium as we often do on the weekends. I was with Claire and we were going to watch the otter feeding. Here is the short version of what happened: people crowded in around Claire, the trainers talked about how important an enriched environment was, I started to cry, the trainers talked about how the otters are relearning to feed themselves by playing games, Claire started to cry, we left. Although we had been been back to the aquarium many times since then, Claire and I hadn't returned to the otter exhibit at all. Fast forward to this weekend. Saturday night we watched Dolphin Tale, Claire had loved it in the theater and we figured Chloe might like it too. I was busy doing this and that and didn't really pay much attention to it until Jared stopped me and motioned to pay attention. There was a little girl in a chair similar to Claire's that was looking through the glass into the dolphins tank. The little girl looked at the dolphin missing it's tail and proclaimed to her mother, "she's just like me". While that scene alone is enough to bring anyone to tears, the look on Claire's face as she watched and then looked into Jared's eyes was so much more amazing. Suffice to say, this is one of Claire's favorite movies and I suspect it will be for a long while. Sunday morning we got up and went to the aquarium. We did our usual tour and took a little break on the observation deck in the big open ocean tank. Claire was very peaceful and engaged as we watched the the large tuna, various sharks and schools of smaller fish gracefully dance in the vast space. I leaned in and asked her if she thought that Winter (the dolphin from the movie) would be a good addition to the exhibit and she clearly responded yes. Then, for whatever reason, it clicked. I mentioned the otters to her. I told her that much like Winter, the otters at the aquarium couldn't survive in the wild and that they are in the process of getting stronger as well. She lit up. We went on with the rest of our visit as we typically do. She touched the sea stars and the kelp. Chloe pushed her around like a maniac and we tried to keep her from running into too many strangers. Before we left Claire and I had a few minutes to ourselves so we went and sat on the glass at the otter exhibit. It helped that there were few other people around since their feeding was all over. She sat and watched with bright eyes as the otters played at the surface. I told her about the game that they were playing and that it helps them get better at being able to feed themselves and in that moment, she looked at me and with those beautiful eyes all I heard was "mommy, they are just like me". Funny how a little different perspective and slight shift in mindset can make the biggest difference. At first I hated the otters because I didn't want to hear the terms "enriched environment" and "therapy" at all more or less that otters get it when so often girls with Rett Syndrome don't. Looking at them through Claire's eyes I don't see my frustration and pain, I see equality and inspiration. Note to self, look at things through her eyes more often.

It isn't the best pic, but eventually Jared and Chloe met up with us and Claire took a minute before we left to show her dad what she had seen. I just love seeing those two together.

Happy Birthday to Captain Awesome

Today marks 33 years for Jared and I felt it appropriate to celebrate him here to start the day.

Captain Awesome, you make the most interesting man in the world look boring.

You enjoy scotch and cigars by the fire one night and have your toes painted with glitter while watching princess movies the next.

You ride your bike through the forest to get to the ocean because you know how to have a good time. 

You can screw things up pretty good but figure a way to make it all better.

You always have my back when that clever little three year old tries to pitt us against each other.

You take a day off to scrub the bathrooms and take care of the hair bow/ribbon "situation"

You can laugh and play games in an ER or a surgeons office better than anybody else.

You work hard all day and rush home to read stories and love on the girls.

You can hug other men that you barely know because you know how rett can make a man feel.

It hasn't always been pretty or easy but you have never quit my love and I am so proud of you! I can't imagine this life without you and look forward to when things settle down and we can begin to pick our own adventures instead of having them slung at us. Maybe we can hang glide over the ocean or climb El Capitan. Wherever the adventure lies, I know it will be good because you are part of the story.

Full

July has been full. Lots of good stuff and some pretty hard stuff either way I think the best way to describe it is full to the brim. With the few moments that I get here and there I am attempting to read a bit and enjoying a book by Henri Nouwen. The girls have also been enjoying an album that I got for myself so that has been a particular treat. Since I don't have my whits about me enough to write about all the other stuff swirling in my head (don't worry, it's coming, will post eventually) I thought I would share this video of the girls favorite song and a few quotes that have given me food for thought.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey 

“Somewhere we know that without silence words lose their meaning, that without listening speaking no longer heals, that without distance closeness cannot cure.”
― Henri J.M. Nouwen