How I do it, again

Last May, the lovely and wonderful Maren did a series on her blog with the theme, how do they do it? I was so excited and honored when Maren asked me to contribute. On the day that I was up, blogger crashed and link died , my post was gone and Maren was in Europe, so there was no trying to get it back. With the start of the new year I was looking back on previous posts and I saw that it had miraculously reappeared, so you can click here to read it, a little late, but that has never stopped me before!

Student of the Week

Last week was a pretty big deal. It was Claire's turn to be student of the week in Mrs. Torrez 1st grade classroom. With this designation came a lot of attention and responsibility. Claire got to lead the class in certain lines, do the calendar, put up pictures of herself on the bulletin board that was all about her. She also got to take care of Coco, the class pet. You can see him here helping out at pt.

A form was sent home for Claire to fill out all of her favorite things so that the class could get to know her. She had so much fun picking her answers and I was so happy to know that the info that I was sending in really was accurate and not just my well educated guess. Then it came time to figure out the pictures to send in and I was a wreck. I didn't want to send in too many or not enough and I haven't seen what any of the other children have done. Claire loves her typical classrooms so much, I didn't want to embarrass her. As it turns out, it all worked out fine. Claire's fantastic aide worked with her to choose which ones went up and there was no embarrassment at all. As the week went on I had a nagging feeling that I should take the opportunity to educate the class about rett syndrome. I kept imagining her peers asking their parents questions like; why is she is a wheel chair or why doesn't Claire talk. Most of them have no clue that she has rett syndrome, more or less what it actually is. How could they possibly answer any sort of question that is sent their way? I emailed the teacher and she said that it would be fine to send a letter home in the Friday folders. I wrote and rewrote the letter several times. Each time there was just something that didn't feel right. I tried writing it from Claire's perspective and mine. I wrote one letter with a bunch of FAQs and another with info about the science and how a cure is a real possibility. With each attempt it became clearer that I was not on the right track. Exhausted on Thursday night I broke. I finally broke to the point that I could think straight. These kids didn't need to learn about rett, they knew about Claire. With that thought I abandon the whole letter idea and went to sleep. As it turns out, I am so glad that I did! Part of the student of the week process is that on Friday, the whole class takes turns and everyone says what they like about the student of the week. WIth no help from me or a letter sent home, each of the children were able to say what they liked about Claire. The boost that it gave her was amazing. When I picked her up that day she was all smiles and so very content. Again she teaches me, just like she teaches others. You don't have to know all of the facts about rett syndrome if you take the time to know Claire, you will know enough.

PT

This was going to be a downer of a post. Saturday Claire had an episode while we were driving and it hit me hard. Later that day I actually strained my neck muscles from crying so hard. Instead of going on about my fears of her funeral, I have something much better to talk about, physical therapy! We took the last two weeks of the year off as her physical therapist went on vacation. On the last day of her vacation, she fell, that caused her to have surgery on her arm. I can't say that I was excited to hear that Sue would be out for an unknown period of time. I knew that in some way or another, it would work out, that kept me from panicking. Imagine my surprise when I got a call on the first day back to school, it was Sue and Claire could come in for her time on the treadmill. You see, Dave, Sue's boss was going to be her hands. Dave is the guy in charge of the CCS unit that we work with and is also a physical therapist, he just typically does more office related stuff, being the boss and all. He is the guy who signed off on Claire's eye gaze computer and the particular mounting system that we got for it, pretty important office related stuff! Back to my story, that day Sue coached Dave on what she does with Claire on the treadmill. It takes a very special balance of support and backing off at the same time to help her walk and I was certainly impressed to see how quickly Dave picked it up. Today was our fifth session with him and we had a wildly successful time on the treadmill.  At the end Claire didn't want to stand up, that's how I knew that she was really pushing hard even though she made it look easy. Before we left, Dave brought out a new toy of sorts for Claire to try. He was thinking about what we were working on and thought it was worth a try with a walker that she could rest her arms on. We tried it out and although it wasn't perfect, it was good, very very good. More importantly, she loved it. We have plans to try out other configurations with it tomorrow and I am hopeful that we will figure something out. The whole thing makes me excited. Excited that Claire is continuing to progress and excited that dispite some random circumstances, it is all working out well. Three weeks ago I would have told you that I couldn't imagine having to switch physical therapist as we have been in such a great groove lately. Yet with a fresh set of hands and eyes came a little different perspective and maybe yet another path that could lead to our goal. No, I'm still not glad that Claire has Rett syndrome but I am encouraged in it, so we will go on another day and look forward to the other unexpected stuff that we will have to be excited about, it's out there.

Another Wave

Here are a few pictures from my first week of the year.

Monday

Tuesday

Wednesday

Thursday-morning

Thursday-night

Friday

Saturday

Sunday

You can see, I had a pretty great week. By Thursday I almost started to think that I might need to think of something else to do, other than sitting and watching the waves, taking deep breathes of the fresh salty air. I was grateful each day for the beauty that surrounded me and the time to be able to take it in. I had started to wonder, is this it, is life really going to be normal? I really did even start to think that maybe our life was so stable that I needed to add to it. Is it time to take some classes, get a part time job, volunteer? Yes, I get three days with two hour increments to do nothing and I think I need to go back to work, noted, I am crazy. Of coarse,  when I got the call from the school that Claire stopped breathing for longer than normal and threw up a little I thought better of it. Then came Friday. I took Chloe out for apple juice at my favorite coffee shop. She picked out three books to bring in and read. That is when it hit. Like a giant wave it crashed on me, the grief, it was all too good. It wasn't this good when Claire was two. I never took her out to coffee to read stories on a Friday morning. Every Friday she had an hour of physical therapy first thing, then we worked on other things, but we weren't out, just having fun. I do take her out and we do fun things. Monday's picture was taken after we went out to the same coffee shop, only she gets whip cream, not apple juice. Then we took a walk down to the water and she had a major dystonic thing, so I sat and held her for 20 minutes while she recovered, then we walked on and eventually took the cute smiley picture. I so badly want it all to be good, but it isn't. The more that I think about it I see that as the challenge for the next year, to enjoy it and hate it and roll with it as it goes it's own way. As much as I hate it, rett syndrome is a part of my life, my really awesome and wonderful life, and it might just take forever for me to figure out how to balance that, but I might as well keep trying.

On New Year's Eve

As it has been getting closer and closer to New Year's, like many I have been thinking about the last 12 months. WOW! It has been quite a year for myself and our family. We have seen darker valleys and higher mountain tops. Claire's seizures and dystonia have pushed us in many directions, mainly toward the edge of sanity.  In the midst of it all Claire continued to grow in every aspect of her life. She is healthier, stronger, happier, calmer, smarter and very much her own little 6 year old self. Chloe is 2. She is an exhausting mix of energy and determination. Meanwhile she is the sweetest, most compassionate and loving little girl. As we have gone through the many highs and lows of the last year I have learned a few things. One of those being that we are not alone. It isn't just that we aren't alone, we are surrounded by really beautiful people. Both locally and across the country we have been supported by people too many to name and it has been a gift that I truly hold close to my heart. The other thing that I learned a lot about this year was me. I went through an identity crisis of sorts. Trying to figure out how I lost sight of myself over the years was one of the hardest things I have ever done. It is something that I am so proud of that I just want to shout from the top of my lungs, "hell yeah, take that, I did it!!!" I found that I am more fragile and strong than I thought. I rediscovered that I more than the sum of Chloe, Claire and Jared. I found that I had to continue to slow down even more and to tune out so much of the noise of life. Most importantly I found that I could. I know that going forward I can. It would be naive to think that 2012 will be better because Claire will wake up one morning and walk and talk or that I might wake up one day and not have the proud and self serving nature that I keep trying to fight. But it will be good. There will be highs and lows and whatever it is that is ahead of me, I look forward to going through it as me, the me that I fought to get back.

What We All Are

It started out as pretty epic, considering it was a Monday. Coffee with a new friend, strolling on the cliffs soaking up the sunshine, Chloe skipping and holding my hand, I even got to vacuum, something I get really excited about. Jared was coming home late so I enjoyed dinner and stories with the girls. It was all very smooth sailing. Jared called to say he was almost home and would stop for ice cream. Then I heard Claire, I ran in. She was purple and choking on her vomit, I assume that she had had a seizure. Just as we got her cleaned up, she had another one, just as I had suspected, it was a real deal seizure, so we brought her out to the couch. After a few minutes she had another one and that is when we did it. We pulled the diastat out and actually gave it to her. Immediately she was better, she even laughed in a genuine high sort of a way. It felt weird to give her such an intense drug at home with no medical supervision. At school if they give diastat to anyone they call 911, so I called the advice nurse. I knew they would be of little help but I just wanted to hear from somebody that we did the right thing. The nurse was clueless and had the on call doctor call me. This was a doctor we had never met so they asked a few questions, starting with, does your child have a seizure disorder? I responded that she had rett syndrome. Before I could continue on to say that she was medicated for focal seizures the doctor gasped, "oh I am so sorry!" I wish that I had responded something along the lines of "I am sorry that you missed the class on things never to say to a child's parents." But I just pretended not to hear it and went on about her history. The doc was not that helpful, she had the super good idea of contacting the nuero the next day, something I had already planned on. The next morning Claire woke up bright eyed and ready to go. In fact, she had an incredible week. I however have had the worst time shaking what the doctor said. Part of me thinks why on Earth would anyone be sorry about Claire, but I know the answer to that. She's different, what she has to go through is hard. As much as I would absolutely love for the whole rett thing to go away and for her to be able to run free, I don't want to go through life thinking about how bad her life is, because I think a lot of the time she likes her life, shouldn't I? I don't want people to be sorry that she has rett syndrome, I want people to see her for the amazing little girl that she is. Sure she has her challenges, they are obvious. But really, don't we all? I think of a conversation I had with a friend a few weeks back. When I told her how great she looked she replied, "cancer is on the inside, you can't see it." What we deal with is out in plain sight for everyone to see, but that doesn't mean that we need pity. Regardless of if the problem is on the inside or the outside, don't we all just want to be treated with kindness, respect and to be accepted for all of who we are, the good and the bad? Sorry that this is a bit of a rant, I am just getting to a place of acceptance I suppose. I don't want to live the worlds largest pity party, I want to live the richest life possible. As it turns out, my daughter's body doesn't work well, but I really don't see that affecting the situation one way or the other. I will laugh and cry and be alive through it, just like we all are.

The hardest thing

I know that this is going to make me sound like a royal jerk, but I don't like 6 year old little girls, at all.  Whenever possible, I try to block the thought of their very existence out of my mind. It won't always be like this, two years ago I hated 4 year old little girls and next year I think that it will be the 7 year olds that I will grow to resent. It makes the loss of what Rett Syndrome has taken from Claire so much more real when I see little girls that are the same age as her. When it is just me and Claire or even Chloe, Claire is exactly who she is and that is just fine. It is all about context. Next to Chloe she is a patient and loving big sister. At therapy she is the strongest fighter ever and at kid quest she is just one of the club. Put her next to a 'typical' six year old and I start to fall apart. I forget how funny, silly, smart, friendly (you get it, I won't go on) little girls are. It reminds me just how normal Claire is and that if her body would just let her, she would say similar witty things as well. Needless to say, this has been a challenge as I know that one of the things that Claire wants most, is to be with other typical little girls and to be accepted as one of them. This year has been great. She spends about 35% of her time at school in the mainstream setting and on Sundays she has a wonderful set of helpers that work with her in the classroom with the 1st graders at church. This has allowed Claire to enjoy the company of her friends without making me participate in it too much. A while back a friend of mine posted this. She discussed being both a 6 year old and a grown up and why we have to be both. But a big part of me just can't, or rather, hasn't. I struggle just to keep some sort of identity aside from exhausted wife and mother, to have to think like a 6 year old too, so I most often let other people do that stuff.  They are better at it and I have convinced myself that it is just better to go with every one's strengths, it's easier that way. Today, that wasn't so much an option. I knew that for one reason or another that there wouldn't be a helper for Claire at church today. I figured that I would take her to watch the service and when she got bored we could sit in the coffee shop and read. I took Chloe to her class while Jared unloaded Claire's chair and got her rolling. When I met up with them I had two nagging thoughts in the back of my head. 1. Ask Claire if she would rather go to Sunday school or big church. 2. When faced with a fearful situation lean in the direction of what seems harder (something a friend encouraged me to do a while back when life seemed it was sliding sideways). You see, I was under the delusion that she wouldn't want me to go with her to Sunday school as there has been a long pattern of her enjoying her independence apart from me. So I thought it was a safe bet. If I could get her to choose to go to big church with me, then I wouldn't have to deal with the guilt of running from my fear. Too bad that she was unavoidably clear, she wanted to go be with the kids. So I took a big gulp and we turned around to walk back to the building full of giggling and wonderful little girls who were certainly going to do nothing other than rub their wonderfulness right in my face. Sure enough they did. As we entered the room immediately I heard a little girls voice say, "hi Claire!" It was our old neighbor that we hadn't seen in almost a year. Quickly it was time for singing and dancing so we made our way over to the large group of children (maybe it was only10-20 but it felt like 100) and I got Claire out of her wheels so that we could join is as best as I could figure out. Claire absolutely loved it. She lit up brighter than the biggest Christmas tree, it was breath taking. When it was time to sit down for the story I noticed that another friend, a little girl from Claire's school that was at her birthday party had come in a little late and chose to stand right next to us for the songs. She moved in a little for stories. Our old neighbor friend came and sat on the other side and held Claire's hand. There were two people that were dressed up in absolutely ridiculous elf outfits that were teaching the lesson. As they shared the story Claire laughed out loud a few different times along with the other children. My heart dissolves at the sound of her pure laugh. It is the closest thing to her voice aside from her screams when she is upset. She gave me the signal to leave the room so we did and she had a dystonic episode, that she had the peace of mind to let me know that it was coming and she wanted to be alone is another thing that just blows me away. As soon as she recovered and could hold her head up she wanted to go back. Things were wrapping up, we helped the little girl that sat next to us with the stapler, ate a few gold fish snacks, said good bye and went to get Chloe. As we walked out, the guy that told the story, who was still dressed like an elf, stopped to say how much he loved it each and every time he heard Claire laugh. It was a genuine nice thing that he said but it was like a bomb in my head, Claire is a very special little girl. She touches people in a really special way. Her laugh says a lot more than most normal little girl laughs. She contributes to the group, she encourages people, they love to see her come alive just like I do. Funny because the lesson was on generosity and it was I who had wanted to keep Claire all to myself. So all that to say, that was hard, really, really hard, it was wonderful and most importantly not just for me but for others. Maybe someday I will remember that it isn't just about what I do for Claire but what Claire does for the world.

1 Tim 6:18 They are to do good, to be rich in good works, to be generous and ready to share,