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.