The Face of Intimidation

Summer time seems to have brought a lot of very interesting things to the surface that involve our little Claire. It all started with our end of the year update on the IEP. Mind you that at home Claire has been saying all sorts of wonderful stuff on her talker and it has made life a bit easier. For example at dinner on Sunday she found a button that said, "I need to go to the bathroom." So Jared took her straight to the potty where he pulled down her DRY pants and then she sat down and peed, AWESOME on so many levels. So I am reading the note from the SLP that says that Claire does not understand the concept of choosing from a category of three to then get to more choices. Right, her talker has 45 icons and she found the page that led to the "I need to go to the bathroom." icon exactly when she needed it. As I read it I am thinking what child are they accessing, this is absurd! I thought about it for a while and came to the conclusion that after almost two years of working with Claire, some of the people still don't get it, aaaggggghhhhhh!!!! So it had become clear that I now need to take more drastic measures. This morning I talked with our SLP that we use for our home, the one who wrote the report to get the ECO2 because she believed that Claire had a lot to say (we like her a lot!). She was wanting to move our scheduled appointment back so that she could have more time to prepare. She was explaining that she wants to bring something in her visits that would help Claire to grow and make progress and she is having a hard time. We spoke about the SLP at school and her IEP remarks. It was then that she made a remark that really got me thinking. She said that it was good that the school SLP was retiring because when people have been at it a long time and they see something that they have never seen before and they don't know what to do it is intimidating. I laugh to myself as I type this but it is so true, Claire is terrifying, in a good sort of way, but still terrifying. We have so many really smart people on her team and people that really want to do what is best for her, but truthfully, no body has a clue, myself included. Poor little Claire. I know that she doesn't mean to scare people. Like when she gets upset because she needed to go potty and we don't make it and she becomes outraged which fades into deep sadness that she just can't do what she wants to. I can only imagine how intimidating it is for her. Every day is a huge mountain to climb, to use her muscles to chew and swallow and practice walking and survive Chloe's hugs. But she does it, and she does it with a big smile and pretty ribbons in her hair. I find myself renewed in my fight for her. I realize that most of the therapist she will ever work with never really know how to help her and will be overwhelmed by the many dimensions that is Claire. But I will help them to think that they can do, help them to understand how she works. And I know that all of it will be worth it, that the investment in Claire will always yield far more than I could ever dream of.


June Gloom

I have never been a person who really likes summer. I like to work, as a kid I liked being in school, I know, I'm a dork, but I'm a smart dork ;-) Anyway, I am so excited because I am enjoying summer. Maybe it's because the sun doesn't come out until after 11 most days and the high is about 79. This morning during my walk I couldn't help but notice the intense colors of the flowers. One of the things about they gray is that it makes color really pop. Wow, if that isn't a metaphor for my life! It is so true. Chloe is now doing things that only in my wildest dreams can I imagine Claire doing, and it is great! That was so hard to get out, deep breath. I am not sure what it is but I am really reveling in the greatness that is Chloe this week. She is so cute, so vibrant and absolutely amazing. I have found myself standing back and just enjoying as she gets her jacket and her purse and heads to the door when it is time to go get Claire from school. I do think that part of why I have been able to enjoy her is because Claire has let up a bit. Last week was long and painful, it just was. No school is no fun for our family. Now that Claire is in summer school her laughs are full, her smile is bright and my load seems a little lighter. So with the balance of shorter work days for Claire we are able to squeeze in a little more fun and still be rested enough to have it, it is great! I should say, it is great on the days that it works. Today was one of them and I am hoping that tomorrow is too.


10 Reasons That I Love it Here

Not a top ten, just the order that they came to me.
1. The trees immediately outside our apartment are amazing! Big oaks and pines that look stunning in rain, fog and sunshine.
2. The Verve Coffee Roasters. Often when I go in the morning the air is filled with the intoxicating aroma of coffee that is being roasted, which I have to say leads to an amazing cup of coffee to start my day.
3. Jess and Rachelle. My awesome friends that met me for a walk this morning so that I could kill time with both girls in their strollers (I can't do this by myself because I can't push two strollers at once). Not only does Jess push Chloe for me, Rachelle's "bunny" (tiny fluffy dog that runs in circles) licks Claire and makes her smile and we gab about silly things the whole way, making me feel like my life is completely typical.
4. As Chloe waves at random people over the coarse of our walk, people wave back and applaud her friendliness.
5. When Claire screams for a good 20 minutes straight because there is no potty around nobody glares at me like I am a bad mom. When I say scream I mean so high pitched that I have a kink in my neck from holding my ear to my shoulder to protect my ear drum during this event. I had to hold her arms down to keep her from biting herself. Somehow the passers by managed the perfect balance of an empathetic glance with just enough compassion but without staring.
6. The surfers here are awesome! Not only do they make good eye candy and are fun to watch, as Claire gained composure and we trying to walk again, one of them shouted out to me, "We have kids too, we understand!" I replied that she was just pissed off because she can't use her hands or talk for the rest of her life. Then I had the thought, that totally aside from Claire having Rett, this guy wanted to take a minute to tell me that all kids get out of control, once again reinforcing my sense of a somewhat normal life.
7. The smell of pot that I often encounter along our cliff side walks. Don't get me wrong, I am not a stoner, in fact, somehow I have never smoked anything. Having grown up in a culture of busyness and work, Santa Cruz is a drastic change of pace that I am learning to appreciate. I love being in a place where being busy isn't the end all, rather sitting on the beach doing nothing is.
8. I am throwing a baby shower for my friend that is adopting a 15 year old boy. I love being in a place that is filled with amazing people. Not only are they doing it, it is a huge happy celebration thing, so I am throwing the baby shower, how cool is that?!? I am so excited!!!
9. Jared can go on a ride after the girls go down and visit not one, but two amazing light houses.
10. The hammock swing on our porch. I can now spend hours on end doing nothing other than sitting in our hammock swing (that we got for Claire) and listening to the wind in the trees and the traffic on the street.


I'm a Good Mom, Really

Let me start by saying I am speaking more to myself in this post than I am to all of you reading this. It all started when Claire's SLP told me that I am a good mom last week. She went on about how I advocate and work with the school, blah blah blah. I had the thought, why is it that I have such a hard time accepting such a nice compliment. The answer was obvious, because down deep, I don't agree. I think it is easy to be critical of yourself, it is what our culture promotes. Having a daughter with Rett Syndrome seems to have created endless possibilities for the guilt and self doubt. When Claire starts leaning one way more than the other I say that I need to get it together and make sure that she is getting a solid 20 minutes a day of stretching. I blame myself as she slowly looses some skills and don't allow myself to take credit in her victories. Today I find myself at the crossroads of the end of school and summer, cue the extra load of guilt that I typically dump on my shoulders at such a point. Everyone else is out having fun, going to the beach or doing whatever. I can't leave the house with the two girls by myself because it isn't safe at this point. To add to that I can barely stop crying because I am either thinking about the two little girls that recently passed who are younger than Claire or I have some how missed reading Claire's mind and now she is deeply upset and once she stops screaming she starts sobbing because she hates Rett even more than I do. Despite this all, I have decided that I am a good mom. I am a good mom because I haven't given up and quit. I might have given up on certain tasks, but as far as the big picture goes, I am still fighting. Even if all that looks like is setting a goal of trying to make it another 30 seconds before I loose it and get frustrated, I am still a good mom. I am not sure how I got disillusioned into believing that in order to be a good mom your kid has to be making progress or doing something fruitful, but I can say that I am choosing to not buy that anymore. There, I said it, "I am a good mom just because I am trying". With the recent deaths in our community I have seen a lot of mom's struggling with the whole mess of emotions that comes with Rett. I really want to encourage you all to join me in believing that you are good moms, because you are.


Holy Emotional Rollercoaster Batman!

I think that I should start by saying that it has been quite a day. It began with a super giggly and happy set of girls that were ready to take on the day at 7am. We got Claire to school on time and Chloe and I were headed to the grocery store then to the park to play with her boyfriend Lucas and his super awesome mom. Of coarse nothing is that easy. Chloe threw a fit at the checkout just as the air kicked on and instantly I was in such pain from my Chrone's. I kept breathing and made it to the next moment only to find myself at the park. We were actually early (it was my one for the year) so I got out the snack trap for Chloe to eat her cereal from. She wasn't able to get her fingers in there to get the food, something she was able to do a week ago. Immediately I am worrying that she has Rett Syndrome and this is the start of the end. Then Lucas arrives, we put them on the swings and immediately Chloe is back to being a completely normal little girl, she even climbed up the slide before going down by herself. So I am stable for awhile, boring life as normal. On our way to get Claire from PT Chloe is chatting up a storm. Of coarse, the obvious reaction is to cry your eyes out when this happens. All I could think of is how sick I was when Claire was this age (really, really sick, temp. of 103 for a few months, Chrone's is so awesome!). I know that she babbled and had speech that was lost, but I remember very little of it. I gather myself together to go in for the end of PT. There is Claire, workin' it in a new gait trainer and loving it! Then her buddy Abby showed up and this is when things went into the realm of absolutely amazing. Abbey and Claire were in Music Together together back in the day. Abbey has gotten so much stronger and and just lit up as Claire walked over to see her. It was a moment that I would never have believed 2 years ago. It was the picture perfect therapy session! Claire came home grinning from ear to ear. The nanny comes, I run a few errands, nobody sleeps and now it is dinner time. Claire starts to vocalize so I run in and put her on the potty, which was apparently not what she was complaining about. She got so angry and was writhing with anger. I was so frustrated! I put her in her bed and told her that if she could calm down, I would turn on Dr. Seuss. It was then that I figured that she was upset because the audiobook that she was listening to finished without replaying, duh! She calmed, listened to the Fox with Socks came out to have lots of fun with dinner and even peed on the potty before getting into bed. With both of the girls down for the night I clocked out and it was time to work on our dinner. Earlier in the afternoon I had learned that a third angel this week was on her way to heaven. I chose to lay in bed and cry instead of cook dinner for Jared and I. This left me with the far less daunting task of takeout. As I drove I thought about it all. This is it! My life, my organic experience. Today encompassed the most pure joy as I watched both of my girls at different points in the day. I also was at a low as I sobbed in the middle of the day, trying not to think about how easily it could have been Claire that left too soon. Through it all the most amazing and truly beautiful part is that I was alive and felt through the whole thing. It might not be neat and pretty, but it is what God has given me, and I am grateful.


So This Is What It's Like

I am so excited to announce that I have had a run in of a typical nature with Claire and I am so excited to tell about it!!! Tonight I was feeling a little lazy so I threw some chicken in with brown rice and teriyaki sauce for dinner. After a few bites Claire said "want else" and I informed her that this was her only option, that the fridge was empty (not really a stretch). She then said "all done" and I told her no, she needed to eat. As she drank her milk she some how got to the fast food page. Then the order was clear "tomato tomato tomato". All I could think about was how Judy had talked at length about how when a girl with Rett hits the same thing over and over, she is not perseverating, rather driving a point home. So I go to the fridge and get the bottle of ketchup and explain that it is mashed up tomatoes. She likes it so I add some to the bowl, she eats two bites and stops again. This time she says "small appliance hot" Of coarse, the ketchup was cold, so now the rice was too! So I heat it up and she ate a bit more before saying that she wanted a "cookie". I was so happy to play her game because it was what I imagine "typical" kids do to their parents. It is a huge relief that Claire's weight is up a bit so I don't have to be in the position of desperately needing her to eat, like I have been for the previous 4 years. I love how ironic this device is for me! First I go to great lengths to give everything she says with it meaning so that she is motivated to talk with it. Now I have her commanding me like I am a little toy solider. It took so much work so that now I can do the work of normal life, but it is glorious! The smile on that girls face when she is bargaining with me is priceless and I am so thrilled that she has the ability to do it. I just pray that I can keep that same spirit with Chloe. She is babbling a lot and has three words now, something in my stomach tells me that the next word will be no, not sure I am ready for that yet!