Justin Bieber, Hello Kitty and playing with fire

I had this really great post that I started to write about our morning. Between the excitement of her new Hello Kitty swag and that we had obliged to listen to Justin Bieber this morning at breakfast, Claire was over the top excited. So excited that she had a crazy episode, her body overcome with dystonia for a few minutes. While she was gone, she was not out. She fought it and came out of it fairly quickly. After recovering for a few minutes she snapped back into her body, she was even more present than before the episode. Chloe was trying out some new shoes, running in circles and Claire's pure voice came out, she said "yeah" and laughed so hard. I looked at Jared, smiled and remarked that as great as it was, it feels like we have to play with fire to get there. I have a lot more that I want to say about this. It's a pretty big deal. I thought about it as I took the girls to school and enjoyed my morning cappuccino. I tried to write but the emotions were just greater than the words. So I gave up and went for a walk. Lucky for me, when I leave the place where I get coffee and take a walk, I end up sitting on a bench here.
You would think that with this to soak in I could sit and clear my mind, but no. My thoughts were loud and unorganized. I tried to slow down and sort them out but I couldn't. The best that I can figure out is that this is a result of fatigue from a lot of emotion. I keep trying to rest up but the emotional fatigue seems to outpace my ability to sleep. After about 30 minutes I was able to slow down a bit, the noise in my head was more manageable but not enough to think straight. So I opted to walk some more and I ended up on a beach. I have been spending a lot more time here lately. Today the tide was out a little further so I thought I would go take some pictures to send to Jared, kinda my way of saying thank you for being at your job, I love the life that it provides us. While I was poking around, looking for a big open anemone a miracle occurred, I stopped thinking. It normally takes me a lot of work to get my mind to stop but it just did, all on it's own. Perhaps it was being enveloped by the salty ocean air in the gentle breeze or the sound of the waves, slowly rolling in. Regardless of what it was, it was indeed lovely.I was happy to be able to snap this pic to send to Captain Awesome as my thank you of sorts.
I wish that I could go on to write about the amazing clarity that I then experienced as I stood there watching the surf. The only thought that I had was, that's why we call him Captain Awesome, Jared was right. Jared has always loved tide pools. I never got it. It's not that I didn't like them. I have looked at them before. I have enjoyed them before but until today I never experienced what I can best describe is their surreal calmness. They were like poetry without words. In a sense it was art, so much emotion was conveyed but not in a way that was limited by language, it truly was the release that my soul needed. I still don't know what to do with the whole issue of my life feeling like I am always playing with fire, but at least I know where I can go to get a break from it.


Harder Than it Looks

Lately I've noticed that I have been a little bit more volatile that I normally am. Over the weekend I was disproportionately upset with the people who didn't know how to navigate a doorway with a wheel chair and the seagull that almost crapped all over me. So I wasn't all that surprised that when we went to counseling on Tuesday, Jared suggested we talk about my anger problem. Me angry? Yes. The worst part is that there isn't a really good reason. I wish that everybody not thinking like I do was a good reason to be irritated but it's not. As we talked, it also came out that I am tired. Sure part of it is that there was spring break and we had been sick and as much as I wished that was the problem, it wasn't. You see, I had been doing really well. After a year of climbing back up after a crazy few years I thought I was rested enough. I started to add things back in. Harmless things. A bible study on Monday nights and volunteering on Tuesdays, slightly higher expectations of how organized our home should be, nothing major. The catch was that in the process of trying to get back to my more normal life, I cut out sitting on the beach for an hour every day. Who does that anyway? Nobody. Certainly not a mother of two young kids. If my goal was to get back to normal, then it makes sense that I would take less time out for myself, that's what everyone else is doing. Sure I have had people tell me that it is acceptable and a good thing that I rest and take a few hours to myself every day but I don't believe it. I want to, but it is hard. It feels extravagant to take that much time to myself even if I know that I need it. None the less, knowing that it is what I have needed I went back to the beach. On Wednesday Chloe came along.

On Thursday I walked with a friend along the bluffs.

This morning I was still trying to convince myself that it was alright, even when life isn't in chaos mode, it is still alright to take this much time to rest and restore. Not just to get some reserves in so that when life spins out of control again I am ready to handle it, but just because it is good.

As I sat there this morning I noticed that I am a little bit better, my head a little clearer. I realized that I just move at a different pace. I have learned to slow down. Every once in a while I forget why we go slow and I start to speed up but I just can't handle it. The hard part is that it seems there aren't a whole lot of other people that move at a slow pace. It is hard to connect with other moms when they are going fast, manically moving from one activity to the next. It is true that Claire has helped me to see the value in slowing down. When you are with her it is the only speed to go. You just can't see her success when you are going fast. In a way, she forces me to slow down because I do want to see her world and the triumphs that she has in it. Without her showing me the beauty of slowing down, I don't know that I ever would have seen it. I understand why others don't appreciate it like I do, most likely they haven't been shown the true beauty of it. As I sit and struggle with this I am curious, do you struggle with this? Do you feel guilty taking time for yourself even when you know that you need it?


We are better, sort of

Last post I wrote about how we had been knocked down pretty hard but that we are getting back up. So it makes sense that a lot of people have been asking me lately, "Is Claire feeling better?" It is a reasonable question. It demonstrates that people care, but I haven't known how to answer it. We aren't in a hospital. She is eating. So part of me says that the obvious answer is "Thank you for asking, she is so much better now. We are doing great!" Then I think about it a little more. While she was sick a lot of the issues that we have due to rett syndrome subsided. It feels horrible to say that there was an up side to having the flu and pneumonia but there was. While she was sick there were no seizures and no dystonia. There was no twitching and although her pulse ox was alarmingly low, she didn't actually stop breathing like she typically does. Now that she is better, that fun stuff is back with an added dose of intense sadness because she hates having rett syndrome, it's amazing...not really. One of Captain Awesome's friends put words to this that pierced my heart. He said, we have to remember that your good is still worse than a lot of our bad days. It's a true statement and for some reason I struggle with it. Much like I struggle with the 'is she better question?' I so badly want to answer that everything is fine. On a level it is. She has rett syndrome and while that creates a lot of obstacles she has a very full and often satisfying life. However, even with lots of good stuff, Claire has more health challenges than she wished she did, hence the sadness.  We really try to focus on life not depending on Claire's health in order for everything to be fine. If it did, I don't know that I could ever give a satisfying answer. So maybe it's the question that is what really bothers me. The answer to a question with regard to Claire's health is never going to be a good one. If the question was more in the direction of how are you I would have a much better answer. Something along the lines of; even when everything is really messy and hard, I have such comfort and peace, as much as my soul grieves these circumstances, I am alright and that is such an amazing thing to experience.



I suppose that it is slightly ironic that in true Miss Amazing fashion, my month of amazing didn't exactly turn out as I had planned. I had so many fun posts to write about the many amazing things around me, but I got the flu and didn't have enough energy to think in sentences more or less type. A few days after I fell to it, Claire got it. Then as she almost started to get better, she got a secondary pneumonia. She went 11 days without eating solid food. We used syringes to feed her pediasure. It wasn't fun. It was in fact, rather scary. This certainly wasn't our first round in the world of crisis mode. We are sorta experts at operating in crisis mode, or so we thought. This round was different. This time we were connected. Connected to our hearts, able to feel the pain and the fear of the reality of our child not eating. We were connected to friends who came around us in support. We had people around us to encourage us, a friend brought over the most amazing homemade chicken noodle soup that I have ever had and a few different people were available to take on Chloe and her energy while Claire and I rested. It truly was amazing. So instead of blogging about amazing, I was just sitting back and absorbing it and that was indeed such a beautiful gift. Crisis mode takes on a whole different tone when you are connected, one that has more hope than the version of crisis management that just involves one being super strong and trying to merely survive. Then this morning, literally the clouds broke. After days of grey and rain it was sunny and warm and Claire woke up with her trademark grin that we had missed so very much. She ate her entire breakfast and laughed at Chloe's ridiculousness. Since it is now spring break, we dropped Chloe off at preschool and opted for a stop at Verve for coffee and treats before heading down to the ocean. As we rolled, Claire had the sun on her face and a big smile. Somebody on their bicycle even commented that it appeared that she was indeed enjoying herself immensely. Sure that comment made me cry a little bit, Claire has such a special way of blessing everyone around her when she can be herself, and I appreciate each and every day that she can do that.