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.
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.
On Thursday I walked with a friend along the bluffs.
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.