I am sad that I didn’t end up posting each day like I had planned to. There are so many facets of rett syndrome that we are working through right now and I have so much that I want to share. Yet that is the problem, there is so much. I was at dinner a while ago talking with a friend who lives a life dramatically changed by rett syndrome as well. We were discussing life and she remarked that everything happens at elevated levels. The people that we meet in our circle aren’t just new acquaintances, immediately they are dear to our hearts, people that we would go to great lengths for. It is surreal to live life this connected to people, it gives such pure joy. At the same time, our pain, so much greater. When I hear Claire in the morning before the alarm goes off she isn’t just playing in her bed, she is gasping, struggling for air while the dystonia grips her body. Jared runs in I grab the oxygen and we wonder if this is going to be one of those days that her body gets no rest. When the sun comes out I don’t just notice the weather I soak in its glory, the cool fog, the warm sun, whatever it is it reminds me of seasons and balance. Captain Awesome labeled our life “spirited”. It seems to better describe our entire world. Sure I could describe my life as difficult or overwhelming but that doesn’t do justice to the intense levels of good that we experience within the days. We got the term from a book that our pediatrician told us to read and reread over and over for Chloe;  Raising Your Spirited Child: A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive, Persistent, Energetic.  Without an option, we have embraced Chloe and the intense levels that she experiences things at. I know that we have an option for the rest of life. I could numb with any number of devices but I have grown so fond of this really full life for the most part. In the last week we have had a lot of plans changing and seeing our life as spirited has helped to roll with it. Friday we learned that we have to be out of where we currently live by Nov. 11. I was shocked at first but as time goes on I am less and less phased by it. Sure, move out before we close on the place that we are buying creates some complications but I am really good at working with complications. I booked the Uhual and a hotel. I also scheduled furniture delivery and carpet cleaning for the 9th, just in case we do close early. I know it would take a miracle but I see at least a hundred every day so I figure it could happen. Both of these pictures were taken on the same day, a small example of how varied and beautiful life is and how good I am at procrastinating, I probably should have been packing!

2 thoughts on “Spirited

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