The excitement from my little procedure has died down and it’s back to life as normal. Normal on our terms, which is still pretty exciting and I am still fairly exhausted. Perhaps I am more emotionally exhausted than normal because I am having to stay out of the sun which really isn’t that much fun. I miss standing with my feet in the sand with the warm sun on my face. Maybe I am emotionally drained because the end of the school year is coming, bringing with it summer, fun (my biggest weakness), new caregivers and classrooms. Claire’s brain is overwhelmed by this too and somehow when her brain is overwhelmed and her body twitches, mine does too. So I have been standing in the tide pools, with my big hat on, in a sort of shock, trying to make sense of it all. A few weeks ago our counselor asked Jared and I what our dreams are for the next few years. Immediately neither of us could think of anything, eventually I came up with the dream of not living up a flight of stairs and Jared wished to get to ride his bicycle more. We were told to think about it more, to try to dream big and I’ve been working on that, all the while living what sorta feels like a series of crushed dreams. I remember many years ago the dream was simple, we dreamed of living in California, perhaps close enough to be able to visit the beach occasionally. Jared dreamed of working in an industry involving motorcycles and I wanted to be a stay at home mom. Well, here we are, close to the beach, check. Great job with Ducati, check. Stay at home mom, well…it’s not exactly like I had dreamed. I don’t think I need to explain that much, in my dream our 6 year old walked and talked and I was the room mom for her 1st grade class. We are close, but doesn’t that only count in horseshoes? I have been fighting the concept of dreaming. I did it once and I got burned pretty bad. But there is a catch, a really big catch. As much as that portion hasn’t worked out like I had hoped, the rest of it is better than I could have ever fathomed. Through the process of being broken and weak I have grown and seen life as this entirely alternate universe that is so much more amazing than the world that I first perceived. I’m still not saying that I am glad or thankful that Claire has rett syndrome. I think the idea that I am grasping at is closer to that of realizing that I don’t have the best plans for my life. But that is really hard to grasp because I feel like I can make some really good plans. Then each day, as what I intend for each moment slowly slips out of my plan and my control the greatest things seem to happen. I meet people I wasn’t supposed to meet and I am blessed in ways that I hadn’t thought of. I see my needs met before I see how big the gap was to begin with. It is all just so surreal right now. As I let go, mainly because I am too tired to hold on, I get to witness such special things each day. I really am trying to think up some new dreams, bigger ones. As I think about how it is just a starting place to for things to go wrong and get better it gets a little easier.

4 thoughts on “Dreams

  1. you visited me at one-row.com and I followed you right back here. WOW. I needed to hear this today. I. am. tired. In the words of Theoden from Lord of the Rings: Dark have been my dreams of late~

  2. I can so relate to 'dreaming' … i always had such an amazing dream of my future with a wonderful family of my own…. well i have that, but it is so exhausting & wonderful at the same time, i already see that having a child with a disability brings you so many up's & downs, but thats just part of the course i think. The ups are so worth it though as our life is becoming so enriched, but the price we pay is that our daughter has rett syndrome, if only we could now take away the rett syndrome & wouldn't we live our life in such a different way……
    Love to you & your family…

    Janie x

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