Awesomeness and expletives

I’ve been thinking a lot lately about the contrast between light and dark. I see it in the comedy and tragedy masks that hang on the wall. I see how the sun lights up a tree that was once in a shadow only to reveal amazing detail and life. Darkness and light need each other, they give each other context. Much like joy and pain work in some sort of bizarre harmony to create moments that inspire and are full of awe, like how compassionate Chloe is as she holds the oxygen mask on her sisters face and gently wipes her hair away from her eyes. I tell myself that it is those moments that life is at it’s purest and have been trying to convince myself that those are moments of beauty, but I can’t. I am angry, so mad that all I want to do is swear. Perhaps somebody walking by watching me just swear out into space would think that I have Tourette’s, oh the irony. Can I back up and tell you why I am so over the top filled with rage? Over the course of the previous week Claire had made some very big gains in her physical therapy. It was in that excitement that I realized that I had in fact given up hope that she would walk on her own one day and while the progress was promising, I doubted. On top of that, Saturday night, while I was on duty, Claire puked all over herself and I didn’t hear it and run to her aide. Then Sunday morning she had a huge seizure and there was nothing that I could do other than hold her while she lay catatonic. All of it worked together to throw me into a spiraling depression on Monday. By the end of the day I knew that I had to fight it, that I couldn’t give in, that things would ease. So I told the girls we could have a dance party. My heart filled with joy as I watched Chloe twirl Claire around the room, both of them smiling and giggling. I was back, I had fight, Claire’s smile reminded me of the thousand reasons why we don’t give up. We all sat together to watch the video and that’s when it happened, again. Before I could ask for help Chloe ran for the oxygen tank, Claire turned a deep shade of purple and my heart plunged. I grieved the rest of the day and hoped that somehow, Tuesday would be better and sure enough, it was. I spent time in the sunshine, took care of some business and picked up a happy and very regulated Claire who went on to do more amazing things at physical therapy. However, before we were two minutes out of the parking lot, the brain storms hit again, I flew into the gas station and started to help her breathe once more and as I type this, she is still laying still, recovering. There are so many things to be mad about it is hard to pick what I hate the most, the part that she has Rett Syndrome, the part that we are still working on walking or the part that these blasted brainstorms are something she needs. I’ve learned enough to know that this is how she learns, how she grows. I know in my head that she is making new connections that will serve her well, I know that this is a sign that she is growing and getting stronger both mentally and physically and who wouldn’t want that for there kid? Maybe me? I know I don’t have the choice, but I wonder if it is worth it. If learning new things means playing with fire in the form of brianstorms that shake her and rob her of the ability to breathe, is it worth it? I don’t know and it doesn’t matter much what I think, Claire wants it. She wants to learn, she longs to walk on her own, she loves to learn in school and she knows the price that is paid for fun and learning. The reality is that this is our life, Claire will continue to surprise us with her success and scare us with her vulnerability often in the same moments. Hopefully I won’t be this angry through it all, I am sure I will cycle through the other stages of grief with some sort of regularity. If you happen to bump into me somewhere and ask how I am doing, don’t be surprised when my answer is “Fucking awesome” I’m not trying to be a jerk, it’s just the only thing I can come up with to describe my truly wonderful and screwed-up-beyond-belief life.

4 thoughts on “Awesomeness and expletives

  1. Thanks for sharing this – I just wrote to someone that I was doing horribly wonderful. I think fucking awesome is a much better way to describe it.

    Thinking of you and your girls!

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