Mise En Place

One of the most glorious things in my life happened this morning. Our sweet little energetic Chloe bounded out of bed early on a Saturday morning and offered her “sous chef” skills. She requested permission to prepare herself bread with almond butter and jelly.

Before I go any further, you should know that I am neurotic about MY kitchen. It comes from my background working with food, when cooking happened in a clean white jacket and everything was organized and labeled, it’s a system not everyone appreciates like I do, particularly 6 year olds.

My bed was warm and my back ached, so I granted permission and off she went. I prepared myself for a sticky counter and jars with missing lids, realistic expectations go a long way when finding balance with the force that is Chloe. I went down and much to my surprise, there was no evidence that my little sous chef had been in my domain. I asked her where the jelly was. She opened the door to the fridge and said “mise en place!” It was a miracle, she does hear what I say! It was so much more though. Everything does have its place and that’s why I’ve been struggling with October.

Eight years ago when Claire was diagnosed with RTT October was Rett Syndrome awareness month. An article in the paper actually led to us meeting other families, it was a point in time that raising awareness was crucial. This year I have struggled to raise awareness as it feels like I talk about Rett all year-long, I don’t want to be the person who just talks about their issues and constantly takes. Yet the slow constant stream of progress needs to be shared.

Captain Awesome and Claire, having a blast at Disneyland for her 10th birthday recently. We loved how it wasn't about Rett and ALL about CLAIRE.
Captain Awesome and Claire, having a blast at Disneyland for her 10th birthday recently. We loved how it wasn’t about Rett and ALL about CLAIRE.

I am working to find a new place for Rett syndrome in our life. It ‘s not in the center and it certainly won’t dominate an entire month for me. It’s always going to be there, guiding many of our decisions, setting some boundaries and testing our limits. I don’t have an answer for this today but I do know that I am looking for a new place for Rett Syndrome, everything deserves it’s place, just not in the center.

2 thoughts on “Mise En Place

  1. We are in sync lately you and I. I too couldn’t commit to crusading as I have in years’ past. I’ve been too exhausted watching as Eva claws consciousness back from the seizures that were robbing 85% of her waking moments. Thank God the medicine that probably wouldn’t work did work. Now, she’s 75% cognizant and I’m glad.

    But now I feel exposed, and tired just from writing that to you and our friends here. And I don’t want to feel that way all the time. Raw, showing where I’m bleeding.

    So I posted the Today Show and I pointed out what month it is. And I think that’s going to have to be enough. Because you and I Colleen, we cannot give more or better than our best. And I love your best best and your worst best.

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