The Adventure

There is a saying from one of my favorite movies, “The adventure doesn’t begin until everything goes wrong.” In October of 2007 things officially went wrong when our beautiful daughter Claire was diagnosed with Rett Syndrome. She wasn’t supposed to lose the ability to feed herself and the words that she had. Scoliosis and seizures were not part of the plan but that is in fact where we are. In the spirit of adventure I have affectionately named this crazy world that we exist in Rettland. In Rettland average things like a trip to Target morph into epic adventures full of heroes and villains. In Rettland the highs are higher, the lows are lower and you can have them both in the same moment. In Rettland things get a little crazy and I have learned that community and connection are not optional. There are many of you on this journey with us, scattered all around. My hope is that maybe my rambling of our adventures would encourage you and remind you that none of us are alone in this.

4 thoughts on “The Adventure

  1. Love and live your analogy of adventures in Rettland! Our daugher has CDKL5, very similar to Rett, and you have managed to make poetry out of our daily chores and routines with your words!

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