The World by Chloe

She talks, she never stops. When she started to speak a while back I was in awe. It was a miracle. Still, I am in awe when she speaks, more because of what she says, so I thought I’d share some of the world from Chloe’s perspective with you. Here are a few of the things that she has said in the last week and a little of their context.

During nap time I overheard her leading circle time, to her imaginary friends he says, “brass monkey, what song do you want to sing? The funky monkey? Alright I can play that on my guitar.”

In the car, listening to Airborne Toxic Event, “When I grow up, I want a rock n roll accordion that is bright purple with pink polka dots!”

She doesn’t just say fun things about music, in fact, most of the more surprising things that she says involve her sister, who she cares so much for.

In line at Chipotle, another little girl stared at Claire. Chloe, “Mom, does she have rett syndrome? Look, she’s talking with her eyes!”

I’m trying to make the beds and the girls were playing in the other room. I called out to ask Chloe what she was doing. Chloe “Nothing mom, nothing! I’m just trading mouths with Claire.” Me, “What?!?” “I traded mouths with Claire, so not I have rett syndrome and she doesn’t”

Watching the movie Tangled, there is a mime in the scene, “Look, he has rett syndrome too!”

When I picked her up from school last week, Chloe’s  teacher explained that during snack time, when the bowl of oranges was passed to her she just looked at them. The teacher asked her if she wanted some to which Chloe exclaimed, “I said yes with my eyes!”

There are so many more funny things that she says, but most of the ones that really catch me off guard have to do with Rett syndrome. Chloe’s a little obsessed with the whole thing really. She has reminded me of what a big deal it is to me too. I work so hard to enjoy Claire for who she is, outside of her diagnosis, that sometimes I forget to acknowledge the role that Rett syndrome plays in her world. So….October happens to be Rett syndrome awareness month and in honor of that and the role that Rett plays in the lives of many that I love, I am going to try to write every day about a different facet of life and Rett, we will see, here goes!

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