Parenting in Rettland

photoWhen we were taken into Rettland a lot of things were explained to us. I learned the lingo of the medical specialties, the educational advocate and became fluent in speaking in grief. Over the last few months there has been a new education, in parenting. You see, Claire isn’t the only child we have with Rett syndrome, it is affecting Chloe on a global level as well and I am at a loss. A few days ago Chloe snuck Claire’s hand splints and nail polish into Claire’s bed as she was resting. Without my knowing, she got both splints on and painted all of Claire’s nails purple. Then Claire did what she does with her hands, she randomly moved them all over and destroyed her fancy nails in the process. I heard Chloe telling Claire no and getting frustrated, so I went in. Chloe was mad that her sister didn’t listen and also afraid that she would be in a great deal of trouble. The full makeover for Claire (perfume, glitter make up, the works) was to be a surprise for me. Claire wasn’t supposed to get the nail polish all over the sheets, but she did.

I wasn’t mad. I was heartbroken. Heartbroken that Claire wasn’t painting Chloe’s nails and that Chloe has to take the role of the older sibling. Yesterday when Claire vomited in the car after her seizure Chloe had to go into our physical therapist office to get help, all by herself. Our therapist was on the phone so Chloe came out with somebody she didn’t know but trusted to help. While I am proud of her for being brave and helpful, I am heartbroken that she was looking across the parking lot, wanting to go play on the playground and we couldn’t because of crisis. We make the most of it but her childhood isn’t typical like the brain she has. There is a level of trauma she is exposed to daily and I don’t know what to do other than take it minute by minute, answer her questions and show her my unconditional love.

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