On Rett Syndrome, on reading Keeping Katherine by Susan Zimmermann, and a moving post by Charlottetwenty09.
It will be almost 2 years in a few weeks, since I received the call from my paediatrician , of a positive result for Rett Syndrome for our Charlotte.
It was a diagnosis I had hoped she didn’t have as it talked about seizures, low life expectancy, severe mental retardation, non purposeful use of hands and lifelong dependency. It was one I had found after many nights trolling through the internet. Another paediatrician mentioned the possibility of autism before Charlotte was 2years old, but one of our early amazing physiotherapists commented she didn’t think her hand repetitions were stims, which normally fits with autism. So there I was googling repetitive hand movements and loss of hand skills and it led me to question whether it was Rett Syndrome.
I didn’t think I would still be feeling so devastated about it all, 2years later. Isn’t 2 years long enough? to grieve…
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