About

I am Mum to three children: F, EB and R. R was diagnosed with Rett Syndrome at the age of three.  I work part-time and am a full-time carer. I am exhausted 100% of the time. I hate Rett and how difficult it makes R’s life but I don’t want this blog to be just one long rant. A friend shared a post on Facebook that recommended writing down all the good things that happen and collecting them in a jar. This is my jar.

 

 

 

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2 thoughts on “About

  1. I’ve just started writing about our adventures in Rettland. L was diagnosed 2 weeks before her 3rd birthday and we just got the Tobii. I look forward to following your journey. Our is at blueberriesandgiggles.wordpress.com. I too try to keep my stories upbeat. But sometimes it’s hard. Most times it’s good. Especially when I see my sweetie’s smile. Be well and know that you have friends in NYC who are on a parallel journey.

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