Hello

My beautiful R

My beautiful R

I miss my Mum.  That’s a pretty extraordinary thing for a woman in her very-early-forties to admit to but here’s the thing: it’s been another of “those weeks” and my Mum has been away and consequently not available for her daily earbending from me.  I’ve been thinking about starting a blog for a while.  Pretty much ever since we started down this parent-carer road.  But not having Mum at the end of the telephone this week has rather forced my hand.  This blog is going to be about our adventures in the land that is Rett.

So let me introduce us.  I am married to G and mum to F who is 12, EB who is 10 and R who is 8 (written down, that looks a whole lot more planned than it was).  After a long regression, R was diagnosed with Rett Syndrome just after her third birthday.  She has a “mild form” of the disorder.  This is what a mild form looks like: R can walk but not far and doesn’t do stairs; she has no speech; she has no use of her hands; she has seizures occasionally and blackouts on a daily basis.  R is also smart, funny, adorable and a fully paid up member of our family.  I work part-time and am a full-time carer. I am exhausted 100% of the time.

But although I hate Rett and how difficult it makes R’s life,  I don’t want this blog to be one long moan. One of my friends shared a post on Facebook this week that recommended writing down all the good things that happen and collecting them in a jar.  Well, this is my jar.

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