“The Trick is to Keep Breathing”

This week was Scottish Book Week. Inevitably, there was a Greatest Hits List of Scottish books compiled to coincide with this event. Funnily enough, I’ve been thinking a lot, recently, about one of the books that made the Top 10 – Janice Galloway’s The Trick is to Keep Breathing. In truth, I’ve been thinking less about the book than its title, which has a particular resonance for us.

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R was never a fluent speaker but she did talk. She lost her speech at two and a half. By three and a half, she had lost the use of her hands as well. This has presented her speech and language therapists with a problem. For children who can’t speak, there is Makaton – signing, which requires the child to use their hands; PECS – which involves choosing a card which represents an object or a feeling etc and handing that card to the communication partner, so hands again; iPods/iPads – hands needed here too. For the child who can’t use their hands, as far as her speech therapists knew, there really didn’t seem to be much available, and they seemed to have very little idea where to begin with her. Continue reading

With the Beatles

If this blog had a soundtrack, it would be the Beatles.  Not any Beatles, mind you, early stuff mainly, nothing sung by Ringo and nothing from the dodgy Sgt Pepper period.  R’s music is the constant in our lives providing the background to successes, crises, appointments and disappointments and it’s hard to think of R without starting with her music.  Continue reading

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.