Rett syndrome is a neurological disorder caused by a faulty gene that affects mainly girls. Our daughter Amy was diagnosed with it in June 2009, shortly before her second birthday. She also has congenital heart disease. This blog reflects my family's experience of Rett and my own reactions to it.

Sunday, 1 December 2013

The day she chose a present

The lovely lady on the check-out in the big, crowded, pre-Christmas shop last week looked at Amy and smiled. Amy looked back and giggled. It was the musical-cookie-tin-in-the-shape-of-a-Christmas-tree. Give it a twist and it spins round and plays 'Jingle Bells'. Tinnily, repeatedly. The lady said, "Oh that's driving me mad. I've been listening to it all day. I wish it would stop!" Amy laughed; she carried on saying the same sort of things; Amy laughed more. She was having a joke with the shop-lady, and loving it.

Amy had very clearly noticed this irresistible item while we were shopping - looked at it - looked at me. And I said, "Do you like that? Shall we buy it? Shall we give it to the C family?" She clearly indicated "Yes I agree". So I said, "Actually Amy, is one enough? Shall we get one for J too?" More agreement, and much enthusiasm.

I have never enjoyed Christmas shopping more. Being there with her while she clearly indicated to me what she thought, what she wanted and that she understood and appreciated what the shop-lady was saying, was really great. Partly because crowded shops and Amy are rarely a successful combination (to put it mildly - mostly I'd do anything to avoid them, but she was having a particularly good day and I was feeling optimistic). Partly because Christmas always seems to point up more than usual all her differences, and it's complicated enough working out what she might like to be given, let alone expecting her to choose things for other people.

But that's what she did. We had a moment where she showed me what she knew, what she wanted, what she thought was funny. Of course most young children like tasteless items that play tunes - why would Amy not like them too? We left the shop with the odd burst of 'Jingle Bells' escaping from the bag that was hanging off her chair, feeling extraordinarily pleased with ourselves.


  1. I'll love the tune of 'Jingle bells' for ever more ... G xx

  2. Stumbled upon your blog at close to midnight in the states. Haven't read too many yet but I've enjoyed so far. My older sister had Rett's, one of the very first diagnosed by Dr. Rett in the states :) (I'm a little proud of her..). I'm now pregnant with my first child and wondering if it'll be a girl- just know that when Abby grows up she will be far more grateful for Amy's disease than you can ever know, and she's already leaps and bounds better off than any other kid with a sibling on her block. She'd be entirely different without Amy..and based on my experience with Jamie, they definitely understand eachother greater than any doctors can assess. (Especially the jokes, Jamie always laughed right at the punch lines, even when everyone else said it was just a coincidence I knew it wasn't) :)

    1. Thanks for commenting Kasey - I really love hearing what siblings of girls with Rett syndrome have to say about their sisters. Abby and Amy have an understanding with each other that they don't share with anyone else - and yes Amy always laughs more at Abby's jokes than anyone else's :)