Friday, 19 August 2011


My daughter had a wave yesterday.

That’s how we refer to an episode where she is overwhelmed by her emotions. (A bit like me watching the end of Casablanca after four glasses of wine).

People with Prader-Willi are emotionally immature, and struggle to control their emotions. In some, this might be anger and frustration, particularly when food is denied to them. In my daughter, it takes a slightly different form.

Every now and again, she gets upset. And I mean really upset. A body-wracking sobs/ tears rolling down her face/unable to be consoled kind of upset.

The strange thing is, we can’t always work out what sets it off. It might be tiredness - but then there’s plenty of times when she’s tired that it doesn’t happen. Perhaps it’s anxiety - maybe when all the little worries and stresses swirling around in her head build up to breaking point.

The best way I have of describing it is that it’s like a wave. She might be paddling along, dipping her toes into difficult emotions, when suddenly, the tide rushes in and a wave of feelings crashes over her.

There is nothing we can do. My husband or I just hold her, brush her hair out of her eyes, and try and say calm and comforting things (probably to make us feel better, because she’s not really aware of them). The best we can offer is to curl up on the sofa with her for 20 minutes, if it looks like being a big wave.

Because all we can really do is wait. Then, as suddenly as it started, the tide goes out again. The wave retreats, with a whoosh. And with a wipe of the eyes, a sniff, and a deep breath, she’s back. And asking me why I don’t like Justin Bieber when he’s so good at singing. Telling me her Daddy is the worst dancer in the world. And asking if it’s really true that a man puts his penis into a ‘lady’s bits’ to make a baby. God, where’s a wave when you really need one?

Video is The Pixies - Wave Of Mutilation

Video is The Pretenders - Stop Your Sobbing

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