Christmas was great. After R’s sojourn in the hospital in Germany, we were doubtful that our planned trip to Switzerland with G’s family was such a good idea after all. How nice to be proved entirely wrong.
G’s family have something of a tradition of spending Christmas skiing in Switzerland. G went for the whole school holiday when he was a child and we have joined them on alternate years ever since F started school. (I know – we are totally spoiled.) G is scrupulous about including R in everything that we do but even he thought that skiing might be one activity that R would never enjoy. But not only can she take part, she’s good at it and she absolutely loves it. It makes her feel good about herself. She loves eating chips on top of the mountain at lunch, tapping the menu furiously for service. And it makes her so tired that we had our first run of unbroken nights for weeks.
Just over a year after R’s diagnosis, we attended a academic conference on Rett Syndrome where we met other parents of girls with Rett. One Mum at the conference showed us a video clip on her phone of her daughter skiing. We were amazed. But perhaps we shouldn’t have been. Important when skiing is keeping your centre of gravity forward. As a novice skier, I can confirm that this is not the most natural thing to do when you are hurtling down a slope. This is, however, exactly what results from leaning forward and clasping your hands as R does much of the time. Moreover, R’s problems are primarily to do with planned and not spontaneous movement. So curiously, if R is falling she is able to grab hold with her hands or put them down to break her fall. From observing R, it seems to me that the very fact that she has disordered movement has served to train her in maintaining her balance. She is constantly having to make adjustments just to stay upright when walking. In that sense, skiing is really no different for her even if it is for me. Just take a look at this. Yes. I’m very proud. And it was G’s fault she fell over!