This is all about Tilly and her family. Tilly has Spinal Muscular Atrophy, a genetic condition which means all her muscles are very weak
Saturday, 24 October 2009
African Dreams
Thursday night was very busy with Candice and Tilly both needing attention. Candice feeling really rough with a cold and Tilly just generally unsettled. I was surprised that Candice felt well enough to go to school. Almost half of the school are off with coughs and colds and Candice seemed determined to keep going until the half-term holiday. Tilly's Teaching Assistant is also feeling unwell and her and Candice both resemble marathon runners on their twenty-sixth mile.
I stayed at school to arrange for Tilly to start having her ballet lesson with Candice at school after the half term (now that the spinal surgery has been cancelled). We'd like to have it on a Wednesday morning 0830 - 0900. All at school very accommodating, just need Miss Jeanette to provide her CRB details and Tilly can begin practising her ballet again.
The school have also arranged for the mini-bus that should be taking Tilly to swimming to come and check that Tilly's chair will actually fit in it. They really have been brilliant and are going out of their way to include Tilly in every respect.
Back at the B&B I immersed myself in the "U" bends and put my mind to the fifteen minute talk that I have been asked to give for the launch of the Children's Trust Parent Strategy. It is enormously curative to be given the chance to tell the 'Powers that Be' what it is really like to be a parent of a child with special needs; what it really feels like trying to make sense of it all; and how amazingly wonderful it can all be, if the right help is put in place. My only anxiety ever about giving 'my story' is that I am acutely aware that I am very lucky to have a 'happy ending' and that there are hundreds of families who never actually get the right help in place.
Lunch 4 2 Club was exceptional. Tricolore Salad on an Olive Oil toasted Crostini. I am sure that both Michel and Greg would have been proud and, of course, Rolf made sure that they put in an appearance!
Chess after school for the girls on a Friday means that I get an hour in the library to catch up on life through my laptop. Perfect peace, and I can uaually get loads done.
After Chess we move on to Tilly's private swimming lesson with Louise, a specially qualified Swimming Instructor. Louise took Candice through to gold and is committed to achieving the maximum level of swimming possible for Tilly. Tilly swims on her back with the aid of an inflatable neck collar. In spite of Tilly's recent illness, Louise encouraged Tilly to perform to the hightest standard. It was so wonderful to watch Tilly swim in a big cirlce, independently. Tilly's smile, as she battled the bumpy water, dodging the other swimmers, was dazzling.
Ellen, Tilly's Support Worker, arrived to help us get Tilly's hair washed in the showers, and ready for home in her pyjamas all ready for bed. It's great to kill two birds with one stone!
Daddy was waiting with the tea of fish and 'African' potatoes (fried potatoes that Uncle Frank had made for us whilst we were visiitng him in Nairobi). An exceptional adventure that we will certainly never forget, and could certainly never have experienced without the generosity and support of Rolf's brother and his wife. We visited the Sheldrick Elephant Orphanage as featured on TV's The Elephant Diaries, and the girls adoped babies that still keep in touch via an electronic newsletter. We stroked a wild cheetah in another orphanage and then went down to Sarvo National Park under the mighty Mount Kilamanjaro to see animals in the wild. Quite life-changing, if not a little scary at times as the threat of violence had reached quite a high by that time and it was necessary to live behind electric fences with armed guards. I can hardly believe that we were really there, and it is great to be safely home again and looking back at our escapades through photographs. Rolf's brother and his wife now live in Chichester, so we are hoping to visit them there too. We anticipate a much more serene experience, but who can say what dreams will be made of?
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