Wednesday, 25 November 2009

Float like a Butterfly

My lovely Mum treated us to tickets to see Chitty Chitty Bang Bang. Our spirits rose with the magical car and we were all transported into the fantasy land created by Ian Fleming, also the author of so many 007 novels. We all thoroughly enjoyed this theatrical adventure and the girls were fascinated that Fleming wrote the story for his son who had asked his father if he loved James Bond more than he loved him, because he spent so much time talking about him. A ‘word to the wise’, I feel, as Tilly’s name features heavily in all of our conversations, and this will be bound to have an effect on Candice.

Rolf and I always strive to ensure that all of Candice’s needs are fully met, but I have noticed during this very busy week that she has not managed to fulfil all of her homework tasks and would probably benefit from a little more support. We all have such busy lives, so we must carve out a bit of extra time for Candice so that she does not feel overlooked or overwhelmed.

Rolf went to check on the ‘pool’ mini-bus that is used by local education providers to ensure that Tilly can access it for her trip out with the school on Friday. It all looked quite promising except that the ‘tying-down’ straps were missing and the battery was flat! Accessible transport seems to be a perennial problem, and a potential barrier for inclusion. Although I have every faith in the Junior High School, we’ll keep our fingers crossed for Friday! (Rolf and I will keep ourselves free – ‘just in case’)!

Swimming this week at Horton Lodge Special School was ‘poetry’. Tilly has been swimming twice a week with a supportive neck collar for nine years. At the end of some sessions Tilly has managed to float, without her collar, with a look of sheer terror on her panic-stricken face, squealing “Get me up!” This week something changed and Tilly relaxed and believed that the water would hold her. Tilly smiled and moved her little arms like beautiful butterfly wings. “I’m swimming!” she cried. We all cried too. I never believed that Tilly would ever be able to achieve this, and I don’t think Tilly did either.

Tilly’s early morning ballet lesson with Candice and Miss Jeanette was lovely, but seeing Tilly in her dancing harness highlighted the fact that her right leg is longer than her left and that her feet are nearly turning over. We have been increasingly worried about the state of Tilly’s feet and the fact that she is unable to tolerate wearing the splints that should help correct these deformities. Tilly will wear them until she is close to tears with the pain as they seem to be ‘chewing her feet’.

Tilly was seen at school by her Community Physiotherapist who has been with Tilly since Tilly was a baby. Every now and then, in our ‘parallel existence’, there comes along a person ‘who really gets it’; a person who will most certainly go the extra mile (with a grand piano on their back if need be), who can be sympathetic and enthusiastic, all at the same time. We have been extremely blessed to have had such a person as a Physiotherapist for Tilly. However, this meeting was to officially hand over Tilly’s care to the new Physiotherapist, as our ‘Superstar’ is retiring. We have every confidence in our new therapist, and although we shall miss Elaine, we believe our paths will continue to cross. It’s not surprising that as parents we can develop such deep admiration for professionals caring for our children, as quite literally, ‘they have our futures in their hands.’ We have been in very safe hands.

Tilly’s Physiotherapist assessment was a story of two halves. First the euphoria of Tilly’s swimming achievement; the marvelling at Tilly’s arm supports; Tilly’s successful inclusion into the school and then the second half. They recommended that Tilly be seen by an Orthopaedic Surgeon who may consider a procedure to correct Tilly’s leg-length discrepancy. They also made a few suggestions to improve Tilly’s posture in her wheelchair as Tilly is now leaning badly to her left hand side. The sting in the tail was that both Physiotherapists agreed that Tilly’s wretched splints that she has been enduring for months were actually causing more harm than good. They advised Tilly not to wear them again, and have arranged for Tilly to see a different foot specialist, with a view to possible surgery later down the line. With a mixture of heartbreak and outrage, I gathered up the plastic monstrosities and rammed them into a bag just wondering where I could possibly ‘shove them’!

I caught sight of Tilly dancing out of the room, thrilled that her cruel splints that she has tried to tolerate for twenty four hours a day, ever since she can remember, were to be condemned to oblivion. Tilly floated out of the assessment, dreaming of the shoes that she would now be able to wear now that she was free of the plastic boots that have imprisoned her feet for years. I smiled again. That’s my butterfly!

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