Saturday, 12 December 2009

A Challenging Week

Tilly continues to make good progress swimming without aids in the warm calm waters of Horton Lodge Special School. A special treat this week as Daddy came along and saw his little mermaid swimming. Tilly is so thrilled.

Sad news reached us on Wednesday as we heard that Tilly’s “Snowy Owl” from Brownies had unexpectedly died. Snowy Owl had always tucked Tilly under her protective wing and ensured that all of Tilly’s needs were met. It was Snowy Owl who carried us through Brownie Camp with her indefatigable smile and good humour - an ‘unsung hero extraordinaire’. Janet gave of herself completely and will be one of those special people who we just won’t ever accept has actually gone, as she has left such an indelible mark on us.

Friday saw us embark upon a two hour journey in freezing fog to Oswestry for a review with Tilly’s neuromuscular specialist. We were blessed with Tilly’s new physio for company and support. For some reason that was not explained to us, Tilly was seen by a specialist in spinal cord injury and not her neuromuscular specialist. The Orthotics department were unable to see Tilly at all as a telephone message advising them of Tilly's arrival had not reached them; and the physiotherapist was busy with a large family so gave his telephone number in case we wanted some advice. All was not lost, however, as we had a positive experience with a specialist in standing frames and have been offered a further appointment once Tilly has had her rods lengthened and has actually got some foot splints.

As we battled home in the dark, foggy traffic, racing to meet Candice from Chess Club, I considered how I’d taken Tilly out of school for the entire day, missing her Christmas lunch, with such high hopes in the services at Oswestry. I couldn’t help feeling that Tilly had been ‘short-changed’ on this occasion.

Rolf was waiting at home with open arms, a joke on every tooth, and a sweet vermouth on ice with a slice of lime. We settled down to 'tea like a proper family for once' and had fish and African potatoes under the lights of the Christmas tree.

We have such a lot to be very thankful for.

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