Thursday, 22 October 2009


Wednesday morning, after dropping off the girls and Tilly's Teaching Assistant at school I went to the new development called The Meadows, a successful amalgamation of mainstream and special education, on the site of the Leek High School and Springfield Special School. Special Matters, a support group for families with children with special needs, were having a coffee morning in the 'Flat'. It is done out with a kitchen, bathroom and comfortable seating and just perfect for our needs, and can be used in many different ways by the school and community.

I had the great pleasure of meeting a remarkable young Mum who has just recently recieved a serious diagnosis for her daughter and was in the throes of trying to make sense of the new 'parallel universe' that she had found herself in. I instantly recognised the shock, pain, anger, guilt, disbelief, and frustration. Her tears flowed as she tried to explain how difficult family life has been, how confused she is about which school her daughter should attend; how incomprehensible the paperwork is; how she can't understand the progression of her daughter's condition; how she's afraid for what the future may hold; etc, etc It was choking, but so familiar. I don't think I've ever met a parent who did not share these same feelings. I only hope that I was able to offer the comfort advice and reassurance that was needed and was so pleased to see the Special Matters Parent Support Worker and the Parent Partnership Parent Support Worker already 'on the case'. It made me realise the vital role that Special Matters and other such support groups play. This was one cup of coffee that really made a difference.

Home in time for the Lunch 4 2 Club which was roasted winter vegetable soup! It was delicious - total 'spoilation'!

Rolf went out shopping and to collect the girls and I caught up on an unexpected "U" Bend requirement as one of the guests had finished his work and decided to go home a day early. Thought a lot about the Mum I'd met in the morning and revisited some of my early memories. I remember trying to sit Tilly, aged two, in a photo kiosk for her 'disabled parking badge'. The fact that Tilly was entitled to one seized me with grief as I'd only thought of the badge as being for the elderly, and Tilly was so tiny. Tilly was also very 'floppy', and the small circular seat inside the kiosk was very slippery so I had to stretch out my knee for her to sit on, support her body and her head, and stay outside of the curtain so that the photo could be taken. I then realised, from this contorted, twisted pose, muscles beginning to shake with strain, that I had to put the money in the slot! People were starting to stare at my wierd position as I was now trying to dig the coins out of my crumpled trouser pocket, and keep Tilly balanced and calm. Hot tears were welling up, when little four year old Candice came to my rescue! She could post in the coins and duck down when the camera flashed! Not only was Candice there to help me, she was also there to reassure Tilly and make her laugh! Nothing's changed!

Julie from the Pailliative Care Team arrived at 1600 to help get Tilly ready for Brownies. We put ourselves into 'overdrive' and Tilly was ready for tea at 1700 with Candice and her schoolfriend. Mercifully, Rolf did not have an evening meal this evening so he was free to do all the necessary ferrying that meant that Tilly got to Brownies, I got to my Governors' meeting, the girls got to Guides and eventually Rolf got us all home again!

Once the girls were safely tucked up, Rolf served Moules Marineres! "Spolified"!

Thursday morning, Tilly has swimming with the school and is scheduled to be picked up by taxi at 0845. The school has gone out of its way to ensure that Tilly is fully included and I am not needed to be part of the equation. However, the taxi did not arrive and fortunately I was able to whizz Tilly and her teachers up to teh swimming baths on time. Tilly's physiotherapist was there to ensure that Tilly's helpers could safetly transfer Tilly into the pool, and the county coach with a special interest in inclusion also happened to be present. Tilly's smile was dazzling as she criss-crossed the pool, arms and legs moving 'effortlessly' in the water. A joy to see, and I'm so grateful to everyone who worked so hard to make sure that Tilly would be included with her class.

I whizzed home, surprised to see that the postman had been. A letter from the hospital informed us that, due to unforseen circumstances, Tilly's spinal operation next week has been cancelled! I know that I should be disappointed as Tilly does need to have the procedure, and it will come around again, but I feel so elated. I feel that Tilly has been through enough just recently and I really want her to be able to enjoy all that the half-term holiday has to offer.

Lunch 4 2 Club was exquisite - crayfish tail and mango disc stack, piled high, with potato salad and warm bread roll. Should have had a photograph - almost too pretty to eat!

I spent the rest of the day doing "U" bends, with a smile from ear to ear, wondering what adventures we can have now that Tilly has a reprieve!

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