Wednesday, 4 November 2009


Tuesday night was very 'busy', with Tilly really unsettled and needing lots of visits during the night. I have to try really hard not to become irritated and impatient with Tilly and sometimes, like last night, I fail and am rather 'short' with her. I don't know why I am programmed sometimes to feel like this, because it only serves to upset us both. I so want Tilly to have the benefit of a good night's sleep, and be 'trained' to do so by not indulging her every whim, but, equally I break my heart at the thought of her lying flat on her back, hooked up to machines, hardly able to move a muscle and feeling like she wants to bend her leg; itch her back or throw off a blanket. It's the least I can do to pop down and help her, and try and do it every time with a smile.

I guess I was extra anxious last night because I knew we had to be up extra early today so that Tilly could have a ballet lesson with Miss Jeanette and Candice before school. We raced through the morning routine, cut a few corners, and found ourselves in school for 0800. We collected up the mobile hoist,(which is a bit like a little crane), strapped Tilly into her standing sling, (which is a bit like a pair of neoprene dungarees with straps going up to the crane's cross bar) and crossed our fingers that Tilly could tolerate the sling (which becomes very painful after a while) for the lesson, and that the lesson would finish before the school filed into the hall for Assembly.

Most days Tilly will make a comment that will make me choke, and, of course, today was no exception. As I went to remove her shoes to put on her dancing pumps she said, "No, not yet, let me hear my shoes click-clack on the floor - I've never heard that!" Just like any other little girl, Tilly enjoys not only the look of shoes, but how they sound. I took quite a while digging in her pink ballet bag to find her pumps to the sound of fairy-like click-clacks in the hall.

Our beautiful Miss Jeanette, who has been Tilly's teacher since Tilly was two and a half, arrived and exquisitely led the girls through their steps. It was obviously a 'chokey' sort of a morning as I watched Candice tenderly lifting Tilly's little arms to the correct positions and deftly moving the hoist to Tilly's dainty little steps. Candice really is quite extraordinary. Who would have thought that we'd have two ballerinas in the house? Quite magical really?

Tilly's Teaching Assistant arrived right on cue to help get Tilly out of her 'dancing gear' and back into school mode, just before the advancing Assembly crowds. Mission accomplished! It's great that the school are so supportive and happy to let this activity happen as there isn't another opportunity after school.

My next task was to get home to be picked up by my Special Matters' team so that I could do my 1000 "Talk" for the launch of the Staffordshire Children's Trust new Parenting Strategy. My lift did not arrive until 0930. Nothing like being late for a Presentation to get the stress levels rising. Knowing that I was the first Parent to speak I was rolled out of a moving car at the main entrance, snatched up my obligatory name badge and conference pack at Reception, was informed that the meeting had just started and to turn left at the top of the stairs. Having taken the stairs four at a time, I raced into all the large gatherings of startled BT Employees who were installed in the rooms on the left. I spun to the right and noticed a room number on my name badge so raced off in the opposite direction to find it empty. My heart was racing. I hate being late, and I'm getting really good at it! I practically slid down the banister back to Reception to find another small group of latecomers who also had been barging in to other people's meetings. It was good to find that I was not alone, and we all simultaneously harrumphed about the lack of good signposting. We were ceremoniously escorted to the correct destination to the understandable disapproval of all present. I sat trying to catch my breath, my mouth completely dry, my lips stuck to my teeth and rather in need of a trip to the loo, not least to sort out my hair which now looked like it was on backwards!

It was my turn to speak and I felt dishevelled, exhausted, confused, frustrated, anxious and, all of a sudden, not quite sure what to say. The perfect frame of mind to convey to the assembled "Decision Makers" how most parents feel when faced with their child's serious diagnosis. My brief was "Why are Parents Important?". My message was that services need to support vulnerable parents because their children are blissfully unaware of the adult world of limitations and barriers being faced by their carers, Most children believe that parents are actually on this planet to provide them with a happy, safe and magical childhood. Most parents believe this too. The trick would be for all services to support families, to work some magic, and give all parents the power to achieve this goal.

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