Thursday, 4 February 2010

We pulled it off!

Been out of touch from Blogsville as I am determined to get "Tilly Smiles" ready for the Designer before my lovely Mum returns to Bridgend on Saturday. With Mum's help I have been digging out the 'trinkets' that will be used to help tell Tilly's story - certificates, newspaper clippings, badges, etc - that have been collected and stored over the last ten years. Unfortunately, my filing system is as chaotic as my life so I've been mining for treasures under Tilly's bed; in hidden shoe boxes; in an old blanket box in Candice's bedroom and in discarded handbags hanging behind doors! It has been challenging hunt, but very heartwarming and rewarding when we hit gold.

The other big project we've been absorbed in has been to trawl through the hundreds of photographs on the lap-top and select pictures that will enhance the verses of the book. Another mammoth task, especially as my computer went 'poooof' and Rolf has had to miraculously rescue all the data. Again, this job is incredibly rewarding to revisit all the photographs, but very time-consuming - there is certainly a lot more to "Tilly Smiles" than I at first thought. However, as we get ever closer to completion I love the book more and more. The national charity that looks after those living with spinal muscular atrophy, The Jennifer Trust, has secured funding to help us realise this work and without their support I wouldn't have ever dared come this far.

In and amongst the digging around the Griffiths Girls have really enjoyed their birthday bashes. Candice had a splashing time at Brough Park swimming with eight of her mates, followed by a mountain of chips and birthday cake in the cafe afterwards. Nana and I kept a respectable distance from these lovely young ladies who all seemed very grown up and independent now that they are twelve.

Tilly spent the afternoon at home with her best friend, Bex, and Daddie. I love seeing Tilly and her friend playing cards, or board games, and just getting on with the business of being ten. Having a special friend for Tilly means the world to me and Bex is just so special and has been right beside Tilly since pre-school. Rolf prepared them their own meal which they enjoyed whilst they watched, "Take Me Out". Tilly's confident use of her arm support makes these events possible as she no longer needs to be fed. What a blessing - Tilly's independence really does mean so much to us all. Who could have thought that a jointed piece of metal tubing and an electric switch could have transformed a little girl's life? All hail to the brilliance of NeaterEater!

In spite of the light dusting of snow on Sunday morning we set off in convoy to Tilly's birthday bash at Telford Ice Rink. Our dear little friend Molly was to share Tilly's birthday celebrations with her friends as she is soon to be eleven. We stopped at the MacDonalds beforehand where we met up with BBC Radio Stoke's Beccy Wood, and were treated to Andrea's home-made amazing chocolate cake, firework candles and a rendition of "Happy Birthday".

The ice rink was heaving, but the welcome and special care we received made us feel as if we were the only customers of the day. The Manager ensured that we had safe and easy access and found a warm changing room for Tilly to get into her skating harness (standing sling). Tilly wore her sparkly pink skating dress, trendy cut-off dance sweatshirt and tan ice-boot covers over her white skates, and complete with dazzling smile, looked a million dollars. The mobile hoist that supports Tilly while she skates seemed to evaporate and disappear.

Rolf was the first to take Tilly for a spin and I found myself welling up with emotion as I watched them glide over the ice with Tilly's little arms keeping beat with the music. Poetry.

Jason, the Manager had also stationed a 'Minder' to skate alongside Tilly's frame to ensure the safety of her and other skaters. The overall care was exemplary and made a potentially extremely challenging afternoon, very easy, so our heartfelt thanks go to all at Telford Ice Rink. We'll be back!

We returned home nursing our various bumps and bruises to the delicious aromas of Rolf's Sunday roast that he'd put on before we left. Rolf fixed me a sweet vermouth on ice with a slice of lime and I really did think that I must have died and gone to heaven. The relief of managing to suitably 'birthday' our two little girls was immense. "Can I stop shelling out yet?" Rolf asked. "Start saving for the next bash!" is my reply.

1 comment:

bonnie harris said...

wow.Sounds amazing.And the birthday girl looks gorge.Tilly really is a little fashion queen isn't she?Speaking of which; I don't know what time she likes to retire to bed, or whether she can lie in bed in such a way that she can watch telly, but if possible, I think she, and you all for that matter, should watch this series of Gok Wan's how to look good naked.I'm sure you've heard of it, from the trailers and from the fact that Anni never stops talking about it!; and rightly so! It's 'with a difference' this time.It's all about ladies with a disabiity, and how to make them look and feel thier utmost best despite obvious outward differences, which, in some cases, had really been getting them down for years!It's magical, then, and sometimes quite tear jerking, to watch him figure out styles and cuts that they CAN 'pull off' and convince them that they look great, and to then watch them start to believe him, and FEEL as great as they look; and to finally become 'bodyconfident' enough to pose nude for a photo shoot, and ultimately, on a cat walk. Alongside this same format as the show he's always done with able bodied ladies, he's also getting behind a campaign to start seeing disabled models in mainstream advertising campaigns.He's doing this with the Help of a Photography agency manager, Nicki Fox, and your friend,Tash Wood.She's lovely too!
I can't wait though.A girl in a wheelchair doing the other 50 per cent of the Marks and Sparks adverts alongside Myleene Klass! It needs to happen, and with someone like him who can't seem to put a foot wrong in channel 4's eyes, it's going to, rather soon.
Well, the best of luck with the book. Is it actually autobiographical but embellished with verse? Or is it going to be factual regarding the ins and outs of SMA? Or both? I'm intrigued!! Well, Lots of Love to you all.
Take care. Love Bonnie