Tuesday, 23 March 2010

With a lot of help from my friends (and family)!

Amazing news on the Pepsi vote - funding for a cure for SMA for one year has reached first position! Many, many thanks for all voters so far and please, please keep voting every day so that this amazing opportunity may be realised. Who knows what might happen with just the click of a mouse?

A very interesting week of role-reversal with Rolf taking on the school run and supporting Tilly at all her activities - swimming, ballet, contemporary dance, Brownies, Chess, etc. Clonking around in my pink plaster cast I've had the pleasure of taking care of the guests and the room-cleaning at the B&B! Can't wait to be back in the driving seat - but so pleased that Rolf has stepped to effortlessly into the breach and seems to be enjoying the challenge and the chance to socialise outside the B&B. They do say a change is as good as a rest - but we'll have to ask Rolf about that one.

I was scooped up on Wednesday and taken to the Special Matters Support Group where we were interested to hear all about the Family Fund Trust and how exactly they can offer help to families such as ours - holidays, white goods, specialist equipment, driving lessons and much more - definitely worth checking out - www.familyfund.org.uk.

I was also fascinated to meet another carer who fosters a child with disability and was amazed at the approach by the Local Authority who did not seem to be as helpful and supportive as one might have imagined. I would have thought that any family who undertake this admirable role should receive all the help required - without having to ask and without putting themselves at financial risk. As an added complication it seems that families are reluctant to complain for fear that their child will be removed from them. It's certainly a funny old world.

With expert teamwork and planning we somehow managed to pull off contemporary dance, Brownies, Guides and a Governors' Meeting on Wednesday evening with Pauline's (Crossroads Caring Employee) playing a key role.

I've been very fortunate and received an hours help from Pauline in the morning to help get Tilly off to school on time which has certainly been terrific.

I was scooped up on Thusday morning to do my "Talk" at Home-Start for their new intake of Volunteers. I just love talking to this particular group as it evokes such magical memories of Linda who came to our rescue all those years ago. Linda's two hours a week simply transformed our lives and we shall never forget her.

Had my beautiful friend, Andrea come around on Thursday evening and wash my hair which made me feel so much better. This feeling was further enhanced by yet another wonderful lady, Eileen, popping around with a sandal that goes over a cast which means I can get about easily outside, even in the rain! I've even been loaned a waterproof protector so I can now hop into the shower!

Flowers and good wishes have been arriving from many quarters - all expressing great concern and many marvelling at me being such a silly billy!

Friday was blessed with fabulous sunshine ,and so complete with my cast protector, I was able to join Rolf in a bit of tidying up in the garden which felt very theraputic and was much needed.

Pauline arrived early on Saturday morning to help get Tilly ready for her trip to Rotherham with Daddie for her County Chess Tournament. Rolf had to sit in with Tilly during her matches to attend to any medical crisis, but other than that, Tilly played independently using her amazing arm supports. The standard was very high and Tilly and her team played very well, although they did not bring home any silverware on this occasion.

Candice was an absolute Star and helped with all the jobs at the B&B - I really couldn't have managed without her. We also had fun making great fresh fruit smoothies and sorting out Candice's wardrobe ready for her forthcoming camps and school trip to France. I so adore having magical time with Candice.

It was great to see our travellers home safe as it was a wild and blustery day to make such a journey. We all settled down to one of Daddie's pastas 'like a proper family for once' and enjoyed catching up on Michael Winner's dining programme. I would just love Michael Winner to come and try one of Rolf's breakfast - I'm sure he'd be very impressed judging by the one we saw him eating.

Sunday was amazing. After a very busy breakfast service, Rolf put on the pork and drove us all to Britannia Stadium for Caudwell Children's Mad Hatter's Tea Party to celebrate the launch of its new Family Support Service, funded by Stoke-on-Trent City Council. We were also privileged to see the start of the awe-inspiring Star Biker Egg Run as we entered the party - thousands of roaring motorbikes heading off in bright sunshine to gather eggs for disadvantaged children.

The party was terrific with local families joining in with a huge range of fun activities. Rolf and the girls were particularly impressed with the circus skills and I just loved catching up with all the other Mums and carers who share our special world. I never cease to be amazed at the Caudwell's team energy, drive and enthusiasm as they give all of themselves to these events in their own time.

Having been at the stadium Tilly, along with a couple of other electric wheelchair users, are now determined to go along to a football match! I'll see what I can do! Tilly was also invited to another Dance Class taking place at the Regent theatre - she just can't wait as she has dance running through her core.

Sunday continued with a jaw-dropping performance of Snow White by the Russian All-Stars. Their performance left the audience gasping and weeping with their strength, skill and beauty. This special family treat was organised for us and other families by the Caudwell Children - is there no end to their kindness and insight? A family day out really is a gift beyond compare and much treasured by the Griffiths' Clan.

What then could have topped this magical day off better than one of Daddies' roast dinners and a family snuggle up on the couch to watch Dancing on Ice.

Life really does get better and better!

And to prove it my lovely Mum arrived on Monday afternoon to spend a week with us to help out. What a Darling! My Mum is my rock and my shining light of inspiration and the girls and Rolf also adore her.

Poor Tilly, however, has had a very sore knee since a knocking it against an open drawer on Friday. It is really uncomfortable to dress and Tilly is not able to manage her vital standing therapy. We took her up for an X-ray this morning at the local hospital and they were so warm, welcoming and efficient. Tilly was back in school with a support bandage by 0930, with the X-Ray being sent off for further review. No sign of a fracture! Let's just pray it will soon ease off.

I have heard that Louis Parsons has made a start on his soulscape representing Tilly. Every time I think about this awe-inspiring artwork my tummy tingles.


bonnie said...

My mum and dad did the star bikers run.
Hope Tilly is ok, and it's just badly bruised or something!

bonnie said...

caudwell children have come a long way indeed since telling my parents that my brother was too young to attend the ball (the CHILDREN'S ball) so he never got to see me do my speech, and neither did my mum as, at fourteen, while he was quite old enough to be 'out in the dark' at the ball, was too young to stay in for that long on his own, so she had to stay home with him too. Hey ho... the family support service sounds cool.
A friend of mine is currently in training as a Homestart volunteer. She says SHE too, honestly doesn't know what she would have done without them a few years ago, and has been waiting to be in a position to 'give something back' ever since. So what's the difference? Do Surestart not do one to one assistance with individual families, but instead, offer communal support groups. The two charities are, to me, confusingly similar.
Hey ho... take care... I'm going to Oswestry tomorrow to takje delivery of my brand new walking frame.... then on Friday I'm going to Sheffield for the weekend!!