Wednesday, 20 January 2010

I Never Ceased to be Amazed

Tilly was joined by BBC Radio Stoke's Reporter, Becky Wood, Candice and her friend for a Saturday shopping spree. My heart dances to see Tilly and the girls checking out the rails discussing and selecting the latest fashions, just like all the other young ladies around. The benefits of an accessible shopping mall are huge, but shops over-filled with cramped carousels are a nightmare for a little girl driving a twenty-stone powered wheelchair. However, most of the assistants seem to recognise Tilly and do go out of their way to clear a pathway or pass her things. Tilly said that she felt like 'Hannah Montana' as Becky recorded a few items for broadcast, and it was great having Becky with us for Tilly to have some shopping time 'without Mum!' It was a lovely 'girly' day and Tilly was successful in buying a special outfit ready for her trip to Telford Ice Rink for her forthcoming birthday.

Now that the snow has gone it was good to get Tilly back to early morning piano lessons and Church on Sunday. Tilly hasn't been to Church since mid-December so she was hugged and kissed and welcomed by all the 'Aunties, Uncles, Grandmas and Grandads' who had obviously missed her so much. They are all so wonderful.

Great news that 'Nana is on the move'! Just like Narnia's Aslan, my Mum sends frissons of anticipation and great joy when we learn that she is on her way to see us. Nana is a very special lady who is adored by the girls, and is my rock and inspiration whose energy and enthusiasm never ceases to amaze me.

Sunday afternoon was taken up with a Trustees' Meeting for Rudyard Sailability where we made preparations for the Mediation process on February 15th where it is very much hoped that a Lease agreement can be settled and then Charity can start work on the proposed new building. However, there were dark clouds gathering over the meeting and the 'unofficial' news trickling in was not good.

Monday and Tuesday was much more optimistic as I was able to contribute to the Caudwell Children's Aiming High Project and delivered my "Talk" to some prospective volunteers hoping to work with families with children with disabilities. Using a variety of visual aids I 'debilitate' a carer and then show how these blindfolds, burdens and bindings can be removed with the help of a willing volunteer, and that the outcomes can be absolutely amazing. I hope it helped.

Tilly was sensational at her Horton Lodge swimming session and completed twelve lengths without her buoyancy aid, even though she thought that she might need to have it again after the Christmas break. She was tickled pink with her achievement and I am so very proud and pleased for her too, as I honestly didn't think that this would ever be possible. Amazing!

We were thrilled with a visit from Linda, Tilly's Home-Start Volunteer, who came to us eight years ago at the point of Tilly's diagnosis, and rescued us from desolate darkness and helped us find a way forward to a bright and sparkling future. Linda's ears must have still been warm as I'd mentioned her many times in my "Talk" and she will forever hold a place in our hearts as her contribution to our lives is immeasurable. It was great to bring Linda up to speed with all our activites and she still inspires and encourages us by her very presence.

Special Matters, the local support group for families with children with disabilities, had a really informative coffee morning. The Rowan Organisation told us about Direct Payments and amazingly, there were parents with older children who'd never heard of them and could really do with them. The trick seems to be to find a Social Worker to recommend them, and many families have had difficulty in this first essential step. Special Matters will look into this and see what can be done. We can't imagine being able to manage without Tilly's support from her Carers from Crossroads.

The local Library Service came along and offered their help to Special Matters as they are aware that they have not tailor-made any courses for families with special needs. Families reported that they would never dream of taking their children into a library because of their child's challenging behaviour, or even borrowing books for fear of them being destroyed. All fears were allayed and Special Matters and The Library Service will now look into ways of bringing the library out to us or making their courses more accessible. Great News!

Special Matters are also going to team with the Community and Learning Partnership to offer courses to families such as ours, ranging from confidence-building to computing. All sounds great to me.

Today's local Press confirms that Staffordshire Moorlands District Council, Head of Development Control, has recommended, in confidential papers, that Rudyard Sailability's current store be forced open from February 16th; the highly sensitive, electronic fleet put out onto the lakeside; the building be demolished and any materials sold off with the proceeds going to the Council. I never ceased to be amazed by the actions of some members of SMDC, but this aggressive recommendation leaves me stunned. This act will serve no purpose other than to severely disrupt and damage the Charity's operation and will impose an intolerable strain upon the Club's volunteers, many of whom live with disability themselves.

British Waterways (Landowners), Rudyard Lake Limited (Licence Holders) and Rudyard Sailability (Tenants) know that the current store will need to be demolished soon, but have together requested for a stay of execution whilst we go through the Mediation process. I can only pray that this Thursday, 21st January, the Councillors on the Planning Committee willl vote against the recommendation and vote for an extension to the Enforcement Order whilst the lease is arranged or otherwise.

I wonder if will I will cease to be amazed at the outcome? Let's hope I will be pleasantly surprised.

1 comment:

bonnie harris said...

your mum's ace. She seems like such a lot of fun. It must be hard. I always had all three of the grandparents still alive when I was born, on my doorstep. It must be really horrible some times, that you can't just randomly nip to grandma's. Even though I didn't always take my parents up on the offer of going with them, when she WAS there to visit! It's something i miss!
BEST of luck with everything at sailability. I'm afraid I don't possess a Christian faith of the strength of yours. so it would be hypocritical of me to pray for you. If this were not the case, I would. I don't know what else to do. I totally understand that you don't want to ANYTHING other than stay where you are, as anything else would be conceding defeat; but is the offer of a home from Trentham, that I read about in the sentinel, still there? Hope so.
Take care.