Happy Feet?

Scooped Tilly up from school early and made our way to take on the challenge of parking at Orthotics and arriving on time for the appointment. Having Nana with us made the job all the easier as I was able to drop them off and 'prowl'.

We were warmly greeted by all of Tilly's friendly Orthotists and Tilly was fitted for her new foot splints. These are plastic, ski-boot style, knee-high, velcro- fastened items of torture that Tilly needs to wear 24 hours a day to slow down the deformities of her feet. They are essential, but the curse of Tilly's life as she adores shoes and is becoming ever more conscious of her image. Tilly had requested a black pair this time so that they would blend in a bit with her school uniform, but to her horror they are actually bright pink with butterflies! Quick as a flash Tilly suggested that she tries to cover them with knee high boots, or even the new ice-boot covers that Candice had given her for her birthday. The Orthotist is keen to hear how we get on as this could be an option for other splint users.

We did have a quick go at covering the splints with the ice-boot covers and it was 'sort of all right' to Tilly, but will need a proper try and some slight adapation to see if it is a goer. The main news is that Tilly left for school wearing splints under her trousers with school shoes over the top of them and she felt very good about herself. Tilly looked in the mirror and said, "I've got shoe shaped feet and they don't hurt at all!"

I've had a call from school saying that the splints had become intolerable at about 1100 and have been removed. Oh dear! I just hope that it is just because they are new!

It really is injury to insult to have splints cause pain.

Many Happy Returns

Tilly's tenth birthday was pure joy. A comment that she had made in the morning made me smile all day, "I keep forgetting I'm in a wheelchair!" All credit to Tilly and to the makers of such an amazing machine that it allows her to feel like twenty stone of metallic technology doesn't exist. Thank God there are Charities around like Caudwell Children who believe that children should be given such equipment.

Tilly skipped home after a great day at school all fired up ready to have her special birthday tea and open her presents. We were lucky to have help from Julie and Dawn from the Children's Commnity Team who whisked Tilly through her bath and got her looking gorgeous in her new spankled 'Hannah Montans-esque' outfit in record time.

Tilly chose happy chiken drumsticks and chips and ooohhed and aaahhed at all her presents and cards, delighted with each and every one of them. Thank Goodness - the January sales did us proud! Rolf found a flexible camera clamp to fix to Tilly's chair and is looking into a remote control device - just wondering if such an attachment might be good for a mobile phone?

We'll give it a whirl Shirl...

Unbelieveable

Huge sighs of relief all around as the news filtered in that the Staffordshire Moorlands District Planning Committee voted against the recommended demolition of Rudyard Sailability's boatstore and granted the Charity a six months' extension. This vital time will allow Rudyard Sailability to go through a mediation process with the licenced managers of the Lake on 15th February, and hopefully sort out the future of the Club, without having the added worry about whose garage or garden we can safely store expensive our electronic fleet and associated equipment.

More good news as I am now back in 'blogland' as Rolf has managed to sort me out with a working computer. Nothing quite prepares you for the shock of realising that you might lose all your work on your laptop, and nothing inspires you so much as to back up information regularly! I could see Tilly's book, precious photographs and all my Rudyard Sailability documents disappearing into hyperspace - what a nightmare. Just so lucky that Rolf was around to rescue material before the thing went kaput!

So excited was I that my lovely Mum was on the way that I waited for two hours at Hanley Bus station for her, only to discover that I was there a day too early. Rolf rang me with a Gordon Ramsay-style "Unbelievable!" Only the sad thing is that it is actually quite credible for me as I am very often in the wrong place at the wrong time!

Skidded back to Leek in time to collect the girls from Chess, whizz them home, have tea and then return for Tilly's first ever School disco. It was an anxious start as her very best friend was not with her and Tilly did not have a special friend to be with and explore. After a short time with her teaching assistant, Tilly built up the courage to go wheeling into the hall, and was soon 'strutting her stuff' with her classmates. I spent the time 'in her radius', picking up litter and mopping up water spills and managed not to behave like an overprotective Mummy - I hope! Tilly said she had a great time and is already wondering what she will wear to the next one. Another mission accomplished.

Some bad news from the local swimming pool threw all Candice's plans into disarray on Saturday morning as she had planned a swimming party at 2pm with seven of her friends, and we discovered at 1pm that they were closed due to technical reasons. Poor Candice, I felt so sad for her as she was all 'bikini'd up' and ready to go! Frantic calls to all her friends brought disappointment for Candice, but a plan to try again next week. Candice's beautiful smile was restored and she settled in for an afternoon with a couple of her mates. Phew!

Meanwhile, we needed to get into Hanley to pick up Nana who was definitely on her way this time, only to discover that we had a coach bolt buried in the front left tyre! I was sure this must make three things by now, but I should've known that counting isn't my forte as the news came that Hanley was the venue for a potentially violent demonstration by opposing forces starting at 3pm. Mum's bus was due in at 2.45! Fortunately for us a beautiful friend stepped into the breach and drove me into town and Mum was safely scooped up amidst armies of riot gear clad police officers! Never a dull moment!

Nana's arrival filled the house with joy, and Saturday night's pasta was extra-delicious seeing my Mum around the table.

Tilly, Nana and I attended to a very important work once Candice had gone to bed as we had to decorate the lounge with birthday banners and set out her gifts and cards around the fireplace. A last minute gallop around the sales had meant that there was a verirtable mountain of presents for Candice to open. The girls take their birthdays very seriously indeed which is lovely.

Candice celebrated her twelfth birthday in style with chocolate croissants for breakfast. It was then on to her piano lesson and then to Church, dressed in her 'jacket of many buttons' where everyone sang "Happy Birthday" to her and also to Tilly, whose birthday is just three days later. We raced home for more present- opening, oatcake lunch and then we dropped Nana and a neighbhour in the Tea Rooms and Candice and I mountaineered up the Roaches in the rain for a stimulating hike. It was awe-inspiring to be up so high, commanding brilliant views and taking on the elements. Candice said it was the icing on her birthday cake! The other wonderful thing about the route that we took was that we think that we would be able to manage Tilly in her all-terrain buggy next time if the weather is a little kinder. Can't wait!

Candice chose Daddie's brisket of beef with Yorkshire pudding followed by his speciality 'creme brulee'. Too, too delicious for words, but a perfect tribute to a wonderful little girl's birthday celebration.

The girls enjoyed their first Burns' Night Supper on Monday with Daddy 'piping' in the meat and vegetarian offerings and reading out "Ode to a Haggis". Rolf finds it almost impossible to let any culinary opportunitiy pass him by, and this one was all the more special because it was also our 13th Wedding Anniversay! "Who'd have thought it?" Rolf always says on our Anniversay that our wedding day feels just like it was yesterday, and whilst the listener is covering him with 'aahhhs', he says that he wishes it was tomorrow, because he'd cancel it! Just like Rolf, and I find that I still laugh at his jokes!

Preparations are still going on for Rudyard Sailability's Mediation meeting with Rudyard Lake Limited which is coming up on 15th February. When we get together I am continually amazed at the mountain of work that has gone on by volunteers to try and get a lease for an accessible building at the Lake. Surely all this intense work and commitment will pay off on the 15th - time will tell, and until then, my heart is in my mouth and my stomach in a knot. It means so much to the Charity.

Nana came to see Tilly swimming at Horton Lodge special school last night and Tilly delighted us by swimming fourteen lengths without a buoyancy aid. This is such an unbelievable achievement as just before Christmas Tilly was only able to float for about ten seconds without support. Tilly was awarded a certificate for her efforts which she will take in to school for the Class Achievement Board - "What a great birthday present!" Tilly said. Nana was overjoyed and can't wait to tell her sister, "Auntie Val", from Wales who follows every moment of the girls' progress. They really are so well-loved and supported and I am sure that this carries them on to greater things.

Tilly's squeals of joy rang around her bedroom at 0630 this morning as she sang, "It's my birthday and I am ten!" I carried her into the lounge which was bedecked in birthday banners so that she could check out her presents. Feeling suitably delighted with the veritable mountain of gifts Tilly got on with her morning routines, stopping every now and then to open a gift or card. I had enclosed in our birthday card a photograph of her and I a few hours after her birth, sitting together in the day room of the local hospital. Such a lot has happened in those ten years and, of course, my eyes misted over with emotion, only to be yanked back to reality with Tilly declaring, "Mummy, I am a decade - what a decade it has been - the best decade ever!"

Tilly is right, of course.

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.

Bingo!

The girls have had a good time at school this week, with the highlight being that they were the first to be sent home on Monday, and also the last! The weather changed again and the school decided to stay open once the girls were safely scooped up and settled in at home! "Bingo!" The girls were delighted.

I was so pleased to be able to be 'suited and booted' once more and make a return to Caudwell Children to cause a bit of chaos with my volunteering. It seems ages since I was there and it felt so good to be back in such a vibrant, dynamic yet caring setting. They are all amazing.

We were delighted to welcome two Medical Students from our GP Practice to talk turkey about what it is really like when a serious diagnosis is delivered; what life is like in those first few months. I am so often asked 'what can I do to help a family come to terms with their situation?' and I have no answer, because there is no one answer - every family is unique. Just hope these little visits help knowing that hindsight is, of course, a perfect science. We just try to get across the organisations and practises that have really helped and those that really didn't.

Lots of hot baths and early nights and 'tea like a proper family for once' as the icy conditions meant that most of the girls' after school activities were cancelled. "Bingo!" I know that I should be disappointed, but I loved not having to skid out into the snowy night and being cosy together.

Daddie, however, delivered Candice to her dancing class and she came home with a smile a mile wide and the news that she had received a 'Distinction' for her recent tap exam. I am so proud of Candice as she really had to work hard to achieve this award, and she was over the moon. I am so pleased Candice receives recognition in her own right and not just as "Tilly's sister."

Attended a meeting with Rudyard Sailability representatives this week to discuss how we should prepare for the forthcoming Mediation Process. It felt 'like old times' being once again around the table with such inspiring characters that have battled so hard for Rudyard Sailability over the past years. It feels very much like Mediation is the last big push to achieve a building that has been at the centre of such controversy.

I have spent a lot of time digging into the data that I have collected over the last year to make a chronological record of events over the past year relating to Rudayrd Sailability's building project. I thought it would be a relatively simple job, but I am amazed that I have been working on it for hours as there was hardly a week that went by without some effort maded by supporters of the Charity to bring about success. It would be good if the Planning Committee could see this record before making any decisions on the future of the boatstore.

However, the Planning Committee's meeting for this week was cancelled so our application for a stay of execution on the demolition of our current shed was postponed. Surely SMDC would not consider tearing down our current store when we are so close to a solution? The date for Mediation is the day before the proposed demoliton which is February 16th. We wait and hope as this decision will be taken behind closed doors.

Just back from the School's Chocolate bingo evening, and the good news is that we didn't win a single bar of chocci, but have come home with a bottle of Champagne! "Cheers!"

Week-ends are made of this!

We’ve enjoyed a scrumptious family week-end which kicked off with a terrific ‘Friday feeling’ as Chess and swimming was cancelled. As much as both activities are much enjoyed it was lovely to get the girls home early and close the curtains on the snowy night outside.

Special Matters, a local support group for families with children with disabilities, organised an afternoon at the New Vic Theatre’s The Lion, The Witch and The Wardrobe. We are devotees Narnia as Candice has read all seven of the Chronicles to us over the years during the morning exercise sessions for Tilly. The New Vic inspired and delighted us with their creative and inspirational adaptation of this tale. A great family afternoon out was enjoyed by all.

I believe that organising these supported family activities for families who have a child with disability is an absolute strength of Special Matters. Without such help and shared understanding of the situation, many families would never even consider a trip to the Theatre or similar. The cost implications, the logistics of getting there and how to cope on the day are all taken care of. An extra pair of hands and complete understanding of what is required can make all the difference, and block possible disapproving ‘tuts’ and ‘harrumphs’ of others.

It is very often the case in families such as ours that the siblings will be whisked off for a treat, leaving the parents and child at home, or the child with the disability is taken out with carers and other children with disabilities. Whilst it is special for the children to enjoy such time away from their family, it is also wonderful for the parents to have the opportunity to share in such special treats, to actually witness and share the smiles and shrieks of joy of all of their children.

These days are also a great opportunity for parents like us to get together, have a good old moan, and pass on top tips and good ideas. Also, it is very often the only time that the ‘lesser-spotted Daddy’ is sighted!

Many thanks to Special Matters and to other organisations who are so inspired to arrange such special days out.

Saturday night was spent enjoying Daddie’s House Speciality Pasta and then a welcome return to Dancing on Ice. It is all the more enjoyable now as we were lucky enough to go to the live final last year at Elstree Studio so we view the show through ‘behind the scenes’- tinted spectacles, spotting where we sat and where the cameras are, etc. We were blown away by Philip Schofield’s calm professionalism as he turned to chat with the girls between live presentations. The skaters were all amazing, but it was completely breath-taking and awe-inspiring to see Jayne Torvill and Christopher Dean dance their spine-tingling “Bolero”.


It was Torvill and Dean who personally announced to Tilly at London’s Queen’s Ice Rink, that she had won her Pride of Britain Award in 2008. We have all been lifelong fans of Torvill and Dean, so to see Tilly and Candice actually skating with them was absolutely mind-blowing and a moment that we shall never forget. This magical pair was absolutely charming and actually seemed enchanted to be dancing with Tilly!


Following early morning piano lessons for the girls, Candice and I slithered our way to Church, leaving Tilly safely at home with Daddie – Tilly’s chair is not good in the icy snow. At Church, we all snuggled up in the choir stalls which made for an intimate and cosy service. Candice did the first reading which was lovely and always so well received by the congregation. I almost managed not to cry!

The rest of Sunday was spent with everyone getting on with their own work. The girls are busy organising for their forthcoming birthday celebrations; Rolf was preparing his “Happy Chicken” for our family meal and I was busy arranging meetings for Rudyard Sailability’s approaching Mediation process. The clock is ticking.

Rolf’s Roast was delicious and should keep me going until next Wednesday! Tilly continues to become even more proficient with her arm support and is so much more independent when dining which is fantastic. I can’t imagine now ‘feeding’ Tilly full time. I can imagine, however, that one day wheelchairs will be created with these arm supports built in as a permanent feature that can be folded away like wings when not in use. Perhaps Tilly’s next chair will be thus?

The ‘double-bubble’ joy of this week-end was the little knock on the door at 10 pm which heralded the snowy welcome arrival of Eileen from the Children’s Airways Support Team (CAST) who had come to do a night-sit for us. I feel Eileen is like a dear friend as well as a professional carer, and we settled for a lovely catch up. We chatted about the amazing trip that Tilly had been on with CAST for a Santa’s sleepover at Alton Towers Hotel with other children who are also ventilated – it was an absolute success all round and we mused about where they might adventure next! My mind tingling with ideas I skipped off to bed for an uninterrupted night’s sleep, content in the knowledge that I was leaving Tilly in the capable and loving care of Eileen.

What a fab week-end!

Back to Skool!

After two very welcome false starts the girls made it back to school this week. Rolf has valiantly stepped into the driving seat and taken on the school run which is great. Rolf has had some practice as he drove us to Austria a couple of years ago, and had to negotiate multiple hair pin bends up very steep mountains covered in snow, so the trip to school, whilst needing care, does not phase him.

The house seems very quiet and I have returned to my “U” bend duties in the B&B cleaning the rooms. This is a good opportunity for me to reflect and dream and a good opportunity for Rolf to have a break and do something different, like the ironing! He has once again worked through a mile-high pile of laundry and enjoyed every minute as he caught up on two episodes of Dr Who! What a star, I shall definitely keep him on!

The house also looks very bare as, save half a jar of pickled onions, all trace of Christmas has been guzzled, gobbled, recycled or cleared away. The girls are re-assessing their bedrooms and planning a new look for the year ahead which will no doubt include posters of Miley Cyrus and High School Musical. The Disney princesses have been demoted from their position of honour, just as Barbie and the Bratz had to accept their fall from grace. It seems to be an inevitable cycle that we follow, but it only seems like yesterday we were raving over Noddy! I’ve really enjoyed all the different phases, greeting old characters from my childhood and meeting up with new ones that I thought would never catch on, but lived to brand many an item in the Griffiths’ household. I wonder who will be the next icon.

Rolf has threatened to put a blind at the kitchen window to increase my workload as I seem to be spending ages watching the poosies rolling and leaping in the snow. It seems that the snow has robbed them of their sedentary poise and elegance and transformed them back to kittens – mesmerizing and very therapeutic.

A nut and bolt fell off Tilly’s powerchair this morning which meant that the leg rest and changing table function did not work. Rolf worked like a racing mechanic in the pits to put it right before school, but we’ve had a call to say that the nut and bolt has come out again. Fortunately the school has installed a changing table in the ‘Disabled’ loo, and thankfully the school caretaker has done a temporary fix so that Tilly could stay at school. Hopefully, Rolf will be able to sort it out over the week-end. It’s not until a seemingly small thing like this happens that you realise how heavily the chair is relied upon. Also, if Rolf wasn’t able to fix it this morning then goodness knows when and if Tilly would have been able to attend school as my wheelchair maintenance skills are rather weak.

A huge sigh of relief went up chez Tilly as we were notified that she did not need to have the second shot of her swine flu jab. However, I was going to use the visit to the GP to arrange a few other services for Tilly so I emailed our ever wonderful GP and it has all been organised electronically. What a Superstar! Our GP Practice is brilliant, we are very lucky indeed.

I also emailed the Community Nurse about a requirement for Tilly, and almost before I’d pressed the ‘send’ button, Gill was at the door with all that we need. We seem to be on a roll; perhaps I should do the lottery!

Things are hotting up on the Rudyard Sailability front as we are approaching the time for the demolition of our current boat store. Charlotte Atkins (MP) has been working tirelessly behind the scenes with other Trustees to arrange for a ‘stay of execution’ from Staffordshire Moorlands District Council, and a Mediation meeting between Rudyard Lake Limited who manage the Lake and Rudyard Sailability. British Waterways, the owners of the Lake, have agreed to organise this important meeting and will be present to make any decisions regarding any lease agreements.

These next few weeks seem to me to be the climax of nearly five years of battling for a building to support those who live with disability who wish to participate in sailing at Rudyard Lake. Tensions are starting to mount and I am praying for a positive outcome for all concerned. In other words, I’m praying for a miracle.