A Newsy Week

On Monday Tilly was not well enough to attend the Birmingham Day Unit to have an IV infusion of Zolidronate - a drug that will increase her bone density - and so instead started on anti-biotics and snuggled down for a few days at home. With Tilly, it seems better to withdraw her from all activities at the beginning of a cold, rather than let her soldier on and see the virus develop into something very nasty needing a hospital admission. Tilly has today returned to school for half a day, so hopefully she has managed to conquer the cold before it took hold. Fingers crossed!

Good news came in yesterday that Tilly has been invited to play Chess for the County U11 Team. Tilly is over the moon and has been busy practising ready for her first match later in the month. Candice, too, had exciting Chess news that she has been invited to play at the local adults' chess club, along with a couple of other promising players from school.

Tilly's fortune cookie from the Wong Kei in London said that this week would hold the news that she'd been waiting for and it certainly was. It came along in the form of an agreement between the British Waterways, Rudyard Lake Limited and Rudyard Sailability to work together to provide an accessible boat store at Rudyard Lake. Whilst we were in London, all parties were locked in exhausting mediation talks that, at times, appeared to be going nowhere. Then, amazingly, after days of excruciating discussions an agreement was signed. All sides are to be congratulated for sticking at it and not walking away from the table.

We can still hardly believe it, that after six years of battling, there does seem, at last, to be an end in sight and Rudyard Sailability will have a permanent, purpose-built home at the Lake. The finer details are still being negotiated, and we do need to submit another planning application to Staffordshire Moorlands District Council. I can barely breathe in case it all disintegrates again, and I guess I'll only really believe it when I see the building going up, or better still, at the Grand Opening! I guess, nothing worth having comes easy, but to get this boat store has really taken an inestimable amount of effort by so many dedicated volunteers.


Another highlight was the visit by members of the team from Dogs for the Disabled who came to see if one of their trained dogs would be a suitable option for Tilly at this stage. We worked through a lot of paperwork looking at Tilly's lifestyle and the possible ways that a dog could improve her independence, and then, to Tilly's joy and delight, they introduced us to one of their dogs in training. We then did some practical tasks with this beautiful dog and Tilly got to take her for a walk. Tilly's best bit was giving out treats to the doggie, which gently took them from her little hands, making sure they were good and clean with lots of snuffles and licking during the process. I do understand that it is a huge commitment to take on an assistance dog, but I am convinced that it will have a huge impact on Tilly's life. We now need to wait to hear the outcome of this latest assessment, but either way, I am sure we'll soon be hearing the patter of tiny little paws!

I've just taken a call from the Caudwell Children regarding Tilly's contribution to this year's Butterfly Ball - more news on that later......

Half Term Heaven Part 2

Thursday saw another day of persistent rain, but Tilly and Candice wanted to walk over Westminster Bridge, through St James' Park and up to Buckingham Palace. We did the official tour last summer which was fantastic and must be revisited one day with my lovely Mum - she'd adore it.

We sploshed our way up to Hyde Park Corner and I was amazed that there was a lift right to the top of Wellington Arch - but sadly it was not operational for this visit. More work for Boris to attend to as the walk down to Knightsbridge and Harrods was rather perilous with really high steps and few dropped kerbs. However, the traffic was solid so we were pleased to be moving along quicker than the buses.


Harrods was a dream and we luxuriated our way around the ground floor, gasping at price tags and indulging our senses in the marvellous Food Halls.


We marched on to The Natural History Museum which was full to brimming and inched our way around the amazing exhibitions. The highlight was, of course, the Main Hall which is a splendid feature in itself. We were delighted to be scooped up by a Museum official who guided us to the exit of the dinosaur exhibition past a very, very long queue, and we meandered our way through ages of prehistoric time. More than awe-inspiring!



We then pushed our way on to the Science Museum which is only next door and was so very much easier to get around with large walkways and fewer people. The exhibits were fascinating and Rolf was particularly delighted to see a replica Apollo 10 Luna Landing Capsule and alongside his old Chopper bike! It was riveting, and like all museums and art galleries need to be visited again and again.

We then made our way up to the Albert Hall, marvelled at its beauty, and were aghast at the shocking access to the opposite pavement and found ourselves having to walk a long way around to get to the bus stop on the other side - (in the pouring rain, Boris)!

The bus ride back to Charing Cross Station was very welcome, warm and dry. I just can't get over the blast of Tilly being able to jump on and off any bus that comes along. We had supper in Garfunkles and made our way home across the Jubilee Bridge and to our amazement the rain stopped, the sky cleared and the moon shone bright. Perfect conditions for a night ride on the London Eye! It was truly amazing, with not a queue in sight, and arguably more enjoyable than a day trip?

We did have a short blast of a false fire alarm on Thursday night which made me feel pleased that we'd taken along Tilly's all-terrain manual buggy - made me wonder what we would do without it if we had to get down six flights of stairs in a hurry?

We had a rude awakening the next morning with a much longer, more convincing fire alarm. I leaped out of the bath, Rolf threw open the buggy and I disconnected Tilly's ventilator and monitor and whilst Candice jumped into her boots over her pyjamas. As I was wrapping Tilly in the duvet ready to transport her down the fire escape the bell stopped ringing and we confirmed with reception that it was another false alarm. My heart has only just stopped racing and will certainly make me more wary for future travel evacuation procedures.

With respite from the rain we walked over to Convent Garden, with Tilly managing to negotiate a few treacherous crossings near the market place to meet up with Rolf's brother, Uncle Frank and his wife Auntie Pat. It is amazing and commendable to think that the local Highways Agency managed to drop every kerb from Tilly's house to her first school and a shame to think that such highly visited tourist areas can remain overlooked in a few critical places.


However, once in Covent Garden there is only one place that we Griffiths like to go and that is the Crusting Pipe on the lower level of the market. You need to have an employee to escort you to a lift and then come along, 'underneath the arches', and come out on the terrace of the Crusting Pipe. From here, we enjoyed delicious wine and food and were serenaded by a stream of outstanding opera singers and musicians. There is never a lunch quite like it.

We then wriggled down to the river and caught the wonderful Thames Clipper at the Embankment right up to Tower Bridge. We were so delighted that we could access all areas and found ourselves strolling across the high level walkway, drinking in the views and the exhibition. Rolf and I could never have dreamed when we ran over this iconic bridge during the London Marathons of 95 and 96 that we would be on the upper walkway with our lovely little girls some ten years later. What a journey we've had!


Following a trip to the 'oily bits' of the engine room of Tower Bridge we all made our way to meet up with cousins Martin and John and their partners, Fran and Lindsay for an evening meal at the Strada - a very classy, glass-fronted Italian restaurant commanding outstanding views of the Tower. We felt very 'posh' indeed, and Tilly was looking forward to showing off her 'arm-sling' skills and independence to her family.

What I haven't mentioned was that in the drama of last evening's fire alarm we forgot to switch on the charger for Tilly's powerchair and she was now running on 'empty', and in serious danger of grinding to a complete halt. Fortunately we had taken the charger with us and the restaurant were more than happy to charge the chair, but the power point was nowhere near our table! Not daunted, Tilly was rather chuffed to be carried to the table and try sitting on one of the elegant benches, however she was placed between Mummy and Daddy and being helped to eat! Not quite what she'd had in mind! Fortunately after about half an hour the chair was ready for Tilly to regain her full independence and take her place up the girls' end of the table and catch up on all the news and enjoy her meal by without being fed. Such simple pleasures!


Another joy of the evening was jumping on the Thames Clipper and cruising back to our hotel along the twinkling River Thames - just love this way of getting around as the views are more inspiring than the London underground. Perhaps things have improved since we last tried, but the few Tube stations that were accessible were not on our route, so we didn't even investigate this time - may be next time we'll give it another try as I'm sure Tilly and Candice would enjoy the experience of rattling along at high speeds in dark tunnels!

Check-out on Saturday was a leisurely twelve o'clock, so we had plenty of time to have breakfast and reload the car. We waved a fond farewell to Peni, one of the Hotel Managers, who had once again helped out with the luggage, vowing to return and headed back up to the frozen north.

The poosies danced on the patio upon our return, and it felt lovely to be back in snowy Staffordshire. After many hours of unloading and re-installing of the machines, Rolf served a small sweet vermouth on ice with a slice of lime; we had pasta for tea 'like a proper family for once'; and we all collapsed in a heap on the couch in front of the box!

As I drifted into unconsciousness I heard Rolf say, "I think we pulled it off!" I think we just might have! Half-term Heaven 'done!'

Half Term Heaven Part 1

The Griffiths' Clan decided to load up the entire contents of Tilly's bedroom and bathroom; family frox box; and a small mini-bar into our car and head south for the winter half term holiday. It is quite alarming, almost embarrassing, just how much stuff we have to take away, even for a nightstop, and having a long-based accessible vehicle and the personal strength of a Russian shot-putter sure helps. Any family living with disability knows that this 'jolly' has been months in the planning, with Rolf nervously booking non-refundable theatre tickets, with fingers and toes crossed that Tilly would remain fit enough to travel.


We were warmly welcomed, and assisted, into the Premier Inn, just next to the London Eye, and were amazed at the location and facilities of our holiday home. Rolf is still thanking his lucky stars that he could park our vehicle right underneath the hotel, where we could get at it, at no extra charge - a major selling point! The only slight drawback is that wheelchair access is only via this car park and a hotel employee is needed to operate the lift to reach this level from reception. We were told that they were looking into a lift at the front entrance, but no plans are drawn.

This hotel came well-recommended and we were not disappointed. The room was actually big enough to accommodate all of Tilly's machines, with proper beds and enough room to spin a wheelchair. The only snag was that there was no roll-in shower, so Daddie had to be Tilly's 'supporting cushion' at bathtimes. This was one of the few bits of equipment that we were sure we would not need! We'll check next time! We are also very lucky that Tilly is still light enough to be able to be transferred manually by two of us, but I imagine that it wont be too long before we will need to shoe-horn in a mobile hoist and slings to our packing.


Having cracked a bottle of Champagne to celebrate Valentines Day, and the start of our adventures we walked over the Jubilee Bridge to Chinatown and celebrated Chinese New Year at the Wong Kei restaurant. It was the girls first authentic taste of China and they loved it. Tilly caused quite a stir managing to eat with chopsticks using her arm support, and the waiter filled her lap with fortune cookies and dancing dragons.

Monday's weather was glorious so we marched off along the south bank of the Thames on the fully-accessible towpath which was truly wonderful. We stopped off at the cavernous Tate Modern, and took in a magical tour of the Globe Theatre, all without any access issues. We trooped over the Millennium Bridge and found ourselves in the jaw-dropping splendour of St. Paul's Cathedral. There is a lift for wheelchair access on the south side of the courtyard which goes to the main floor and the Crypt. Tilly was delighted with a 'round-the-corner' lift which carried her up to the main alter - brilliant. Candice and I left Tilly and Daddie scooping up a delicious stew in the Crypt cafe and moutaineered up hundreds of steps and narrow winding staircases right to the very top of the Dome. The view was certainly worth the climb.

Forsaking the buses, which are all fully accessible, we strolled down Fleet Street, and the Strand and landed in Sarastro's Restaurant in Drury Lane. The rich velvet and tasselled decor, with gilded finish and elegant chandeliers gives you the impression of actually dining on stage set for an opulent opera - which indeed you are. As the food is served the music starts and we were treated to live performances from accomplished musicians and opera singers and we were transported to La Scala! A truly unique dining experience - but watch out for the loos - younger visitors need to close their eyes and the faint hearted need to divert their gaze as the murals would like to transport one off to a Roman orgy!

Tuesday was thick with grey rain, so we hopped on the Thames Clipper with a day rover ticket. This is a brilliant service which runs every twenty minutes, stopping off at key locations from The London Eye, right up past Greenwich to the O2 Arena. The views are fantastic along the way and there is a little cafe onboard too. We loved it, especially as the Underground is pretty much inaccessible for our needs.

We jumped off at The Tower of London and tried our best to get around this amazing site. The cobbles, however, made the going very slow and uncomfortable for poor Tilly and 'her tiny hand was frozen' in the relentless rain. At other cobbly locations outside the Tower there is a single paving stone path laid which would have made Tilly's trip inside much more enjoyable. However, we were escorted by one of the very helpful Yeomen into the dazzling display of the Crown Jewels and all was instantly forgiven. Tilly went around and around on the moving walkway, eyes sparkling reflecting her joy at the magnificent treasures.

Tilly and I settled in one of the spacious cafes for lunch and Candice and Daddie explored the twisting and treacherous Tower. Next time we'll take Tilly's 'all-terrain buggy' and hopefully chose a more clement day.

We hopped back on our boat and returned to the Embankment and made our way back to Drury Lane, this time to see Oliver. We were welcomed by name at the accessible entrance and were all spellbound by the performance. It was great to see Jodie play Nancy as we had watched her progress to this role on TV.

We must have a word with Boris, however, as there is a serious lack of dropped-kerbs in this very busy area of Theatreland and there were many other wheelchair users having to negotiate steep drops and having to stay on the road at the mercy of the busy traffic. The other 'blackspots' that we found were the approach to Covent Garden, and right outside The Albert Hall there is a dropped kerb to cross a very busy road which does not have a dropped kerb the other side - there are a couple of steps! Wheelchair users beware!

We couldn't get over the relaxed breakfast scenario at the Premier Inn, which ran from 0700 to 1030. It was an amazing buffet catering for every taste, and children ate for free. What a bargain!

On Wednesday we spent the morning the National Gallery and immersed ourselves in this glorious world. It was great for the girls to see the originals of works that they have studied at school, and access to all areas was brilliant.


One of the highlights of this holiday must be our trip to see Les Miserables. The soundtrack is a real family favourite and we all know nearly all of the words as it is played on many a long journey. Tilly and I sat in a newly-installed 'lodge' which felt just like sitting in a proper 'box' - a personal lifetime's ambition! The production was magnificent and Rolf and I felt completely destroyed by the extremes of emotion that we'd encountered throughout the show. The girls loved it and want to see it again!

We didn’t really encounter too many difficulties in finding somewhere to eat in the evenings, although there are many restaurants that have steps leading into them and look like ‘no-go’ zones. To be fair, we didn’t even ask these places for entry and settled for level-access chain-style restaurants like Pizza Express, Garfunkles or the Strada

Hundred Miles per Hour

The last ten days have been really chaotic with hardly a minute to think. A sign of this is that Candice and I skidded down for our swine flu vaccination last Saturday, only to discover that we'd arrived a week early! This absolute waste time happens all too often with me.

Another sign that I'm speeding is the telephone call from a member of the CAST team to tell me that they are outside and hoping to come in and look after Tilly overnight! I love these calls, but feel so embarrassed that I'm not up on my hind legs to welcome them in! These week's was much needed as Tilly has been rather restless and in need of attention during the night.

We waved a teary farewell to my lovely Mum who had been with us for two weeks' holiday. We'd had a wonderful time and she had been able to share the girls' birthdays with us which was perfect. The other fantastic thing that Mum helped with was getting "Tilly Smiles" off my desk. It was with great ceremony and relief that I delivered it the the Caudwell Children's Design Team, and now I wait with with baited breath to see how it will turn out. The Jennifer Trust for Spinal Muscular Atrophy have secured funding for this project and they too are very excited and are hoping to have it ready for this year's annual conference and 25th Anniversary.

I'm half hopeful that it might be ready before the General Election and Tilly will be able to take it to No. 10 to show Gordon Brown as he did say that she was welcome to visit him at another occasion when she missed out due to ill health last year. Rolf thinks I'm bonkers!

I did my "Talk" for the Caudwell Children's Volunteer programme again last week and found myself reliving those early 'fresh diagnosis' days. We really have come a long way and have received a lot of amazing support.

Spun into Treetops, the Donna Louise Hospice, for a couple of hours of solidarity and calm. These coffee morning sessions are so healing and helpful and I always leave feeling energised and hopeful. We found out that the Treetops team are hoping to be involved in the Aiming High activity days which will mean that even the children with complex needs will be able to attend. Brilliant!

There has been mountains of preparation for Rudyard Sailability's Mediation meeting which takes place on Monday, 15th February. It is very much hoped that there will be a positive outcome that will really suit all parties and that the Charity will be able to settle down and concentrate on its future. I dread to think how much time and energy has gone in to solving this dispute that has rumbled on for six years. Crazy - but now we find ourselves at a 'make or break' time and I feel very tense, but ever optimistic - surely a an accessible boat store at a Lake is not too much too ask? We'll see.

Tilly has had to endure many appointments over the last few days including one that didn't even happen, but meant a morning off school hanging around to see if she could go to Birmingham for an infusion to strengthen her bones. This new drug can only be administered in Birmingham and the wards were full. Another appointment has been scheduled to see Tilly as a day case, so this should go ahead next time. I'm really dreading it as needles are really not Tilly's forte!

We've also picked up Tilly's night resting splints and day splints and once again Tilly's feet are being held comfortably in a reasonable position. Tilly chose the colour black for her day splints so that they would blend into her school uniform, but unfortunately they are pink with butterflies - very Tilly but not very cool for school. A black pair of leg warmers has addressed this situation and Tilly feels she part of the school gang!

We also saw Tilly's orthopaedic surgeon who discovered that her left knee seems to have suffered a fracture or infection and has stopped growing! The right leg is charging ahead with the help of the bone strengthening drugs, and the discrepancy grows ever bigger. An operation has been planned to try to encourage one leg's growth and arrest the other's! Never a dull moment. I must say it took us rather by surprise. The good news is that they will try and do Tilly's spinal rods lengthening at the same time.......like anything like this, we'll be glad when it is over as the waiting for it is rather painful, but unfortunately we have to wait until there is space in the intensive care unit and we have heard that they are very busy with very poorly children, so wait we must.

Had a great Annual Review with Tilly at the Junior High School where Tilly is continuing to make wonderful progress and is very happy. In order to increase Tilly's independence and to keep up with her learning Tilly has begun to use her NeaterEater arm supports all the more, and they are brilliant. Tilly needs also to make more use of her Dragon Speak computer which have voice activated software. Very exciting. We are also going to investigate the possibility of Tilly engaging in a course of Tai Chi or Yoga when she is unable to access the PE because of a muddy field or whatever. Sounds very exciting and again the arm supports will be brilliant for this. Another exploration is to see if the school can get a high-lift platform so that Tilly can access the stage for awards and performances. Even more exciting. I love the school and their obvious love and commitment for Tilly's complete inclusion.

Candice had a fantastic report too from the Junior High and was delighted to have spent a session at Keele University with the Pupil Council. Candice's school life is filled with rowing, hockey, dance, football, tag rugby, netball and cross country - all brilliant stuff and I'm so pleased that she enjoys it all so much.

I spent a couple of days at the girls' First School as they were blessed with a visit from the dreaded OFSTED inspectors. It is such an amazing school, but I don't think anyone likes to be put under the magnifying glass and the tension was palpable. Even Tilly made an appearance and had to tell the Inspector about all the fabulous times she had there - he seemed genuinely impressed as indeed he should have been - they all did an exemplary job and set a very high standard for others to follow. I spent my days helping out as I used to on a regular basis and so enjoyed being back reliving so many memories of so many wonderfully happy times. The whole school are outstanding and they all deserved the excellent report that they had from the Inspectors.

The tension mounts now with the Junior High school as the Inspectors are circling and will be arriving at any time. I attended a Governors' meeting with this school and the impending visit was certainly near the top of the Agenda.

We had a stunning time at Shelton Pool with Special Matters last Sunday. A group of families who have children with special needs were treated by the Mothers' Union to an afternoon of splashing fun. It felt a bit like being on holiday with the warm waters and shrieks of joy from the children, without a single length being counted!

Tilly was back with her Saturday private swimming lesson this week which was great, and a super opportunity to build on all that Tilly has achieved at Horton Lodge. There is nothing to beat the rewards from seeing Tilly in the water.

Candice, Rolf and I also took it in turns to stay with Tilly and disappear off for our flu jabs. Another little job done!

Rolf has been an absolute gem and guided me through the process of setting up a new computer following the crash of the old one. I think that I'm now back in the e-world, but there's no real guarantee as yet!

With half term upon us I feel that the Griffiths'-mobile is gently slowing down with the welcome return of 'tea like a proper family for once' last night, followed by a snuggle up on the couch to watch our TV favourites.

Looks like we're headed for cruise mode?

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.