It's beginning to look a lot like Christmas!

The Special Matters Festive Coffee Morning was a particular pleasure last week with a chance to catch up with some old friends and welcome some new additions to the Special Matters' family. It is very exciting as this group for families with children with special needs is growing from strength to strength. It is also a good opportunity to meet up with 'Professionals' working in this field, many of whom I've heard about, but never had the chance to talk to. I always learn something valuable and feel that I am able to pass on some good ideas at these gatherings, so it really is true that 'the way to get along is to go along'.

The snow and clear blue skies has certainly added a magical backdrop to our Christmas preparations. We have all been like 'Bambi' skidding and scrabbling from one festive gathering to another, a mince pie in one hand and a 'cough assist' machine in the other. Yes, Tilly has unfortunately succombed to a horrible, chesty cold! We withdrew Tilly from the last couple of days of school to try and 'fend it off at the pass' and prevent the virus from getting a grip of her respiratory system, but it has needed lots of secretion management and the jury is still out. No one could have worked harder at it than Tilly as she has spent her days having Ventolin nebulisers, 'shaker-maker', cough assist and then suction. This programme has been repeated around the clock every couple of hours. We are all praying for a reprieve for Christmas day at least.

To help us through this latest challenge we were very relieved to have a weekend visit to Treetops, the Donna Louise Hospice. The twinkling lights of Treetops really did look like the lights of tropical island welcoming us to rest and recharge following a rather stormy voyage at sea. We had the pleasure of taking part in the BBC Radio Stoke live broadcast at the start of our restorative retreat. It was great to meet the Presenter, Pete Morgan and see all the 'behind the radio' scenes and feeling the second-by-second tension of a live breakfast show. Always a joy, was to meet up again with Reporter, Becky Wood who has been following Tilly's story.

Tilly spent the day at Treetops, being carefully monitored by the Nurses, but still managing to have lots of festive fun including a visit from Santa. Following a family Church service at school Candice was scooped up and joined Tilly at Treetops. It was wonderful to see that special friends were also enjoying a week-end respite visit, and so a great deal of catching up on the news was on the agenda. It is so special to have these opportunities to be with families who really do understand the nature of our journey.

The girls settled in together and I ventured out into the night to help out at the Caudwell Winter Wonderland Ball. Click-clacking in high heels and evening dress in the icy snow I felt very vulnerable and longed for my usual boots and jeans, but felt so pleased that because Treetops were looking after Tilly and Candice I could attend and offer my support. The Caudwell Team were very welcoming and the Ball was fabulous. I managed to sell some raffle tickets and had the privilege of meeting some lovely revellers who were having fun and determined to help children with addtional needs. A winning combination!

I left the festivities in full swing and gingerly motored in the frozen night back to the warmth and comfort of Treetops. I was in time to settle the girls for the night and was packed up to my room with a specially made 'midnight feast', lovingly created by one of the night staff. I curled up with a magazine, the television mumbling in the background, and drifted off into a deep sleep, knowing that the girls were also safe and warm.

Saturday was spent catching up on the various Christmas jobs, whilst the girls had a visit from a Magician and an enchanting miniature daschund 'pat therapy dog', played games (mainly hide and seek) and Tilly carried on with her secretion management routines. This visit to Treetops was pure joy and so productive for me as I would never have managed to get so much done at home, and the girls were now feeling extra-Christmassy!

After fond farewells and many a festive greeting we skidded back to the frozen Staffordshire Moorlands and Daddie. Poor Daddie had been wrestling with the demands of our B&B whilst we were transported to 'Tropical Island Treetops'. Not that we're not pleased to have the business, but it was a shame that Daddie was left home like poor old 'Cinders'. We'll have to try to organise ourselves better next time.

Sunday night was divine as Daddie cooked up a Rolfie Roast and we all enjoyed tea 'like a proper family for once' and caught up on the final of 'Strictly'. Simple pleasure that bring us such joy!

Monday morning was filled with various trips to the Podiatrist and Dentist for Tilly and Candice respectively. Tilly continues to struggle through her chest infection, but remains quite cheery.

Candice and I yomped out to join hoards of mourners to pay our respects to Janet. Our lovely Snowy Owl was given a Guard of Honour by Guiding representatives who gave the Guiding salute as the coffin was taken into the Church. The loss of this beautiful lady has had a profound effect on my soul and I am still struggling to believe that I will no longer see Janet's twinkling smile and feel her warm friendsip. The truth is that I probably will as the spirit of some folk never really 'die'.

We were treated to an afternoon visit by Ian Parker and his lovely family, including their new addition Jake, the Jack Russell. It was the most heavenly of afternoons gathered around the fire, under the lights of the Christmas tree sharing stories, festive treats and catching up on the news. Apart from being great friends, Ian and his family are a great source of inspiration as Ian is a member of the Federation for Foot and Mouth Painters and creates the most spectacular pieces of artwork holding the paintbrush in his mouth. We have the honour of displaying one of Ian's famous pieces, "Chatsworth" in our dining room which is often the talking point of our visiting B&B guests, and will, one day, be carried away by one of them! We shall enjoy it until then.

We all enjoyed a late tea, 'like a proper famly for once', of Rolf's speciality fish and African potatoes and then snuggled down on the couch to watch a recording of the Royal Variety Performance. Apart from being Head of Catering, Rolf is also Head of Entertainment and always manages to save things that we all really enjoy. Rolf's Christmas speciality is Ross Kemp's Christmas Carol which he saved to video a few years ago and has been enjoyed on Christmas Eve ever since. Can't wait!

Here we are on 22nd December and Tilly is still working through her Chest infection and we are working through the Christmas prepartions. The presents are nearly all sorted, the cards are nearly all written, the shopping is nearly all completed and the cold sore has arrived. Yes, it's beginning to look a lot like Christmas!

All Going Swimmingly

Christmas wouldn’t be Christmas with the Treetops’ Carer’s Christmas Party, It is a perfect opportunity to swap good news stories; share disasters; cry and laugh, (sometimes simultaneously); indulge in festive fancies; and generally ‘be yourself’ amongst people that really know where you’ve come from and where you’re going. This gathering is a unique space within the frantic festive whirl where carers can leap off the Christmas conveyor belt and find solace, understanding and friendship. Christmas can be a very challenging time of year at the best of times, but the added stress of a child with special needs can lead to endless complexities.

The party this year was wonderfully well attended and it felt great to be with old friends and make some new ones. The Donna Louise Trust has support for the family very high on its list of priorities and offers a Carers’ Support Group every month. These are fantastic opportunities to socialise, but also to learn more about the world of special needs; the group guides itself with the support of the hospice and is hoping to develop the activities in the New Year. The feelings of isolation can be so destructive to families who believe that they are the only ones feeling so detached from the rest of community. These meetings are so positive and so empowering and I’ve seen parents almost crawl in feeling so depressed with their situation, and then watch in delight as they gather up confidence and hope and then leave with their heads held high. I believe that I manage my life better because such support.

The added extra for this year’s bash, however, was that Rolf came along for the last ten minutes. Rolf, like many male carers, isn’t really keen on ‘support groups’ so it was great that he joined us and swelled the ranks of the ‘Daddies’ – an elusive species that Treetops and other organisations are always trying to reach! Got to keep trying to engage with ‘Dads’ as I’m sure that it can be very lonely on the outside looking in.

Tilly’s trip to Orthotics was very positive. Tilly needs to wear plastic, ski-boot style splints to try and slow down the deviations of her feet which look like they are trying to turn upside down. Tilly needs to keep her feet in as good a position as possible so that she is able to weight-bear in her standing frame. Standing therapy is one of the most important activities that a child like Tilly can do, but it is rather laborious and can be painful for her.

We managed to park the car and arrived with time to spare so didn’t risk being turned away like the last time. The staff was very welcoming and pleasant and we were seen on time. The Orthotist patiently listened to the sorry saga of Tilly foot splints that were created in the summer and have been ‘chewing’ her feet ever since. Tilly had been advised not to wear the splints as they were only causing pain and no improvement. The consequence of this is that Tilly has been unable to stand in her standing frame, so her legs are suffering and becoming painful behind the knees. Tilly’s spine is also ready for a lengthening of her spinal rods so she is listing badly to one side, and this would be alleviated if Tilly had splints and could stand.

The Orthotist was very understanding and suggested that Tilly’s feet are just about past splinting as a correction to one side of her foot would lead to a deformity on the other. We all agreed that Tilly should now been referred back to the Orthopaedic Surgeon who may consider surgery. In the meantime, Tilly was cast for new splints in a very gentle position that should make them wearable night and day.

At every point during the consultation Tilly was asked if she was happy with the way forward. Tilly, of course, is delighted and is looking forward to new splints as it will herald the purchase of a new pair of boots to go over them! Ultimately, however, I think that Tilly is hopeful that the surgeon will be able to make her feet ‘shoe-shaped’, but is prepared to endure the splints until that happy day dawns.

Tilly managed a couple of hours at school before I scooped her up for her weekly swimming session in the warm waters of Horton Lodge Special School. We all watched in absolute amazement as Tilly SWAM length after length without any buoyancy aids. It was all the more wonderful because Tilly’s retiring physio, Elaine, saw this wonderful achievement, and was actually handing Tilly’s paperwork over to the new physio that evening. What a high note to hand over on!

I said to Tilly, as she was being hoisted out of the pool, that I never believed that she would ever swim without aids. “I did”, said Tilly, “And so did I!” said Elaine. This wonderful commitment and belief in Tilly is what has made Elaine so inspirational. We shall miss Elaine at our weekly sessions, but will endeavour to keep her on our radar. Some folk are just too good to let go!

She's Home!

After an unusual night’s sleep with no monitor I bounced out of bed early and sped off to Alton Towers to collect Tilly from her CAST sleepover. My mission was to pack up Tilly’s things whilst she was having breakfast and generally help out with the morning routines. Upon arrival everything was magically done – equipment dismantled and put away, case packed, Tilly dressed in school uniform and breakfast sorted. Sue helped me load the car and Tilly waved a cheery goodbye to her room-mate and the nurses.

On the journey to school Tilly told me every detail of her most amazing overnight stay. The van was filled stories of Santa’s grotto; presents, hot chocolate; dressing up for dinner; disco dancing; entertainment; party games, Christmas crackers; high jinks at bedtime, but most of all, an overwhelming sense of camaraderie and achievement that could only be shared with such an inspirational group.

These wonderful youngsters are incredibly challenged, some needing help to take their very next breath, yet with the vision of the Children’s and Airways Team, they have had the opportunity to experience this independent adventure. It must have been an interesting time for Tilly to be among other children needing as much, if not more, care than her. It must have been an unusual feeling for Tilly not to have the focus of all activities based around her needs. The outcomes of this magical trip are probably endless; the most outstanding of all, is that Tilly had fun and can’t wait for the next one!

Rolf, however, is not so sure and is still ecovering from Tilly’s nightstop. He requested the monitor be turned up full blast last night so that he could drop off to Tilly’s rhythmic breathing on her ventilator. Daddy’s little girl was home and Daddy was pleased. I just know that my Dad would have been the same.

CAST-away!

We scampered down to St Edwards, Cheddleton early Saturday morning to hear the final arrangements for the girls’ Confirmation and my Reception into the communion of the Church of England. A ‘master class’ in festive flower arranging was also taking place so this ancient building was bustling with activity, scented with spicy aromatic greenery with carols drifting in the air. It felt good to be joining a ‘living’ beautiful Church.

I was returned from lofty heights by the invitation to dress the Children’s Window for Christmas. My heart sank as I remembered our Harvest Festival display which had rolled over in the back of our van; the home-made bramble jam smashed on the road as I opened the door; and on my return from the bin with the sticky broken glass I stepped on the prize-winning squash that had formed the centre-piece. I remember how I’d dumped the tragic ‘upside-down’ offering on the back pew and raced back to Tilly who was most unwell at the time. I had laughed and cried all the way home and then delighted when I heard that the wonderful ladies had worked their floral magic and transformed our Harvest disaster into a work of art. I will pray for inspiration and a smooth ride to Church for our next display.

Saturday afternoon was the Brownies and Guides’ pantomime in the Forum Theatre, Hanley where the Mow Cop Players were performing Cinderella. It’s great to see Rolf having special time with the girls as, like Cinderella, he is so often left at home to attend to our B&B and can miss many ‘magical moments’. It was also an opportunity for me to flick a duster around and mop some floors, as I am so often out enjoying ‘magical moments’ that the housework gets overlooked!

The panto was a triumph and a great time was had by all. All the more enjoyable for Tilly as there were no loud bangs or flashes and no-one left the stage to talk to her. Of all the children that I know, those who use wheelchairs are the least happy around dressed up Characters, and unfortunately, it is these children that the characters make a ‘bee-line’ for! Such is life!

Saturday night was a winning combination of ‘tea like a proper family for once’ with ‘Strictly’ and ‘X Factor’ on the couch! It must be lovely for Tilly to park her twenty stone vehicle and snuggle up with her family. It is certainly wonderful for us.

We were up early Sunday morning as with almost military-like precision we’d planned the day to include Confirmation and then Tilly’s Christmas Party sleepover with the Children and Airways Team at the Alton Towers Hotel. This was a very big deal for us as it was the first time that Tilly would be away form home without either her Mummy or Daddy. Tilly was going to be looked after by Sue and Eileen who know Tilly so well and are trained respiratory specialists. Even more exciting was that Tilly would be with a few other children who access the same service. Two of the children attending had actually done a fundraising event to pay for this very exciting treat.

As I huffed and puffed to get Tilly ready I experienced one of those heart-stopping moments when Tilly remarked, “I’m hard work, aren’t I?” My heart instantly shattered into a thousand pieces as I struggled to find a way to explain to Tilly that caring for another person can be ‘hard work’, but is one of the easiest things in the world to do, because it is done with such love. I explained that there is no greater job on the planet than helping someone you love, and that all parents look after their children, and then, in turn parents can be looked after by their children. I tried to explain that it is an honour to care for others and not just a duty. My response seemed to satisfy Tilly, but I feel desperately unhappy that my little girl thinks that she is ‘hard work’. I’ve tumbled the issue around and around in my head and feel that I must have gone wrong somewhere along the line and I must make more effort to ensure that Tilly knows that looking after her is no chore, but an absolute pleasure.























The Confirmation Service was divine. The girls dressed in beautiful white flowing dresses to make up for being dressed in cream corduroy trousers and white home-knit cardigans at their Christening! I have never been forgiven for such an indiscretion! The welcoming atmosphere in the Church was palpable with our ‘family’ hugging the girls and giving out special greetings cards. The Priest in Charge had worked hard to arrange the service to accommodate a Baptism, nine Confirmations and three Receptions. Candice read one of the Readings and everything, pretty much, went according to plan. The star of the show, however, was Gordon, the Bishop of Stafford who officiated and brought a depth of humanity, humour and love that touched us all. We shall never forget this special event.

Afterwards, we all enjoyed refreshments, still bathing in the wonderful glow that the service had generated. I then whisked Tilly away to her Alton Towers’ Adventure. The children and Staff went off to find Santa’s grotto and I stayed to set the equipment up in Tilly’s room. It felt very strange to leave it there for someone else to take charge of. I kept thinking of Tilly’s delight at being there ‘on her own’ and did my best to ignore feelings of sadness as I drove away.

At home, Rolf felt the same, but managed to cheer us with his impressions of the Bishop. There were many moments during the evening when Rolf would say, “I don’t like it,” but we managed not to leap in the car and spring Tilly home. We kept saying that this is how any parent would be feeling, but we both knew that this was probably not the case. This inspirational trip is a milestone in our lives, and we must be forever thankful to the CAST team for having the courage and insight to organise it, and to the two special youngsters who raised the funds for it.

I was about to get stuck into the Blog when Rolf suggested that I might like to watch Dr Doolittle. I was about to decline when he advised that Candice had hoped that I would like to watch it with her. To my shame, I had not thought of this wonderful opportunity, but I will forever be thankful to Rolf for the most heavenly of afternoons snuggled up on the couch, under the lights of the Christmas tree, with my beautiful Candice. I temporarily removed myself to the table to enjoy the most scrumptious of fish pies ever, and then retreated back to ‘snuggle-zone’ with my beautiful daughter for the final of ‘X Factor’. Such a treat!

Tilly telephoned to say that she was having a fabulous time and had eaten enough for ‘ten bears’! Obviously not off her food so all must be well!

A Challenging Week

Tilly continues to make good progress swimming without aids in the warm calm waters of Horton Lodge Special School. A special treat this week as Daddy came along and saw his little mermaid swimming. Tilly is so thrilled.

Sad news reached us on Wednesday as we heard that Tilly’s “Snowy Owl” from Brownies had unexpectedly died. Snowy Owl had always tucked Tilly under her protective wing and ensured that all of Tilly’s needs were met. It was Snowy Owl who carried us through Brownie Camp with her indefatigable smile and good humour - an ‘unsung hero extraordinaire’. Janet gave of herself completely and will be one of those special people who we just won’t ever accept has actually gone, as she has left such an indelible mark on us.

Friday saw us embark upon a two hour journey in freezing fog to Oswestry for a review with Tilly’s neuromuscular specialist. We were blessed with Tilly’s new physio for company and support. For some reason that was not explained to us, Tilly was seen by a specialist in spinal cord injury and not her neuromuscular specialist. The Orthotics department were unable to see Tilly at all as a telephone message advising them of Tilly's arrival had not reached them; and the physiotherapist was busy with a large family so gave his telephone number in case we wanted some advice. All was not lost, however, as we had a positive experience with a specialist in standing frames and have been offered a further appointment once Tilly has had her rods lengthened and has actually got some foot splints.

As we battled home in the dark, foggy traffic, racing to meet Candice from Chess Club, I considered how I’d taken Tilly out of school for the entire day, missing her Christmas lunch, with such high hopes in the services at Oswestry. I couldn’t help feeling that Tilly had been ‘short-changed’ on this occasion.

Rolf was waiting at home with open arms, a joke on every tooth, and a sweet vermouth on ice with a slice of lime. We settled down to 'tea like a proper family for once' and had fish and African potatoes under the lights of the Christmas tree.

We have such a lot to be very thankful for.

We're not there yet!

Suited and booted, it was great being scooped up to deliver the last of my “Talks” for the launch of Staffordshire’s ‘Parent Strategy’. My willing escort is one of those wonderful people who have really made a difference for families with children with special needs, and I love the in-depth conversations that we always enjoy. Sharing transport is a great way of really getting to know someone.

We have a theory that almost every family will get served a ‘dollop’ of something nasty to deal with at some time or another. For some families this ‘dollop’ is unspeakably smelly and difficult to live with, and for others, this ‘dollop’ can be dispatched quite quickly. ‘Dollops’ are part of life and if you feel that you haven’t had yours yet, then quite probably one is on its way. …. Let’s hope not. We feel that the ‘Parenting Strategy’ is there to try and help families manage their particular ‘dollop’ whenever and however it might occur.

I was inspired to deliver my presentation as amongst the crowd was the Head Teacher who, against all County advice, had the courage and vision to welcome Tilly to his mainstream first school, St Edwards, in Cheddleton. It was one of the first big hurdles that we thought we had to overcome, but in fact, we were pushing at an open door. The Head Teacher was delighted that we had chosen his school for our little girl. I remember being elated and sharing my great joy with our glorious, now sadly departed, Vicar, Martin Leigh, who smiled and simply replied, “They’ll be lucky to have her!” These words were revolutionary as I had never thought of our situation that way around.

Another inspirational figure in the audience was an experienced nurse who runs Jigsaw, a support group for those living with autism. This wonderful lady has two sons who live with disability, and she has given up her medical profession for her family and for others. I had her in mind when I stressed the point that parenting can be heartbreakingly difficult, even for those carers who have managed to have a career, in Health. It seems to me that living with disability takes no heed of background, ethnicity, social or economic standing.

I really hope that this new Parenting Strategy will result in improved services for families struggling with the challenges that life has given them, especially as so much work as gone into it.

As preparations for Christmas continue, Tilly delighted us by using both her arm supports, working the electrics with her foot, and succeeded in helping Candice decorate their pink, fibre-optic Christmas tree. I wish I’d had my camera at the ready as it may have made a really thought-provoking Christmas card design. I’ve often thought that it would be super to design a range of Christmas cards featuring those who live with disability, excluding Tiny Tim, of course. Tilly designed one once with her as Mary in a typical Nativity scene and it was only just possible to make out her wheels under her long robe. I loved it and she sent it to John Caudwell, the person who gave Tilly her ‘wheels’, so it was perfect.

I had the pleasure of volunteering in the Caudwell Children charity’s office this week. I was immediately enveloped in a wall of photographs from this year’s Destination Dream’s trip to Florida. It was pure joy. Every picture had an amazing story to tell, and every story carried me right back to our amazing adventure to Give Kids the World last year. It really was the most magical trip that we will never forget.

My delightful reverie, however, came to an abrupt end when a Health Visitor rang in to ask the charity to refund the price of a bathroom that a family had funded for themselves by borrowing from relatives. I was quite shocked that this family had taken this route as with young children with significant disabilities they would probably have been entitled to an adaptations grant. It was explained that English was not the first language and that the family really had no idea of how to navigate the system and perhaps the charity could help. The Health Detectives were offered (trained volunteers to support local families needing guidance), and it was requested that perhaps the Health Visitor could also attend as she shares the same first language. To my utter shock and disappointment the Health Visitor replied that she was not an interpreter, but a Health Visitor! I could have cried.

I have been involved in working to enhance and improve the role of the Health Visitor when there is a child with a disability for over four years with Special Matters. There have been vanloads of reports, recommendations, audits and a recent relaunch of a checklist and guidelines. I know that this particular Health Visitor does not represent her entire workforce, but it still made me realise that there is still a very long way to go.

No matter how many strategies and projects are commissioned to improve services, at the end of the day, so much still seems depends upon the commitment of the person delivering the service and luck. That can’t be ‘right’ can it?

It’s beginning to look a lot like Christmas

Christmas has been creeping up, but it really seemed to arrive at the Griffiths’ household this week-end with the installation of the Christmas tree. Rolf and the girls ceremoniously went off the select the ‘prize-winning’ specimen whilst I took care of the ‘U’ bends at the B&B.

The tree was courteously parked outside in its rather unglamorous net whilst we went off to the Community Nursing Team’s Christmas Party. A mixture of Santa, sausage rolls and good company was all we needed to feel that Christmas was upon us. It’s always good to chat with other parents and carers in ‘the same boat’ as there is always something to learn.

We bid a hasty retreat from this party to join the swimming club party to enjoy more sausage rolls and good company. The season is definitely upon us!

Home again we caught up on ‘Strictly’ and, in spite of an excess of festive foods, delighted in Daddy’s fajitas. Not only can Daddy sort out the ‘fairy lights and garlands’, but he can cook!

Sunday saw us up very early trying to tame Candice’s waist length hair into a tight competition bun ready for her tap exam. Tilly stayed home with Daddy to help with the B&B’s breakfast and I scooted down to the dance studio with Candice. All seemed to go well, and it felt good to be with Candice at such a time.

We raced back to collect Tilly, but sadly not in time to join Treetops’ Santa’s on the Run race. Tilly was rather disappointed as she was hoping to win! May be next year! The weather was perfect and I can't wait to hear how they did.

The afternoon was spent decorating the house and the Christmas tree against a backdrop of carols and small Sherries! We love Christmas, and so do the girls!

Sunday night drew a festive week-end to a close with Rolfie’s roasted chicken and all the trimmings.

Must get on with the Christmas cards and shopping!

Just one of 'those' days!

Yesterday I had one of those ‘pleased as punch’ moments that returns to ‘punch you on the nose’ moments. Following the usual mad scramble in the morning to get the girls to school, I delivered Tilly to her taxi to attend swimming lessons with her class. I smugly smiled all the way home that such a mission had been accomplished and that it was not even 9.00 am. Still in self-congratulatory mode, the phone rang to tell me that I had left Tilly’s swimming gear in our car! Like a scalded cat I hurled myself back into the car and zoomed back into Leek to deliver the bag.

Rolf was none too pleased!

The rest of the day was spent catching up on jobs at the B&B and the house, in the knowledge that I would soon be off to help out with the refreshments at the Junior High’s Year 8 Parent’s Evening.

Ellen arrived to hold the fort and be with Tilly, as Daddy would be at hockey and ballet with Candice. Everything was working like clockwork, with Michele, the girls’ Godmother, arriving to take me to the school to do the ‘teas’. Feeling rather virtuous I became rather surprised at the parking availability. I could feel a ‘hamlet cigar moment’ emerging as I discovered that the Parent’s Evening is next Thursday!

Rolf was none too pleased!

However, all’s well that ends well, and it certainly did with the welcome return of ‘pizza on da couch’, and a glass of sweet vermouth on ice with a slice of lime.

Still Waiting

Tilly excelled herself in swimming in the warm waters of Horton Lodge Community Special School. Tilly discarded all her buoyancy aids, tipped her head right back into the water, leaving her mouth and nose clear, and then swam three lengths. Tilly beamed, “Just me and my bikini!”

Tilly’s dazzling smile soon faded, however, as we broke the news that she needed to go and have blood tests in preparation for surgery the next day. The promise of a MacDonald’s Happy Meal went a little way to ease Tilly’s anxiety. Ellen, Tilly’s helper, came along too which was a great support for both of us.

However, on her journey to the dreaded Treatment Room, Tilly just ‘lost it’. Knowing how difficult it is to collect blood, complete and abject fear overtook her and Tilly let our blood-curdling, heart-rending cries. Needles terrify Tilly, and there seems to be no amount of consoling or rationalising that will calm her. It is an appalling experience for all concerned. A brave and experienced Doctor eventually succeeded in collecting the required samples. We were all nervous wrecks.

The other news was that there was some doubt about the availability of a bed in the Paediatric Intensive Care Unit so we would need to telephone before returning the next morning for surgery. They were waiting for a child to be well enough to be moved out of intensive care to the general ward. The writing was on the wall.

The morning’s news was still rather uncertain, but it was recommended that Tilly attend as the hospital were doing everything they could to accommodate her. Tilly was exhausted after her traumatic experience and late night, and the early morning journey in the dark was tense. Upon arrival we were warmly welcomed and then given the unwelcome news that the blood tests of the previous night had clotted and they needed to be repeated! All colour drained from Tilly’s face and I thought she was going to keel over. We were taken back to that dreaded Treatment Room with a wonderful nurse who somehow managed to calm Tilly a little, and even managed to collect some blood. Poor Tilly was almost convulsing with fear. A mother’s worst nightmare! A sense of helplessness prevails.

The rest of the day was spent waiting. We were treated to a visit from Tilly’s surgeon, Mr Ahmed, who always inspires great confidence in us. He reported that it would not be possible to proceed without the guarantee of a bed in Intensive Care for Tilly being available, and that everything possible was being done to achieve this for her. I signed the consent forms, ‘just in case’.

As the hours slipped by, so our hopes faded, and by two o’clock it was announced that surgery was officially postponed! Tilly wolfed down a picnic lunch provided by the ward and talked about all the things that she could do now that she was not having surgery, like Brownies, swimming, and the Treetops Santa on the Run event on Sunday. We both had that strange feeling of relief and disappointment, all at once, that you probably only get when a planned operation is cancelled.

As we drove home, Tilly said that she felt ‘Damn Flabbit!” (a Hannah Montana expression) that she’d had all those blood tests for nothing, but now she will not be afraid of a measly little swine flu jab – that would now feel like a doddle! “It’s an ill wind,…” my Mother always says, and she’s right.

We got home, unpacked and rang around everyone re-instating the things that we’d cancelled. Everyone who’d been holding their breath for us now let out cries of frustration for us. All agreed, however, that it just couldn’t be helped.

We trundled off to Brownies and to Tilly’s amusement the activity involved needlework! Brown Owl had carefully prepared Tilly’s activity so that she could sew her own Christmas stocking independently, and she did! It is now filled with chocolates and Nana will be delighted with it as it is all Tilly’s own work. Brown Owl is brilliant!

That night Tilly prayed for everyone in the hospital, especially for the family whose child was too poorly to be moved out of Intensive Care to make room for her. They too are still waiting.

Waiting Room

Rolf and I both feel anxious today as Tilly’s surgery draws ever closer. The waiting is painful and time is passing unusally slowly. Tilly’s blissful ignorance of the whole issue is helpful, but does add an additional pressure as we struggle not to ‘let the cat out of the bag’. Tilly will discover her fate this evening after swimming when we have to go to the hospital for Tilly to have her blood taken for testing. The lengthening of Tilly’s spinal rods is said to be a relatively simple procedure for Mr Ahmed, but it is never an easy experience for us. Tilly will require a general anaesthetic, and that carries risk, especially with her respiratory issues. It does help, however, that we have every faith in the Surgeon and his Team.

Rolf and I are both keeping very busy – Rolf has done the ironing, redecorated Tilly’s room, replaced the central heating pump and is now outside putting up the Christmas lights in the courtyard! Another ‘unsung hero’!

I can’t seem to settle to do anything much, except that I’ve packed a suitcase for Tilly imagining that we might be away for a couple of days, but seriously hoping that we may be home on the actual day. We do have Eileen from the Children’s Airways Support Team doing a ‘night sit’ tomorrow night so that would be very helpful.

We’ll just have to wait and see.

Unsung Heroes

On Friday night we donned our ski-suits and manned the Rudyard Sailability stall with Gary, our Sailing Instructor, at the Ipstones Lights. Geoff Wakefield organises this magical event and invites local charities to come along to raise funds and public awareness. Barbie, the Charity’s finger-tip controlled, non-capsizable dinghy had pride of place and attracted many visitors to learn more about us; to offer their support and to top up our funds. Charlotte Atkins, MP, who is a Rudyard Sailability Trustee, worked enthusiastically alongside us, without a pause for breath! It was a highly successful evening.

The only drawback was that Tilly needed ‘defrosting’ when we got home as the cold had penetrated deep into her body. Tilly's tiny hand was frozen as Tilly does not wear gloves because this makes driving her wheelchair rather problematic. Next year I will take some hot water bottles, and keep a closer eye on her. Tilly always just smiles and says she’s fine!

Charlotte Atkins (MP) reported that she had had a very positive meeting with the Minister and the Rudyard Sailability's representatives in London. A meeting with an independent mediator, who will negotiate with all parties, will be arranged as soon as possible. Time is certainly of the essence as our current store is to be demolished in February next year. There were plenty of volunteers in Ipstones offering to block the path of the bulldozer! I really hope it does not come to that!

On Saturday morning I managed to get Tilly almost into the Doctor’s surgery, on the pretence of collecting a prescription, before she asked in horror, “Are you taking me for my swine flu jab?” Needles terrify Tilly and Rolf and I had been fretting about taking her for days. Tilly’s screams were ear-splitting before it was done, and then, once it was over, she stopped and smiled and asked “Was I good?” I told she was brilliant! The GP will have three weeks to recover from her shattered ear drum before Tilly is needed to go for the second shot! The only problem is that Tilly is aware of the need for another jab, and she is already worrying about it!

Tilly does not know that she is scheduled to have her surgery to lengthen her spinal rods on Wednesday. We have arranged to take her to have her blood tests on Tuesday evening after swimming and return with her the next morning for her operation. We have told her in the past and Tilly always gets really distressed with terrifying nightmares. Then, if the surgery is cancelled, Tilly is then sad because ‘it would be all over by now,’. Either way, we can’t really win, so this time we have decided not to tell her until Tuesday evening. My stomach is in a knot and I can’t really think of anything else. Roll on Thursday!

Saturday afternoon saw the entire Griffiths’ Clan suitably attired in festive garb to take part in the Winterton’s 26th Annual Cheddleton Pudding Race to raise funds for Cancer Research. Traditionally we do the two miles Fun Run, which is still quite a challenge with long steep hills on the circuit. It was a terrific event with lots of entrants, kind weather and a plum pudding for all finishers. Another sign that Christmas is well and truly on the way, and I’ve done nothing as yet!

Saturday night we were privileged to be invited to a concert by a remarkable group of singers and musicians called “Sounds of Music”. This wonderful group of people have been giving concerts for years, without charge, and collecting any donations for charity. Over the years they have raised £36,000 and supported a wide range of local charitable organisations every time they’ve reached £1000. This time they had chosen The Donna Louise Trust, the local hospice, Treetops that we are lucky enough to attend. It was pure pleasure to be entertained by these singing heroes, and an honour to accept their generous donation on behalf of Treetops. It was also lovely to be out ‘as a proper family for once’!

On Sunday Candice, Tilly and I made the two hour journey to Warwick Castle to meet up with a very special friend and four of her children. They had journeyed up from Windsor, and Warwick is about same distance from either of us. We enjoyed a wonderful picnic ‘al fresco’ wrapped in rugs, beside a beautiful garden, serenaded by peacocks. We all then trooped off to the Princess Tower only to be told that my little Princess, ‘in her own carriage’ would not be able to join the party as there was no wheelchair access and the stairs too perilous to attempt to carry Tilly. They were very sorry, but the building was too old to be accessible! The rain was lashing down and with tears burning in my eyes, we sent the ambulant princesses (and one prince) off to the tower and Tilly and I retreated from the deluge to the dry conservatory for a sit on the warm radiators and a packet of chocolate buttons!

I cuddled Tilly close in the tropical glasshouse. Tilly smiled and said that she’d much rather have hugs with Mummy than see the Princesses. I thought my heart would break. I wondered what I would have done if she’d been a couple of years younger when Princesses were ‘real’ and very important in her life. I'd have had to put a call out to Rapunzel!

We decided that we would try and visit the ‘Royal Party Weekend’ attraction, where we could see the twinkling of Christmas tree lights and hear carols being performed. However, there was a flight of steps between us and the festivities. Fortunately I had taken along Tilly’s ‘All-terrain’ buggy and the Attendants agreed that I could carry Tilly up the stairs and take her around the ground floor, so long as it was not too busy! At the bottom of the steps sat a Mummy in her wheelchair looking woefully up at the 'North face of the Eiger'. I offered to help to carry her up, but she declined dejectedly knowing that it would not be safe. Her children and mother helped carry Tilly in her buggy up the stone steps with me, and we all entered the attraction leaving the Mummy alone in the cold. The Attendants were sympathetic and repeated that the building is just too old and it would be against Health and Safety to allow wheelchairs inside, especially when it is busy, which is usually when it is raining.

The inside of the Castle was splendid and very festive. Tilly hated being pushed around in her buggy and I couldn’t get the Mummy’s philosophical expression out of my head. I wondered if the organisers at Warwick Castle had really embraced the challenges of wheelchair users, and wondered if there was anything further that they could do.

Today I received information about an amazing wheelchair lift that places like Warwick Castle might consider.
http://www.youtube.com/watch?v=WPxTGoZr8o0

We certainly tried not to let the access problems spoil our special day, but it did mean that our day was eaten into and we were forced to spend much of the precious four hours we had in different places. I guess we’ll find another location for our next reunion.

We battled the rain and traffic and made it home safely in time for our Thanksgiving ‘tea like a proper family for once’. The turkey and roasted sweet potatoes were delicious and we gave thanks for all our blessings.

Dancing on Air!

Tilly’s Physiotherapist managed to work her magic and Tilly was invited to see the Podiatrist as he had had a cancellation. It meant calling Rolf into the equation, so that Tilly could still go swimming and I could do my “Talk” to the Health Visitors and School Nurses. Everything was possible with just minutes to spare.

Tilly had a splendid swimming session with her class, without a hitch and without her parents. I’m still beaming at that achievement which sounds so simple, but has taken years and careful management to pull off.

I was whizzed up to do my Talk by Jenny, from Special Matters Support Group for families with children with disabilities. It is so important to us that Special Matters are still part of the project to enhance and improve the role of the Health Visitor and School Nurse when they are working with families with disabilities. ‘Working in Partnership’ has become rather a worn out phrase lately, but to see it in working successfully in action is worth striving for.

My input seemed well received as I compared the journey of families at the time of diagnosis to a re-routed flight from the anticipated ‘Italy’ to the unscheduled ‘Holland’. Following a previous remark that ‘Middle-class and Professional’ families don’t really ‘suffer’, I explained at this meeting that these ‘flights’ are filled with all families from all cultures and backgrounds, and that even health professionals sometimes find themselves on this route and they too will struggle, in spite of their experience and training. It should never be assumed that families are coping because they are working. There were many nods of agreement in the audience.

I bailed out of that meeting and was scooped up by Rolf and Tilly to meet Tilly’s new podiatrist because Tilly’s current foot splints are causing more harm than good. The view was that Tilly’s feet are really ‘on the move’ and will probably need surgical intervention at some point down the road. Tilly was cast for inner-soles to try and prevent too much further damage, and it was recommended that Tilly be recast for some better splints. We will try and arrange for this to be done at Oswestry if possible as we have lost confidence in the local department.

The highest highlight of the day was that Tilly needed to go out and buy some supportive boots that would hold her feet until the inner-soles are ready. The greatest joy for this little ‘shoe-aholic’ was to enter a real shoe shop and slide her little feet into real boots – not orthopaedic ones, or big ones that fit over her splints. The ladies in the shops were so accommodating and shared our delight as Tilly’s delight exuded from every pore. We found a pair that she loved that fitted her like a glove.

Tilly danced all the way back to school feeling a million dollars!

Yes, Minister?

I'm waiting with bated breath to hear the outcome of a meeting that was arranged by Charlotte Atkins (MP) with a Government Minister and Rudyard Sailability. Charlotte Atkins is a Trustee of the Chairity, and has been an active supporter of the Club for many years, not only at the Lake, but in our five year battle to obtain planning permission for a building to support our activities.

The Charity's Chairman and Legal Representative travelled to London yesterday to meet with our local MP and Huw Irranca-Davies to explore the possibilities of British Waterways coming to our aid. Rudyard Sailability are hoping to build an accessible boat store at Rudyard Lake, but needs a lease from British Waterways before work can begin. If work does not begin then our current storage facility will be demolished, and so will the opportunities and dreams of many who live with disability.

On a personal note, Tilly's dreams of Olympic Gold in sailing are starting to fade. The clock is ticking. I'm praying for a miracle.

Float like a Butterfly

My lovely Mum treated us to tickets to see Chitty Chitty Bang Bang. Our spirits rose with the magical car and we were all transported into the fantasy land created by Ian Fleming, also the author of so many 007 novels. We all thoroughly enjoyed this theatrical adventure and the girls were fascinated that Fleming wrote the story for his son who had asked his father if he loved James Bond more than he loved him, because he spent so much time talking about him. A ‘word to the wise’, I feel, as Tilly’s name features heavily in all of our conversations, and this will be bound to have an effect on Candice.

Rolf and I always strive to ensure that all of Candice’s needs are fully met, but I have noticed during this very busy week that she has not managed to fulfil all of her homework tasks and would probably benefit from a little more support. We all have such busy lives, so we must carve out a bit of extra time for Candice so that she does not feel overlooked or overwhelmed.

Rolf went to check on the ‘pool’ mini-bus that is used by local education providers to ensure that Tilly can access it for her trip out with the school on Friday. It all looked quite promising except that the ‘tying-down’ straps were missing and the battery was flat! Accessible transport seems to be a perennial problem, and a potential barrier for inclusion. Although I have every faith in the Junior High School, we’ll keep our fingers crossed for Friday! (Rolf and I will keep ourselves free – ‘just in case’)!

Swimming this week at Horton Lodge Special School was ‘poetry’. Tilly has been swimming twice a week with a supportive neck collar for nine years. At the end of some sessions Tilly has managed to float, without her collar, with a look of sheer terror on her panic-stricken face, squealing “Get me up!” This week something changed and Tilly relaxed and believed that the water would hold her. Tilly smiled and moved her little arms like beautiful butterfly wings. “I’m swimming!” she cried. We all cried too. I never believed that Tilly would ever be able to achieve this, and I don’t think Tilly did either.

Tilly’s early morning ballet lesson with Candice and Miss Jeanette was lovely, but seeing Tilly in her dancing harness highlighted the fact that her right leg is longer than her left and that her feet are nearly turning over. We have been increasingly worried about the state of Tilly’s feet and the fact that she is unable to tolerate wearing the splints that should help correct these deformities. Tilly will wear them until she is close to tears with the pain as they seem to be ‘chewing her feet’.

Tilly was seen at school by her Community Physiotherapist who has been with Tilly since Tilly was a baby. Every now and then, in our ‘parallel existence’, there comes along a person ‘who really gets it’; a person who will most certainly go the extra mile (with a grand piano on their back if need be), who can be sympathetic and enthusiastic, all at the same time. We have been extremely blessed to have had such a person as a Physiotherapist for Tilly. However, this meeting was to officially hand over Tilly’s care to the new Physiotherapist, as our ‘Superstar’ is retiring. We have every confidence in our new therapist, and although we shall miss Elaine, we believe our paths will continue to cross. It’s not surprising that as parents we can develop such deep admiration for professionals caring for our children, as quite literally, ‘they have our futures in their hands.’ We have been in very safe hands.

Tilly’s Physiotherapist assessment was a story of two halves. First the euphoria of Tilly’s swimming achievement; the marvelling at Tilly’s arm supports; Tilly’s successful inclusion into the school and then the second half. They recommended that Tilly be seen by an Orthopaedic Surgeon who may consider a procedure to correct Tilly’s leg-length discrepancy. They also made a few suggestions to improve Tilly’s posture in her wheelchair as Tilly is now leaning badly to her left hand side. The sting in the tail was that both Physiotherapists agreed that Tilly’s wretched splints that she has been enduring for months were actually causing more harm than good. They advised Tilly not to wear them again, and have arranged for Tilly to see a different foot specialist, with a view to possible surgery later down the line. With a mixture of heartbreak and outrage, I gathered up the plastic monstrosities and rammed them into a bag just wondering where I could possibly ‘shove them’!

I caught sight of Tilly dancing out of the room, thrilled that her cruel splints that she has tried to tolerate for twenty four hours a day, ever since she can remember, were to be condemned to oblivion. Tilly floated out of the assessment, dreaming of the shoes that she would now be able to wear now that she was free of the plastic boots that have imprisoned her feet for years. I smiled again. That’s my butterfly!

Welcome Week-end

I always get a “Friday Feeling” even though I don’t have a regular weekday job, and last Friday was extra special because we had extra special visitors. Rolf’s brother, his wife and their two-and-a-half year old grand-daughter came down from Yorkshire to deliver Christmas gifts and have a catch-up. It was heaven! It was great to see Rolf chatting with his brother, and I certainly value the sincere friendship and understanding of my sister-in-law. I so wish that we lived closer to our families as they are wonderful friends.

After Chess and swimming on Friday we rushed home to meet Sue from the Children’s Airways Support Team who had come to be with the girls whilst Rolf and I went out to dinner with friends. The girls were thrilled to spot their friend Natasha Wood doing a Fame number for Children in Need. Natasha is a great role model for us as she lives with SMA and is a successful ‘sit-down, roll-on’ comedian, who also presents on The One Show. People like Natasha are beacons showing us the way.

Unfortunately, Rolf did not feel equal to socialising and decided to stay home with the girls and Sue. My hectic schedule of the week had rendered him rather downhearted. It made me feel very low as life loses its sparkle if Daddy is down.

My beautiful friends scooped me up and I was welcomed into their warm, candle-lit home and served the most delicious supper with fine wines. We had weeks of news to catch up on and the hours rushed by. I was delivered home at midnight with the girls all safely tucked up in bed and Rolf waiting up. I had had a perfect evening; all that was missing was Rolf. I missed him.

Saturday was a special treat for Candice. The Treetops’ Sibling Group had arranged a day out for a group of youngsters whose brother or sister is a user of the Donna Louise Hospice. They went to the cinema, then to Frankie and Bennies for lunch and then bowling. Even more special, it was a reunion for the group who had been to the Children’s Adventure Farm Trust Holiday that had been arranged by the Hospice. Candice was thrilled and had been looking forward to this day for ages.

It is so heartening that places like Treetops take such care of these children as the journey that a sibling takes through the ‘World of Special Needs’ can be extremely hazardous. For a long time Candice wished that she too could have Tilly’s condition, longed for a wheelchair and stays in hospital with Mummy. Candice has long since passed this stage, but does have a carer’s role at home attending to many of Tilly’s needs, and she does notice that people often speak to Tilly and ignore her. We do talk about the situation and ensure that Candice has lots of activities in her own right, and we try not to overload her with Tilly’s care. We also look on the bright side and say what an interesting life that we do have with Tilly. However, it is a serious issue and we are very lucky that we have Rolf to keep an eye on all of Candice’s needs whilst Tilly and I may be out of the picture. “That’s what Daddies are for” is how Rolf sees it.

Tilly spent all of Saturday in the company of her beloved Hannah Montana, watching endless repeats of her favourite programmes. It was good to see Tilly taking it easy for a change, giving herself time to get over her slight cold. Tilly did, however, have an unexpected significant choking episode which required use of her cough machine and suction unit. I shuddered at the thought of being on the coach last week for six hours without any such support, and wondered how we would have coped. I offered up a prayer of thanks.

Saturday night saw the welcome return of ‘tea, like a proper family for once’, with ‘Strictly’ and ‘X Factor’. More importantly Rolf’s gloom had lifted, and Daddy was back! The chicken fajitas were excellent and the impressions sublime. A sense of tranquillity, within the chaos, had returned chez Tilly.

Sunday was a lovely lazy day made up of going to Church, piano and making the Christmas pudding. The girls love this job. This year Tilly used her arm supports to stir the mixture which was super. The girls spent the rest of the day writing their Christmas list for Santa and made a start on their Christmas cards. They are both now starting to feel more ‘Christmassy’. I guess Rolf and I must now make a start!

Rolf’s Sunday Roast was the toast of the evening, along with the news that Jedward had been voted off ‘X Factor’!

Overload

It’s been an exceptionally busy week because on top of the usual activities there has been a Safer Recruitment course, two Governors’ meetings and my ‘Talk’ to deliver.

I am more than aware of the pressure that this puts on Rolf as he is left alone ‘holding the fort’ whilst I am away from base talking ‘blah, blah’ which wont change the world and certainly wont change the beds at the B&B that we run! I can understand his displeasure when the diary becomes overloaded with Mummy’s meetings, and so appreciate his forbearance and support. Like a lot of fathers in his position, Rolf does not wish to be ‘engaged’ in strategies and considers that most consultations and committees are a waste of time. Rolf prefers to identify a problem and then solve it, without an agenda, or minutes or any other business. The male population in the world of special needs is astonishingly sparse as couples very often break up. The drive is forever to ‘bring these men to the table’, and I wish them luck, but feel that Rolf would rather eat a table that gather around one!

Notwithstanding Rolf’s mounting gloom at my engagements, I was whisked away to Tamworth to do my ‘Talk’ at the launch of the Parenting Strategy. During the journey I became increasingly troubled at Rolf’s lack of joy and knew only too well that I was causing his sadness. I missed his impersonations and one-liners and felt torn between helping the ‘cause’ and being ‘there’ for Rolf. Parenting is not easy in the best of times. The situation gave great resonance to one of the images during my presentation of Rolf feeling like his plane crash-landed into Holland (the world of special needs) and he would rather stay in the wreckage than face the challenges of this new destination.

I was congratulated on my presentation by one of the many ‘parenting professionals’ present, then quite shocked when she said that she’d feared the worst at first and wondered why they’d dragged up a “Middle-Class Mother” who knew nothing about the real world of parenting! Almost speechless at her pre-judgement I felt myself covered in embarrassment and explaining that if I had found parenting a child with additional needs difficult, then perhaps it might be even more difficult if literacy or communication is an issue. It has saddened me that such judgements could exist in the ‘caring community’ as the challenges of parenthood know no economic, social or emotional bounds.

I must remember to add this fact to my next presentation.

Risk Management

We were treated to a visit from Becky Wood, the Reporter from BBC Radio Stoke who is following our family over the next few months. Becky fills the room with enthusiasm for her work, and is such a shining star for our girls. Tilly gave her own interview with growing confidence. I find it hard to believe that this is the same little girl who hardly ever spoke a word in her first school.

We enjoyed our weekly swim in the warm waters of Horton Lodge Special School where Tilly belongs to a Club of youngsters with disabilities who have been included into the mainstream educational system, and might be missing out on physiotherapy. It’s also a chance to ‘exchange notes’ and we were able to tell another family about all the respiratory equipment that Tilly has to manage her condition. A young lady has been fighting off a chest infection for over five weeks and might benefit from some of the machines that Tilly relies upon. There doesn’t seem to be parity of allocation of therapies for the same condition, but of course, I do not have the ‘global overview’.

As part of School Governor training I attended a course on “Safer Recruitment” which gives guidelines on keeping our children safe from a range of dangers. It was very interesting, distressing and useful. It was also a good arena to throw light on a daily activity that is loaded with potential risk that I’ve been anxious about for ages. Every day hundreds of children across the county are bussed into school on large coaches with one driver and no escort. The children do not wear their seat belts; they move around the bus at will and can be left alone with a driver who has not had a CRB check. It was decided at this course that we would band together and make a case to the Local Authority so that children can be supervised on their journey to and from school. It makes a mockery of all the other safeguarding measures and risk assessments within school if our children are not being adequately protected at either side of the day. I’m hoping for action before it’s too late.

Unfortunately I was called away from this course during the morning as the school rang to say that Tilly was not feeling very well. Tilly had had such late nights at Brownie Camp, then the early starts for her MRI scan and ballet, and now she looked as if she might be coming down with a cold. We spent the day working through all of Tilly’s respiratory therapies, started the anti-biotics, and snuggled her on the couch for a snooze. We seem to do better attacking Tilly’s colds right at the beginning, rather than letting them develop into a more serious chest infection.

Miraculously, Tilly woke up feeling back to normal following a long, settled night’s sleep. I heaved a cautious sigh of relief and Tilly returned to school, albeit without joining the class for swimming. There is just no knowing where the slightest sniffle will end with Tilly, and we have certainly ended up in some really scary places. Tilly’s chest weakness means that the slightest cold can quickly turn into a sinister respiratory failure.

Life's about managing the risks.

MRI R OK!

An appointment for an MRI scan to try and find the cause of Tilly’s vertigo was arranged for 0855 the morning after camp. I dragged an exhausted Tilly out of bed, battled even more rain, struggled to park the van and arrived right on time, but unfortunately, at the wrong location!
Knowing that we were bounced out of Orthotics for being a few minutes late during the half term, and appreciating that MRI scans are part of acute medicine, I felt my knees buckle. I’d done it again! I’d let Tilly down and she would have to be seen at a later date! I felt close to tears when the delightful reception staff told me that many people make the same mistake; that they would call the MRI Team and that ‘of course they’d still see Tilly’. I couldn’t believe my ears, and we dashed away, back into the rain, back into the van and battled once more to find a car parking spot at the other location. We were greeted with kindness and care and invited to pop to the café whilst they rescheduled Tilly’s scan. It meant so much to us to be so gently managed as we were both in a bit of a state by now with the mix-up and also worried about the actual scan.

Tilly was terrified, but they had made a decision not to give her a general anaesthetic as they hoped she would be able to remain calm and still. Tilly’s stress levels were climbing when she was put into the care of the most remarkable man. He listened to her fears and reassured her that there was nothing that would hurt, but she would just need to cope with the loud noises and remain still.

I lay Tilly on the ‘ironing board’, and they pulled the ‘bird cage’ over her head. Tilly was still very afraid. She was given some earphones to muffle the sound of the scanner. Tilly was moved gently backwards into the open mouth of the big ‘tumble drier’ and the process was started when Tilly said she was ready. My heart broke as I saw her battling her fears and trying to be as brave as she could. Little tears rolled down her cheeks and I could not reach in to dry them. I felt helpless and so inspired by my courageous little girl.

The whole experience took about twenty minutes during which time the Radiographer spoke gently to Tilly and verbally carried her through without a hitch. He gave her an 'MRI Superstar sticker' which she proudly displayed on her armrest.

On the way out we called in at the PALS office (Patient Advice and Liaison Service) to report how understanding and caring everyone in the MRI Department had been. Tilly skipped out saying that she wouldn’t be scared next time. What more can we ask?

Treasure Island

We survived the night being tossed on the high seas in our pirate ship. Our static caravan had coped with the 80 mph winds admirably. We donned our bandanas and sailed through the puddles, battered by the wind and torrential rain, to muster in the Camp’s Theatre. The room was filled with Brownies all brimming with excitement and beaming at the Leaders dressed in their Pirate garb, one complete with a parrot on their shoulder. We heard that the bonfire was sodden; the fields were water-logged; the golf course was flooded; the paddle-boats submerged and the ceiling of the Bonga-Wonga had fallen in. Were we down-hearted? Of course not! Contingency plans were in place and everyone was going to have a wonderful time.

Amazingly, we did! The week-end was filled with activities, games, competitions, singing, dancing, and entertainment. The Guiding Association had ensured that Tilly, and other Brownies with any additional need, could access all of the fun. No one was left out. The Saturday night party was a highlight with everyone dressing the part. Our Brown Owl was one of the shining stars as she came as Captain Hook, complete with curly black wig, hook and crocodile! Tilly danced herself dizzy and even needed a top-up of power for her electric wheelchair.

On Sunday, following a swimming session, we found ourselves on the beach in the sunshine. We had taken Tilly’s “All-terrain” buggy, and with the help of Brown Owl Tilly dipped her wheels in the sea! Having spent most of my childhood on Barry Island, and now living in land-locked Staffordshire, there is something quite magical about being on a beach. The Brownies’ shrieks of joy mingled with the cries of the gulls and the rush of the waves. We’d landed on Treasure Island!

The journey home was painless and relaxed as one of the Leader’s husbands had brought along a functional suction unit to keep Tilly safe from choking should she succumb to travel sickness. This wonderful gentleman also transported Tilly’s additional equipment home again making all the difference to our load. All of our needs were addressed at every turn, and it felt really good.

Winding our way back home through the dark majestic countryside I contemplated how much work these amazing people had put in to make the Brownie’s Treasure Island Camp such an astounding success. I marvelled at their devotion, commitment and care. I’d had no real idea before of how much these inspiring volunteers give. It was a privilege to be part of such an adventure.

During the Camp I was honoured to receive a badge to become a Guiding Ambassador. I accept the role with genuine relish and sincerely hope that I have managed to convey how brilliant I think they all are.

The Adventure Begins.

The end of last week was taken up with preparation for Tilly's Brownie Pirate Camp, sprinkled with a visit from two student Doctors and a Performance Management Meeting for the Head Teacher of the girls' First School. Half way through the first meeting, one of the Students checked if Tilly actually uses a wheelchair as the description of her activities suggested she did not! A good sign! The Head Teacher of the First School is doing a fantastic job which made our job, as Governors, very easy and satisfying. Their inclusion of Tilly was exemplary, and set a very high standard for others to follow.

An advance party arrived on Friday to collect up Tilly's equipment for camp, leaving Tilly to travel with just with a suitcase and the 'all important' Suction Unit to rescue her from any respiratory crisis. An invaluable tool that we are never without. The threatened bad weather was building up as we boarded the coach and Tilly was delighted to find the designated wheelchair place towards the front of the vehicle instead of right at the back. With willing helpful hands from the Leaders we carefully moved Tilly over to a seat as a three hour journey was anticipated. Tilly was very chuffed, and I was heartened by the spontaneous, genuine support.

The driver need to go across country as the main roads were snarled up and we found ourselves twisting and winding through the blackness, rain beating hard against the windows. Tilly went green and I reached for the trusty suction unit and to my absolute horror, the battery was dead and the machine was useless. Memories of Tilly choking leading to an 'aspirated pneumonia' came flooding back. Tilly closed her eyes and I started to pray. Every minute seemed to last an anxious hour, and because of a fault on another coach, our three hour journey actually took six!

Our prayers were answered and we eventually arrived safely and were delivered to our beautiful accessible caravan during a lull in the storm. It was now approaching midnight and our beds were calling. Just time for one more 'Hamlet Cigar' moment when Tilly was unable to get into the accommodation. The ramped access did not include enough space for a wheelchair turn. With minute manoeuvres Tilly inched herself around and I lifted her chair over the step! The torrential rain had the good grace to hold off in time for us to shut the door and brace ourselves for the stormy night ahead.

Tilly and I shared our caravan with two delightful Brownies and Snowy Owl, a Leader. We were snug and cosy and quickly made ourselves at home. Whilst planning the next day we enjoyed hot chocolate and biscuits which was a great treat for the Brownies as it was now midnight! Once the girls were settled, Snowy Owl and I chinked on a sweet vermouth and lime that Rolf had secreted into my luggage! Promote that Man!

As the tempest raged and the caravan rocked like a ship being tossed on a stormy sea, I began to marvel at the incredible gift that the Guiding Association gives, and of all the work that they had put in to this trip. They give so much of themselves voluntarily and make such a difference to so many young people's lives. Quite remarkable and uplifting to see it in action. It felt good to be safe and warm with such a special people at the start of our exciting Brownie Adventure. Just hoped that we wouldn't actually break our mooring and be washed away.

Mission Accomplished!

On Tuesday I had the pleasure of doing my "Talk" to a group of Health Visitors and School Nurses. For over six years, with Special Matters, I have been involved in a project aimed at 'shaping' their roles in relation to families such as ours, and this meeting was part of a relaunch. I sincerely believe that they have a key role to play and can significantly influence the outcomes of children with special needs. My role was to remind them of what parents and carers experience and what they need to help them on their journey through the parallel universe of disability. It really does feel good to talk to people working on the front line, and to feel that what I am saying will actually be translated into practice and will make a difference.

We had a frantic rush from swimming on Tuesday evening as I had to get Tilly home and be back at the school for Tilly's Parents' Evening. Ellen saved the day, once more, and took control of all of Tilly's needs, including a having her hair curled, whilst I was away.

The news from school was all positive. In spite of Tilly's 67 per cent attendance, she has managed to be a high achiever. Her class teacher said that she can ask no more of Tilly as she works hard, plays hard and never stops smiling. I am immeasurably proud of St Edward's Junior High - they are exemplary in their approach to Tilly's inclusion, and I am immeasurably proud of my little girl.

Wednesday morning was an early start with Tilly's dancing lesson with Miss Jeanette at the school at 0815. It was a lovely lesson with Candice supporting Tilly and being just so beautiful and caring. I am unashamedly, immeasurably proud of Candice.

I was set on the loose in Primarni with the task of buying Tilly a 'piratey' striped t-shirt and wellies. Couldn't find the wellies, but came home with a bag full of goodies for the Brownie holiday. Tilly raved at my purchases and decided that Mum had 'done good'! Quite lucky really as Tilly has become very discerning about what she will and wont wear.

Had a great chat with Annabel from Rackety's, and felt really tempted to take on the job vacancy she has for three hours a day, five days a week. It would be working in a field that inspires me, and I adore Annabel, and the hours could be as flexible as I needed. A chat with Rolf brought me back to earth as taking on any sort of employment would not be fair on the employer at this stage, as I am so very often taken out of the picture. Working for ourselves at the B&B is the ideal for us, as I can opt in and out as required. We are very lucky, there are many carers who are forced to leave careers which must be difficult. Volunteering is often the only way to engage with employment.

Brownies was fever-pitch on Wednesday evening with Brown Owl giving the final instructions before Camp on Friday. Pauline had stayed with Tilly for the session so that I could get on with the packing, and we both marvelled at the wonderful contribution these Leaders make for our children, voluntarily! The paperwork, with added Health and Safety regulations, is huge and the responsibility quite daunting. I take my hat off to them! I'm sure they'll all be mightily relieved when they settle down to recover on Sunday evening.

Today I took Tilly to school and dropped her off to go swimming. I was not required in any way at all, either with transport, dressing, transferring, swimming or anything. The school has pulled it off! Tilly goes swimming with school, without her Mum! The school Special Educational Needs Coordinator, the District Coordinator and the County Swimming Authority have been working on this since July. Tilly had a terrific time in the pool. Time to remove my hat one more time with feeling! They did not give in.

Mission Accomplished!

Memories

Tilly spent the rest of Monday afternoon patiently posing as part of the festive photo session. I gave the journalist an update of Tilly's activities and future plans and felt pleased that the magazine seemed so genuinely pleased to be able to portray the positive side of Tilly's story.

Leaving the building took some planning. Tilly did not feel comfortable to reverse her chair along two narrow ramps, down the six deep steps to the pavement, and I was sure that my heart would not last the operation. It reminded me a bit of Tilly abseiling, but without the ropes. Instead, I lifted onto a chair, and she was supported by one of the Team. Tilly's chair was put into 'manual-mode' and three of us guided this twenty stone, twenty thousand pounds worth of life-changing equipment, backwards down what felt like a black run! Mission accomplished, I galloped up the steps and collected Tilly and carefully carried her down, a step at a time, with the photographer guiding my footwork. It was good to see Tilly safely in her seat, and racing off to the bus stop! I really did feel genuinely cared for by the Full House folk, they seemed so moved by her determined spirit and sunny nature. I am sure they will not forget her in a hurry, and I know that we will always remember them.

Tilly delighted once again in hopping on and off the buses as we made our way back to Euston. We arrived at 4.30 pm and had been informed that we were unable to travel until 7.00 pm as our tickets only covered 'off-peak' travel. Wondering how we would spend the hours waiting I returned to the Guest Services Office that had so disappointed us earlier in the day. What a difference half a day makes! The charming official checked our tickets, inspected our Family Rail Card, and invited us to join the 1700 train. He assured us that he'd have the ramps ready for us and told us we even had plenty of time to go and collect Tilly her much-desired Burger King meal. Astonishing! This peak-time train was empty as it costs a premium. I picked Tilly out of her chair and she sat on the seat of the train beside me, munching on her tea and unwrapping all the Christmas presents that Full House had given her. Such a happy little girl. The compartment was hardly big enough for her smile.

Memories are made of this.

Remembrance

The week-end got off to a super start with swimming on Friday evening at Brough Park with Tilly's private teacher, Louise. It was during this session that I realised, once again, that I have a shocking sense of time and my personal management is in serious need of help! Earlier in the week I recklessly promised our support at the School Christmas Fayre, when I should be on the bus to Pwlleli for Tilly's Brownie Camp!

Ellen came along at the end of the lesson to help get Tilly showered and dressed, even though her Father was taken into hospital. Ellen didn't want to let us down! A real Star!

Saturday morning saw Candice spirited away to take part in a Cross Country Race with School, and Tilly and I went to help out at the Church Autumn Fayre. We had a real hoot and managed to make some much needed funds for St Edward's Cheddleton. Candice joined us for lunch after her race and then Candice and I actually picked out our own raffle tickets, so we should really have stopped off for a lottery ticket, but we'd spent up on the Tombola!


Saturday Night was the Griffiths' Bonfire Party and this year was the best yet. Rolf takes care of the fire and fireworks and normally Tilly and I watch through the window - but this year we opened the patio doors and had our hot-dogs and loaded skins inside, but beside the fire. As the evening progressed and Tilly's confidence grew I heard her squeal "I actually had one wheel outside for that rocket!" By the end of our special evening Tilly was outside in the dark, under the stars holding a sparkler. Magic. I know that there are a lot of people who do not like bonfire night, but it is true to say that Tilly has an increased sense of fear by virtue of the fact that she is unable to protect herself, run away, turn her head, cover her face, etc. So to see her so happy and comfortable on bonfire night was a real treat.

It will also be a treat when the smell of smoke leaves Tilly's room. I guess that will only happen when we wash the curtains. Rolf is currently redecorating Tilly's room so he will attend to that job when he paints the walls during Brownie Camp. What would we do without him?

Sunday was the usual mad dash down to Fleur's for piano lessons. Then we came back to pick up Daddy for the Rememberance Service. This service really means a lot to me as it evokes strong memories of my Father who served in the Royal Navy during the Second World War, and also because hardly a day goes by that we do not hear about yet another fallen solider. It was especially memorable this year because Candice, as a Guide, carried the Union Flag proudly up the aisle to the Alter, followed by Tilly who carried the Standard for the Brownies. It was a very moving and Rolf and I felt very proud. My Dad would have been very proud too.

Sunday afternoon was heavenly as we all stayed in and tried to catch up on ourselves and prepare for the week ahead. We still need a piratety striped tee shirt and wellies for Tilly's trip - but other than that - all is in hand. We finished the week end with a delicious 'Rolfie Roast' that left us feeling very blessed. We 'whizzled' through Strictly and X Factor and the the result left us feeling very perplexed.

Monday dawned with a new adventure for Tilly as she was invited down to London for a 'photo-shoot' for Full House magazine as part of their "Twelve Children of Christmas" feature. The invitation had come just as Tilly had missed her scheduled visit to No. 10, and I thought it would be a lovely boost and special treat for her. It was! Our faithful taxi driver, Nigel, turned up ahead of time and got us prompty to Stoke Station. All tickets purchased and reservations made all we had to do was relax and enjoy the ride! However, Tilly's wheelchair space had not been registered and there was now a chance that she could not travel! Relaxing cappucchino put on hold while we anxiously wait on the platform and, as luck would have it, the wheelchair space was free and Tilly drove aboard. All arrangements were made for arrival at Euston, but we were told we would have to reserve a wheelchair space for Tilly for the return journey at the Guest Services at the station. The train journey was brilliant, filled with endless Hannah Montana quizzes with Tilly finishing her packed lunch before we got to Birmingham!

At Euston we were informed that we needed at least 24 hours to book a wheelchair space and that one could not now be guaranteed for our journey home. I explained that we had actually booked the space, in person, with Tilly on 29th October at Stoke, but it had not been actioned by the clerk. I was told that Tilly had to report thirty minutes before departure to this office and they would do their best. I explained that Tilly could make her own way to the platform and only needed the ramps, but it was chorused at me in stereo by both operatives that everyone who needs assistance has to check in half an hour ahead of the departure time! This does not sound like equality of opportunty to me, but I agreed to go along with it and just prayed that there would be space on the 7pm train home, and tried not to let it spoil the day.


Outside of Euston we were faced with flights of steps to reach the Bus Station. Two workmen ran to each end of the concourse to find which way we should go. They even offered to lift Tilly down the steps. I was touched by thier willingness to help. Having discovered the wheelchair route we were thrilled to 'hop' onto our first London bus of the day. So easy. The driver send out a ramp to the pavement. Passangers scattle like skittles to make way for Tilly. Tilly gets on to her space - no clamps or belts - the ramp is retrieved and we're off! Tilly's joy and my amazement at this simple exercise is beyond words. No need to book 24 hours ahead or wait an extra 30 minutes before departure! Tilly can get on and off every London bus that comes along. Progress!

We strolled in the Captial's sunshine down to the Studio to be met by a delightful member of the magazine, and a flight of 6 stairs! Not too daunted, Tilly mountaineered up with three of us guides and helping. My heart was in my mouth. Following a couple more little steps, we found ourselves in the company of other families and a very welcoming Full House Crew.

Tilly was given her outfit and we found a suitable spot to change when all of a sudden I saw Tilly driving toward another little step that she'd obviously not noticed. It all then went into cinematic slow motion as I could hear myself scream her name and see her being flung forward like a rag doll with the back of the chair leaving the ground. I thought the whole thing was going to go over and crush her. I obviously leapt to try and grab her from the back, but she was already down like a spent Jack in the Box, so I tried to get to the front of the her. The posh high heeled boots that I'd foolishly chosen had other ideas, and I was reduced to the cartoon character running in vain on ice, and getting nowhere. I lunged at Tilly and landed on my knees on her footplates, and managed to lift her and the chair back to upright. We were both shaking and shocked. Tilly's spinal rods were all I could think of. Were they still intact? After a few anxious minutes for all concerned it became clear that Tilly was not injured and was, in fact, ready for her hair and make-up! I needed a stiff drink and a lie down in darkened room! The Full House staff didn't actually stop shaking the whole day and I believe to a deeper insight to the challenges facing families such as ours.

I must now away to Horton Lodge for swimming with Tilly and will finish the rest of Tilly's memorable day out later!

Doing the Right Thing

The second part of this week was relatively easy with the Wednesday evening's Brownies/Guides drop/off, pick/up being pretty painless because I'd been spared any Governor's Meetings or Parish Council Meetings.

Thursday morning Rolf had to go to school and make sure that Tilly's chair could fit into the taxi that would be sent for her to attend swimming with her class. It did fit with a little see-sawing and a gentle push! The school have gone out of their way to ensure that Tilly is fully included, and seem to have been let down every week by the taxi, and so far I have had to do the transport. I certainly don't mind this, but the School are determined to make a plan that will suit all included children, even those whose parents are unable to do the driving. Bravo! Equality in action. Fingers crossed for next week.

I spent the day on "U" bends and on the phone with Rudyard Sailability's Planning Consultant. The two activities are most compatible as I then have time to digest the 'food for thought' delivered by our Expert. Our Charity's campaign has stepped up a gear as the deadline to pull down our boat store gets closer and the necessary lease seems to get further away. We only have until February to find a solution, or pray for the local Council to grant an extension. A good opportunity for them to be seen to be doing the right thing? I'm crossing my fingers again!

Candice's Thursdays are crazy with an after-school sports club, picked up by Daddy with a hot packed tea in the waiting room, whilst doing her maths homework and then
a ballet and tap lesson with our wonderful Miss Jeanette. Needless to say, we postponed 'bonfire night' until the week-end. Tilly came home and spent a lovely relaxing evening with Ellen.

I was blessed with a visit from Michele, the Girls' Godmother. We bacame friends a very long time ago when I moved in with Michele when I was at college in Strawberry Hill, Twickenham. Michele and her husband Mike moved to Staffordshire from Middlesex four years ago to help out with the girls and often step into the breach when we are struggling for inspiration or a spare hand. They're true friends! Last night Michele came bearing terrific tombola items for the first of Festive Fayres that we are down to support over the coming weeks. Our cupboards are just about cleaned out of such goodies, but the girls are both tombola-aholics so once we get going we'll pick up stock for the next one!

I held off unconsciousness long enough to enjoy pizza on the couch, and faded away with that ghastly Hotel Inspector snarling at her quaking prey. We've had lots of fun here at our B&B with the various visits of the dreaded Hotel Inspector, and have actually made that Basil Fawtly mistake of believing that one of our guest was HIM! We roared with laughter when this 'extremely well looked after' gentelman was all but carried to his car, and Rolf spent the whole day saying, "Spoons, eh?" Apart from Rolf's ironing and cooking, his hilarious impressions are one of the many reasons I keep him on!

Friday morning was welcomed as always. We got through the morning routines and Rolf took the girls to school while I caught up on the house. Like most people I love to live in a clean house, but can't seem to find the time to spend on it, and I always seem to have something more important to do. However, today I had to do the right thing and remove the cobwebs and dust that looked like they been especially created for Halloween! Come the revolution - come the cleaner!

Magic

Tuesday night was very 'busy', with Tilly really unsettled and needing lots of visits during the night. I have to try really hard not to become irritated and impatient with Tilly and sometimes, like last night, I fail and am rather 'short' with her. I don't know why I am programmed sometimes to feel like this, because it only serves to upset us both. I so want Tilly to have the benefit of a good night's sleep, and be 'trained' to do so by not indulging her every whim, but, equally I break my heart at the thought of her lying flat on her back, hooked up to machines, hardly able to move a muscle and feeling like she wants to bend her leg; itch her back or throw off a blanket. It's the least I can do to pop down and help her, and try and do it every time with a smile.

I guess I was extra anxious last night because I knew we had to be up extra early today so that Tilly could have a ballet lesson with Miss Jeanette and Candice before school. We raced through the morning routine, cut a few corners, and found ourselves in school for 0800. We collected up the mobile hoist,(which is a bit like a little crane), strapped Tilly into her standing sling, (which is a bit like a pair of neoprene dungarees with straps going up to the crane's cross bar) and crossed our fingers that Tilly could tolerate the sling (which becomes very painful after a while) for the lesson, and that the lesson would finish before the school filed into the hall for Assembly.

Most days Tilly will make a comment that will make me choke, and, of course, today was no exception. As I went to remove her shoes to put on her dancing pumps she said, "No, not yet, let me hear my shoes click-clack on the floor - I've never heard that!" Just like any other little girl, Tilly enjoys not only the look of shoes, but how they sound. I took quite a while digging in her pink ballet bag to find her pumps to the sound of fairy-like click-clacks in the hall.

Our beautiful Miss Jeanette, who has been Tilly's teacher since Tilly was two and a half, arrived and exquisitely led the girls through their steps. It was obviously a 'chokey' sort of a morning as I watched Candice tenderly lifting Tilly's little arms to the correct positions and deftly moving the hoist to Tilly's dainty little steps. Candice really is quite extraordinary. Who would have thought that we'd have two ballerinas in the house? Quite magical really?

Tilly's Teaching Assistant arrived right on cue to help get Tilly out of her 'dancing gear' and back into school mode, just before the advancing Assembly crowds. Mission accomplished! It's great that the school are so supportive and happy to let this activity happen as there isn't another opportunity after school.

My next task was to get home to be picked up by my Special Matters' team so that I could do my 1000 "Talk" for the launch of the Staffordshire Children's Trust new Parenting Strategy. My lift did not arrive until 0930. Nothing like being late for a Presentation to get the stress levels rising. Knowing that I was the first Parent to speak I was rolled out of a moving car at the main entrance, snatched up my obligatory name badge and conference pack at Reception, was informed that the meeting had just started and to turn left at the top of the stairs. Having taken the stairs four at a time, I raced into all the large gatherings of startled BT Employees who were installed in the rooms on the left. I spun to the right and noticed a room number on my name badge so raced off in the opposite direction to find it empty. My heart was racing. I hate being late, and I'm getting really good at it! I practically slid down the banister back to Reception to find another small group of latecomers who also had been barging in to other people's meetings. It was good to find that I was not alone, and we all simultaneously harrumphed about the lack of good signposting. We were ceremoniously escorted to the correct destination to the understandable disapproval of all present. I sat trying to catch my breath, my mouth completely dry, my lips stuck to my teeth and rather in need of a trip to the loo, not least to sort out my hair which now looked like it was on backwards!

It was my turn to speak and I felt dishevelled, exhausted, confused, frustrated, anxious and, all of a sudden, not quite sure what to say. The perfect frame of mind to convey to the assembled "Decision Makers" how most parents feel when faced with their child's serious diagnosis. My brief was "Why are Parents Important?". My message was that services need to support vulnerable parents because their children are blissfully unaware of the adult world of limitations and barriers being faced by their carers, Most children believe that parents are actually on this planet to provide them with a happy, safe and magical childhood. Most parents believe this too. The trick would be for all services to support families, to work some magic, and give all parents the power to achieve this goal.

Routine routines

The alarm went off at 0500 and reminded me that the holidays were over.

At 0630 I reminded Tilly that it was back to school again and she pretended not to notice me. I put on her bedside light; switched on the radio; collected her powerchair; positioned the ceiling track hoist; collected her sling; released Tilly from her overnight foot splints; removed her toe probe that had been monitoring her heart and oxygen levels overnight; removed her 'neckerchief'; unlocked her from her wrist splints; took away the 'head teddies' that keep Tilly's head in a good position during the night; switched off her ventilator; removed the nasal pillows from her nostrils and removed the headgear. Tilly pretended not to notice me. I made an attempt to turn down the bedclothes and Tilly's emerald eyes flashed open, and pleaded for 'one more minute!' The chilly dark mornings do not help, but Tilly is soon bright and breezy and ready to take on the morning routine.

Tilly needs to do some stretching in the morning to help cut down on painful contactures, especially behind her knees. Tilly is moved from her bed to bathroom and then her wheelchair using a ceiling track hoist and sling. This is a time-consuming process, but not uncomfortable for Tilly and simply life-chainging for me as constant lifting can be very problematic. Tilly is dressed in her wheelchair which can 'magically' be made into a changing table. There is a daily requirement for chest physiotherapy which is carried out using an amazing "Shaker Maker" machine. Whilst Tilly is being 'wobbled and coughed', I put on Tilly's foot splints which is not always that easy. Following this, Tilly configures her powerchair so that it has become a 'standing frame' - one of the best therapies possible for a child such as Tilly. This involves adding knee brace and a chest strap, and the chair moving to the vertical position from the horizontal. I set Tilly up with her reading book, propped on a pile of books with a plastic book stand. I collect her breakfast and Tilly reads to herself whilst I feed her her cereals as Tilly is unable to use her arm slings whilst standing. During this time Candice has floated down, perfectly dressed ready for school. We usually catch up on the news whilst Tilly is reading.

Following breakfast, we usually find that we need to press the old 'fast forward' button and get Tilly out of standing mode; clean teeth; do hair; sign reading diary; collect bags together' put coats on and try and leave the house by 0815. Candice usually goes out and gets the car ready with the ramp out and I skid out dragging Tilly's pink trolley full of her suction unit, arm sling, and school bag and any other PE or swimming kit as required. Getting Tilly clamped into the van is an absolute breeze as it is done automatically and the ramp is stowed away electrically. Regardless of these brilliant adaptations it is still quite a 'work-up' and I'm always relieved to find ourselves motoring on our way to pick up Tilly's assistant teacher and then make our way to school. Another morning 'in the bag!'

I had the pleasure of staying at school with Tilly for Monday morning to accompany the Pupil Council on an educational visit to Staffordshire Moorlands District Council. Tilly wanted to 'walk' with everyone else which was fine except for the drainage gullies cutting across lots of pavements that made for a really bumpy ride and we came across a car being booked for blocking a dropped kerb and gates. Tilly, however, took all these obstacles in her stride and just about kept up her peers. The session at SMDC was excellent, hosted by an officer from Stafford. Unfortunately, the local Councillor who was expected to help host this occasion did not attend. Very disappointing.

Once again, at 0630 Tuesday morning, Tilly struggled to wake up, but was soon bright and chatty ready for the day. It is a delight that Tilly is so very agreeable and such good company when there are so many laborious tasks to get through. Tilly did say this morning that if things had gone as planned "it would all be over by now" - so clearly the euphoria of having her operation cancelled has now worn off and the reality of "it" still looming has settled back in! I know it is always on my mind.

I was back 'suited and booted' today at the Caudwell Children's offices where I try to volunteer once a week if I can. A wonderfully exciting day as I was able to help with the final preparations for the families setting off on Sunday for this year's Destinatin Dreams trip to Florida. I worked in a wreath of amazing memories of our Destination Dreams trip last year.

Back home, I de-suited and donned a trackie as I set off to take Tilly up to her weekly swimming session at the Horton Lodge Community School which caters for children who are included into the mainstream setting, and are probably missing out on regular warm hydro-therapy. A glorious session and I get to enjoy the waters too. Ellen, Tilly's care worker, arrived and helped get Tilly ready and then disappeared off to collect Candice from Basketball. I just don't know how we'd manage without Ellen's support.

Home again, Ellen spent time making Tilly's hair even more beatuful and then helped Tilly enjoy her tea - Rolf had made 'Toad in the Hole'. Next time, Tilly says that she'd like a bit more toad and a lot more hole! Praise indeed!