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.