Tilly has her eye on the ball

There is no doubt that the couple of weeks following Tilly’s surgery have been eventful.

During Tilly’s recuperation she was able to take part in a Special Matters’ workshop with Borderlines Theatre at a Young Carers’ Ambassadors Conference. This aimed to show young people that having special people within the health and social care industry is of vital importance and can be a really fulfilling career that can literally change lives. Sue Moffat from Borderlines is a genius and had these young people exploring new ways of working within the dramatic setting, allowing them to experience a little of what it is like to live with disability in a wholly unique way. I was amazed at Tilly, who had only just come out of her own theatre, who took centre stage and gave the students her own take on living with disability – basically that there is never a time when she has said ‘what a shame I can’t do that,” but always “how can I do that.” The bottom line was that Tilly can achieve all that she strives for with the help of those who work with her creating their own piece of magic. I am sure that the Students will have learnt something valuable to take with them on their journeys,

During this time Tilly’s wounds were checked by the local community nurse and it seems that her legs are recovering well. Tilly came off the pain-killers within a week and only gave little discomfort when we needed to move them. The original red and white (Stoke City) plaster cast was removed and now Tilly has a glittered purple cast ready for the Caudwell Ball.

The Ball has been a constant focus for Tilly with many hours dedicated to her “Butterfly – You’re Free to Fly” artwork which is to be auctioned. Set against a faint blue landscape of Tilly’s smiling face, her pink, purple and spangled butterfly collage is inspired by Sir Elton John’s lyrics from “Someone Saved my Life tonight”. The picture also incorporates a copy of the little butterfly that Louis Parsons created for Tilly when he was creating the masterpiece that will also be auctioned on the night. I’ve certainly got butterflies in my tummy now as the event draws closer, as there is no way of telling how the bidding will go. Tilly is praying that she will be able to raise enough money to buy at least one powered wheelchair – that’s £20,000! It’s such a big ask in these stretched financial times, but it means so much to Tilly that she will do her best to raise this amount as she knows exactly how much the chair will mean to the child that receives it.

Tilly returned to school and it looked like the Griffiths’ household was returning to some measure of normality. Candice, Molly and I went sailing and Tilly stayed home with Andrea to work on ‘blinging’ the ball gown. Michele, Tilly’s ‘fairy’ Godmother was in and out making final alterations Tilly’s dress. There was a frisson in the air as we packed Candice’s case ready for her trip to France with the school. We were ‘all systems go!” However, it is always at times like this when I allow myself to think, “we seem to be on top of this” that the spanner wings itself in our direction!

On Thursday morning’s school run Tilly was struck with an acute pain deep into her right side that brought her to tears. Fortunately, at school, with a bit of stretching out, the pain diminished and we all put it down to trapped wind. We all heaved a huge sigh of relief and went about our day.

I did an interview on Moorlands Radio, on behalf of the North Staffs Orthotics Campaign, which hopefully conveyed the importance of having improved quality for this vital service. The founders of this campaign are working tirelessly with the hospital to achieve this aim, ever mindful of the economic pressures, but ever mindful of the economic sense of getting this part of the service right. A meeting has been arranged with the Chief Executive of the Trust, so let’s hope that there will be some improvements to follow that will benefit the hardworking staff in this department and, ultimately, the patients.

Tilly had had a good day, although the pain had not completely disappeared. We had a meeting at the house to make the final arrangements for the Rudyard Sailability Race Night scheduled for the next evening. Rolf and I enjoyed ‘pizza on da couch’ and everything looked fine,

However, around midnight Tilly’s pain returned with a vengeance. We tried through the night to relieve it with various changes in position, trips to the loo, etc but nothing seemed to help. By 0600 Tilly started vomiting and panic set in. I rang the doctor at 0730 and he could hear Tilly howling in pain and he advised to ring for an ambulance as there was a danger that Tilly’s appendix were about to rupture. Our familiar friend Jane from the First Responders arrived within seconds of our call. Another paramedic arrived in a car within five minutes and he called up for an ambulance to transport Tilly to A&E. Tilly was by now in a chronic state of distress, as were we all. Fortunately, Candice was scooped up to school by a good friend and Tilly and I sped off with flashing blue lights and bells ringing. The traffic on the A50 parted like the waves of the Red Sea. Tilly was quickly assessed as having a rumbling appendix and the surgeons were alerted ready to take action. Drips were organised; X-rays taken – my heart was in my mouth. Tilly looked up with a big tear rolling down her cheek, “I’m not going to the Ball, am I?” Images of sparkling butterflies: diamond studded wheelchairs and bejewelled ball gowns swirled around my head, but all I wanted was to see my little girl out of pain and smiling again. “You shall go to the Ball,” I promised.

As the time passed with all the preparations and observations I prayed for a miracle. The news came that the Paediatricians that look after Tilly needed to have Tilly on their site, so that she could access Intensive Care post surgery. This delay proved to be beneficial as during the transfer Tilly’s tummy pain began to decrease and the vomiting stopped. By the time Tilly was settled into the Assessment Unit she felt much better and had even started smiling and chatting. With many visits from various doctors during the day there grew optimism that Tilly would not need surgery and that the pain could just be a ‘bug’. It looked like our prayers had been answered!

By six o’clock Daddie and Candice arrived to take Tilly home. By seven o’clock, albeit looking rather tattered and torn, we were on our way to the Rudyard Sailability Race Night! It was a miracle! We even managed a brilliant night and managed to raise around £1300, which was fantastic. It was pure poetry to see Tilly whizzing about like nothing had ever happened. Rolf and I were like rags!

Saturday was a nice ‘chillaxing’ sort of day getting Candice ready for her trip to France which departed at one o’clock in the morning. Just as I was finishing Candice’s pedicure Tilly started to complain of feeling unwell again. I dropped Candice off at school in the middle of the night and then returned to find Rolf coping with a very poorly little girl. A nightmare! Tilly struggled all through the night and then on into the next day. Comforted by all the tests that had been done a few days earlier we managed Tilly at home, but the stress levels were sky high. Even more praying.

By nine o’clock, after a little snooze, Tilly opened her eyes and asked for a drink and something to eat. It seemed that the ‘bug’ had finally moved out of her system. Rolf and I watched as we saw our little girl improve by the minute. The sense of relief was palpable and reduced us to tears.

Tilly has been back to school and the signs are looking promising that she shall indeed go to the Ball.

Tilly’s Soulscape est arrivee!

The moment we’d been waiting for had finally arrived. Louis Parson’s was at the door with Tilly’s Soulscape, a remarkable piece of art that will be autioned at the Caudwell Children's Ball on 20th May. Feeling so honoured, Tilly would be the first to view Louis’ representation of her ‘inner being.’ The air was charged with anticipation. As Louis turned the huge canvas towards Tilly, colour, power and radiance filled the room. Tilly sat opposite as if she was looking into a mirror, perfectly reflecting the purples, pinks, reds silver and blues of the canvas. Tilly smiled. It is breathtaking.

Louis, Daddie, Tilly and me just sat in the company of this compelling canvas, exploring the various contours of the Soulscape and absorbing the energies that radiated from it. Our words seemed superfluous as the picture was telling Tilly’s story. We drank deep into the artwork, enraptured.

As we travelled through the many lands of Tilly’s Soulscape we were struck by the variety of intense feelings that they generated that reflected Tilly’s journey. In the southern zone of the work we were struck by the serenity of the lake-like scenery, with a fountain of ‘happies’ that seem to depict Tilly’s physical being: little, beautiful, calm and tranquil. But then, there is the most incredible upward, swirling, vortex of harnessed energy that carried us up to Tilly’s innermost being. The energies twirl and grow and out of them explode the most beautiful and elegant soaring figure of Tilly; dancing and flying; filled with light and power.

Our eyes are captivated by shimmering ribbons of happiness and achievement that arc out of her core. Their progress suggests an infinite movement, without bounds, that could carry on beyond the canvas. The sense of potential is limitless.
An astonishing aspect of this work is that is actually appears to move, (like the Van Gogh’s field of wheat) whirling upwards, sucking us in and taking us right to the heart of Tilly; to feel her unending capacity for joy.

However, further examination of Louis’ artwork will reveal that Tilly’s magical energy is set in a realistic context. Tilly commented on the ‘mud’, so difficult to work through, that surrounds her peaceful lakeside beginnings. Rolf sees a face with eyes tightly closed – does it look like Tilly on the operating table? These shadows, too, are a vital part of Tilly’s story. I can hear a muffled determined defiance ringing forth through a dark chasm in the canvas. The hinterland of this work has powerful undertones that remind us that Tilly’s travels have been fraught with fear and anxiety that make her seemingly effortless ascendance all the more remarkable.

I believe that Louis’ artwork is an honest representation of an extraordinary little girl who has been given an extraordinary path to tread but has managed to soar above the barriers of her situation to realise unbelievable heights. Tilly’s Soulscape, has a luminous quality that can become a shining beacon for us all, reminding us of the possibilities of striving to get 100 per cent out of each and every day, no matter how difficult the challenges might be.

I believe that Tilly’s Soulscape est arrive so that we can all celebrate and marvel at Tilly’s “joie de vivre.”

Smooth Operation

There are many things about Tilly that really blow me away, but she has completely excelled herself this time.

At 0900 on Thursday morning Tilly arrived at hospital and had her hair beautifully braided by the Play Specialist in preparation for her operation whilst the sedative medication took effect. Daddie then read her the Psychologist's Hot Air Balloon story to relax her whilst Andrea and I got Tilly into her gown and put her into bed. Everything was very calm until the curtains opened and the porter arrived to take Tilly to theatre. Tilly immediately 'lost it' so we began one of the Psychologist's recommendations of telling a story between ourselves using three words at a time. Amazingly it seemed to help and Tilly and I began an adventure to Hollywood to meet Hannah Montana, who'd thrown a party with Robbie Williams there to greet Tilly, etc, etc. The Play Nurse who accompanied us also insisted that Daddie came too, and there began Rolf's first ever 'longest walk' in abject agony, helpless to stop his little girl being wheeled into 'who knows where'. It really was an excruciating journey for all of us, but Tilly managed the best that she ever has and arrived in a reasonable and understandable emotional state (which is more than could be said for Daddie).

I accompanied Tilly into the Anesthetist's ante-chamber where Tilly was spiralling away into further distress, so we started on another story of an actual visit to Los Angeles that we plan to make one day. Charlotte, the amazing Anaesthetist, arrived and filled the room with mirth, confidence and optimism - an absolute Star! She used a beautiful fluffy horse to gently waft Tilly off to sleep which worked a treat. As Tilly was floating away and I was telling her about what we'd do on in Beverley Hills she said, "I'm not here any more, Mummy" and drifted off. It is very difficult to describe how it feels to kiss your little girl goodbye whilst she has already 'gone' and then to leave her in the hands of the surgical team. My blood is instantly chilled and I am gripped by a tension that invades every pore, tightens every nerve and suspends every response.

With Andrea's help Rolf had recovered himself enough to be able to immerse himself in the day to day running of the day whilst Andrea and I disappeared into a parents' room to busy oursleves in the 'blinging' of Tilly's powerchair. I don't know how I would have got through the day without my special friend's loving support. We worked away the hours, getting little updates every now and then, until at last, after seven hours in surgery,we heard that Tilly was on her way back to the ward. We galloped up to the theatre and met Tilly, still intubated, being wheeled along with Charlotte and two other nurses. Tilly looked beautiful. All the tension left my body and positive emotion and energy charged through my veins as my 'coping Mummy mode' returned.

The slick operation in the Paediatric Intensive Care Unit was impressive as the team all worked with the speed of pit-stop technicians to 'extubate' Tilly and see if she could manage to breathe without her ventilator,and manage the pain. Within a few minutes of breathing for herself, Tilly was asking questions; ascertaining her situation and managing her own needs as she battled her way back to consciousness. It was incredible. Tilly's big emerald eyes would occasionally open and she would ask for Daddie who was on his way. As Andrea was leaving, Tilly turned through all the tubes and hoses and gave her a huge smile, a small thank you for all that she had done. It was now Andrea's turn to dissolve after being so strong for us all day.

Daddie and Candice arrived and found Tilly amazingly conversational and insistent that Candice stay with her rather than pop out with me for a bite to eat! It was quite surreal and so encouraging.

All night long I sat with Tilly as the PICU nurse monitored and observed and administered pain relief. I was in absolute awe at the strength and resilence of this little soul, and charmed by her witty and intelligent chats in the wee hours that really kept me going.

The next day was spent reducing pain relief medication, disconnecting lines and getting Tilly eating and drinking again. The first visitor was Ruth, Tilly's Psychologist, whose sparkling smile lit the room. Ruth was thrilled to hear how much her therapies had helped Tilly on her way to theatre, and even more delighted to hear that Tilly had requested some clinical photographs to be taken of her 'on the table' to help her with forthcoming procedures. I'm not sure that I'll be able to look at them, but both Tilly, Ruth and the Surgeon thought that they would help.

Andrea arrived next with Les, a MacDonalds Happy Meal and a pedicure; Daddie then arrived with news that an assistance doggie might be 'on the way'; Lucy, from the Children's Community Team, arrived with a chocolate cup cake and manicure set and Annie, a devoted family friend, arrived and gave Tilly a manicure. The day passed quickly with the added bonus that Tilly loves all the Nurses and her special friend from swimming on a Tuesday night was in the bed next to her!

The next day was called 'Operation Tilly' as it was planned to release Tilly from all hospital dependant needs. We managed to get Tilly into her powerchair and then Daddie and I took her up for the required X-rays. Once these were checked and considered to be OK, we found ourselves packing up and heading for home after just two nights in hospital. Even the Consultant on duty marvelled at Tilly's resilience, and like me, he said he'd still be under the covers after such a procedure.

Hard to describe the joy of arriving home with this special little girl, tinged, if I'm honest, with a little intrepidation of wondering if we'd done the right thing, and perhaps had rushed Tilly out too soon? However, after a beautiful calm night's sleep Tilly awoke feeling better than ever and looking forward to seeing Candice who'd been away on a Camping week-end with the Guides.

Candice arrived home tired, damp and thoroughly exhilerated with her camping escapades. The girls exchanged stories whilst I unpacked Candice's gear and Rolf prepared our evening meal. "Tea like a proper family for once" with both our little girls home and safe, has never tasted so good.