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.