The Cold, The Trips and The Clicks

Tilly continued to battle with her tummy bug last week-end and so spent the week-end drifting and dozing, waking occasionally and, thankfully, showing slight signs of improvement. Jessica came and helped me bath and wash Tilly’s hair on Saturday morning, instead of helping with the swimming, and remarked how horrible it was to have Tilly so quiet. Candice, however, thanks to Daddie being able to hold the fort with Tilly, was able to carry on with her usual activities of Chess and rowing, and even brought home a trophy from the Staffordshire Chess Challenge as U14 Girls Winner. What a Star! It made me realise how exceptionally hard it must be for one parent families when one child is unwell – I guess that life can come to a standstill, especially if there is an additional need.


Rolf stayed with Tilly on Monday so that I could go along to the Treetops Carers’ Support Session which was great. I always love going to the Hospice and feel immediately enveloped in love, care and energy as soon as I step over the doorstep. It’s always a very mixed group of staff, volunteers and carers and the conversation is always vibrant, emotional and helpful. I was able to chat to a Mum going off on Caudwell Children’s Destination Dreams, and it was wonderful to relive the excitement and give advice on an experience that we shall treasure forever. I also learnt that a member of her family has a child recently diagnosed with Spinal Muscular Atrophy, and so we exchanged details with a view to me meeting up with them and seeing what I can do to help. My blood runs cold as I remember our experiences at Tilly’s diagnosis, so let’s hope that I can manage to bring comfort to them at this excruciating time.

Learning, of course, is an ongoing process, and I always learn something new when I talk to other parents and carers of children with disability, and love being able to occasionally pass on a 'gem' that will really make a difference. These days I love to hear the opinions and perspectives of young adults who live with disability as their unique and personal insight into living with disability can do so much to help us along our way. I appreciate that as much as I might try to really understand how Tilly feels, my views are only perceived ideas based on what Tilly says and does. As Tilly progresses, she might well be less likely to share her thoughts with me so I do appreciate and welcome the thoughts and feelings of others who have already 'been there, done that and got the t-shirt!' I also expect that Tilly will go her own sweet way, but every little helps when it comes to parenting.



Before getting back to Rolf and Tilly I gave a guided tour of Treetops to a GP in training and I felt very proud to show him around all the magnificent facilities on offer. He was certainly extremely impressed and remarked on the incredible sense of community and camaraderie he could feel. I think it is very often the case that people think that children’s hospices must always be very sad and tragic places, but this couldn’t be further from the truth at Treetops.

It was good to see that Tilly was very much on the mend and had spent the morning making flapjacks with Daddie. It was a great pleasure to send Tilly off to school on Tuesday morning and I was able to go along to the Caudwell Children’s offices and try and lend a hand with whatever was going on. I love being with the Caudwell Children Team, and always leave feeling really ‘charged up’ as they are so dynamic in their approach.


The ‘Airways’ Team came by and adjusted Tilly’s ventilator as a recent sleep study showed that more support was required when she ‘dipped’ in her oxygen levels overnight. I was then treated to a super night’s sleep Sue from the Team came and did a night sit.

It was wonderful to be able to accompany Tilly on a Geography Field Trip to Carsington Water, near Ashbourne. We travelled in the accessible mini-bus with a few other children and the majority of the classes went on a coach. It was cheaper to the travel this way as coach companies are entitled to charge a premium for their wheelchair accessible vehicles. I can’t believe that this is quite legal these days, but apparently it is, which is quite remarkable. The extra cost for Tilly to travel with the rest of her schoolmates on the coach would have been £90.00 on this occasion. In her First School there was an additional charge of £40 every time Tilly travelled on a coach.

However, we did have a super time pond-dipping, sketching, examining habitats, all of which was fully accessible for Tilly. The major challenge was the cold as Tilly’s hands became so cold that she couldn’t drive or hold a pencil. This is a constant winter problem as Tilly finds wearing gloves so difficult as her finger-tip controlled joy-stick is so sensitive. The closest we come is cotton, finger-less gloves which do help a bit, especially with those little sachets of hot crystals fixed to the palm of her hand.

It was great to see Tilly back in the pool again, but once again, Tilly struggled to stay warm as the water temperature was low. We’ve tried wet-suits but they do restrict Tilly’s limited movements, which in turn, doesn’t help stay warm. I’ll have to look into what’s available this season.

Tilly has pedalled for up to an hour nearly every day on her exercise machine which
is brilliant, as she is not only getting fit, but whizzing through her reading books.

Poor Candice got a shock at Church this week when she was called up, unexpectedly, to do the first reading which just happened to contain many difficult to pronounce place names. Normally we’ve practised the reading during the week, but for some reason, we had not noticed that it was Candice’s turn. Candice walked slowly to the lectern, skimming the words on the way, those who’d noticed she’d been caught short offered up a prayer and I held my breath. No need to worry – Candice read like a dream, and was heartily congratulated by all for her achievement. Bless her, and to think that Candice had received speech and language therapy in her early years to help manage a stammer.


The rest of the week-end was spent packing and preparing for Candice going off to Outdoor Pursuits Trip with School. Candice is so excited and I’m sure will get one hundred per cent of all the amazing activities on offer. Rolf and I are missing her already, and Tilly would like Candice to ring us every night and read us some Harry Potter!.


I so wish I was going along too, but I might just get a chance when it is Tilly’s turn as we did have some fun when we went on such a trip with the First School



Rudyard Sailability had some good news that out of a field of seven hundred entrants it has been chosen as one of three finalists for a national award from the Directory of Social Change. The winner will be decided by public vote, so I do hope that readers of this Blog will kindly consider voting for Rudyard Sailability and take a few moments to visit
http://www.surveymonkey.com/s/PZCNNZW?dm_i=6S7,9D3S,2LKRBY,QFOV,1

Many thanks,every click will help.

Time Will Tell

Last Sunday morning was D-day for Rudyard Sailability. A call had gone out to all Volunteers to come forward and move out the last of our stock from our dilapidated shed into a winter store, so that the building could be removed to comply with the local Council's Demolition Order. It is planned that we will build a fully-accessible boat store with changing facilities ready for next season. It is a tall order, but, time will tell if we're up to the challenge.


Through the 'monsoon' I could hardly believe my eyes when I saw the designer wellies and smart motors of two of our most hard-working Trustees, and their husbands, skidding through the liquid mud of the lakeside path. They could have been at home leisurely thumbing throuh the Sunday Press, but they had, instead, made their way to help. As it happened, they were the only two Volunteers that had heeded our call on the day. I stood in awe as they wrestled and hauled cobweb-infested bits of Club 'ullage' into their shiny cars. Charlotte Atkins and Anne Morris have worked 'in the background,' legally and politically, over the years for Rudyard Sailabilty - neither of them sail or have a family member who uses our facilities. Between them they have donated many hundreds of hours and many thousands of pounds worth of their expertise to our charity. They are remarkable; they sit on opposite ends of the political spectrum; and yet here they were, saturated shoulder to saturated shoulder giving of themselves to help others. There were no cameras there to capture their contribution and no campaigns to fight - just a job to do - a remarkable testament to their calibre and an astonishing testament to the power of Sailability.

On Monday, once I'd done the 'U' bends at the B&B, I spent most of the time creating a 'clothes mountain' on the bed as I tried to find an outfit that would carry me through my five minutes talk, as a Caudwell Children Ambassador, at the Irwin Mitchell Party Fringe Event at the Conservative Party Conference. Outfit chosen and laden with fortifying talisman, my big sister, Chris, sent an email with such words of love and encouragement that made me feel so 'charged' that I realised that it didn't really matter what I looked like, it was what I had to do that mattered.

Trudi Beswick, CEO, Caudwell Chldren and PR Manager, Ben Sutcliffe scooped me up and drove me to sunny, swishy Birmingham to take up the challenge. I had a strong message to deliver on behalf of Caudwell Children, with just five minutes to do it in. I had to influence the hearts and minds of the MPs present and inspire them to see the benefits of working with the Caudwell Children and to persuade them to see that in such precarious times there is a need for 'working together'.


The event took place in a seriously glamourous art gallery, Castle Fine Art, - not at all what I was expecting - with champagne and canpapes. It all seemed rather surreal. I could feel the tension beginning to mount as my slot drew nearer. I began to wonder if I was really equal to the job. Fortunatley, I engaged with a fabulous lady called George from Acorns Children's Hospice who, just like my big sister, filled me with belief that I could do it. The event was filling up and I was pleased to see that amongst the MPs present was our local MP,Karen Bradley, who immediately pledged her support for Caudwell Children.

The first speaker was Anne Milton MP, Parilamentary Under Secretary of State (Department of Health). We were really heartened by her speech, and encouraged to hear that she had been a nurse for twenty years before getting into politics.

Next up was David Strudley, CEO, Acorns Children's Hospice who clearly and carefully outlined the brilliant work of hospices and the need for continued Government support.

With my heart fighting to leave my chest; and my lips welded to my teeth, I took to the podium, wishing I'd written the speech down as I was now sure that I wouldn't get it right. I took a deep breath and, mercifully, all sense of nerves left me and I could hear my words filling the room and could see that they were being well received.

My presentation was based on the well-used "Welcome to Holland" 1987 piece of writing that comfortably and conveniently explains what it might be like to have a child with a disability. Basically, the metaphor suggests that planning to have a child is like planning a trip to Italy, but en route the family are informed that they must go to Holland instead. "Holland" is described as not being a bad place and all the family have to do is to get new guide books and make the most of this place which is really rather quite lovely - not "Italy", but not that bad. Families are informed that they will never get over the pain of not going to "Italy", but they have to live with it, as they will never make it to their original destination.

I have lived with this reassuring explanation for years, taking comfort from the notion that it is OK for us not to go to "Italy", and the audience were nodding with approval at the analogy.


Then I told them that earlier this year I shared the piece of writing with my husband and he said, "My plane crashed landed into Holland." The shock of Rolf's response made me revisit the whole concept that it is somehow acceptable that some famlies must settle for less of a life than others. During my talk I invited the audience to take look at the 'Arrivals Hall' into "Holland", which includes all people from all walks of life, feeling lost, afraid, confused, over-burdened by luggage that was never packed; horrified at the disappearance of a sibling; coping with the absence of a partner and the trying to make sense of the signs leading to Hospice Care, Surgery, Orthotics, etc rather than the usual expected fun-filled destinations. The room was very quiet as it seemed that a new vision of "Holland" was emerging and a myth was being evapourated.

I then told the true story of Tilly's remarkable dream - she was looking for Candice who had wandered off to Italy without her. I recounted how I'd gasped in sadness at this apparent mirroring of our life and then Tilly piped up, "so off I went to Italy and found her!" It was like a light coming on. I instantly realised that Tilly has received the support that she needs from Caudwell Children, Treetops, Home-Start, Rudyard Sailability, etc, etc and she has been re-routed and made it to "Italy".



Carrying on the metaphor, I explained that the Caudwell Children have been making their way into the "Arrivals Hall" and managing to get families such as ours to the Transit Lounge and then to the Departure Gate for "Italy". This is an expensive, and unnecessary diversion that needs managing, and is critical if families are to make it to "Italy". Caudwell Children's aim is to avoid these costly 'lay-overs' and arrange for a direct flight, with all the care and support needed, to faciliate a safe landing into "Italy".

I asked if anyone was prepared to join Caudwell Children in such a life-changing 'flightpath' and a resounding chorus of "Yes" filled the room.



The Charity does not yet have a date in the diary to meet with the Government to discuss future partnership work, but it is hoped that such a discussion will take place. Time will tell.

Since the giddy heights of the Party Conference I've come down to earth with a bump as Tilly has succombed to a nasty tummy bug. Poor little soul has tried so hard to get better in time for the vaious activites planned,such as a Chess Tournament, the School Disco, Swimming and Shopping. In spite of Tilly's best efforts she has spent the last four days in a darkened room, drifting and dozing in and out of consiousness, with the suction unit in constant use. Tilly's breathing does not seem to be affected, so hopefully it is just a matter of waiting until the virus passes. Time will tell.

Machine Magic

Tilly has now recovered from her first cold of the season, and it leaves us all quaking and feeling, “it’s that time of year again”. Tilly’s weak muscles result in an inability to cough which means that the slightest sniffle can result in an emergency admission to hospital for intravenous anti-biotics; intensive chest physiotherapy and possible intubated ventilation. Living with the threat of serious respiratory illness is constant, but greatly increased during the winter months. Tilly will take a daily dose of preventative oral anti-biotics throughout the season which, unfortunately, adds to the morning’s stresses as Tilly is rather reluctant to take medicine. These respiratory crises are very traumatic all round and so we do everything we can to avert such an episode.



The first thing we do is withdraw Tilly from school and all activities and start a course of anti-biotics which we keep in stock. Tilly has learnt to take them in tablet form which is better than the syrup, but is still a stressful challenge. I tend to sleep downstairs with Tilly whilst fighting off the lurgy as there is often and increased demand for oral suction and monitoring during the night. Since the age of three Tilly has slept using a night-time, non-invasive ventilator which bellows her lungs with air and helps keep them clear. The pressures on this machine can be increased during a chest infection to improve Tilly’s breathing capacity. I couldn’t believe the change in Tilly’s general health once she was put on this therapy and would thoroughly recommend it sooner rather than later.

Tilly’s heart rate and oxygen levels are also always monitored overnight by a toe probe and are a great indicator if things are starting to go wrong. An alarm will sound if Tilly’s levels are entering a danger zone.

Tilly will have daily sessions of chest physiotherapy starting with ventolin or a saline solution delivered by a nebuliser mask to loosen up unwanted secretions; a session on her Hayek oscillator or “Shaker- Maker” which, via a shell shaped piece of plastic strapped to Tilly’s chest, rattles up Tilly’s upper body and moves secretions up to throat and then delivers impressive compressions to achieve coughs.


Tilly then has an Emerson Cough Assist machine, which is forms a seal over her nose and mouth and blows air down her throat and then hoovers back any lurking ‘rubbish’. Tilly then expertly uses her suction unit to remove any remaining yak which could go on to cause pneumonia. Simples!

However, if all this section management fails and Tilly has difficulty in breathing then we do have a cylinder to deliver a limited supply of oxygen whilst calling the Emergency Services to rescue us. The local First Responders usually arrive before I’ve finished booking the call. Tilly has ‘Open Access’ to North Staffordshire Paediatric Intensive Care Unit and they have managed her care brilliantly over the years, but, as much as we love them, we do our level best not to make an emergency visit.

Whilst Tilly was fighting off this latest infection, Michele, Tilly and Candice’s Godmother, and I created a floral offering to place in the ‘children’s window’ at Church to celebrate Harvest Festival. Floral art is certainly not my forte so it was great to have Michele’s support. We placed a Christmas shoe box at the centre of the piece to remind everyone that this year we were supporting Operation Christmas Child. I think we got away with it!



We were treated to a visit from Grandma, Uncle Mike, cousin Amanda and Grace - the girls' cousin and God-daughter. Rolf's family live a couple of hours away so it was so magical to spend some special time with them, and Grace just lit up every room. It is such a shame that we live such distance away and don't get to spend more time with them.

It was with great excitement that Tilly took delivery of her new Medicotech exercise machine that has been generously funded by Muscular Dystrophy’s Joseph Patrick Trust. Primarily, this equipment will deliver a passive work-out for Tilly’s arms and legs and give her a good cardio-vascular work-out, as well as improving her circulation. However, the machine is designed so that Tilly can contribute and her input will be recorded and reported back to her at the end of the session. It is brilliant! We have already noticed that Tilly can bend her legs so much easier than before, as they had become rather stiff following surgery in May. The idea is that Tilly can drive into her machine and exercise her arms and legs as often as possible, even whilst watching Hannah Montana! It is quite transportable so I could even take it into school for Tilly to work on during ‘inaccessible ‘PE lessons.


Wouldn’t it be great to see such a machine in other settings such as leisure centres, care homes, day centres or hospices? The opportunities are quite endless as they can be adjusted for different users, and the rewards could be phenomenal.

We somehow made it into school for Tilly to have her ballet lesson with Miss Jeanette which left me brimming with tears. Tilly uses her arm support to dance which have now been adjusted so that Tilly can drive with them in place and it is just such a joyous sight to behold. Who’d have thought that Tilly would be working on her third British Ballet Organisation award? Just need to create an outfit for the exam which will probably involve Tilly’s faithful and creative Godmother and her sewing machine again!


Unfortunately, with all the early morning rush and trying to remember everything (suction unit, arm supports, school bag, lap top, dinner-money, reading book, splints, etc) I forgot Tilly’s boots which cover her splints! Tilly’s feet are encased in rigid plastic ‘ski-boots’ around the clock to try to slow down deformities which occur due to her muscle weakness. They are not the prettiest objects but they do a good job and normally Tilly would prefer them to be concealed beneath boots. Fortunately, it seems that Tilly is now so comfortable with herself at school that she didn’t mind spending the day showing off her pink butterfly splints. I think this might be a good sign?

This has been rather a hectic week with a whirl of extra activities to squash into the Griffiths' already busy schedule. Candice has been busy almost every evening with cross country, chess, netball, guides and ballet and has had to get up at 0600 to keep up with her homework.

Daddie has been busy looking after our B&B, including annual improvements, whilst keeping up with the ironing, shopping and creating the most delicious meals for us. He also went to a meeting at Westwood College where the girls will go next and was most impressed with all the work they have done to make it wheelchair accessible. Rolf has also had to 'hold the fort' whilst I attended my Governors' meeting which have kicked in for the new school year.


Rudyard Sailability has had a wonderful last week of the season with the local Special Schools and I was thrilled to be able to assist with their enjoyment. One more session to go before our dilapidated shed is emptied and pulled down. Work is starting on our new building very shortly, but we are still desperately seeking a secret millionaire to get the job done by next Easter. Anne, one of our Trustees and Legal Representative, put on a fashion show in support of the building fund and we glammed up and went along to help raise some pennies. The evening was a glittering success enjoyed by all. I was especially proud of Tilly who took the microphone and thanked Anne and all present for getting the Charity this far.


I spent some time with members of the Caudwell Children Team discussing the content of the five minutes talk that I, as an Ambassador of the Charity, will deliver at the Conservative Party Conference next week. I feel very honoured and privileged to be given this opportunity and am aware that I will be a very small cog in this giant political machine. We are hopeful that my presentation will have an impact on the audience and bring about new ways of supporting families of children with disabilities.

Five minutes isn’t very long, so perhaps I should politely request that Andrew Lansley, Secretary of State for Health, meets with the Caudwell Children to explore opportunities to refine the political machine so that it will run more smoothly and effectively to release and serve the families who have become crushed and jammed in the works?