Tilly spent an anxious, but enjoyable day at school and did manage pretty much to push the thought of her pamidronate infusion to the back of her mind. We were greeted at Ward 112 like special friends and settled into a surreal 'calm before the storm' scenario with Tilly covered in cream to numb the pain of the needle entry whilst waiting for a very long hour for it to take effect. Tilly was amazing right up until the moment that the door closed on the Treatment Room and the two wonderful nurses tried to find a vein in which to insert the needle for the cannula. No matter how much preparation we'd done and big talks about 'rational fear', this was a little girl terrified of the incoming needle who worked herself up into a traumatic lather. It was absolutely unbearable for all concerned. I tried to get the balance between being a 'strong' mum, a 'loving' mum and a 'sensible' mum, when all I wanted to do was grab Tilly up in my arms and run away as fast as I could to make it all stop. However, after many attempts, the skill and dedication of the nurses prevailed and the cannula was in place. The relief on all sides was tangible. Incredibly, once out of the Treatment Room Tilly returned to her usual chirpy self and we spent the long evening playing games, reading and chatting. Rolf created the most delicious pasta for me to have for my meal which was heaven and Tilly also thoroughly enjoyed and has ordered for herself on another occasion! It was a very late night with us not getting Tilly home and into bed until after midnight. Tilly has her arm in a sling and now we've got to pray that the vein holds out for the next three days and she will not have to go through the 'needle bit' again.
Didn't see Candice at all this, relied upon the good will of a special friend to bring her back from rehearsals. Broke my heart at 0600 Tuesday morning when I'd failed to notice that she'd left her door ajar for me to pop in, say prayers and kiss her goodnight. I went in immediately, hugged her to me and prayed that Candice would forgive me. Candice is such an incredible little girl who never ceases to fill my heart with joy and love. Her road 'chez Tilly' is an interesting one. I am so pleased that Daddy is so dedicated to ensuring that she is able to shine and participate in all and every activity even when Mummy is away from the home with Tilly. I remember once, following a long hospital admission with Tilly, Rolf saying "It's my job - it's why I'm here". Again, we're so lucky as so many other couple are unable to stick together when there is a child with a disability. I can 't imagine managing without Rolf. I often think it is because we are older parents, and wonder if we'd have managed if we were ten year's younger? Who can say?
Tuesday morning's alarm was all too sudden, and signalled the start of another hectic whirl to get the girls and Tilly's Teaching Assistant to school on time. Tilly was tired but cheerful and very cautious to protect the cannula which made getting ready for school all the more challenging.
I needed also to be 'suited and booted', complete with laptop to attend a meeting as Secretary of Rudyard Sailability with the regional Manager of British Waterways - all extra pressure early in the morning! I travelled with Charlotte Atkins (MP) who is a long-standing active supporter of Rudyard Sailability and Trustee of the Charity and eventually (after really sluggish traffic) met up with Dennis Priebe, our Chair in the BW offices at Kidsgrove. There's nothing like getting lost on the way to an important meeting to really get the stress levels soaring! The meeting, however, was extremely positive and I did detect a small glimmer of hope that there may just be a way forward to calm the troubled waters at Rudyard Lake. It will take a lot of hard work and careful handling, but I feel quietly confident and just a little excited that now that British Waterways has offered to step in and broker negotiations we might just get the boat store of our dreams to support the work of Rudyard Sailability. Time will tell.
Scooped up a bubbly Tilly from school and made our way to Ward 112 at the North Staffs. Once again we were welcomed like special friends and we even bumped into Tilly's Respiratory Consultant for a catch up. Tilly so loves everyone at the hospital, I am sure they are like family to her - favourite Aunties and Uncles on her doorstep.
Great relief that the vein had held, despite a few worrying moments when one of Tilly's favourite nurses had to sort out a little clot and had trouble flushing the cannula to get started. Ellen arrived much to Tilly's great delight and was charged with the task of reading the book of the Hannah Montana Movie and I was dispatched to collect the Happy Meal from McDonalds. Rolf had created a fabulous lemon cous-cous with vegetarian falafals, Greek Salad and pita bread meal for me. It was so delicious and made me feel very loved.
We were then further treated to the unexpected arrival of the glorious Annabel, one of our most treasured friends who also happens to run "Racketys" a specialist clothing company for all those who live with disability. Annabel is a splash of colour and inspiration in the wardrobes of families like ours and she "Get's it!" - she has an insight into "our world" and understands that we want to look fab and not be horribly stressed trying to get dressed. Annabel actually revealed to my chagrin that there is a bigger market to dress dogs and teddy bears than people with disabilities! I'm right behind her and feel sure that Rackety's will start a clothing revolution!
Following a preview of Annabel's latest arrivals and great input from Ellen, Tilly and Annabel settled down to look at photographs on Tilly's laptop from last year's Pride of Britain and amazing Destination Dreams to Florida. Time flew by with such lovely company and we found ourselves on our way home and into bed by 1000. I did make sure that I went in to Candice who once again had been brought home from Cross Country with another special friend. Rolf told me that they'd had a great evening with a pasta and a viewing of The Time Machine.
I felt a little uneasy about Tilly overnight as she didn't just sound settled. At 0600 this morning I noticed that her heart rate was up cruising at around 130 instead of a steady 90ish. Tilly looked really tired and felt rather warm so when I roused her I wasn't surprised to learn that she felt a bit rough and even shed a few tears at the thought of 'getting going'. I suctioned a bit of 'rubbish' off her chest and fear that there may be 'something' brewing. Tilly was happy with the suggestion of going back to sleep and seeing how she felt later on. It could go either way at this stage - her oxygen saturations are still very good. Rolf has also informed me that the side-effects of pamidronate include raised heart rate and fever, so we live in hope and will see how she is later. I telephoned Channel 5 News who are due to come and film Tilly today to warn them that she may not be equal to any of the planned activities such as sailing, and warned Dennis at Rudyard Sailability that we may need to postpone the planned activity. Channel 5 have decided to come along anyway, and Dennis is standing by. We will be at the hospital later in any event so Tilly can be checked over by the doctors. I pray she will wake up her sparkling little self, but I am worried.
Candice was a delight this morning - all excited for her workshop at The Victoria Hall. I am thrilled that she is involved in the Shakespearean Festival and she is loving it. We are a bit stuck for a lift home for her after netball but we have been offered help to get Candice to and from Guides later on. Rolf says that if folk had come to stay at the B&B over the summer we may now have a runabout car to manage such situations. Fortunately, this month has really picked up and we've had a little flurry of arrivals - perhaps we'll have a jalopy before too long to solve this tricky situation?
Whilst writing I am listening to every breath that Tilly makes on the monitor and is sounds quite steady, with the ventilator giving her the support she needs. I'm praying for a yet another little miracle. Trying times.
Wednesday, 30 September 2009
Monday, 28 September 2009
God Bless All Here
Sunday was another heavenly lie-in as today's piano lessons have been postponed until later in the day. Tilly and Candice snoozed in bed and I helped Rolf with the breakfasts until 0930 when the house turned into a scene from the "mad movies" to get Tilly up, dressed, breakfasted, sing Happy Birthday to Grandma and then down to Church for 1030.
We belong to St Edwards Church in Cheddleton and feel very blessed to be part of such a loving family and privileged to meet up in such a spectacular location. We skidded in, late as usual, and were greeted by warm and friendly smiles from a group of people we have come to love and care about, who so openly love and care for us. I appreciate the opportunity to stop, be quiet and to reflect that Church gives me, and I am so pleased that the girls feel so at home there too. I always feel incredibly close to my lovely Dad who died eleven years ago after suffering a severe stroke. His presence in my life is permanent and very intense whilst in Church. His attitude to life following his stoke, his perennial quest to find the joy of life, no matter what the obstacles, has inspired me. I rarely manage to get back to my seat following communion without a huge swell of emotion building up inside me and escaping as hot tears. I guess it is a bit like a valve releasing some of the pressure.
Just like my Dad used to say to my Mum who had been busy cooking at home whilst he took the seven of us off to Church, I say my usual "God Bless All Here" to Rolf who has been working hard finishing breakfast and getting the rooms in the B&B cleaned.
Becky arrived from BBC Radio Stoke and had a great time with Tilly in her bedroom making some recordings about Tilly's life and the many machines that she needs. I am so pleased that Tilly has grown so much in confidence and is able to manage these things without me. I did my recording bit with Becky and enjoyed a great chat about our visiting hedgehog and the badgers at school. Becky is such a delightful, interesting lady and Tilly thinks she's cool! I am looking forward to seeing more of her over the coming months, and it's great for the girls to have such positive role model.
The piano lessons went very well with Tilly being see-sawed on our portable ramp into the teacher's house. Candice is working towards Grade 3 and the teacher is about to make enquiries as to how Tilly can participate in the exam system. It's wonderful that they both enjoy and can play the piano, I really did believe that Tilly's only possible musical experience would be though singing.
Rolf treated us to a sumptuous Sunday roast pork dinner with all the trimmings. The evening's further highlight was us all snuggled up on the couch watching Strictly and X Factor. It is a rare treat for Tilly to leave her chair and a great opportunity for a her to have a cuddle with Daddy and for me to snuggle with Candice. Close, physical contact is difficult for Tilly to achieve whilst sitting in a twenty stone powered wheelchair, and she is unable to reach out and touch others. Tilly very often asks 'put my arms around you' which leaves me burying my face in her warm little neck and fighting back the tears.
Tilly's night was rather troubled by bad dreams and lots of secretions that needed to be removed with the suction unit from her mouth. No doubt, Tilly is anxious about going to have her pamidronate infusion after school tomorrow at the North Staffs Hospital. It involves putting a bone strengthening drug into her system via a cannula into her vein. Tilly knows that historically the Doctor has a great deal of trouble finding her vein and it can be incredibly painful to insert the needle for the cannula. It really does fill her with dread. I remember once when she had to have one in Wales following an aspirated pneumonia she said tearfully to the Doctor who was frantically looking for a vein "It's like brown bread - I don't really like it, but I know that it's good for me" The poor chap was crushed! Well, Tilly has grown to like brown bread very much, and may be she will be able to tolerate the needles one day? It certainly has not got any easier as time has gone on and my stomach is in a knot at the thought of what she will go through.
Monday morning was the usual organised chaos to get out of door ready for school by 0815. It was my day to look after the rooms at the B&B today whilst Rolf went out shopping for us. I rather enjoy 'doing the U Bends' as it is a chance to listen to the Beeb and organise my thoughts. I also love to stop and be with the poosies, Vienna and Venice, a mother and daughter who have decided to live with us, and have taken up residence in the garden. They have a lovely calming influence on me, and they are so beautiful. We all adore them and can't imagine life without them. They jump up onto the bench so that Tilly can stroke them too.
Managed a quick lunch with Rolf who is now busy doing the ironing. Before Tilly left this morning she said that she would not think at all about the infusion until she got to the hospital - I hope that she has managed this as I have not. I can't wait for it to be over for her. I must remember to take one of Tilly's monitors into hospital for servicing as it is not working very well. The hospital are brilliant at looking after Tilly and all her needs - we are very lucky.
We belong to St Edwards Church in Cheddleton and feel very blessed to be part of such a loving family and privileged to meet up in such a spectacular location. We skidded in, late as usual, and were greeted by warm and friendly smiles from a group of people we have come to love and care about, who so openly love and care for us. I appreciate the opportunity to stop, be quiet and to reflect that Church gives me, and I am so pleased that the girls feel so at home there too. I always feel incredibly close to my lovely Dad who died eleven years ago after suffering a severe stroke. His presence in my life is permanent and very intense whilst in Church. His attitude to life following his stoke, his perennial quest to find the joy of life, no matter what the obstacles, has inspired me. I rarely manage to get back to my seat following communion without a huge swell of emotion building up inside me and escaping as hot tears. I guess it is a bit like a valve releasing some of the pressure.
Just like my Dad used to say to my Mum who had been busy cooking at home whilst he took the seven of us off to Church, I say my usual "God Bless All Here" to Rolf who has been working hard finishing breakfast and getting the rooms in the B&B cleaned.
Becky arrived from BBC Radio Stoke and had a great time with Tilly in her bedroom making some recordings about Tilly's life and the many machines that she needs. I am so pleased that Tilly has grown so much in confidence and is able to manage these things without me. I did my recording bit with Becky and enjoyed a great chat about our visiting hedgehog and the badgers at school. Becky is such a delightful, interesting lady and Tilly thinks she's cool! I am looking forward to seeing more of her over the coming months, and it's great for the girls to have such positive role model.
The piano lessons went very well with Tilly being see-sawed on our portable ramp into the teacher's house. Candice is working towards Grade 3 and the teacher is about to make enquiries as to how Tilly can participate in the exam system. It's wonderful that they both enjoy and can play the piano, I really did believe that Tilly's only possible musical experience would be though singing.
Rolf treated us to a sumptuous Sunday roast pork dinner with all the trimmings. The evening's further highlight was us all snuggled up on the couch watching Strictly and X Factor. It is a rare treat for Tilly to leave her chair and a great opportunity for a her to have a cuddle with Daddy and for me to snuggle with Candice. Close, physical contact is difficult for Tilly to achieve whilst sitting in a twenty stone powered wheelchair, and she is unable to reach out and touch others. Tilly very often asks 'put my arms around you' which leaves me burying my face in her warm little neck and fighting back the tears.
Tilly's night was rather troubled by bad dreams and lots of secretions that needed to be removed with the suction unit from her mouth. No doubt, Tilly is anxious about going to have her pamidronate infusion after school tomorrow at the North Staffs Hospital. It involves putting a bone strengthening drug into her system via a cannula into her vein. Tilly knows that historically the Doctor has a great deal of trouble finding her vein and it can be incredibly painful to insert the needle for the cannula. It really does fill her with dread. I remember once when she had to have one in Wales following an aspirated pneumonia she said tearfully to the Doctor who was frantically looking for a vein "It's like brown bread - I don't really like it, but I know that it's good for me" The poor chap was crushed! Well, Tilly has grown to like brown bread very much, and may be she will be able to tolerate the needles one day? It certainly has not got any easier as time has gone on and my stomach is in a knot at the thought of what she will go through.
Monday morning was the usual organised chaos to get out of door ready for school by 0815. It was my day to look after the rooms at the B&B today whilst Rolf went out shopping for us. I rather enjoy 'doing the U Bends' as it is a chance to listen to the Beeb and organise my thoughts. I also love to stop and be with the poosies, Vienna and Venice, a mother and daughter who have decided to live with us, and have taken up residence in the garden. They have a lovely calming influence on me, and they are so beautiful. We all adore them and can't imagine life without them. They jump up onto the bench so that Tilly can stroke them too.
Managed a quick lunch with Rolf who is now busy doing the ironing. Before Tilly left this morning she said that she would not think at all about the infusion until she got to the hospital - I hope that she has managed this as I have not. I can't wait for it to be over for her. I must remember to take one of Tilly's monitors into hospital for servicing as it is not working very well. The hospital are brilliant at looking after Tilly and all her needs - we are very lucky.
Sunday, 27 September 2009
Peter Pan's Birthday Party
Deep Joy! Saturday means that I don't have to get up at 0500. Helped Rolf with the breakfasts at the B&B, Candice was up early doing her homework and Tilly snoozed till 1000! Bless her, she must have needed it with the hectic events of last week. Following a leisurely family breakfast us girls set off to the Peter Pan Nursery for Special Needs (based in Newcastle under Lyme) 40ieth Birthday Party. This amazing Nursery was set up by three mothers with children with disabilities and they took it in turns to mind the children while one of them had a couple of hours to themselves. This concept grew into the most wonderful setting supporting families such as ours from birth. I treasure my memories of Peter Pan and will be forever grateful for their nurturing warmth and care they showed us all at the point of Tilly's diagnosis when she was just over one year's old. Rolf and I were shell-shocked at the news, unsure of how to navigate our way through this new dimension of special needs, and Peter Pan played a vital role in guiding us on our way. I wrote a piece of writing that described what they meant to us that they used on their literature - I wonder if they still refer to it?Clearly we are not the only family touched by this magical nursery as the party was filled with families like ours, all paying homage to 40 years of outstanding work. It was really special for me to be with the staff again, I felt very emotional as I remembered how they held me and my little girls in their arms to support and reassure us and now here we were nearly nine years on smiling and confident, happy in the world that they introduced us to.I met up with old friends, made some new ones and noticed how the cycle continues with new babies and their families just starting out on their journeys. I recommended to a young family to approach Treetops and Horton Lodge School for Parents as they also had a huge impact on our family. I feel so blessed that these people were there for us, I am not sure that other counties are so lucky and we wouldn't have managed without them.After the bash we spun up to Hanley and Tilly picked out an outfit from "Primarni" in preparation for her visit to Downing Street on 7th October. We came home to a pile of freshly ironed laundry, and the delicious aromas of Fajitas! I just love that boy! We spent a heavenly evening having tea like a proper family for once and watching Strictly and X Factor. Life gets better and better!
Saturday, 26 September 2009
Mummy's first (rather lengthy) blog
I thought I’d start my Blog with a review of the week that was. As far as the Griffiths’ Clan are concerned, most weeks are busy but this last week has been particularly packed.
Last Friday I attended a meeting to look at the Aiming High for Disabled Children programme which is a Government Grant to really make a difference to families such as ours by offering supported activities. I went along as Secretary of Rudyard Sailability, hoping to offer sailing opportunities to children in Staffordshire, and as the mother of two children. Tilly is nine and lives with Spinal Muscular Atrophy – a neuro-muscular condition resulting in profound muscle weakness. Tilly uses a finger-tip controlled powered wheelchair and lifting equipment and relies upon nightime ventilation and a whole range of other machines to support her breathing. Candice is eleven, and she too lives with Tilly’s diagnosis, as a sibling of a child with special needs, but does not need any specialist medical equipment, but a careful eye to ensure that her needs are not swamped by her sister’s.
I gave a presentation along with another parent based on “Welcome to Holland” a bit of prose that describes how a family with a disability are like a family who have planned to go to Italy and then find out that they are actually on a flight going to Holland, and will never get a chance to get to Italy. It seems that this is the view taken by many people in the world of special needs (professionals and families) that some how it is OK to accept that we will never have the same opportunities of the able-bodied world and that we have to ‘live with it’. I explored the analogy further saying that of course not all families arrive safely in Holland – some feel that they have crash landed; others can’t understand the cabin crew announcement and are completely bewildered and confused and never make it out of the arrival hall; and others never actually land anywhere and circle round and round in an eternal holding pattern. The bottom line of the talk was that our children are not aware of this analysis and naively believe that the entire world of opportunity is open to them. Tilly told me of a dream where Candice was “in Italy” and asked me when she could go and I realised that we could go, with the right support we could do anything. We’ve just got to Aim High! Everyone seemed to appreciate our Talk. I appreciated the lift with the Special Matters Team (a local parenting group for families with children with special needs), the lunch and the chance to catch up with folk.
Last Friday after school the girls went to Chess Club and then we went off to swimming where Ellen comes along and helps get Tilly showered and hair washed and it was home for ‘tea like a proper family for once’. Delicious!
Last Saturday was interesting. Tilly spent the day with Ellen helping out with a Caudwell Children’s Monkey March at Trentham Gardens. I took Candice over to Rudyard Lake where we had a large group from the “Williams’ Syndrome” over for a Family Fun Day. Both events were terrific and the girls managed their independent roles brilliantly – it is a happy/sad feeling to see them both confident without me. Another scrumptious tea ‘like a proper family for once’ and we caught up with the box – Strictly Come Dancing and The X Factor.
Piano lessons for both girls on Sunday morning at the Teacher’s house down the road. Tilly goes in first and Candice and I sat in the van and caught up on homework and emails. I never dreamt Tilly would be able to access the piano, and she has proved me wrong – one of many activities that I thought would be out of her reach. Tilly was not born with a ‘shame I can’t do that bone’, she was born with a ‘how can I do that bone?’ The fun part is finding a way whether it be dancing, skiing, sailing, abseiling, caving, etc, etc
Candice read at Church – a packed service with Baptisms with the sun streaming in through the ‘Angel’ Window. Fabulous! Just the boost needed to get through another week. We skidded home to a Rudyard Sailability update with various members of the Group. We’ve got a meeting with British Waterways next Tuesday where we are hoping for a Lease for a new building at the Lake to support our activities. Incredibly, we have been fighting for five years for this facility so let’s hope we will have a positive result.
Whizzed back after dropping the girls off for school – such a great feeling to be dropping them off together at the same setting. St Edward’s Junior High in Leek has done an amazing job making the school accessible for Tilly and other wheelchair users. St Edward’s First School in Cheddleton set a high standard of inclusion which the Junior High and Westwood College are following. What enlightened times we live in, I will be eternally grateful for the work by so many that has gone into Tilly’s education.
Had a meeting in the day with BBC Radio Stoke and The Donna Louise Hospice (Treetops) where we talked about the radio station following Tilly for a year, capturing the variety of activities that occur around such a little girl. We also decided to set up this Blog which the Griffiths gang will all chip in to from time to time.
Monday night was spent with Tilly in PICU (Paediatric Intensive Care Unit) on a Sleep Study. Tilly loved it as it did not involve any needles – just lots of monitoring machines, being filmed whilst she slept and a chance to catch up with her friends at the hospital. Another group of professionals who have done an amazing job for Tilly, which is great as it would be a nightmare if she didn’t love going to hospital.
We were up early Tuesday to get Tilly into school with Candice. I spent the day at the Caudwell Children’s office trying to be of some help by doing some administration work for them. They are busy planning for this year’s Destination Dreams holiday to Florida – such a big project and so amazing. We went last year and still talk about the trip most days. The girls are determined to go back as volunteer helpers when they are old enough. We stayed at a special village called Give Kids the World where the magic is amazing.
Tilly goes swimming at in the warm pool at Horton Lodge after school with other children with physical disabilities who are included in the mainstream educational system. It is run by the Physios and is a useful and lovely opportunity for us all. Candice did cross Country during this time and then we met up and went to Rudyard Lake sailing. Ellen came too which made it all possible and then she came home and helped get Tilly into bed. Amazingly we all go fed at various points and Rolf kept the B&B running. We were treated to a visit from a member of the CAST team this night. This is a NHS service that offers support to families with a ventilated child. Eileen arrived at 10 pm – we chatted for an hour and then I went to bed knowing that Eileen was on watch and seeing to Tilly’s various needs overnight. Another great tonic which does so much to recharge the batteries.
On Wednesday I went to a great coffee morning at newly refurbished Meadows School in Leek. Special Matters had booked the ‘bungalow’ which was perfect. There was a great buzz in the room and a collection of familiar faces along with some new ones. Let’s hope that it was helpful as well as enjoyable. I know that I found a great deal of comfort knowing that I was not alone in the world of special needs and learnt all the best bits at such meetings.
After school Wednesday was mad. I had a Governors’ Meeting, Candice had a netball match, Tilly had a meeting with Becky, the reporter from BBC Radio Stoke and then the girls had Brownies and Guides to get to later on! With the help of Pauline (another of Tilly’s Personal Assistants), and another kindly Mum from school, everything fell into place. Once again, miraculously, we found time to eat at various times and Rolf kept the B&B afloat.
Thursday was another ‘dog on lino’ sort of day with Tilly going swimming with the school for the first time with the school. Everyone had worked hard behind the scenes to make this a success, which it was in spite of the mini-bus not arriving. Fortunately I was on hand with our vehicle to scoop her up and was delighted to hear that Tilly will be included in the ‘Goldfish’ swimming group with her peers in future. Mission accomplished!
Rolf and I whizzed off for a celebration event at the Britannia Stadium. We were guests of CAST as we had been involved in some filming to support their presentation. It was a great occasion with lots of community teams celebrating their achievements. We all adore the CAST team and it was a privilege to be with them to show our support of their great work.
It was then a dash back to school to ferry Tilly up to hockey club at Westwood College. (Candice walked up with her friends and of course Tilly would like to walk up under her own steam in future). Ellen supported this activity and I went back to school for a Governor’s meeting. During this meeting I remembered that I was supposed to have given my apologies for a Governors’ meeting at the First School. I feel bad not to have done this and must contact them and ask their forgiveness. I really do miss them all as they were all such a big part of our lives and now we’ve moved on to the next setting which is so completely absorbing. Tilly loved hockey and now would like an astro-turf style garden! We then went for tea at Brough Park and I whizzed Candice over the Miss Jeanette’s for her dancing lesson. Home again with Ellen to help get Tilly into bed and Rolf went out to do some shopping and bring Candice home. Rolf and I had ‘Pizza on the Couch’, which is a Thursday night tradition, and one that I really look forward to.
Had to get Candice up really early on Friday morning as she had homework to give in that she had no time to do the night before. We also had to find outfits and phrases for a special “Languages” celebration at school. Tilly went as an Arabian Princess and Candice went as a Native American Indian.
I then went to give a “Talk” as a service user of the Rowan Organisation – a group that supports people who use Direct Payments. It was a celebration of their tenth year doing great work, and I certainly can’t imagine how our lives would run without direct payments.
Friday afternoon it was spent organising a trip to Downing Street and some filming as Tilly is a finalist in Channel Five News “Britain’s Kindest Kid”. The girls went to Chess and then we went straight home as Tilly’s swimming lesson had been cancelled as the teacher has a cold and does not want to pass it on to Tilly. Ellen came over to help with Tilly and then we all had tea ‘like a proper family for once’.
Last Friday I attended a meeting to look at the Aiming High for Disabled Children programme which is a Government Grant to really make a difference to families such as ours by offering supported activities. I went along as Secretary of Rudyard Sailability, hoping to offer sailing opportunities to children in Staffordshire, and as the mother of two children. Tilly is nine and lives with Spinal Muscular Atrophy – a neuro-muscular condition resulting in profound muscle weakness. Tilly uses a finger-tip controlled powered wheelchair and lifting equipment and relies upon nightime ventilation and a whole range of other machines to support her breathing. Candice is eleven, and she too lives with Tilly’s diagnosis, as a sibling of a child with special needs, but does not need any specialist medical equipment, but a careful eye to ensure that her needs are not swamped by her sister’s.
I gave a presentation along with another parent based on “Welcome to Holland” a bit of prose that describes how a family with a disability are like a family who have planned to go to Italy and then find out that they are actually on a flight going to Holland, and will never get a chance to get to Italy. It seems that this is the view taken by many people in the world of special needs (professionals and families) that some how it is OK to accept that we will never have the same opportunities of the able-bodied world and that we have to ‘live with it’. I explored the analogy further saying that of course not all families arrive safely in Holland – some feel that they have crash landed; others can’t understand the cabin crew announcement and are completely bewildered and confused and never make it out of the arrival hall; and others never actually land anywhere and circle round and round in an eternal holding pattern. The bottom line of the talk was that our children are not aware of this analysis and naively believe that the entire world of opportunity is open to them. Tilly told me of a dream where Candice was “in Italy” and asked me when she could go and I realised that we could go, with the right support we could do anything. We’ve just got to Aim High! Everyone seemed to appreciate our Talk. I appreciated the lift with the Special Matters Team (a local parenting group for families with children with special needs), the lunch and the chance to catch up with folk.
Last Friday after school the girls went to Chess Club and then we went off to swimming where Ellen comes along and helps get Tilly showered and hair washed and it was home for ‘tea like a proper family for once’. Delicious!
Last Saturday was interesting. Tilly spent the day with Ellen helping out with a Caudwell Children’s Monkey March at Trentham Gardens. I took Candice over to Rudyard Lake where we had a large group from the “Williams’ Syndrome” over for a Family Fun Day. Both events were terrific and the girls managed their independent roles brilliantly – it is a happy/sad feeling to see them both confident without me. Another scrumptious tea ‘like a proper family for once’ and we caught up with the box – Strictly Come Dancing and The X Factor.
Piano lessons for both girls on Sunday morning at the Teacher’s house down the road. Tilly goes in first and Candice and I sat in the van and caught up on homework and emails. I never dreamt Tilly would be able to access the piano, and she has proved me wrong – one of many activities that I thought would be out of her reach. Tilly was not born with a ‘shame I can’t do that bone’, she was born with a ‘how can I do that bone?’ The fun part is finding a way whether it be dancing, skiing, sailing, abseiling, caving, etc, etc
Candice read at Church – a packed service with Baptisms with the sun streaming in through the ‘Angel’ Window. Fabulous! Just the boost needed to get through another week. We skidded home to a Rudyard Sailability update with various members of the Group. We’ve got a meeting with British Waterways next Tuesday where we are hoping for a Lease for a new building at the Lake to support our activities. Incredibly, we have been fighting for five years for this facility so let’s hope we will have a positive result.
Whizzed back after dropping the girls off for school – such a great feeling to be dropping them off together at the same setting. St Edward’s Junior High in Leek has done an amazing job making the school accessible for Tilly and other wheelchair users. St Edward’s First School in Cheddleton set a high standard of inclusion which the Junior High and Westwood College are following. What enlightened times we live in, I will be eternally grateful for the work by so many that has gone into Tilly’s education.
Had a meeting in the day with BBC Radio Stoke and The Donna Louise Hospice (Treetops) where we talked about the radio station following Tilly for a year, capturing the variety of activities that occur around such a little girl. We also decided to set up this Blog which the Griffiths gang will all chip in to from time to time.
Monday night was spent with Tilly in PICU (Paediatric Intensive Care Unit) on a Sleep Study. Tilly loved it as it did not involve any needles – just lots of monitoring machines, being filmed whilst she slept and a chance to catch up with her friends at the hospital. Another group of professionals who have done an amazing job for Tilly, which is great as it would be a nightmare if she didn’t love going to hospital.
We were up early Tuesday to get Tilly into school with Candice. I spent the day at the Caudwell Children’s office trying to be of some help by doing some administration work for them. They are busy planning for this year’s Destination Dreams holiday to Florida – such a big project and so amazing. We went last year and still talk about the trip most days. The girls are determined to go back as volunteer helpers when they are old enough. We stayed at a special village called Give Kids the World where the magic is amazing.
Tilly goes swimming at in the warm pool at Horton Lodge after school with other children with physical disabilities who are included in the mainstream educational system. It is run by the Physios and is a useful and lovely opportunity for us all. Candice did cross Country during this time and then we met up and went to Rudyard Lake sailing. Ellen came too which made it all possible and then she came home and helped get Tilly into bed. Amazingly we all go fed at various points and Rolf kept the B&B running. We were treated to a visit from a member of the CAST team this night. This is a NHS service that offers support to families with a ventilated child. Eileen arrived at 10 pm – we chatted for an hour and then I went to bed knowing that Eileen was on watch and seeing to Tilly’s various needs overnight. Another great tonic which does so much to recharge the batteries.
On Wednesday I went to a great coffee morning at newly refurbished Meadows School in Leek. Special Matters had booked the ‘bungalow’ which was perfect. There was a great buzz in the room and a collection of familiar faces along with some new ones. Let’s hope that it was helpful as well as enjoyable. I know that I found a great deal of comfort knowing that I was not alone in the world of special needs and learnt all the best bits at such meetings.
After school Wednesday was mad. I had a Governors’ Meeting, Candice had a netball match, Tilly had a meeting with Becky, the reporter from BBC Radio Stoke and then the girls had Brownies and Guides to get to later on! With the help of Pauline (another of Tilly’s Personal Assistants), and another kindly Mum from school, everything fell into place. Once again, miraculously, we found time to eat at various times and Rolf kept the B&B afloat.
Thursday was another ‘dog on lino’ sort of day with Tilly going swimming with the school for the first time with the school. Everyone had worked hard behind the scenes to make this a success, which it was in spite of the mini-bus not arriving. Fortunately I was on hand with our vehicle to scoop her up and was delighted to hear that Tilly will be included in the ‘Goldfish’ swimming group with her peers in future. Mission accomplished!
Rolf and I whizzed off for a celebration event at the Britannia Stadium. We were guests of CAST as we had been involved in some filming to support their presentation. It was a great occasion with lots of community teams celebrating their achievements. We all adore the CAST team and it was a privilege to be with them to show our support of their great work.
It was then a dash back to school to ferry Tilly up to hockey club at Westwood College. (Candice walked up with her friends and of course Tilly would like to walk up under her own steam in future). Ellen supported this activity and I went back to school for a Governor’s meeting. During this meeting I remembered that I was supposed to have given my apologies for a Governors’ meeting at the First School. I feel bad not to have done this and must contact them and ask their forgiveness. I really do miss them all as they were all such a big part of our lives and now we’ve moved on to the next setting which is so completely absorbing. Tilly loved hockey and now would like an astro-turf style garden! We then went for tea at Brough Park and I whizzed Candice over the Miss Jeanette’s for her dancing lesson. Home again with Ellen to help get Tilly into bed and Rolf went out to do some shopping and bring Candice home. Rolf and I had ‘Pizza on the Couch’, which is a Thursday night tradition, and one that I really look forward to.
Had to get Candice up really early on Friday morning as she had homework to give in that she had no time to do the night before. We also had to find outfits and phrases for a special “Languages” celebration at school. Tilly went as an Arabian Princess and Candice went as a Native American Indian.
I then went to give a “Talk” as a service user of the Rowan Organisation – a group that supports people who use Direct Payments. It was a celebration of their tenth year doing great work, and I certainly can’t imagine how our lives would run without direct payments.
Friday afternoon it was spent organising a trip to Downing Street and some filming as Tilly is a finalist in Channel Five News “Britain’s Kindest Kid”. The girls went to Chess and then we went straight home as Tilly’s swimming lesson had been cancelled as the teacher has a cold and does not want to pass it on to Tilly. Ellen came over to help with Tilly and then we all had tea ‘like a proper family for once’.
Thursday, 24 September 2009
Tilly's first swimming lesson since joining the middle school.
Wheelchair accessible bus failed to turn up. Never mind, Mummy came to the rescue.
Swimming pool appear to have a problem with letting Tilly access the pool despite the fact that she has been using the very same pool for several years now and can swim 100m.
All to do with risk assessments apparently.
Hopefully it will all be sorted by next week.
Wheelchair accessible bus failed to turn up. Never mind, Mummy came to the rescue.
Swimming pool appear to have a problem with letting Tilly access the pool despite the fact that she has been using the very same pool for several years now and can swim 100m.
All to do with risk assessments apparently.
Hopefully it will all be sorted by next week.
Wednesday, 23 September 2009
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