Rest in Peace Archie

The sad news came yesterday that Archie Battersbee had died after his life support equipment was withdrawn, and my heart goes out to his grieving family and friends. I have followed this news story closely and have agonised for the family at every twist and turn. It became clear that the end was close and I hope now that his parents can finally find some peace and some comfort, knowing that they did everything that they could for their son. They fought tooth and nail at every level of the courts, to save their unconscious son, to give him more time to recover, but it was not to be. Medical opinion was stacked against their blind love for Archie and so in the end, they had to admit defeat and let him go.

I know that in the same situation, I would fight the same battles that his mother fought; I too would escalate my fight to every level of court possible and I would argue with her same passion. She has lost the most precious thing in her life and so her determination would know no bounds. I too have fought for Joshua, not in such a ‘life and death’ way but I have been driven to go to tribunal to change Joshua’s special school, to ensure he had the best continence products and our current challenge, to resume some kind of respite. None of these battles can compare with fighting the Doctors who wish to remove life support, I realise that, but I recognise her single minded passion, her refusal to back down and her need to speak out for her mute son.

I am however concerned for his parents now : how do they resume their lives without 12 year old Archie in their family? Having lived at hospital since April, how do they pick up the pieces of their broken lives and continue living? How do they un-see the horrors that they will have seen in hospital? I hope that they are simply relieved to be out of the media spotlight now and that they can grieve, and try to recover, in peace. They will be physically and emotionally exhausted, so will need time to heal and share stories about Archie in the comfort of their own family. I have only slept by Joshua’s bedside in hospital for a maximum of two weeks in his life, and I know how disorientating that is : you lose all sense of time and of the outside world, the ward becomes your life and the hospital routines guide each day. So to be in intensive care for so many months, must be so much worse and they will require a kind of decompression chamber, like divers need when they come up to the surface of the sea.

I suspect Hollie Dance will not be able to let this lie, once she has mourned her son. She has been his voice for so long so has been immersed in the media. I predict that she will re-appear as a human rights campaigner, powered by her grief and passion for her son. She will have pent up energy to put towards a new cause perhaps, no that her son no longer needs her to fight for him. It will take time for her to heal and be able to speak calmly about Archie, but she is a strong lady and she will recover. To lose your child, in any circumstances, must be heart-breaking and must be something that a parent never truly heals from ; but Archie’s avoidable death must be so much worse to tolerate as the ‘what ifs?’ and ‘if onlys’ will plague his parents for years to come.

Rest in Peace Archie xx

Grieve in peace Archie’s parents xx

Day 5 : Holiday Fun & Games

Yesterday started off perfectly : I woke early and so I left the house on my dog walk at 5.45, in time to see the sun rising and the sky was spectacular. The sun was peeping out as we set off along the beach and as it rose, it gave the sky a golden glow which I was able to capture in a photograph. We walked along the beach and then up a hill at the end of the beach to the summit. I sat at 6.45 at the place where my parents ashes are scattered, soaking in the view and bringing them up to date on recent events. It was so peaceful up there. Reluctantly we walked down the hill again, by which time the world was starting to wake up so the beach was busier with dog walkers. I took the dogs home and quickly changed into my swimming costume, and went back down to the beach for a dip in the sea that had been calling me all morning. It was refreshing and clear, I swam around for about ten minutes and then returned home to make breakfast.

I was in the kitchen when I heard my husband call out : Joshua had got out of bed but had fallen into the bedside table with seizures, sending the lamp flying across the room. He was twitching in the corner when I got there and the seizures had made him soil himself too. So it was a grim scene that greeted me and all the good effects of the walk, sunrise and swim, soon disappeared. We helped him up and I cleaned him up, and got him back into bed. I gave him his porridge and medication, hoping that would stops the seizures, but as they continued, it was clear that I needed to administer his rescue medication as they were not stopping on their own. I gave him Midazolam and read him his favourite story while we waited for it to take effect, and slowly the twitching stopped and he relaxed into his pillow.

We then knew that we were in for a quiet day in the house, while he recovered. So my husband went out to the shops to buy me some holiday postcards to write and I sat in the sunny garden writing them, as Joshua slept. Later my husband went back to the shops to buy some fresh bread so that we could have sandwiches for lunch. A wobbily Joshua joined us for a late lunch and then he dozed on the settee. It was 5pm before he perked up enough for us to go down to the beach with the dogs. We had a cup of tea and toasted teacake at the beach café before the swim as he was closing really, then Joshua lay on the rug on the sand while my husband and I swam in the warm sea, encouraging each dog to join us one at a time. It was great fun and we stayed there for about an hour in the end.

As we were walking home, we were debating whether to get a takeaway for tea and we stopped at a bar, overlooking the beach, for a drink in the sunshine. We must have been quite a sight as we walked through the bar to the terrace, with four wet and sandy dogs . It was quite a challenge to tie all of the dogs up securely and then to thread Joshua’s long legs into the picnic bench but he was happy to be there. We decided to eat there again, and as Joshua was still recovering I ordered him a small fish goujons. It was enormous fish and chips when it arrived and he was clearly hungry as he ate every scrap of it, feeding himself, allowing me to focus on my vegetable curry, which was delicious too.

So after a beautiful start to the day, it went seriously downhill from mid morning, but it definitely picked up again by the evening, so all was not lost. Epilepsy, we will not let you spoil our holiday!

Benefit of the Doubt

I caught the second half of an ITV documentary last night about the cost of ‘invisible disabilities’ and it was fascinating but depressing at the same time. Adults who suddenly found themselves disabled, due to accidents or illness primarily, were having to apply for disability benefits for the first time as they were no longer able to work. They were talking about how depressing the application form for Personal Independence Payments (PIP) is as it focuses on all areas of life asking how much help you need and highlights how much they are no longer able to do for themselves. These were people who had been able bodied but no longer were and they had the capacity to complete the paperwork themselves, they felt humiliated by the process. Once completed, the form is allocated points to asses the level of disability and one lady , having gone through the ‘humiliation’ of completing the form, was then mortified to learn that she was not disabled enough to qualify!

When Joshua was born, both my husband and I were working full time, and so we had no experience of the benefits system. It was the Health Visitor who told me to apply for Disability Living Allowance (DLA) for Joshua. I told her that we were financially secure and did not need the money but she insisted that it was Joshua’s right and that I should make the application. She warned me that the application form was grim to complete and advised me to sit, with a glass of wine, complete it thinking of his worst ever day, seal it up in an envelope and never think about it again. Minus the glass of wine, that it what I did and it went against the grain; the emphasis of the form is all about what my son could not do for himself and my outlook has always been to celebrate the positives and achievements, but there was no room for that outlook on this form. We were granted DLA immediately and it went into his savings account to buy big items, like off-road wheelchairs over the years.

When Joshua turned 16, his DLA stopped and instead we had to complete an even more daunting form to apply for PIP in its place. The Department of Work & Pensions (DWP) insisted on writing to Joshua in his own name and were keen to speak to him on the telephone too and were suspicious when I explained that he could not read or talk on the telephone, but that I was acting as his Deputy. They insisted on meeting us both at school one morning to prove that Joshua did not have the capacity, as I had described it and that assessment process took one minute in school reception. I resented the assumption that I was making this up just to squeeze money out of DWP, but I guess fraud must be widespread.

The PIP form divides up his life into a wide range of categories, such as feeding, sleeping, hygiene, road safety etc, asking in detail for how many hours a day Joshua needs help with each aspect of his life. Like DLA, this is a sobering form to complete as it is lengthy and at the end of it, you are left feeling that Joshua has no independent value at all, despite striving all of his life to give him as much of it as possible. Once again, Joshua was allocated points for each area where he needs assistance and one Council employee who saw his assessment told my husband that he had never seen anyone with as many points as Joshua had! Consequently we were granted PIP, both the independent living and the mobility component – we have a Motability car now using the mobility part of the benefit to fund an estate car with a big enough boot for his wheelchair.

I was advised at school that as Joshua would never have the capacity to work, he should also be in receipt of Employment Support Allowance (ESA) which required written statements from school and his GP to state that he did not have the capacity for employment. Joshua clearly qualified for this benefit too, which helpfully gives him his monthly prescriptions free.

Since I retired last Autumn, I was able to apply for Carers Allowance too, which gives me £70 each week because I care for Joshua more than 35 hours per week. During the pandemic I was caring for him 24/7, but now we have daycare three days a week, there are some breaks in my caring role, but even so, it way exceeds the minimum of 35 hours. As an hourly rate of pay, Carers Allowance is an insult but I choose to consider to be a contribution towards my caring role rather than a salary.

My outlook towards benefits has changed over the years : as I said, we are financially secure and so do not rely upon the benefits, but I now I agree that they are something that Joshua is entitled to and so I am willing to fight to ensure that he receives everything that he deserves. We tend to use his benefits to buy ‘luxuries’ for him that we might otherwise think twice about; we are on the look out for a bike adaptation that would enable him to safely and comfortably come cycling with us. With years of practice, I am now able to complete the renewal paperwork without emotion when it comes, but I could relate to the humiliated disabled people that I saw on last night’s documentary. Thankfully Joshua does not have capacity to understand what I have written about him, or else he might consider me to be disloyal and pessimistic about his abilities, but so long as he has the funds to buy him pub lunches and pay for the dodgems on his holidays, that is all he cares about really.

Birthday Treat

Those of you who are regular readers of this blog will know the fight that we have been having for respite for a year now : Joshua is funded to have one weekend in respite every month, but he has not been in receipt of that service since February 2020. Covid meant that his respite provision closed in lockdown, which was fine with us as we would not have sent him then anyway, the same as we shielded him from school. But it meant that in March 2020, we lost school, Yorkshire Grandma who was shielding and his respite service all at the same time and the onus was totally on us, his parents, for two full years, 24/7. But from this time last year, I asked them to book him in again, as I originally wanted him to resume familiar respite , before he accessed daycare. However, they have had a staffing crisis, having lost staff during the pandemic, they have not been able to recruit to social care and so have had insufficient resources so could not take Joshua for his overnight stays. I have been in regular contact with the manager throughout the last 2.5 years, and while very apologetic, her hands have been tied. I tried to make it easier for her to accommodate him by saying that we would be happy with a single night and that it could be any night of the week, it was not necessary for it to fall at a weekend, now that we are both retired.

I have now heard that she is planning on offering us one night, on Friday 30th September, so he would go after daycare and we would collect him some time on the Saturday. After all this time I was thrilled to be offered anything at all, but the date is just perfect : it is my birthday on 28th and my husband’s on 1st October, so we will be able to go out for a birthday meal while he is being taken care of. I emailed back immediately to accept and now I just hope that all of her plans now come to fruition.

As it will have been a full two and a half years since he last stayed with them, and they will have had staffing changes during that time, we are talking about him going for an afternoon familiarisation first of all, sometime in September, rather than returning straight back to an overnight stay. We are lucky that Joshua is pretty laid back and so I will expect him to embrace the change and enjoy the new experience.

You may also recall that, in frustration at the lack of respite from this provider, our Social Worker had encouraged us to look at another, in our home town, as an alternative. I wrote about our experience of two cancelled appointments and then the fact that it is a nursing home with the majority being permanent residents, that also offers some respite. I emailed them in the middle of July with concerns about their lack of transition visits and the fact that they would not assign particular staff to Joshua during his stays. I have heard nothing back since that email over three weeks ago now. Last time their lack of response was blamed on a Covid-19 outbreak, this time I have been told that they have been on holiday, but their lack of responsiveness adds to the doubts about their service that I already have. So I am delighted that it looks like his original respite might be coming good just in time.

My best friend has kindly been having Joshua overnight at her house once a month, while we have had no formal respite, and it is clear that he loves going to stay. So I told her that as our respite was coming back on stream hopefully, it meant that her and her family were ” off the hook” from next month. She replied that she liked being on the hook, so we shall see if his visits continue in the future, once we get to the Autumn. He is already booked in for a night later this month. My sister and brother in law also had him to stay last month, which went really well and Joshua certainly enjoyed his stay in their bungalow. So family and friends have done their best to plug our respite gap in the interim, meaning that I know we are a lot better off than some families. But the respite provision for children and adults locally is very scarce and so it is difficult to be granted, even though it can be a lifeline for exhausted, stressed families who simply need a short break. Our time without Joshua is not always used for treats such as nights or meals out, we can use the break to catch up on much-needed sleep or perhaps, as is happening next time, to have a meeting without worrying about getting back in time for when daycare closes.

So, fingers crossed that this date on 30th September can go ahead and happen and that it marks the resumption of a respite service that suited us all.

Day 3 : Holiday Fun & Games

Yesterday was a lovely day for several reasons :

  • It began well with a wonderful swim in the sea with 5 other mermaids at 7am. The sea was warm, clear and calm and we swam further than I have ever swum in the sea, round some buoys, so I was very pleased with myself. Ruby, our cocker spaniel, loyally sat on the shore waiting for me to get out and I had brought homemade cheese straws to share after our swim. We had definitely earned them.
  • I had time for a short walk with the dogs on top of the cliff above our town, where some of my parents ashes are scattered. So we walked to the spot and had a little word, admired the view then came back down again. We had the place virtually to ourselves and the views, despite the drizzle, were spectacular.
  • I was back in good time for my online appointment with a B&Q kitchen designer to discuss the changes that I would like to make to this kitchen, to bring it more up-to-date as we wish to replace the ancient gas cooker. The designer had some very clever software to enable him to make instant changes to the design in response to my reaction and it enabled me to visualise how it could look. I am still not sure whether to go ahead or not but it was a useful exercise to see what could be done.
  • I then walked into town to buy some breakfast goodies : fruit, yogurt, fresh bread and so we were ready to start the day, with Joshua finally waking up around 10ish. That suits me well as I have a few hours to myself and he is well rested, but it is not like the old days when he would sometimes sleep until after midday and so our holiday was disappearing before our eyes. After a bath, we were ready to head out on a day trip.
  • We went to Cowes to join the activities there for Cowes Week : the town was busy but we luckily managed to get a disabled cap parking space. We immediately stopped at a pub for a drink, while listening to a band playing. Then we found the inevitable scampi & chips for lunch – 2 portions between 3 of us and I think he let me have one scampi! – followed by a delicious crepe for pudding. We walked through the busy town to the sea front where a guitarist was playing and so we stopped for another drink, Joshua was entranced and very happy, so we stayed there for a while as my husband and I took it in turns to look at various stalls nearby. It was a happy afternoon.
  • We were all exhausted when we got back home and Joshua asked to go to bed for his nap, leaving me to doze on the settee. Unfortunately I had a rude awakening when he came down and sat on my head, as he was demanding something to eat! I made him a quick meal and the moment to nap was over. After he had eaten, he dozed on the settee allowing me time to make our evening meal all from home grown produce : we had a starter of corn on the cob from home, then runner beans with cheese on from my Aunt and Uncle’s garden and finally, I made a pudding of sponge on top of plums and blackberries brought from home.

So we had a good day from start to finish yesterday and I am hoping for another good one today , as I head out for my beach dog walk.

Happy Yorkshire Day

We are away on the South coast on holiday, but yesterday was Yorkshire Day when we were encouraged to celebrate all things Yorkshire, from the pudding to the terrier! We live and holiday in Yorkshire and although my husband and I are not natives, we have been made to feel welcome as we have lived there for 33 years now. Joshua on the other hand is Yorkshire born and bred. There are many things that I love about Yorkshire :

  • The variety of scenery and countryside across the large county is amazing : from the flat landscape where we live by the coast, to the stunning green hills of the dales where we holiday, it is all spectacular. There is still so much more of the county that we still have to explore but I feel very fortunate to have both the hills and coast on our doorstep to enjoy.
  • I love the ‘no nonsense’ outlook of Yorkshire people : they tend to be blunt and matter of fact, but they have a heart of gold once you break through the exterior. They have a really dry sense of humour that is unique to the locals from this county but they will help out of you are in trouble and will not make a fuss about it.
  • We went to a ‘Yorkshire Food & Drink Festival’ a couple of weekends ago, and it celebrated all that is good about home produce from Yorkshire. The quality of what is grown and created there is really high, so we are lucky enough to eat very well.
  • Yorkshire-people have a real sense of pride over where they come from, similar to the Scots’ patriotism. They are confident that they live in the best part of England and want to protect their own identity fiercely. When Scotland voted for independence from London, there was talk about Yorkshire wanting the same privilege. It can be regarded as the poor relation – is it really ‘ Grim up North’? – but I think we found out during the recent Lockdown, that those living in Yorkshire were much more fortunate than anyone struggling in London.

Joshua was born in Yorkshire and has always lived in the same house, which we will have lived in for 27 years this month. He certainly has the Yorkshire sense of humour and some of the words that he says, come out with a regional accent too.

The only downside for Joshua is sometimes that the health services and choice of schools and respite provision are poor compared to some wealthier areas of the UK. We have had to travel out of our Local Authority region for respite when he was a child, as there were no options locally. We travelled to Great Ormond Street hospital for specialist brain surgery, as we did not have sufficient faith in the Yorkshire-based options that we were offered in Leeds or Sheffield. The county does not always benefit from the same investment as other parts of the UK, often getting forgotten it seems.

But I thank Yorkshire for making us welcome and for letting us set up home there, so that we can enjoy all of the many benefits of this beautiful county.

Day 1 : Holiday Fun & Games

After a long day of travelling to get to our holiday destination, we always have a lazy first day to recover from so many hours in the car and we try to avoid getting in the car again on day 1. I started my day earlier than everyone else, with a beautiful beach walk at 6am, having the beach to ourselves, the dogs ran and ran and seemed to be smiling. When I got back from my refreshing walk, I locked the dogs away and walked to the supermarket for some fresh bread and fruit & yogurt for breakfast, walking back along the promenade, where I stopped to have a chat with my parents’ plaque.

Joshua did not emerge from his bedroom until after 10am and he immediately ate his Weetabix followed by some toast. Some days he is hungrier than others and it was clearly an eating day. We pottered about the house, with no real sense of urgency – that is what is so lovely about a holiday, we commit ourselves to very few deadlines so we can bumble along however the mood takes us, playing most things by ear.

Around 1pm, we decided to walk into the town together, so I got the wheelchair ready as it would be too far for Joshua to walk it. He was excited to be going out but kept repeating “car” as I was getting his splints and boots on, and I kept assuring him that we were walking! When we walked past the car on the drive, he was furious and made a fuss to get into the car. Again, I calmly told him that we were walking but he refused to sit in the wheelchair. Instead, I walked him up the hill to the High Street, and my husband followed with the empty wheelchair. Once we were out of the gate, Joshua was all smiles again and having hiked up the short hill, he relented and sat in the chair to be pushed. So, one battle won, 1:0 to me.

We walked down the High Street window shopping, until my husband started coughing and needed to buy a bottle of water. We were to wait for him outside and again , Joshua created a fuss that he wanted to be out of the wheelchair and waiting on a wooden bench instead. I relented here and helped him to get out and again, having won his way, he was all smiles again, watching the passers-by and traffic. One all! When my husband returned with his drink, Joshua would not get back into his chair, he insisted on pushing it and I told him that we were heading for a café on the beach. 2:1 to Joshua, he got his way and pushed the wheelchair, walking by my side.

Whenever we passed an establishment that looked vaguely like a café, he pulled to go inside and was stubborn on his feet so we had a couple of tussles as I wrestled him away from the doorways. I explained that we were going to the café on the beach and this was not it. 2:2 we had both won equal battles now and he happily walked further to the target destination. I got him out of his wheelchair and sat him at the table next to me, where he grumpily made requests for ‘juice’ and ‘crisps’. He was rewarded with a bottle of apple juice – 3:2 – but I refused to buy him crisps, as we had ordered him a portion of his favourite scampi & chips as it was now lunchtime – 3:3 we were even again. His face lit up when the food arrived and it was really delicious and he ate it all, with some help from his parents.

Joshua was happy to be wheeled back to the house, where with a full stomach and after that walking, he was ready to snuggle up for a nap on the settee and we stayed home for the rest of the day, pottering about unpacking clothes, doing some chores and watching some intermittent Lioness football – neither Joshua nor I are football fans but I did get swept up in the drama of this game and of course, the brilliant end result. We only really have battles when we are out and about, as at home he is more able to make his own choices as to where he goes and sits and what he chooses to do. Mainly when we are out and about , does he have to comply more mostly for his own safety, for our convenience and we make the choices on his itinerary. So we ended the day having won three small battles each, which is a good day. Although it can be frustrating, and sometimes exhausting when Joshua fights his own corner for what he wants, I have to remind myself how much better it is now that he has a voice and an opinion, rather than being passive and indifferent to whatever we choose for him to do.

There will be more battles ahead this holiday, but I will be ready for them and he will always be rewarded with some home-time where he can call more of his own shots.

The Friendship Tree

Yesterday was International Friendship Day and I wanted to pay tribute to all of my good friends as they make such a difference to my life. My best friend number 2, from High school days, gave me an analogy for friendship earlier this year and I loved it and wanted to share it here as she was so wise and it helped me a lot ,at the time:

I was told that relationships are like a tree , there are the friends and family that you can call at 4am and will drop everything  – they are the trunk. There are branches who are people who are close friends. There are friends who are friends because you met them at a group activity or school – they are the leaves that can fall away. Friends will move from one area to another and some will be replaced. It’s the way friendships grow and change and should never be taken personally.

I am lucky enough to have one tree trunk friend who I could call at any time of day or night, who would be there for me and would come to Joshua or me if we needed her. She even came once, without me asking. I was home alone with Joshua one night and he was having a bad bout of seizures and I was struggling. I sent her a message to tell her what was going on and half an hour later, she appeared at our door, with her enormous gentle giant Belgian Shepherd dog. She had recognised a friend in need and had not offered to come over, as I would have said no that I was fine, but she appeared and I was so grateful to see her and Buddy that night. The dog jumped onto Joshua’s bed and lay next to him, he sensed that Joshua was not well and tried to keep him calm, and she gave us both reassuring hugs. When she learned that we were not receiving regular professional respite, she offered to have Joshua for us, one night a month until it is resolved and that continues to be a generous lifeline. One time I was having a bad day at work and I was totally fed up and I texted my friend and asked her if she would run away with me in her motor home, so that I could escape. She did not ask why or try to solve my issues, she simply replied : I am packing my bags, will be there soon! It was the perfect response and made me smile; we both knew it was not happening, but the possibility that it could, was enough. That is a true tree trunk friend.

My friendship tree is blessed with many branches, close friends who I can call upon for support – maybe not at 4am or late at night, but I know they have my back and will support me when I need them and I feel the same about them. Two of them live in the USA and so dropping round is less practical, but they always respond with encouraging words when I need them. My first best friend lives in Texas and has been in Scotland, staying with her Mum, for the last 5 weeks but she flies home early next week. We had the best time visiting her recently , picking up the pieces of our long-distance friendship. There is something very special about having a friend who has known you for 50+ years. I know it is silly, as we still communicate by WhatsApp whether she is in USA or Scotland, but I will miss her when she returns to USA. I have enjoyed her being in the same time zone as me and the possibility of jumping in the car to visit is a reality. But when she is home, we will pick up our usual habit of me sending a message when I wake up, to see if she has gone to bed yet. We often exchange a few words before she goes to sleep and I treasure that contact.

I exchange hand-written letters and emails with my third best friend who now lives in Maine, USA. We have known each other since living together at University over 35years ago and having shared flats together, we are still close despite the distance and I think of her often. I am grateful to be in regular contact with my second best friend, from school days, and again WhatsApp is a great means of keeping in touch with her too. Her family is going through a few difficulties at the moment, so I am trying to support her as best I can, albeit remotely. It was this friend who can take the credit for the tree analogy.

I have had, and lost, many other friends along the way who are important at the time, but you learn that they are only temporary leaves on my tree. These are those who I worked with or who I got friendly with when Joshua was younger. At the time, as we shared work ,new babies or school in common, they were good friends for that stage of life only. But once the shared experience goes away, you find that there is little left that keeps you close and so with Autumn, they fall away and become acquaintances. But I am also lucky enough to have some good friends who are evergreen leaves, who hang around, even after we have left school, respite or work, as they are good fun and they too invest in our friendship. I perhaps have weekly or fortnightly, rather than daily, contact with these evergreen leaves, plus occasional meet-ups, and they are also a valuable presence in my life.

So whether you are my tree trunk, branch or a leaf, I thank you all for your friendship.

A Letter to my Son

Dearest Joshua

I am writing to you now as your mother, even though you are just a baby, to give you some advice that I would like you to heed as you grow up and make your way through this life :

  1. Always be kind to others. Treat other people, even total strangers, as you yourself would like to be treated and you will not go far wrong. So that might just be from a smile or a kind word to a stranger, ranging to doing something kind for a friend when they are in need. Your own kindness will be rewarded by you seeing that you have made others happy and that will give you a warm glow inside. You should always be kind to animals too; dogs will love you unconditionally if you are kind to them and there you will have a loyal friend by your side, for many years.
  2. Trust in your heart and gut to tell you the right thing to do. Do not feel that you ever have to do something that you are not comfortable with, just to fit in with the crowd. Be proud to go your own way, even if it is not the same way as everyone else, and stand up for what you believe in. Be confident enough in yourself and your own choices, if you listen to your heart and gut, you will not go far wrong. Try to be flexible and adaptable, rather than sticking too rigidly to a plan.
  3. Work hard but not too hard, so that it excludes everything else in life. Work will be just one aspect of your life, but do not sacrifice yourself and your own happiness to your employer. You are replaceable at work and so never let it dominate your life , to the exclusion of everything else. You will succeed if you work hard and are pleasant to your colleagues, but remember that the people that you work with, are not real friends, you simply have your employer in common. Make time in your life for friends and family, they are who really matter and they will not let you down.
  4. Try to find silver linings even when things feel as though they are going wrong, there is usually one there if you look hard enough. and they will get you through the rough times. Your life will be a bumpy ride, with both highs and lows in it – nobody’s life is perfect – but embrace every new experience and learn from it. Be grateful for all that you have in life and where possible, try to share your good fortune with others who might be in need.
  5. The Doctors have told us that you may not walk, talk, see or hear. Do you best to prove them wrong and dream big . Do not be constrained by your diagnosis, it is only part of who you are and it does not define you.
  6. Always know that you are loved beyond measure and that you will never be alone. You have got, in your parents, two fierce protectors who will move heaven and earth to take care of you, however old you are.

With Love Always

Mum xxx

Dental Drama

From being a little girl I used to hate visiting the dentist; I was afraid of the drills and the pain of fillings and extractions. But like good parents that they were, my Mum ensured that we went for regular check ups and that we brushed our teeth twice daily. Then I left home and was responsible for my own dental care: I still brushed my teeth daily but my visits to the dentist slipped and became less frequent. I registered with a dentist when we moved here initially, and reluctantly I went for check ups. When I was pregnant with Joshua, I was entitled to free dental care so back in 2000 I attended. I moved dentists a couple of times to get NHS treatment, but then everywhere seemed to become private dental care only and I found myself without a dentist and it was not a high priority in my life.

Once I had Joshua to take care of, taking care of my own teeth took a back seat. Even though I had dental insurance cover through a Health Insurance Scheme from my employer, I did not keep up to date with check ups or treatment. I was happy to take Joshua to see a SEN dentist for his dental care, while I neglected my own teeth. I was horrified by the physical nature of his tooth extraction that I witnessed several years ago for Joshua, he was sedated so felt nothing, but I was pretty traumatised by what I witnessed in that surgery that day and it made me less likely to attend a dentist for myself. Having not kept up with regular check ups, I convinced myself that I would need major dental treatment if I did see a dentist, so I continued to stay away. I hid behind the excuse of being a carer, so I did not have time to take care of my own teeth. So I focused on brushing regularly and hoped for the best.

But during lockdown, chickens came home to roost and a couple of my teeth cracked and some pieces of tooth from the back, fell out! I was shocked and concerned but no dentists were seeing anyone at that time – dentistry did not meet the social distancing criteria – and so I thanked my lucky stars that I got no tooth pain and I continued on ignoring the problem, even when dentists opened up again.

Fast forward to a week of so ago, and I got severe toothache where the damage was; my toothache was agony and spread up into my ear and at its worst, my cheek was hot and swollen. I knew the cause and tried to cope with Bonjela on my gums , regular doses of mouthwash and eating on the other side of my mouth. By Monday this week, by which time I had a mouth ulcer too, I could take the pain no longer and I rang around some local dentists hoping for instant care. Of course, not being registered anywhere made it difficult to get a speedy appointment and one of the more helpful dentists suggested that I call 111 for an emergency appointment. I did not even know that this service existed, but plenty of others did as when I got through I was number 54 in the queue, just for Yorkshire and the Humber region! The queue went down very slowly, I was holding for over 90 minutes before I reached the top of the queue.

A very helpful lady asked questions to assess the urgency of my call and thankfully, she found me a dentist appointment for Wednesday afternoon in our nearest city. Of course I had only intermittent pain on Tuesday and none at all on Wednesday, but I knew that I still needed to seek treatment. So my husband collected Joshua from daycare and I set off for my appointment. I was terrified of the pain , of the likely treatment and of being reprimanded for not going to the dentist for so long. I was early so I wandered around the city trying to take my mind off it and thinking how brave Joshua is with all of the painful procedures that he has undergone in his life. I sat outside the surgery in the sunshine, taking deep breaths and trying to keep myself calm. As soon as I stepped inside, the familiar smells and noises of the dentist, filled me with fear again, and I wanted to run away, after all I was walking towards pain, when I had none.

But I did not run and I was shown into the surgery and invited to sit down in the big dentists chair. While the nurse took my medical history I stood up, afraid to get into the chair but eventually it was time. I was left there for ten minutes and I could hear the receptionist and nurse chatting and sharing chocolates and I could hear other patients in other rooms having their treatment. A Polish dentist entered the room in her full PPE – mask and shield – and she began to look inside my mouth. Why do dentists ask you questions when you have your mouth wide open, with their fingers in your mouth , so you cannot reply? She had me bite down on film and she took an Xray of the offending tooth. She declared that there was not enough healthy tooth to save and it would have to come out, I agreed as she was certain it was the only way to take the pain away. Anesthetic has improved since I last had a dental procedure, I used to have to sit in the waiting room waiting 20 minutes for it to take effect but this was virtually instant. Once I was numb and she began to tug at the tooth, I felt no pain only pressure and the noises were disconcerting. She warned me that she might damage surrounding teeth and my sinuses by removing this tooth but assured me that it was essential, but that did not help my anxiety. But within three minutes of pulling at my tooth, it was out and padding was inserted to absorb the blood. I was told to bite down on the padding for 30 minutes and not to blow my nose for three weeks, then I found myself out in the street again!

I was numb as I walked back to the car, both my mouth and my mind, it had all happened so quickly in the end. I drove the half hour home and spat out the blood-soaked padding when I got home, determined not to feel or look at the gap that my extraction had left. My husband had saved me sausage and mash for tea but once I explained that I would not be eating anything so chewy, Joshua finished my portion off too. Later that evening when the numbness wore off, I had some tinned rice pudding for supper but my mouth was throbbing. I went to bed at 10.30, hoping that the pain would have gone in the morning. Luckily I fell asleep instantly, as Joshua had me up between 2am and 5am, giving him cereal and toast and I tried some soft bread too. We both fell asleep again at 5, and I woke three hours later, feeling a lot better. Joshua was up not long after me and he was clearly brewing seizures, so it was time to take care of him, rather than feeling sorry for my own mouth.

Today I will register with a dentist and get an appointment for next month, hopefully, so that I can have a thorough check up and some planned maintenance, rather than emergency treatment which could only focus on one tooth. I felt the fear, but went anyway, as the raw pain of toothache was worse than anything a dentist could inflict upon me.