Terrific Teachers

I wrote yesterday about the role of nurses in Joshua’s life and so this morning, I wanted to thank all of the teachers in our lives too. I loved my school days, I was one of those children who were eager to learn and I used to yearn for the end of the school holidays, to return. I can still name and visualise my primary school teachers, from the very tall Miss Mcfarlane in primary 1 to the young, very cool Miss Craig, who had us making chapatis in the classroom! I adored them all. I was quite the goody goody at school. We moved from Scotland to England ready for me to begin my high school career and I recall one English lesson, where the teacher, Mr Williams, used me as an example of how effective corporal punishment in schools was! I had indeed seen many boys ‘belted’ for bad behaviour but I was never a recipient, and it was not fear of the belt that made me well behaved. But he was trying to make a point, comparing the Scottish to English system so I let him continue. I adored high school too and had more variable teachers there, but I selected my O’ level ‘options’ based on my favourite teachers basically, which is why I did not pursue physics due to my fear of the bully Mr Salt.

Fast forward 20 years from my leaving school, and I was taking 4 year old Joshua to nursery school for a whole new experience of teachers. He began at mainstream school and coped well with nursery, and we were both in love with Mrs Jordan – in fact even now he is 21, if he misbehaves or won’t go to bed, we still say ‘Joshua, what would Mrs Jordan say!’ I begged the Headteacher to allow him to spend his whole education in the nursery school, it felt so fun and safe for him, but she declined and said he would grow too big for the children’s furniture which was very true. She helped us apply for a Statement of his Needs, so that he had 1 to 1 support when he got to mainstream primary school, which was brilliant. Again he had such kind teachers there, most memorable was Mrs Eldridge, who still smiles and stops for a chat when we see her down the town. She allowed him to simply be Joshua in her classroom and he loved being in that class of peers.

But then at 8 years old, when the school work became more demanding and he was spending a lot of time in a small room alone with his 1 to 1, it became clear that he was not suited any more to mainstream school and so we began the process of seeking a local special school for him to move to. The one we chose was too full so we were offered a place at another, 45 minutes drive from home, and we accepted the place. These should have been the best teachers of Joshua’s life, as they were experts in Special Educational Needs (SEN) but they simply did not know how to handle him and he became disengaged. I recall being shocked when the teacher asked me for advice about how to engage him, when I had hoped he was moving to a professional, expert learning environment. Joshua was undergoing a lot of seizures at the time, but the final straw was when I arrived unannounced and found Joshua in the corner of the classroom with his hand on his hands on the desk. Not only could the teachers not reach him but the school was not equipped to deal with his seizures, not having a school nurse, so he spent a lot of time at home, out of school after receiving Midazolam, his emergency medication, which once administered, they needed him off the premises for 48 hours.

So we went to a Tribunal to change schools , fighting for one that was closer to home, though in a different LA area, and that had a school nurse. That school was already above its pupil numbers so a 6 month process of gathering reports and evidence was necessary to convince the authorities that this move would be in Joshua’s best interests. The tribunal itself took ten minutes and in March 2011, Joshua moved to his final Special School which felt like him ‘going home’; finally there were staff who understood him and could engage him and could accommodate him when he was having seizures. Joshua was finally happy at school again and his cheeky smile that he had lost, returned. He finally found a teacher who understood him, she recognised and fostered his sense of humour and could get the best out of him. He loved coming to school again and he adored his teacher and many Teaching Assistants too, who were rewarded with his smile and big hugs on a daily basis too.

So, thank you for all of the great teachers in my life, both for me personally who gave me a great foundation to build upon, and also for Joshua through his school career. During our school days, you are the main adult presence in our lives, other than our parents, and you have the power to influence young people, as to whether they go on to love or hate their school days. Luckily I was fortunate enough to be taught by some of the best and so, that is what I wanted for my son too.

Magnificent Nurses

I had a lovely breakfast with my cousin, and her family, yesterday and she was talking about her job as a nurse. She reminded me that I had missed International Nurses Day this week, a date when we stop to consider and appreciate these medical staff, around the world. She really got me thinking about all of the kind nurses that we have met with Joshua over the years, during our various hospital stays.

There is just one who, over 21 years later, I can still recall her name and can visualise her in my mind : Katie. We first met Katie when we were transferred to the Special Care Baby Unit (SCBU) in the evening of 5th of March 2001. Now Katie cannot have been working all of the time during our 11 days in SCBU, but she was assigned to us as a family and whenever she was needed, Katie was there. She took care of Joshua during many of his awful procedures such as his lumbar puncture and MRI scan. But most memorably for me, she was by my side when the consultant gave me Joshua’s diagnosis, when I was alone. She took the place of family at that moment and she quietly and calmly rang my husband and told him to come into SCBU early, saying simply “Emma needs you”, when I was crying too hard to speak. She was our lifeline during those critical days and we learned to rely on her.

After 11 days of excellent care, we were discharged and had to take our tiny, helpless baby home with us and of course, Katie was there to wish us well. We bought her a bouquet of flowers as a small thank you for all her love and care she had shown our new family. She was overwhelmed and she shocked me by saying that it was the first time that she had received flowers at work from a family. So, how else did families show their appreciation? She was only young so had maybe not been qualified for long, but she had more empathy in her little finger than that pediatric consultant had. We will always be grateful to her in particular, but incredible neonatal nurses everywhere.

Joshua has met numerous nurses during his 21 years and almost all of them have been kind and cheerful, as well as sensitive and loyal. There have been busy ones who hardly had time to acknowledging him, despite his thumbs up or high 5 gestures which are his greetings. There were the nurses in Middlesborough who had to give Joshua paraldyhide rescue medication when he would not stop fitting, once on the wards. It was powerful stuff that was administered rectally and it had to be carefully disposed of , as it melted the plastic syringe it came in. It had a toxic, potent smell that the nurses recognised along the corridors outside our large room, which we had to ourselves, and it gave the nurse who administered it, a blinding headache – but she still did it, despite harming herself, for the good of the patient. We were sad to be moved on to Leeds Infirmary, to his consultant at the time, and to a crowded, noisy pediatric ward, as we were incredibly well looked after there.

There was the local nurse at our Cottage Hospital in our home town, where we would take Joshua with his various head injuries, when he was small, sustained during seizures, despite wearing his helmet. He was well known there and we got a special service, but sadly it is no longer a Minor Injuries unit so we would have to travel for 30 minutes now if we needed that service. The building is still open but there are no nurses operating out of there now, just clinic appointments – Joshua goes for podiatry there. It was always reassuring to get checked out locally before heading to A&E in the city if they deemed it to be necessary and I am sure that this local facility kept unnecessary patients away from the A&E department. But I presume there was some logic behind closing all the cottage hospitals; they would have been well used as vaccination centres during the recent pandemic, instead leisure centres and churches had to be used.

So spare a thought for the amazing nurses in your life and show them some appreciation for what is a really tough job. To care and to work such long, busy hours day after day is awesome and far too often, their work goes unnoticed and the doctors get the credit. So thank you to all of the nurses in our lives.

A Sentimental Old Fool

I have just done some baking – I am visiting my Uncle for breakfast today and he loves my cheese straws, so as he is unwell, I wanted to treat him. But it made me very emotional baking in this kitchen : the kitchen table is too low for me, but I pulled up a chair to roll out my pastry as this is where my mother, grandmother and Aunt all cooked and where toddler Joshua always ate his meals. We all used the same rolling pin and the wonky imperial scales , and I loved that. It made me feel closer to my past and those who have baked before me in this old fashioned, but familiar, kitchen.

It is a very old fashioned kitchen with an ancient gas cooker – which my Dad bought second hand years ago! -, lead pipes around the ceiling and mismatched cupboards. We decided that it was time to replace the cooker with an electric model, as this is our only gas appliance so is not cost effective. In so doing, we got to thinking that that part of the kitchen could be modernised so that it all matches into the cream dresser, so on our last stay I invited a kitchen designer in to quote for the work. At the outset I explained that it was a very sentimental house and that the dresser and pantry were staying, but could he design around them. He tried several times to persuade me to move or lose the dresser to suit his design as apparently it is not the right height for modern units and I repeated that it was non-negotiable.

A week after his visit, he sent fancy 3D designs of what he would recommend we do to the kitchen. It was all clean lines and modern units and it certainly looked very swish. But I did not recognise my kitchen in there, he had taken away its soul and memories, and I hated it .It is the type of kitchen that you would expect at a fancy holiday let perhaps. He had not listened to the brief but had gone down the road that probably most customers would like, offering maximum cupboard space and sleek lines. But I am not most customers, so when he called to find out what I thought of his design, I told him bluntly that I hated it. He replied that this was only his first attempt but that he could re-visit it. But he is trying to fit a square peg – modern units – into our round, cosy hole and it will not work.

Instead I am in touch with a carpenter who has done other work for us here, he made a pair of replacement shutters for instance, and he is going to quote for a bespoke kitchen where we can have any heights or layout that we want, not what suits a national company. We are not in any real hurry so can go at his pace as it is functional as it stands, but as one of he custodians of this property which has been in our family for generations, I take that responsibility very seriously and will not simply throw out tradition for convenience. I love the pantry which offers us all the storage space we need but it holds a special place in my heart as, as a child, I used to trick my sister into going into the walk in pantry; then I would lock her in for a joke and leave her there banging on the door. She fell for it time and time again and it always made me laugh, although I was inevitably chastised by Mum when she released my shouting sister from her kitchen prison.

I have been coming here to stay all of my life, since being a baby, and Joshua is the same. It holds a very special place in all of our hearts and that is what the kitchen designer failed to recognise and as a result, he lost a potential client. The first rule of customer service has to be to listen to your customer and he failed at this first hurdle.

A Saltie Start

I have written a fair bit about my new hobby of swimming in the sea and how much I love the group that I have found at home. I have not brought my wetsuit away on holiday with me but I did pack my shoes and gloves, just in case. I figured that the sea off the south coast will be much warmer than our North Sea, so that my swimming costume should suffice. My husband and I swam together in the afternoon of our first day, while Joshua stood at the shore with Ruby, our cocker spaniel, looking confused – where were Mum and Dad going to? It did not help that we had to wade out quite a long way before we could get to a depth where we could swim but he stood watching and I kept waving and shouting his name to reassure him. We were not in the water for very long but it felt wonderful, and not too cold when we got out and dressed either, which is always a bonus.

When I got home, I still wanted to find a group to have a sunrise swim with – the timing would not suit my husband at all. My Aunt who lives locally, kindly put me in touch with a friend of hers who swims in the sea and she kindly found me the name and number of a lady who was going to swim the next day at 6.30am in a seaside town about 20 minutes drive from us. We made contact and I agreed to try to join her and another ‘Saltie’ the following morning.

I was wide awake early the next day, so I set off, wearing my swimming costume under my clothes, and I was at the rendez vous point before 6am. So I took Ruby for a quick beach walk then settled on the bench to wait for my swimming companions. They arrived both wearing dry robes and ready to swim. It was bracing when we entered the water but not too cold at all, given that I was just in a costume; it was notably warmer than the North Sea and flat calm, there were no waves at all. The pair of Salties then debated where to swim; one was clearly a serious swimmer and she headed off around the buoys in her goggles , while we agreed to swim to some closer rocks and back. We chatted all the way there and back, about how we discovered wild swimming. We were perhaps in the water for 15-20 minutes, but we stayed with our shoulders under and waited for our companion to complete her circuit, and the water that we had found chilly at first, now seemed balmy warm to bob about in.

Once out again, they quickly got dressed just in their dry robes and would shower and dress at home, whereas I threw a dress on and a fleece, as I planned to walk the dogs afterwards. I sat talking to one of the swimmers while she drank her hot tea and we shared lots of stories. I have to say that in my experience so far, wild sea swimming seems to attract the nicest, friendliest ladies. She was happy to welcome me, a stranger, along on her swim and I am really grateful that she did. Maybe it is because we are looking out for each other’s safety that you form a bond quickly or perhaps it is simply having a hobby in common or that many sea swimmers are looking to improve their mental and physical health, but I felt as though I made a friend yesterday and I have kept her number, so that when we return in August, I will get in touch to swim again I hope.

The dogs then got their beach walk, we had the place to ourselves in the sunshine and I was back home and in the shower by 8am, with both boys still asleep. For me, this represents the perfect way to start my day and I feel so lucky to be by the beach to make the most of it.

Deja Vu

Some people like to go to somewhere different on holiday every time, they need the excitement of a new destination to explore. We as a family are the opposite to that, we really enjoy returning to the same haunts time and time again, never tiring of the familiar places. I have been staying here, in this house, in this town, all of my life at least once a year and yet I still get butterflies of excitement as we arrive. I love that first walk down the high street to the supermarket, to stock up and to check out what has changed since our last stay – which shops have opened, which cafes have closed down etc. As we were here in February this year, not much has altered but there were still one or two changes.

On my dog walk yesterday morning, I met an elderly lady walking along the prom with her sandals in her hands and her trousers rolled up to her knees. She looked really contented so I asked her if the water was cold? She replied that it was perfect and it was her last paddle of her holiday as she was heading home later in the day. She asked me if we lived here and rather than explaining that we had a holiday home, it was simpler to say that I did. And her reply warmed my heart: ‘Oh, you lucky girl!’ and she was not wrong, apart from the girl part as I am 55 years old, but compared to this lady I must have seemed young! I was already pleased to be here when I set off on my walk, but she made me walk even more with a spring in my step and together with the dogs, we walked over 5 miles from 6am.

Joshua appreciates the familiarity too, he knows where he is coming once he boards the ferry and thankfully it is just a short drive to our accommodation from the ferry terminal, so he does not have long to wait. he acclimatises by wandering around each room, checking how things are since he was there last. He knows which is his bedroom and he asks for a ‘Puppy’ toy that he has been playing with since my 3rd best friend gave to him when she visited us when he was 3 years old! It is synonymous with this place now, after 18 years of hearing it say ‘Find a puppy that says…’ He knows that if we turn left out of the gate, we are heading downhill to the beach and he knows that if we turn right out of the gate, we are going down the town to the shops. So far he has only turned left twice and yesterday we went out in the car in the afternoon too.

When we go somewhere new, we have to spend a few days getting our bearings, finding out where the shops and eateries are. It is a less relaxing experience than coming here and this place has the added bonus for me as being filled with memories of many happy family holidays with my parents, so I feel much closer to them here than at home. We do jobs that I can recall them doing when I was a child, although we are less green fingered than they were, we still try hard to keep the garden how they would have liked it. We sit, sometimes, at the same dining room table that my sister and I sat underneath, eating chocolate bought with my winnings from playing on the one armed bandits in the amusement arcades. The walk we made up to the swings when we arrived, has not changed since I was little, weighing my sister down on the seesaw and making myself feel dizzy then sick on the roundabout. It is a very nostalgic place for me to holiday and I am so pleased that my husband and Joshua now have their own holiday memories here too and I am lucky that they seem to love it as much as I do now.

It is unfortunate that it is a full day’s travelling away from home to get here, but that is why it is so different to our home town, so much warmer in the south. I spent some of the morning yesterday sitting in a deckchair in the garden in the sun, listening to the noises of this place – seagulls, lawnmowers, light aircraft and the waves from the sea. Joshua was indoors enjoying ‘Finding Nemo’ which is his current favourite film, so we were all happy. I hope to have more mornings like that one during our holiday, but even if the sun does not keep shining, we will still have fun here, enjoying family memories while making new ones for this family too.

Let the Adventure Begin

One of the great things about no longer working and Joshua being in daycare is that we are no longer tied to school holidays, so we can go away when it is quieter and to suit us. So yesterday morning we packed up the car and we have come away to the seaside. We have always been lucky that Joshua is a patient traveller as we left home at 9.30 am and did not arrive at our destination until 5.30 pm, but he dozed most of the way and listens to music and eats snacks, like us, when he is awake. He was delighted when we stopped at the motorway services for a short break and some lunch. He waved and gave a thumbs up to everyone we passed on the way in and out and ate his chicken too, with no complaints when we re-boarded the car half an hour later. It was pouring all day so the motorway conditions were unpleasant but we managed to catch the ferry that I had booked. But when we arrived at our final destination, I was thrilled to be greeted by blue skies and sunshine, as if this was our own piece of paradise.

Joshua has been coming here all of his life, so he was very excited to arrive and he explored downstairs while my husband and I unloaded the car and put things away. He got re-acquainted with his own bedroom and he seemed very pleased with our choice. After we had eaten our tea, I made up all the beds and Joshua followed me around as I moved from room to room, supervising my unpacking of clothes too., while the exhausted driver napped. Soon we felt that we had never been away from our home from home.

As it was still a beautiful evening, I suggested that we take the dogs out for a short walk to the local park, with Joshua walking rather than being in his wheelchair. He was hesitant as we walked passed the car, but then he was happy to go on this family outing. As we walked slowly along he looked up and shouted “Moon” as he had spotted the moon appearing in the still blue sky and he was very pleased with himself to be the first of us to notice it. We walked arm in arm for about 5 minutes when we had got to the top of a hill where he sat on a bench to admire the sea view – it was such a beautiful evening. When he was ready to move on, we completed the short loop and walked home again. It was far enough for him these days, and I would like to think that we could complete this stroll every evening before dark for his exercise and sea air. I am sure he slept better as a result of his walk, having had the whole day sitting in the car.

So, let the holidays begin….

It Seems I’m not Alone in being Alone

This is Mental Health Awareness week, with the theme of ‘loneliness’. Being the parent or carer of any child with special needs is a demanding role and one that can feel isolating and I read yesterday that 93% of parent-carers have felt loneliness. Certainly when Joshua was a baby and the rest of my group of antenatal mums would meet up on a weekly basis, they all had perfect babies and mine had a diagnosis of brain damage, which inevitably made me feel different and isolated. That feeling exacerbated when our children all went to nursery then primary school together, especially once Joshua moved to a special school. Once their children were pursuing their GCSEs and A’ levels at school, we had nothing in common anymore and gradually, sadly, we have virtually lost touch.

I have suffered more from feeing alone, rather than loneliness and I see a difference. For me, loneliness is a feeling of not having anyone around to physically support you, whereas feeling alone is a more emotional state, of being isolated and misunderstood. It is perfectly possible to be in a room full of people, yet feel alone. I often felt alone in my office full of colleagues, yet the building was full ,so I was not lonely. I recall one time that I returned from school after a very emotional meeting about Joshua, and nobody asked me how I had got on, even though they knew my meeting was a big deal. I slipped upstairs to my office where I cried at my desk, as I felt that I and our family, was not important to these people that I worked with everyday for over 20 years. That day , and on many others, I felt isolated and very alone; it continued as my colleagues agonised about their children’s poor school reports, learning to drive, applying for university and leaving home – all problems that I would never share. I resented their worries in a way and they would never empathise with my very different worries.

That is why I began the parent coffee mornings at school, so that parents of children with special needs, who all attended the same Special School, had somewhere to go once a month where they did not need to feel alone. A place where they knew others would understand how they were feeling and where they would never be judged for saying the unthinkable, out loud. The homemade cake was incidental, it was a bonus but it was really about trying to support parents and overcome potential feelings of loneliness. The trouble was that those who arguably needed it most, struggled to attend. Their mental health was so poor that, despite their best intentions, they never made it along, yet they would have felt so much less alone if they had braved their fears of leaving home and coming into a room full of strangers. But I could not force them to attend, all I could do was remind them every month, when the event was coming up and hope that they had the mental strength to overcome whatever kept them away.

So I am well aware that loneliness is a very real issue for parent carers and the problem is that, when suffering with poor mental health, they are unlikely to have to resources to be able to overcome those feelings of being alone. They will lack the confidence to meet people, either strangers or even people that they know already. I have recently joined a group of Mermaids who swim in the sea in the early hours of the morning and I am loving it. They are such a friendly group and so even though I knew nobody when I first went, I was made very welcome. I have swum with them 6 times now and they feel like old friends already and even said that they would miss me while I am away on holiday this next week. So as well as enjoying the cold water swimming, which is a totally new experience, I am loving this new friendship group too, and I would not have been able to join them when I was feeling low, so it is even more precious now and I am incredibly grateful to them.

Kintsugi

Yesterday marked the beginning of Mental Health Awareness Week and anyone who knows me, or is a regular reader, will know that this is a topic very close to my heart. I had Virgin Radio on in the car yesterday, on our way to daycare, and Chris Evans had an incredible young man on his show as a guest. Ben is only 22 but he has written a mental health book after a family tragedy : his younger brother was diagnosed with clinical depression , which he had ignored as he had not understood it, so he was wracked with guilt when his 15 year old brother took is own life. He had suffered with terrible guilt and had thought that he would never look forward to anything in his life again. Both Ben and his mother had become active campaigners for mental health in school aged children, she was studying mental health and giving talks in schools, while Ben had written a self-help book about his experiences, so they had both turned the tragedy into a positive rather than becoming consumed by it.

Ben talked about something in particular that struck a chord with me, as thankfully our family has not been affected by suicide, though depression is common amongst my family members. He talked about accepting ,and even embracing, our flaws rather than trying to hide them. He spoke of the Japanese art of ‘Kintsugi’; whereby broken crockery is re-built by gluing it together again with gold, so it treats the breakage and repair as part of the history of the object, rather than being something to disguise. This is a beautiful concept I thought, so lets not hide our damaged parts, lets illuminate them as an important part of who we are.

I do not now try to hide my poor mental health, my ups and downs are a key part of who I am and without the lows, I do not get the highs either. I am not sure that I polish and highlight my depression, but for me, it is invaluable to talk about it, in the open rather than trying to deny and hide it. I was forced to hide it when I was working as I always continued working throughout my lows, I never took any time off for my depression. I would tell my bosses when I was feeling down, although I always thought that it must be obvious to them before I would confess. They would reassure me that I was disguising it well. It took supreme effort, which was exhausting, but I maintained my responsible role at work and would even manage to wear a disguise when visiting clients, so that they would be none the wiser how much I was struggling. Everything took me longer than when I was well, as when I was writing a report for instance, I would be constantly changing it, being filled with self-doubt and feeling that every line was not good enough. Now that I have retired from work, that is a heavy burden lifted from me, I will never have to pretend like that again.

This weeks theme is loneliness and having poor mental health is a very isolating experience. I tend to withdraw from most social situations when I am low, which is why lockdown suited me well really as there was no expectation to socialise. But this is probably exactly the opposite of what I should be doing, as that gives you even more thinking time, more time inside your own head. Time with your friends can show you that you do have worth and that they do not need you to be the life and soul of the party all of the time, good friends will love your highs and lows. That is something that I have only recently come to appreciate; previously I did not want to see my friends when I was low, as I did not expect them to like me in that state, but now I realise that friendships are important for my recovery and that if someone is willing to stick with you through your lows, then they are a true friend.

So during this Mental Health Awareness Week, be kind to those who are struggling.

Why Us?

There has been a lot written about maternity failures in the press and I have wanted to share our experience with you, but for several weeks I have been too emotional about it to cover this topic but now I feel ready. Every time I hear of mothers and babies who have been failed in their maternity care, lives that have been lost or impacted by disability, my heart misses a beat. We love Joshua dearly, I want to make that clear before I begin, and that should never be in doubt. But he is not the son that we should have had, something went wrong for us which has given him permanent and devastating brain damage. All of our lives have been changed beyond measure by what happened to him at birth and it seems that nobody is responsible.

Joshua had a stroke effectively, either before he was born or during the birth, we do not even know when it happened. He was overdue by two weeks, by the medical profession’s specified due date, and had to be induced. If I could have had that time again, I would have asked to be induced sooner. Who knows what was going on in my womb while he was in there too long. But I did not know any better and we heeded the midwife’s advice, turning up at hospital two weeks later than due. My labour began very quickly and it soon became clear that Joshua was in distress and needed to get out. The doctors wanted to perform an emergency caesarian, and prepared me for surgery, even though my husband pointed out that I had requested a natural birth – I was unable to speak up for myself at this time. We were taken to theatre and I can recall the medics telling me ‘one last big push or else it will be a caesarian’ and so I gave it everything that I had, pushed with all my might, and Joshua was born.

My husband says that they lay him on my chest before taking him away to clean him up and then take him immediately to an incubator, but sadly I have no memory of that at all. My baby was taken away, as he began fitting almost straight away and I was taken to the maternity ward, surrounded by new mothers with their new babies, which seemed especially cruel. It seemed an eternity before the doctors came to see us but when they did , it was not good news. Joshua had continued fitting and they were trying to stabilise him. He was just 6lbs 3 oz and the pediatrician said that he had ‘baggy skin’ which meant that he should have been heavier but that towards the end of my pregnancy the placenta had stopped working and he was not being nourished, and so he lost weight. We called him our ‘skinny rabbit’ when we first saw him as he seemed so long and slim.

There followed a tortuous day with infrequent updates and in the afternoon, the doctors told us that he was being transferred by ambulance to another hospital across the city, which had the Special Care facilities that our hospital did not have. It took several attempts to get him stable enough to move but they managed it around teatime and I travelled separately in another ambulance in my nightie, anorak and boots. We were finally able to see him that night, once he was established in SCBU, which was a major relief and I stayed up all night next to him, terrified, as the monitors were going off all the time.

The medical profession must have suspected that he had had a stroke, but did not share that with us until after he had a MRI scan at day 4 of his life. The consultant came to my bedside to ask where my husband was and I explained that he was visiting later, but he was at home with my parents when she arrived. She then proceeded to tell me, alone, that Joshua had suffered a stroke and had severe brain damage. I could not take the news in properly in my exhausted, emotional state. Our kind nurse, Katie I recall, telephoned my husband and asked him to come in earlier than planned, simply saying ‘Your wife needs you’ as I was too tearful to explain. Katie and I tried to tell him and my parents what the Doctor had told me, but of course we could not answer his many questions but the consultant had disappeared to an emergency by then and could not be found. That was one of the cruelest and least sensitive decisions that the doctors made in my opinion and that feeling of loneliness and disbelief will never leave me.

Katie managed to find another consultant to explain again and we had lots of questions for him and even more the following day. That night they let both of us stay together overnight in the Parents Room, as previously my husband had been going home every night and that travelling, although it was only 30 minutes away, was exhausting as anyone who has ever done regular hospital visiting will know. We were given more information and Joshua gradually stabilised so that he did not need to be monitored so closely, as he mastered the art of breathing consistently, so we were moved together into a room with him in a cot in my bedroom, where we were looked after really well by the SCBU staff. In total we stayed 11 days in Special Care before being discharged home. The prospect of going home, though appealing, was also terrifying after having had 24 hour care for professional pediatric special care nurses. But we faced it and we had no emergencies and we are here to tell the tale.

Once Joshua was growing and stable, we asked the NHS to review our file to try to understand WHY what had happened , had happened. Was there any medical negligence at play? Should we have done anything differently. We had blood tests to see if it was our combination of blood cells that might have combined to cause Joshua, and any future offspring, a problem. The doctors got very excited at first as they thought that they had found a problem, but it turned out to be a mistake. It was notable that the NHS defends its own staff and they protected each other so much so that not the midwife, nor the staff in the delivery suite could be blamed for anything. We were told to go away and realise that what had happened was ” Just one of those things”. Now for the sake of Joshua and for my own well being, we have accepted that, but it has not been easy and these negligence cases, each time raise the issue in my mind again. We were never looking for a bumper payout from the NHS, we simply wanted to understand what had gone wrong for our son and to appreciate if it might happen again to any future babies that we might go on to have. It does not seem unreasonable to have sought that reassurance, but for us, it was not to be.

Socials

I have now written over 100 blogs since I re-started writing back in February this year. Back then I did not want to put myself under pressure by committing to publishing something everyday, but in fact I have written daily since I re-started and no once have I woken up and struggled to find something to write about. I keep a list on my phone that I update whenever inspiration strikes so that I have some ideas at all times of subjects that might interest me, and you, the readers. I want to talk about social media today.

I only use Facebook, I am not on Twitter or Instagram, or any of the many other digital platforms. This blog is automatically set to share on Facebook and it has its own Facebook page. For me, Facebook is a means to share my thoughts with my network of friends and family. I like, when I am well, to share photographs of a happy Joshua to show them how we are doing. I like to use Facebook Messenger to communicate with people that I do not often see , such as cousins, ex-colleagues and friends from Joshua’s previous schools. For me it is a great way to keep in touch and as I often up early in the morning, I know now who else amongst my Facebook friends are early risers, so when I see somebody online earlier than usual, I often check in with them to ensure that they are not unwell. It happened a week or so ago, a friend’s early appearance was so unusual that I queried it, and it turned out that she was at an airport waiting to fly off on a family holiday but we had a lovely chat about her long weekend plans.

It is a sociable platform for me, so much so that when I am feeling low, I never consult Facebook. When I am feeling low, I do not wish to socialise with anyone, so I would not be able to chat online and the images that I would see of others’ happy holidays or proud boasts about their children would cut deep and make me feel worse. So, like my social life, my online, digital presence oscillates between being busy and engaged, to being quiet and distant.

Yesterday I was taught by a friend how to block someone on Facebook, which is not something that I have needed to do until now. Last month I was involved in an incident in my car; Joshua and I were heading out of town on one of our day trips. I followed the car in front of me past a parked car and as I was overtaking it, another car continued coming the other way and it was certainly a tight squeeze. As I looked behind me in my mirror, I saw that this car had stopped and the couple jumped out and were checking their car over. I knew that we had not bumped wing mirrors or anything, so I was confused and pulled over too to see if they were OK. I was met with a torrent of abuse from the female passenger who was incredibly rude and began taking photographs of my number plate. The driver more calmly explained that he had damaged his wheel by pulling into the kerb to avoid me. I was rattled by his wife and so I gave him my name and mobile number but we did not swap insurance details as there had been no collision. I asked her to stop shouting at me and I got back into my car, shaking and we carried on with our day trip – I was determined that they were not going to spoil our outing.

This week however he texted me a quotation for £895 of repairs, expecting me to pay for the damage. On reflection I had realised and this had been confirmed by everyone I consulted, including my Insurance company, that I was not liable as there had been no collision, he had simply misjudged the gap. So guided by my insurer, I replied to his text saying that the damage was not my fault and I gave him a phone number of my Insurance company if he wished to pursue it with them. Of course I got another text in reply so I repeated my same stance and blocked his number. That was not however the end of it, yesterday morning I received a message from a concerned stranger : he had seen my name in an angry facebook post on a community ‘Rant’ page, as he had taken to social media to name and shame me. I am not sure what he hoped to achieve from his rant but he did not get the support that he had hoped for, with many readers telling him that he should be ashamed of himself for naming me. With help, I have been able to block him from finding me on Facebook now, but this was a negative use of social media and I get the impression that this was not his first rant either.

The problem is that social media posts are not vetted, so people can say whatever they like, whether it is kind or accurate. The images and thoughts that I post are happy or thought-provoking ones, I would never use social media in an angry way or deliberately to show off either. However, my photographs on holidays or when out on daytrips could be construed as bragging – look where we are! I am very careful to keep everyone who I blog about , anonymous apart from Joshua and myself .

Joshua has had so many tough times in his life, so I am genuinely happy to share images of him having fun, either with me or at Daycare, to show that he is ‘living his best life’. His face is so expressive that he leaves no doubt whether or not he is enjoying himself. I feel that it is important to share these happy images, as many people think that due to his disability that he is to be pitied and that he has poor quality of life. I think that many of the photographs that I post disprove that theory and instead, they demonstrate his genuine lust for life.