Meeting of Minds

When I was working, I used to have meetings regularly but I am out of practice since retiring. I have had some Zoom/Teams meetings during the pandemic, but nothing much recently. So it is surprising to me that I have two face to face meetings about Joshua today. This morning, once I have dropped Joshua off at daycare, I am driving to a local garden centre cafe where I will be meeting a few of the ladies from RDA ( Riding for the Disabled) Back in early April, the last time Joshua rode, I made a complaint about his ride surrounding how his request to ‘Stop’ was ignored and the ongoing issue we have regarding his large splints and boots and their inability for them to be accommodated by stirrups. While we have exchanged emails regarding my complaint, this will be the first time that I have met these volunteers since that evening and we were both keen to meet and resolve matters face to face. I hope that we can reach an amicable solution that means that Joshua can ride again and that we all have confidence that his needs can be met.

In the afternoon, I am going to Joshua’s old school; somewhere that I went on a weekly basis for many years but that I have not visited since February 2020. I expect to see many changes since then in terms of procedures and even the physical reception area as building plans were afoot when we left. It will feel very strange to return to the meeting room where I hosted monthly coffee mornings for parents for many years. Today four of us mothers of ex-pupils are meeting with the Head of 6th form to discuss the possibility of a reunion event for leavers who left the school during Covid times so their departure was not celebrated in any meaningful way and certainly Joshua had no opportunity to say goodbye to staff and fellow pupils.

When Joshua should have left in July 2020, school videoed a leavers assembly for us to watch, as he was still shielding but the Head promised that, once the pandemic had settled down, that leavers would have a decent face to face celebration. I have not forgotten that promise and I chased it in February 2022 ,once Covid seemed to have settled down, to enquire about what was being organised. As a result, we are meeting today to share ideas for what shape that event could take.

Joshua has moved on from school now, he loves daycare and we have had none of the behaviour issues that he displayed in 6th form there. But I would like him , and me, to have the opportunity to say goodbye properly to both staff, ex-pupils and parents too. I will also be curious to learn how everyone survived lockdown and what his peers are doing now, hoping that everyone is now as settled as Joshua seems to be.

So I have prepared for both meetings, so we shall have to see what outcomes we can get from both face to face discussions . Both meetings are about me speaking up for Joshua , where he cannot. His voice deserves to be heard and I will do my best to represent his best interests in both discussions.

Anniversaries

Anniversaries of key dates in your life stand out to you like markers of the passage of time. All of your life, from being a small child, your birthday is a significant date for you and you look forward to it so much, counting the days before it comes. Your date of birth is so memorable and personal to you. I recall one time I was writing a fax at work on my birthday – yes I am old enough to hand write faxes! – and instead of writing the correct year after the day and month, I automatically wrote in the year of my birth without thinking . The client who received the fax spotted it immediately and teased me saying that he now knew how old I was.

Our wedding anniversary is a key date for us as a couple, though I do not expect anybody else to remember it and send us a card, not now that Mum has passed away. It is with a sense of achievement that each year of marriage passes, we will have been married for 27 years this coming October. Sadly our silver wedding passed during lockdown so we did not celebrate with a party or the holiday of a lifetime.

Another date that always sticks in my mind is 4 March 2014, when Joshua had his brain surgery at Great Ormond Street. It is significant as one of the most terrifying days of my life and one that we are grateful for, as it has considerably changed the pattern of his seizures, and therefore has altered his life. The day after, 5 th March , was the date my life changed forever, when our beautiful son was born and we began a new journey in SEN parenthood.

I never forgot the date that I started my job in market research : 2 January 1990. I walked in a frightened young graduate, looking for work experience, and I retired from that same company, over 31 years later!

Two other dates that are significant within our family are the dates that we lost our parents : 23 November 2014 for Dad and 24 May 2019 for Mum. These dates will never pass by without thinking of them both; remembering the brilliant childhoods that they gave me and my sister, how supportive they both were to our life choices as we grew up and how much we miss them everyday. Each anniversary somebody will comment on ‘that went quickly’ or ‘Is it really that long ago?’, but we have keenly felt everyday that they have not been around . Rest in Peace xxx

Smarter than the Average Pup

Our Mum died on Friday 24th May 2019 and on Tuesday 21st May, our 2019 cocker spaniel , Ruby, gave birth to a litter of three beautiful cocker-jack pups. Mum knew about the puppies and told me that we must be totally mad. But neither she , nor we, realised that they would save me during the traumatic weeks that followed. They were ‘fur angels’, who were divinely sent at that particular time to help us through, something beautiful in a cruel world. This litter was a perfect canine distraction and they have just celebrated their third birthday, Betty at home with us and Arthur and Hugo with our nieces. All three have grown to be beautiful and very loved dogs and we are blessed to have them in our family.

Move on three years and almost to the day, we have another canine distraction in the shape of a brown border collie called Yogi. Some of you might recall the battle between head and heart that I wrote about last month, well I am delighted to announce that our hearts won and he joined our family yesterday. We knew all of the practical, sensible reasons for not having a new puppy, who has 4 dogs after all? But once we had seen him, his brothers and his beautiful mother, we were lost and in love. We agreed that we would take him after our holiday, once he was ten weeks old.

So this stunning brown ball of fluff arrived, timid, yesterday afternoon, clinging to his human ‘mother’ and we all sat on the grass in the garden allowing him the space to explore and settle down. Gradually with dog biscuits, we were able to win his cautious attention and to reach out to stroke him. He had so much to explore but the sunshine turned to drizzle and finally, it began to rain heavily, so we retreated indoors. We went into the lounge where Joshua was lying on the settee watching Shrek, but he gave a big grin when I showed him the bundle of fluff that was our new addition.

Yogi had never been on carpet before so he enjoyed that new experience, but soon got too hot under all that fur and lay on the cooler stone hearth, panting. We were all transfixed by this vision of beauty, another canine distraction, who found his courage and began to explore. We introduced him to our existing dog family, one by one, once his human mother had gone home. Hopefully she was reassured that Yogi Junior – as he is named after his Dad – would have a good, loving home with us. Yogi sat next to Joshua while he met Betty first, who loved him and I think they will be good playmates. Then Ruby, who was just pleased to be let out of her cage, and pretty much ignored the new addition. But Kevin, the only other male, was furious and we had to hold on to him during the introduction as he was growling at the new pup.

But during all of those introductions, Joshua’s knee was ‘den’ and his safe place. He tucked in next to Joshua and they bonded immediately : Yogi found a friend and protector and Joshua loved stroking his soft fur and twiddling his ears. How do dogs know that Joshua is special? Even at 10 weeks old, on their first meeting, Yogi sensed something in Joshua that he liked. Yet he was wary of my tall husband at first and we learnt that he did not have a lot of experience of men with their lower, and in my husband’s case, louder voices. After half an hour of playing and getting acquainted, we put Yogi in his cage to rest as he had had such a lot of new experiences in a short space of time, so he would need time to adjust to, and process, it all. He happily slept in there, too hot next to Joshua really, but not wanting to move.

I am confident that Yogi will make a great addition to our already crazy, chaotic family life and based upon his first evening with us, he is going to fit in just fine.

Mum

On Tuesday it will be the third anniversary of our dear Mum’s death and so May is always a countdown to the 24th, when memories of her time in hospital are at their most raw. My Timehop photographs are testament to just how poorly she was, yet we were convinced that she was coming home again and just days before she died, the doctors were talking about the plan for when she would return home. Yet I am certain that Mum knew how ill she was, more so than the medical profession. We still feel her loss as keenly as we did 3 years ago and she has left a huge gap in our family. My sister and I are constantly trying to make her proud, even after her death, constantly referring to what Mum would say or do in difficult situations, so she is still guiding us in our choices, even though we can no longer discuss our dilemmas with her in person.

Yet I am very grateful for a number of aspects of Mum’s death :

  • That she died in May2019 and not May 2020. We were not tied by Covid restrictions at all : we could visit her in hospital as often as we wanted to, there was no limit to the number of different visitors that she received, we were able to hug her when we saw her and when she did die, we were able to plan and host the funeral that we wanted to celebrate her life and invite as many friends and family as we wanted. My heart aches for those who have lost parents during the pandemic and have not been as fortunate as us in these regards.
  • That my parents were generous enough to have two babies, so that by my side, throughout the grieving process, I have had my precious sister. We have had so much love and support along the way, but only my sister understands exactly what we have lost in our mother and that shared experience has been invaluable to me and has helped me to heal.
  • That I was by her side when she passed away: Mum asked a nurse to call me the night before, to tell me that she had an additional infection. I bluntly asked the nurse if she was going to die from it and was told no. I then asked if she wanted me to come over – it was a 2 hour drive – and she replied that she did. My sister had been with her the whole day and had left in the late afternoon, and this call came around teatime. Fortunately my best friend had just come round, with her son, to see our new puppies, so I was able to grab an overnight bag and leave them in charge of Joshua, until my husband returned from his day out. I am so relieved that I went that night and that I stayed by her bedside, all night too. I had called my sister early in the morning to come over as Mum was not right, but sadly I made that call too late in the day. I was there, holding her hand when in the early hours of 24th May, Mum took her last breath , she was not alone.
  • That Mum was a practising Christian so she had no fear of death. She will have had comfort from knowing that she would be reunited with her beloved husband – minus his dementia- who died 5 years before her. I believe that there is an afterlife too and I am frequently comforted by every butterfly, rainbow and Robin that I see .
  • That we have no regrets at all about how we behaved while she was ill; my sister and I were regular visitors, as regular as our work and family lives could allow, but we were there every week of her long hospital stay. I am confident that Mum knew how loved she was and we certainly knew that from her too. One of the last things she said to me was a caring instruction to ” Just sit down and drink your tea”, which was her response when I returned from a conversation with the doctor and wanted to discuss her Do Not Resuscitate instruction that he had told me about. Mum just knew; she was very wise through all of her life – her sisters called her ‘Dear Clever Helen’ – and she was very wise and calm around her death too.

So as we approach 24th of May, and all of the emotion that will bring, I will try to reflect more on how fortunate we were and less on what we have lost and echo the sentiment of this David Harkins’ poem:

“You can shed tears that she is gone, or you can smile because she has lived

You can close your eyes and pray that she will come back or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone, or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn your back, or you can do what she would want : smile, open your eyes, love and go on.”

Back in the Swing of Things

So the day after coming home from holidays and it is all back to normal : I washed and dried five loads of washing during the day, despite washing our bedding and towels while we were there. Joshua was in bed just before midnight but then he did not go to sleep until nearer 2am, possibly because he had spent the day before dozing in the car for most of the day. So I was not surprised when he was still asleep at 9am and I had warned daycare that we might be late in. But when he did wake up at 9.15, he was jolly and raring to go; he opened his eyes and immediately asked for ‘porridge’, which I had bubbling on the hob ready. He ate it all up and then when I told him that he was going to ‘Play’, he swung his legs out of bed , ready to get dressed.

In the end we were only 15 minutes later than usual and he waited excitedly as we knocked on the door, waiting for one of his familiar members of staff to unlock the door and let him inside. He gave them a giant grin when they opened the door and they immediately said how much they had missed him. We went inside and gave them some holiday presents to share between the staff and other learners and they had received his postcard too. He happily waved me off as I turned to leave and he gave me two bear hugs as I left. It gives me such a warm glow walking away from daycare, knowing that he loves it there ; The staff adore him there and it is reciprocated.

I did a supermarket shop to fill up our empty cupboards and fridge, on the way home and then I had planned to mow the grass, but it was pouring with rain when I got back, so that spoilt my outdoor plans. Instead I spent a frustrating hour on the telephone chasing O2 about my faulty mobile phone, which is the kind of job that is impossible to do with Joshua around as I had the tiny Sim card out of the phone and he would have been cross for me to be talking on the telephone for so long. Once I had resolved the problem, I put on another load of holiday washing, then I went to the hairdressers to get my hair cut. My husband and I had a lunch of soup together when I got back then it was already time to head back to collect Joshua, so he went for him while I continued my chores at home.

Joshua was happy when he got home but as usual, he needed to nap when he came home so I put Nemo on in his den and he lay on the settee, where he was soon snoring. We all three took the opportunity to have a siesta too, waking up feeling refreshed and ready to make him some tea. He ate everything up greedily, even though the diary said that he had eaten well at daycare. He still snacked throughout the evening, asking for ‘crisps’ and ‘chocolate’. Joshua was tucked up in bed again around 9.30pm and settled more quickly than normal, happy but tired after getting back into his normal routine.

I am confident that Joshua enjoyed his holiday, but as ever, he is happy to come home and to pick up where he left off, the change in routine does not seem to have upset his equilibrium too much.

Ours is not to wonder why

I love it when Joshua shows his own free spirit and does things that surprise us. He did that twice yesterday and brought a big smile to my face:

  1. We had spent the entire morning cleaning and packing up, while Joshua looked on, entertained by his DVDs. Once we had almost finished , we decided to walk down to the beach and to have some lunch and a swim in the sea. Joshua objected first of all to going out in the wheelchair, but the dog friendly beaches in the summer season, which began 1st May, are a fair distance away and too far for him to walk unaided. Once on the prom he decided that he wanted to walk and push the chair rather than ride and he chose the café that we would stop at. It turned out to be a good choice and we ate a tasty lunch right on the prom, beside the sea. Once we had eaten, we continued on our walk to the dog beach and Joshua obliged, now that he was full. The tide was almost fully in when we arrived but there was enough sand still to tie the dogs up and to change into our swimwear. Joshua sat on the sea wall watching intently as we braved the cold sea, which incredibly warms up so soon after getting in. We were soon in a depth to swim and kept waving and shouting at Joshua. He decided to stand on the shore and was happily watching us, when a big wave came into shore and covered his feet in water up to his ankles. I saw it happen and was concerned until I saw his face, which was laughing – he loved it. The next big wave , as my husband was going in to move him back, soaked his boots and trousers up to his knees! It was as though he was saying ‘I am having beach fun of my own you know?!’ We came in soon afterwards so if it had been a ploy to get our attention back onto him, it had been successful. As I was walking in, I saw my husband’s look of horror looking behind me and I turned to see a huge wave come crashing into me. I did not realise until I got out of the water, but I had forgotten to remove my glasses, and when I had to squint because of the bright sun, I realised that the wave had swept my prescription sunglasses off my face!
  2. We caught a 5pm ferry home and so we were well on our way when we decided to stop at Joshua’s beloved Donalds for some tea and a break on the motorway. He was delighted at our choice and he excitedly awaited our food order. When he was about halfway through his meal, three teenaged girls, all in short shorts, sat directly outside the window from us and Joshua was memorised by them and their legs. He started to feed himself his burger and fries, independently, whereas I had been feeding small pieces in for him. He ate everything up despite not being able to take his eyes off them and continually giving them a thumbs up. As we walked passed them , towards the car, we heard a deep voice say ‘Bye!’ and it was Joshua bidding this harem farewell in his deepest, sexiest voice. The teenagers loved it and shouted ‘Awww, bye’ back to him so he was happy as he re-boarded the car ready for a long journey home. It is moments like this when we are forced to confront the reality that Joshua has the natural feelings of any 21 year old , and that even though we are still changing and feeding him, he is certainly a young man at heart and this incident was a useful reminder of that.

We are now back home again and Joshua will hopefully, assuming he is not too exhausted by his late night and long drive home, he will return to daycare this morning, to be reunited with his new friends, after a week away. This will be the first time that he has not been by my side for ten days and I am looking forward to getting my hair , and the grass, cut today while he is busy having fun elsewhere.

Love & Understanding

I am often asked ‘Does he understand it is Christmas?’ or ‘Is he looking forward to his birthday?’ for example, as people try to get a measure of Joshua’s level of understanding. The truth is we do not really know just how much he understands, but he does understand more than he is able to express with words. When we were told in SCBU that Joshua had suffered a stroke, consequently had ‘devastating brain damage’ my engineer husband needed to have that quantified; so we were told one side of his brain is 50% damaged and the other half is nearer 70%! Those percentages did not really help us and for me, ‘devastating’ was sufficient. We were not told which parts of his brain were affected so we had no idea which skills he would go on to develop and which skills he would never achieve. We were warned at the time that he might never hear, see, walk or talk, so that was pretty ‘devastating’ but we were given the hope of ‘plasticity’; This is where as he had a very young brain, parts of it could adapt and take on new roles and could gain skills that strictly speaking his brain should not be capable of.

So the fact that Joshua does definitely hear and see is miraculous to me, with so much damage to his brain. Joshua does walk, although with a limp and not very far, but as a cashier commented in Aldi the other day as she watched him bolt for the door as I was loading the conveyor belt, ‘he moves fast doesn’t he?!’. They found that at school too, how quickly he could move if he really wanted to be somewhere else or even, not be somewhere. Joshua has limited language but he has more single words now than he has had since puberty and he seems to be adding to his repertoire all the time. So I would love him to meet the pediatric consultants now to show them all that he has achieved over the 21 years since they saw him last. He could give hope perhaps to new parents in our situation when faced with that news, although there would of course be no guarantees that their child would develop in the same way; cerebral palsy is a varied condition and it presents itself in very different ways amongst sufferers, from the mildest impairment to total dependence on carers 24/7 to move, breathe and feed.

So Joshua’s level of understanding : if he is told that he is going to have a bath, go out in the car or go to a café, Joshua understands all of these concepts but assumes that means that they are happening now . He does not appreciate the concept of time or of waiting. It is simple to him, you said that we were going to do these fun things, so let’s do them. These are all physical things that he has experienced and knows what they are and he knows that he enjoys them. But birthdays and Christmas are not physical things that you can see or that come around regularly enough for him to get to grips with I would say. Joshua enjoys both, as they are happening, as they usually involve special food and family and friends coming around but he would not look forward to them coming, we have never been able to do the advent countdown to Christmas Eve- although he enjoys the chocolate in the advent calendar, it has no significance for him. He has never shown any interest in presents, in fact worse than that he is disdainful of them. It is the gifts that most children enjoy about Christmas and birthdays and that is what they tend to look forward to too. But he finds unwrapping presents to be a chore, so much so that we have to spread it over several days and open them for him then try to interest him in the contents. If it is a musical instrument, like a new guitar or a keyboard for instance, then it will attract and keep his attention for a while, but he has no interest in clothes or most toys as gifts.

But I am happy that he is not obsessed by material things, by owning the latest phone or gadget. To enjoy the social side of these annual celebrations seems to me as though he has the right idea, and once again, Joshua could teach us all a great deal from his outlook on life.

Where did that Go?

This time last week, we were packing up the car to come away on holiday and now we are on our last full day here! In the blink of an eye our holiday has flown by and we still have not done everything that we planned to do : we had that lovely walk together, when we arrived and I thought we would aim to take Joshua out walking every night! We have only done that once, mostly once Joshua has got back in at night, after a trip out, he curls up on the settee and it would be a struggle to get him out again. He was happy to do it on our first evening here as he had spent all those hours sitting in the car all day, but when he has had a busy day, he is less enthusiastic. We have not yet completed some of our favourite walks or eaten at our preferred restaurants – instead yesterday we discovered a new place for lunch that was unbelievably good, sitting under the blue sky looking at the turquoise sea and eating delicious food.

But it is not just this week that has flown by, all year has. Incredibly, we are almost at the longest day next month and then the days begin to shorten again. Soon somebody will be asking about plans for Christmas! Where has the first half of this year gone? It has been much busier than the previous two years but even so, it has flown by at an unbelievable rate.

But then it is not just this year that has flown by; next week it will be the third anniversary of Mum dying. How can that be true? How can we have survived without her, still missing her every single day, for a whole three years. We have had three Christmases without her around our table and we have celebrated 3 of her birthdays on September 11th, in her honour. I am going out to lunch on 24th of May with my dear sister, and we will toast Mum together and exchange our favourite memories of her, trying not to recall that terrible morning three years earlier.

How can Joshua be 21 years old already? When did all those years clock up? It does not seem long enough ago that Joshua was born, as those terrifying 11 days in SCBU are still so fresh and vivid in my memory. I conjure up the noises and smells of that emotional ward instantly and I have a clear picture in my mind of Katie , our neo natal nurse. No, there must be some mistake, am I really old enough to have an adult son? In my mind, I still feel like I did in my 20s, when my husband and I made the move after graduation and started new lives in a new region and began new jobs. Yet, after 31 years I have retired from that same job and I am embracing my retirement fully.

This is why we must treasure every day because they fly by at such an alarming rate, so we need to indeed make hay while the sun shines. None of us know what is lurking around the corner for us, be it good or bad, so lets just try to make each day count.

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.