Gone upstairs

a personal journey through grief and change


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Dying no more

It was when the nurses washed him that his breathing changed. We were all in the kitchen while they did the morning bed-bath, but I peeped through a crack and saw my beautiful naked son being gently washed in the way I had been taught as a student nurse nearly 40 years before. A minute later they covered him up and called us into the room: “His breathing’s changed, you should come in” Was this ‘it’?

We all swap places – the nurses leave us round his bed.  Becca and I stand on Sam’s left, Martin and Sam’s grandad on his right, holding his hands and arms. His eyes are closed, his face composed, but he is definitely struggling to inhale and exhale. How hard to let this process run its course – how can this be happening? Hardest for the medical man who had been trained to bring people back from the brink… But Sam has a red sign in the kitchen saying “Do Not Resuscitate” – the brain we cannot see has already done it’s fatal work. Despite that fact we speak  our love and comfort to him, not knowing if he can hear us: it is our only way to say goodbye.

Within a few minutes his breathing stops… “the breath returns to God who gave it” “Into Your Hands we commit his spirit”. His pallor gradually turns to blue, then purple – there is no oxygen in the blood but his strong, young heart is still pumping it round his body. Oh God! It is too much – his head and shoulders rear up from the bed and we all jump. Martin says, “Don’t worry that is normal” – death throes as the body relinquishes it’s life, so horrible to see it is still the worst moment of the whole thing. He falls back to the bed lifeless and all colour quickly fades to white, then waxen…

Dying is nothing like death itself. Dying people are still with us, but death means GONE. It is a totally different feeling – even though you know it is coming you cannot really prepare for it. Sometimes people talk of heavenly experiences, feeling there are angels in the room to guide the loved one home, but for us it wasn’t like that at all: Sam’s death was traumatic despite his unconscious state. The hands we continued to hold went cold. Rebecca in her terrible distress immediately left the house to go and cry in her friend’s arms. Martin’s dad went back into the kitchen to make tea. I looked at my watch, to know the time of death…

We all react in different ways. I am sure Martin was weeping. I sat very close to the bed and put my cheek on Sam’s. It was cold and the skin had changed: he was a corpse. I whispered my love one last time, but there was nothing to be done: Sam Dyer had left the building. We relinquished his body to the nurses for laying out, dressing him in his favourite tee-shirt and shorts for his long sleep in the earth.

I was numb: now there were things to do. I went straight to the funeral directors to get advice and organise what had to happen next – but I’m not going to write about that now. (See this post for the overview I did write one month later when at last I felt able to communicate something.) I left Martin waiting with the body for the doctor to come and certify the death. When he came our lovely GP cried over the loss of a young man who had been so full of life…

That was the question uppermost in our minds: What had happened to all that life? That strong spirit? HOW could it just be snuffed out because it’s container had worn out? Surely we believed he had gone into the spiritual realm – to meet God?  But what actually does happen when we die? Where was Sam now? It made me cringe when well-meaning friends said things like “he is safe in the arms of Jesus” – it seemed so unreal, wishful-thinking, imagination, generic gobbledygook – no comfort at all. It doesn’t say anything like that in Scripture! However, something that really did help, was someone who didn’t know us at all who had been praying for us – how amazing is that on its own? – who had a vision of Sam drumming his way into heaven with great joy and gusto! She had no idea he was a drummer… I loved that! 🙂

It is all so much a matter of faith in things unseen, convictions being tested at the point of crisis. All we really knew for sure was he was and is no longer with us… But we refuse to use words like “passed or passed over/on” “gone into the next room” – yuk! things that take the finality out of this loss. It has to be called by it’s name: DEATH.  St Francis called her Sister Death – a close companion through our lives, a friend who takes us in her arms at last, a rest after a weary, long day. And we admit Sam’s death was a release for us as well as him.

In fact we do not begrudge the timing, his young age. I’ve blogged abut these last 10 days because they were so amazing and full of grace. It was a good death! He lived his 27 years to the full and had many great experiences: he used to say so himself. He told his sister to say at his funeral (and I quote!) “Fuck you, I went to Hawaii!” – which of course she was delighted to do! He also used to say he was actually glad all this had happened because of all the good that had come of it – the healing in his own life and in our family! Acceptance has to come if there is to be any peace in life  – and in the end it is all about this, from Fr Richard Rohr:

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At the time I needed something to hang onto and the gospel story about the thief on the cross next to Jesus came to mind. As they were both dying, this man said to Jesus, “Please Lord, remember me when you come into your kingdom!”  and Jesus’ immediate response to this wicked man – who had simply acknowledged that He actually had an eternal kingdom and nothing more – was “Today you will be with Me in Paradise” Sam did acknowledge my Jesus, despite all the other paths he also took. Apart from that I know that my God is Love and that definitely includes my children as well as – in fact – I believe it includes the whole world. Unless someone downright refuses, they are given access…I cannot help believe Sam is ‘in’! As a wise friend said to us later: Sam is in our future

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“Goodnight, sweet prince, and flights of angels sing you to your rest”

My son is dead, long live the memories – my baby boy, our cheeky little lad.

I cannot list the precious moments that I treasure in my heart: “My mummy, my best thing” he said at nearly 2 – “I love you mum” he vowed before he died.

Now he lives on, his childhood laughter, mimicry and humour, that quirky character and stubborn will – his face in photographs and dreams, held in our hearts.

 

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Our son is dead, long live the legacy – our drummer boy, so totally unique

His struggles and the anguish of his youth, a life cut short, the battle that he bravely fought out in the public gaze, his words and love and courage stamped on many lives.

They still live on – online, on You Tube, TV and in print – a shooting star that blazed across the sky and fell to earth.

 

My son, my dearest Sam, is dead – long live the LOVE

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Saturday

On Friday evening Sam turned up on our doorstep in his coat – he’d just probably been to the cinema to actually see Hunger Games 2. We didn’t find out as he was only there to deliver a terse message: “I want that bed moved out of my sitting room!” The irritability was to the fore and we were definitely personae non grata! I soothed him with what I guessed would be a fair deal” “Let’s wait until Sunday, and if you still feel the same then of course we’ll move it”.

Perhaps it was a wild guess rather than a calculation – we only knew that he wouldn’t stay as well as this for long. We’d actually asked a young friend who’d received cancer treatment and steroids to talk to him about taking them, perhaps persuade him it would be wise…? But whatever she’d said it had made him even more determined not to… Oh well – at least he’d stop being so horrible to us soon! I had to go and relieve the night staff again on Saturday morning and didn’t know which Sam to expect!  But it was fine: he did actually quite like being looked after – on his own terms!

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But Saturday 22nd is memorable because of what Martin did.

For nearly 6 months Martin and I had been living in the rented flat in Leicester during the week so he could walk to work and coming back to the community house at the weekends. About once a month – or whenever we could arrange to all be around together – we would have a household meal: November 22nd had been in our diaries for a while and Martin had offered to cook.

He decided that morning to do his signature dish of roast lamb with garlic. I can’t remember what I was doing – probably laundry and checking up on Sam – but Martin spent most of the day preparing the feast 🙂 Sam was much on his mind, of course, and he felt the meal should be a celebration of his life. He placed 27 tea-lights around and above the table, one for every year of his life. The lamb was a reminder of the Passover meal – and we realised we needed to drink the wine…

On January 29th 2010 the first person who had come to visit us after hearing the diagnosis – Grade 3 asterocytoma, probably 3-4 years to live – had brought a bottle of wine intended for laying down – an expensive bottle that could be kept and would improve with time. It would last for some years – but Rich declared that Sam would last longer than the wine! It was a statement of faith and hope, lifting our eyes and spirits out of despair. We kept it on our mantlepiece – we’d kept it for 4+ years so far – as a constant silent declaration.

But we knew the time was rapidly approaching for us to let Sam go. To continue to pray for healing was both unrealistic and unkind: I actually asked the church NOT to pray for healing because there is no doubt that when we pray it has an effect, even when we don’t see a complete reversal it can relieve symptoms and prolong life: we have seen it before. But Sam was not going to recover from this: it would not be ‘faith’ to pretend he would – but he was still going to outlast the wine: we would drink it! We decided to use it in a household communion prayer before our meal and invited Rich to join us.

Just a small circle of friends, but such a precious few moments: thanksgiving to the One who went before, conquered death, showed us the way and opened heaven. We prayed for Sam and committed him into God’s hands – his body, his life and his spirit. We ate the bread and tasted the wine and knew the peace of heaven. It was so right. When there is nothing more to be done we fall back into God and the promises of life forevermore.  Surrender is faith.

The meal was poignant and wonderful. It was the high point of our fellowship as a community, as if this time was what this strange mixture of people – and the lovely baby – were together for. The support of these friends who lived in our house meant more than we can say. We kept some lamb and wine for Sam…

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The film buff, not content with Hunger Games, had gone out for the evening with Dean and a few other to see The Imitation Game. It was games all the way for Sam… He came into the room with Dean in a state of excitement, having been completely inspired by the life of Alan Turing. We don’t know how he managed to watch the film with only one eye and one half of his brain working, but he was exultant: “I am just like him!”

Happy Sam made his way home to meet his night watch-women, while contented and full-hearted the residents of Burton St made our way upstairs to bed.

 

 

 


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On the ward

It was a gruelling night.  Sam needed nursing care – he was incontinent, unable to get out of bed alone, not fully ‘with us’. At some point he was wheeled off for his scan. At 2am Martin’s brother and father arrived: they had collected Becca at a train station en route She’d been having a ‘2 months together’ celebration with her boyfriend, Tom – which was why she’d wanted to go home. In need of support, she invited him to come along too. Brave man – he’d never met any of us before! But he was willing to come into this traumatic situation to support her, as he continued to do in the following months. We are eternally grateful.

In the early hours of Tuesday 18th November there was a moving family reunion in the dimly-lit corner of the 6-bedded ward as we all tried to keep our voices down around his bed: Sam and his fellow patients were asleep. Martin and I were exhausted and very glad the cavalry had arrived. We were able to take Martin’s dad back to our flat – only 10 minutes walk away – and all go to bed, while Richard, Becca and Tom took over at the bedside…

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Obviously there had also been some medical intervention since Sam’s admission – drugs for pain and sickness and also the first-line treatment for raised intra-cranial pressure, the steroid Dexamethazone. This drug reduces the inflammation and consequently the pressure and its symptoms and it undoubtedly helped cause the improvement that followed. By morning Sam was back to his almost-normal conscious self. We returned to the ward at around 7am and found Tom and Becca sleeping on chairs in the dayroom and sent them to our flat for a proper rest. Richard was by Sam’s bed and soon decided that as the crisis was past he and Dad would drive home. Later on, Becca put Tom on a train back to Brighton… and then there were 3.

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imagine the goose as the consultant – having a good telling off!

During the morning there was a ward round. A young consultant came to talk to Sam about what they had found and what they could offer. Oh boy – that poor doctor, having no knowledge of our son’s history and approach, got the full force of Samuel! “The CT scan shows the tumour has grown and there is mid-line shift (ie it was pushing into the left side of his brain). We could get an MRI with more detail and send you to the surgeons in Nottingham to see if they can do anything. We could give you some chemotherapy…?” “I have dealt with this in my own way up until now and nothing has changed. I don’t want you to do anything, I want to go home and continue to do it my way!”  With words to that effect Sam effectively dismissed the medics and took back control of what was happening to him – at least as much as he physically could.

The previous evening we had texted a number of our friends and Sam’s friends to let them know about him, so soon after that Dean, Sam’s energy-healer friend, came to visit. I’m sure this meant a lot to Sam – he was very reliant on Dean’s advice. We were also delighted when his old school-friend James came in. It was in fact the beginning of a number of reconnections with people who’d known him in recent years which was so important and helpful over the coming days. And of course his img_2783sister had long hoped for this opportunity to support her brother when he needed it…

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The day now stretched ahead and there was a lot to organise. Martin took over, making contact with the acute oncology team who could make the arrangements for Sam to be cared for at home – including night nurses, a hospital bed and other nursing care in due course. I drove back to Loughborough to get his house ready…
img_1203I worked hard cleaning and moving furniture around, putting the sofa in the kitchen so that there would be room for the hospital bed when it was delivered. I tried to position his personal things where he could get at them – music and a bedside table, chairs for visitors. I tried not to think that I was preparing a place for him to die in peace: we had no idea what that would entail or how long it would take…  But this is the status I posted at the end of the day – facebook found it for me this morning, 2 years on. Look at that, 140 comments… so much support from dear friends and barely known acquaintances. It meant so much. We knew we were surrounded by many prayers and felt the grace carrying us. Later on it was astonishing to be thanked for allowing others to walk the journey with us by being so open and sharing it as it unfolded. It continues to be a privilege and even helps to somehow give it all meaning. Thank you for reading now…

Meanwhile Martin sat with Sam. Martin still remembers with immense gratitude one of his consultant colleagues coming onto the ward to bring him coffee, mints and encouragement. He witnessed Sam try to walk to the toilet and fall. The hardest thing for him as a doctor was being unable to do anything to help, to make him better – because no-one could do anything. He recalls lying on the bed with him, crying over our son, his tears falling on Sam’s face – and Sam looking at him and saying, “Why are you crying Dad? You haven’t seen what I’ve seen…” We don’t really know what he meant or what he thought was going to happen: he continued to insist the tumour was irrelevant, but it seemed that at the same time he knew he was dying and was completely unafraid.

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He was moved into a side-room for his second night in hospital, which gave a bit more space and privacy. It also declared that he was no longer an emergency to be watched over – clearly the steroids and other drugs were having an effect. Becca took over the nightshift and laid out her own bed on the floor next to him and we returned to our nearby flat – so grateful for our Leicester home ‘for such a time as this’! – to rest and wait for what tomorrow would bring…


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Catching our breath

This process is challenging. Writing every day is immersive – I do feel as if I am back there 2 years ago, or at least watching developments from the corner of the room… It’s Sunday morning now, 16th November. I can’t remember but I am guessing Becca spent the night at Sam’s house. It’s time for me to make bacon butties and work out where we got to with LOTR…

Tolkien’s tale of middle earth was embedded in our children at an early age. Theseimage-1 photographs were taken in Chicago in 1995 when Sam was 8 and Martin had almost reached the end of the third book. They were keen to have the next instalment at every meal to find out what happens at the end. Martin did a sterling job, putting on voices for all the characters. He had a particularly ridiculous camp one for Gandalf which made them both giggle (“Do Gandalf, Daddy!” “Oooh hello! I’m Gannnndalf”) You can see Sam is nearly asleep over his Chicago pizza but the book is ready on the breakfast table the next morning…! We finished it one sunny morning drinking coffee on a restaurant pavement in the shadow of the John Hancock building 🙂

These are the things that make memories. Hunting for these half-remembered photographs brought back many more. There is comfort in it – reminders of happy times, reminders of Sam and our family life back then. Nothing can take these things away – they are our treasures. I am glad I took so many photographs! I said before, these years would have been swallowed up by time whatever happened later on: we have already had to learn to die to the past in order to move forward and grow.

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Sam in around 2006

So – we are all Lord of the Rings fans. We eagerly awaited Peter Jackson’s films and each year made a family visit to see them as soon as they were released. They were not quite true to the book, but close enough for us – we loved them. We bought the extended DVD’s and Sam frequently watched them again. Later on he even travelled down to Brighton to visit Becca so they could go to an all night screening of all 3 films! She fell asleep I believe… It was the obvious thing to do together – watch the trilogy for what turned out to be Sam’s last time. “There’s some good in the world, master Frodo, and it’s worth fighting for” “One thing’s for sure Frodo couldn’t do it without his Sam” “We can only do our best with the time that’s left to us” “the smallest person can make a difference” “We may not defeat them, but we will meet them in battle nonetheless!” “No man should have to see his son die” “How do you pick up the threads of an old life?” Deep echoes of truth that help us all on life’s journey.

Our Sam – he was Samuel, but I wish I’d had the courage to name him Samwise! – loved these ideas and had plenty of others of his own. He was a thinker, an amateur philosopher. He knew himself well by this stage, had talked through his childhood issues with me, addressed poisonous relationships from his student days, knew his strengths and weaknesses.

He was also a wizard with words: we always tried to get him to write and when he did it was stunning. He could argue the hind-legs off a donkey; he could turn something round and send it straight back at you. He posted crazy videos of his opinions and thoughts on You Tube, most of which we find embarrassing, but apparently he had a following. (If you are inclined you can look up Scratch 47) He had his own spiritual approach to life. He felt entirely misunderstood by everyone else and regularly ranted about it to his facebook friends!

Here is a sample of Sam, culled from his page by his fb friend Duggy Dyer.(Being so clever you’d think he knew Duggy was really me, but he chose to ignore that… “Duggy please tell Mum” “Mum says…”) Anyone who was fb friends with Sam in 2012 will recognise it…

“I’m a 25 year old hermit introvert with an 155 IQ who is surviving terminal brain cancer 3 years going now with doses of hands on spiritual healing and massive doses of illegal cannabis resin, who went on national TV twice to out himself to help other people despite being sick of society, and by the way despite being functionally atheist I was touched by an inexplicable healing heat (yes, you can say it, God) during a Christian evangelist meeting and am wrestling with my purpose/goals/health/social life/finances, so please don’t think I’m an egomaniac, know-it-all, depressive, or angry misanthrope, because I really like individuals and even despite all of that don’t want to make you awkward because the only way out of all of this is the communication, warmth, and understanding that I will never ever admit I secretly crave…

 “…my mind and freedom to choose is the only thing I have left and I’ll never surrender that no matter who decides to be condescending or mouthy, because if I do, I am the victim they say I am. So you’re stuck with me, my scatterbrain, my motormouth, my broken heart, my social anxiety, my death sentence”

 

This extraordinary and clever young man (155 IQ) was our son. We were the ones stuck with his ‘scatterbrain, motormouth, broken heart, social anxiety and death sentence’ – though he never burdened us with them… apart from maybe the motormouth! It’s good to remember him and to recognise what he was up against, day after day, inside that head of his.

During that precious weekend, if there had been any doubt in our minds, it became obvious how badly things were deteriorating in his incredible and flawed brain. The boy who had memorised all 176 episodes of Star Trek TNG and their directors when he was 10 or 11 couldn’t remember his computer password. He couldn’t get on-line… This really was a major blow, but he was so happy to have us around he didn’t make a deal of it. I wonder what he thought was happening…

That evening he thanked us. He said how much he’d enjoyed hanging out with us all, how much he appreciated it. It’s true, it wasn’t a common occurrence. Becca lives in Brighton, Sam himself usually didn’t want it. The 4 of us struggled to find something in common once the Lord of the Rings years finished. Christmas Day was our family highpoint, sometimes birthdays and less often a film we all went to see – when Sam had usually already seen it illegally pre-release on-line!

Our time together had been so restorative that at the end of Sunday 16th I posted this on facebook. “Sam was really unwell yesterday and we were preparing for the worst, but he’s made an amazing recovery and seems almost back to normal this evening… Lots of good family time was had by all and though the rest of us are pretty tired going into the week, all is well…”

For now.


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Sister to the rescue

The challenge with revisiting the days leading up to Sam’s death is to remember them as they were at the time when we had no recognition of what was coming or how long we had. We simply stumbled forward blindly, doing what needed to be done, going with the flow and responding to the needs in front of us.

To say we found amazing grace as we did that may sound trite, but for me it was true. I have an inbuilt response that numbs my feelings in a crisis. Martin with his medical instincts and general anxiety levels undoubtedly suffers more at first and then adjusts later. But I think we can both say that through those weeks… we coped, we felt held.  Of course when you are in the middle of something the body’s adrenaline kicks in and somehow you keep going, but we also had certain levels of peace and acceptance and knew what to do: we were carried.

None of that necessarily happens in the revisiting. Looking back from here, the shadow of inevitability lies heavy on the path, oozing sadness and regret. There is no grace for me in looking back on any part of our long journey, anymore than there is in looking ahead. I cringe when I read my old blog posts! I don’t know how we managed the months with Jessica or the media coverage. I realise that many of the things that made our story public knowledge would not have happened if I hadn’t been blogging about our journey! (And here I am doing it again – oy vey!)

But that is why I want to look back now, to prod and probe, to see through a clear lens, see it for what it was rather than shrouded in a haze of drama and activity. I want to get a better handle on what actually happened and where Sam was in the middle of it all – and how I felt and feel as his mother. I have been numb for so long, protected by anti-depressants, unable to access my feelings. That is of course a blessing and relief, but to be honest I also feel guilty that my response to the loss of my son is so cool, so measured. The ending of a 5-year anxious wait is undoubtedly something of a relief when it comes, but the loss, the LOSS, of who he was and should have been had been going on for years. That is what comes back to strike us to the heart. That is what we grieve over – all that promise lost.

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He was a lovely little boy but we know we lost that little boy a long time ago. No-one’s sweetly remembered childhood is ever coming back – there’s nothing we can do about that… other than have grand-children!  He grew into a withdrawn schoolboy and self-sufficient teenager with his own particular obsessions and amidst the busyness of family life it is hard to pinpoint when he began to slip away from us.

We don’t know, for instance, how long the tumour was growing before it was discovered: it must have been very, very slow to have reached such a size with no symptoms for years. He lost his joy and life, adolescence happened and we moved to the Midlands; he hated school in Loughborough and the internet took over… You don’t realise it is happening at the time and I heard his version of events much later. Surely this is a story I have told before… it feels like a damning summary of my failed motherhood. It was quite amazing how the years of illness made way for confrontation and reconciliation between us.

Of course this process happens in most parent/child relationships, but I don’t think Rebecca ever lost that very special sibling connection between a big sister and her little brother.  As someone said recently, there are no memories of her childhood in which Sam does not figure: he was her compatriot in the land of childhood, her closest playmate. Appropriate then, but all the more painful, that she was the one who discovered him in distress on Saturday 15th November 2 years ago. I was on a train back to the Midlands when I received a text from Martin: “Becca has called an ambulance for Sam. Ring her”

Sam’s sister had been staying with friends in Loughborough before meeting up with us. She hadn’t seen him for a while so that morning decided to surprise him. But when he eventually managed to answer the door, he was in some distress and disarray after stumbling downstairs. He simply said, “Help me, Becca” 😦 😦

The pathos of this moment is almost too much to bear. Sam, who had been so strong and determined to ‘beat this thing’ finding himself overwhelmed by his own body and his sister catching him in her arms, wrapping him up and sitting him down before calling 999 and then her father. I was miles away on a train while my 2 children faced this alone.

But if I had been there instead of her? Would he have asked me, been honest with me? Would he even have answered the door? I don’t know – he had done so much to protect us, his parents, from anxiety about him. He hated us ‘snuffling around’ his life! Perhaps his childhood friend was the best person to arrive at that moment. She could see straight away the change in him, whereas we had been living with a slow decline and may even have missed it. She could see he had left-sided weakness, that his arm hung limp and his leg wouldn’t move properly. There had obviously been some sort of growth or bleed in the tumour resulting in loss of function on the left side. But Sam himself didn’t seem to be aware of it: he apparently also had left-sided visual inattention so to him that side of his body didn’t exist!

Martin and Becca decided to cancel the ambulance. What good would a trip to hospital do? What could anyone do for him? He wanted to be in his own home. It wasn’t a life-threatening event yet: this was the progression we had both expected and dreaded. So I made my way to Loughborough as quickly as wheels would carry me. Martin who had so recently returned from France to a weekend on-call, left his patients and came too. We all convened at 8c Park St and soon the 4 of us were together in one place, hugging each other, assessing the damage and deciding what to do next. Being a mum I cooked a meal with the few things I found in his fridge. Being Sam he snuggled up on the sofa with his cats and family around him and asked us to stay. We made the usual jokes and decided to settle in for the evening and watch ‘The Lord of the Rings’ trilogy again… What else would the Dyer family choose to do?!

As I write, 2 years ago at this time that is what we were doing – looking after our son and brother, supporting and comforting each other, with no real idea of what tomorrow would bring  – while watching the brave hobbits on their impossible journey to defeat evil.