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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Advance warning

2 years ago tonight I was staying with my father and step-mother in Totnes, whiling away a dark Friday evening, watching TV or reading, with no idea at all of the life-changing events about to unfold. It had been my Dad’s 86th birthday the day before – I’d gone down to see him for the occasion. Now I was looking forward to getting home because Becca was coming up from Brighton for the weekend to see the flat we’d been renting in Leicester – particularly so that she could understand why we had decided to buy the house from our landlady!  It was a rather crazy decision as it would be our 4th property…  But we knew it was too good an opportunity to miss.  It was only later on we discovered quite how good.

I also needed to get back to check on Sam, who had been a bit off-colour for a while with what he described as a ‘bug’. I’d called the doctor in to see him while I was away, but apparently she had said to rest – and think about getting another brain scan. He hadn’t had one for about 3 years: he didn’t want one. As far as he was concerned the tumour was old news, dealt with, history. No this was just ‘a bug’ – maybe somethng wrong with his drainage shunt which relieved the pressure of fluid in his head – and he was waiting to get better. Meanwhile I knew he wasn’t eating much – a great bone of contention between us! – and was most probably lying around on the sofa in his dressing gown, maybe on-line,watching films or playing games. His friends would visit bringing weed for them to smoke as well.

There was not much I could do about any of this as we had installed him in his own house and couldn’t often get past the threshold! He’d been given a terminal diagnosis nearly 5 years before and was convinced he had beaten all the odds: he had a will of steel and was utterly determined to shape his own destiny. So… parents are fairly redundant in most 27 year old young men’s lives! I had gone to Devon and Martin had also gone away – to Nice for a work meeting. We had been getting on with our lives as much as possible and we assumed our son was OK because that’s what he wanted us to think. He was in charge. If he needed anything he could ring or call in the lodgers from our house round the corner.

image-1I had however, bought him a large fluffy toucan puppet from Totnes market to wear on his arm! He may have been 27 but he’d had a love affair with squeaky glove puppets since he was very little…This one made an appropriate rude noise when you pressed it and Iimg_2794 couldn’t resist buying it for the lad – both for old times sake and also because his father has a tattoo of a toucan on his derriere 😉 Little did I know that it would accompany Sam into and out of hospital and be on his bed at home when he died less than 2 weeks later.

So – no advance warning then, as I sat cocooned in the cosy lounge in Devon. Or maybe we’d already had the warning years before but it’s siren had dulled with time and all the camouflaging techniques Sam employed. The truth was we’d lived with anxiety for so long we were like elastic that has lost it’s stretch, so we coped the best we could and dulled it as necessary. Even his little ‘illness’ hadn’t really rung any alarm bells… he’d had episodes like this before. So no, there was no advance warning of what was about to start in 12 hours time.

Now I am giving you advance warning. 2 years on I am going to revisit those 10-11 days and write about what happened. I have told much of Sam’s story over the years, but even in the post I wrote about his death and burial one month later I didn’t go into detail in the way I intend to now.

Why? Why now? Well – I think I need to… I think it will help me go deeper in my grieving than I have been able to go this far. Painful it may be, but I must make room for the buried pain to come out if my heart is ever to be healed. Perhaps this therapy can help me and even some others.

Also as a tribute to Sam. We have never been able to face putting together a celebration of his life – not yet anyway. We had a small informal gathering for some friends and family when he was buried and promised more later – but it has not happened: I can’t face it. Perhaps I can use this time, now the initial 2 year phase of acute grief has been experienced, to pay my respects to a brave man, to remember his humour, his strength and the loving things he said in his last days.

Anyway, that’s the plan – a post every day remembering our roller-coaster journey of 2 years ago. Buckle up!