Gone upstairs

a personal journey through grief and change

Sister to the rescue

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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.

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Author: Sally Ann

True-story teller - words and pictures

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