Sunday

It’s Wednesday 23rd November, but I keep thinking it’s the weekend because it was…2 years ago. I am travelling in both time zones at the same time, re-living the emotions, seeing my son’s face in the air in front of me. This is what I wanted to happen – to bottom out some of the stuff I have ignored and find out how I really am. 2 days ago I woke up realising I’d buried so much anger – for years, since childhood when my mother died and I just had to get on with life without one.  Anger was a fearful thing, not allowed… my father held all the rights on that one, losing his temper and shouting at us until that is all I can remember. I was saved when I was sent away to school… But I buried the cry.

So the motherless child also loses her son – plenty to be angry about! But no – I have accepted it. This happens in life – other people have a much worse time of it… of course they do. I have nothing to complain about, my life is blessed and I am loved. Grief doesn’t know this. Anger has to have it’s part – resentment that it isn’t fair has to be felt and acknowledged before it can be dismissed… So there it is: I can name it. I lost 5 years of my life to Sam’s brain tumour, worrying, trying to help, caring for him, being a servant and sounding board. He was often nasty to me – to us – resented us, blamed us… “You brought me to Loughborough and I hate it!” “You sent me to school!!” “You hit me!” – sorry, that’s what we were taught to do back then… 😦 “You argued with Rebecca and frightened me!” Sorry, sorry, sorry… that’s all parents can say. We can’t change any of it, please forgive us...

We were reconciled before the end. We were forgiven and forgave. Only now I recognise some of the cost to myself, but I bear no grudges toward him: to face childhood hurts is to grow up. I am not angry with God – but perhaps I am angry with myself…? Whatever it is, I choose to release that resentment, recognising that many of the choices I made were exactly that – my choices, me trying to make things better. No-one made me a slave to his suffering: yes, my life was forever changed, but it’s alright – I’m OK and I still have some life left to live…  Life isn’t fair and shit happens – get over it. Processing, processing, the little wheel is turning in my soul as grief works it’s way out… I see his face in my mind’s eye – the pictures I have posted here – and I can weep at last.

On Sunday we were getting very near the end – but we had no real understanding of that. I spent quite a lot of time with him – he was in a good mood, wanted to talk about The Imitation Game, what it was like to be so intelligent, socially awkward, misunderstood… Sam wasn’t gay but he felt ostracised for all sorts of reasons. I’m sure had he not had this disease he would have been brilliant at something: I’m also sure he would never have fit into society, had a 9-5 job or been in any way ‘normal’! It is so painful to me to know how he felt as a child, bullied, rejected as different – how he would hide in the library from the other boys and simply couldn’t accept the system. How could we know what was going on inside that brain when he didn’t tell us? When we moved to the Midlands he hated the Grammar School – which was opposite our house and we thought would help him achieve what he was capable of. He couldn’t stand the uniformity and ambition and tradition, the sports and forces afternoons… all those fees for 9 GCSE’s and an angry young man! Yet he found a way through it all and was at peace before the end: for that I am eternally grateful.

He transferred to the local college for 6th form and eventually found a couple of friends who suited him far better – James and John. James had been to the hospital on the first day and back to the house a couple of times since. This is John, visiting Sam for the first time for 2 years. They were so happy to see each other! Sam used my computer to show John what he’d been studying about business and presented a small (but large!) hard-drive: “John, this contains everything I need to get my multi-million dollar business off the ground!” Maybe it did – he had been collecting material for long enough. Not many days later I put that disc in an envelope marked with his registered company name: AIRBORNE MARKETING, HEAVEN and it was buried with him.

Meanwhile, he hadn’t forgotten it was Sunday, the day of our agreement, and rather sheepishly said that actually this bed in the front room was rather convenient and cosy! In the afternoon he entertained another visitor from his regal position – a friend he hadn’t seen for a while who’d moved away. We’d done our best to let all those who had invested time in Sam and been close to him know what was happening and their visits and phone calls made those days really special. We had always hoped and prayed that when the end came he wouldn’t be reduced to a wheelchair and dependency as so many with brain tumours are – that it would be quick and painless. But this way was the best of all – long enough for family and friends to see/talk to him one last time, long enough for us all to adjust…

I was a lovely day – reminiscent of the Sunday a week before when we had all sat watching Lord of the Rings. The roller-coaster had made a few climbs and dives in between! Now it was approaching the end of the ride. That evening was an extraordinary precursor to the finale, as Martin came in to spend the evening with his son and I went home to bed.

Their relationship was never easy – the father working so many hours. He adored his little son, full of character and smiles, obsessed with ‘muke’ and later Star Trek, computers when they arrived. He would do anything for him – but despite that the resentments grew, as they always do in teenage years. “You are my father, not my doctor” – a line drawn at the start: so much pain for the impotent doctor. Yet the boy began to soften, open up, talk… and past issues were exposed and gradually cleared away: love triumphed! On this last evening he made room for his father on the bed and said he wanted to show him a movie…

The film was extraordinary: The Diving Bell and the Butterfly. It is about a man in his 40’s who has locked-in syndrome: he can’t move any part of his body except one eye, yet his mind is whole and well inside. He wrote the book by blinking his eye to communicate. He dies in the end with his father standing by. I haven’t had the courage to read or watch it yet, but Martin said he couldn’t believe he was lying beside his dying son watching a father crying over his dying son… I’ll tell you now what Sam said the following morning, when Martin asked him why he had picked that movie?

“I wanted to show you a film about a man who defied death”