12 May Such a simple question – ‘how are you?’

I wrote this post about eleven months after Ben died. It’s now nineteen months (scarily edging towards two years) and I’m staggered by how little has actually changed!

I will probably spend the rest of my life learning how to dodge around a plethora of love, pain and sadness. Sometimes they separate out but at other times they’re all jumbled up together. The loss of a child is a permanent state – something we won’t recover from and (whether I like it or not) it will always define this new me.

“It’s exhausting being strong, let no one tell you otherwise. There are a million ways to heal, every single one will wear you down. “

Tyler Knott Gregson

I’m very thankful that people still ask me how I’m doing. The problem is I don’t have the right words to answer. It’s so complicated and changeable – almost impossible to describe in a couple of short sentences. So for those who are really interested

here goes…

I find it utterly exhausting trying to look and sound normal! The death of my lovely boy is so life changing that I hardly recognise myself. I feel like I’m faking living – trying to show an interest in a world that is foggy and has lost its appeal. Life simply feels flat and empty and heavy and hurting!

All the time.

Tears come and go without warning but crying is only an outward expression of an endless inner sadness. It’s like a blanket wrapped so tightly around me that sometimes I can hardly breathe.

But I have discovered there are little threads of love and joy woven into the fabric, which thankfully are just enough to keep me looking and sounding human. Enough to enable me to get up every morning and plough through another day. Enough to allow me to celebrate and feel thankful for every person in my beautiful family – including Ben. Enough to help me smile and be genuinely interested in the lives of other people.

Keep your capacity for joy, guard it with the rest of your life.”

Tyler Knott Gregson

But I’m so so tired.

I feel like I have run out of steam yet when I crawl into bed at the end of another day – the longed for luxury of sleep eludes me.

Sleep is meant to allow my mind to rest and stop thinking but the minute my head hits the pillow my thoughts go crazy!

Sleep is meant to give my mind and body time to recharge ready for another new day – to generate energy and motivation but instead when I do eventually sleep I wake up in a panic and feel exhausted.

I long for respite from thinking – from going over and over events – from reliving that last day of completeness mixed with tragedy which will be imprinted in my mind forever! The day that everything changed – that everything I thought was safe and secure and beautiful was smashed into thousands of pieces – and I was left with a Ben shaped hole in my heart.

I assumed when Ben first died that I would dream about him. I hoped that during the night my life might still be normal – that I would hear his voice and he would talk to me. That I would relive happy memories and find a way of surviving by living in a parallel universe – grief heavy days compensated by beautiful happy nights.

But it didn’t happen like that!!!

My dreams were and still are so frightening and disturbing that I dread them. Even now, I don’t dream about Ben even though I try to make myself – instead I dream about horrible things – everything going wrong. My dreams are more like nightmares but in the morning the real living nightmare starts all over again. Day after day after day

I’ve tried pillow spray, herbal remedies, praying and mindfulness. I haven’t tried prescribed medication – not yet and not because I think it’s wrong – but because I don’t want to block out any of the grief that keeps me connected to Ben. Also because I see it as a temporary solution knowing I would still have to face the brutal reality of acceptance at some point.

‘Grief is the price you pay for love. The only cure for grief is to grieve.’

Earl Grollman

I’m describing all this because maybe you’re in that same place. Maybe sleep has become your enemy too! It always helps me to know I’m not alone – that I’m not the only person who feels that grief is making them crazy!

My grief is due to the sudden and completely unexpected death of our precious, gorgeous twenty five year old son Ben. A beautiful fit healthy adventurous and smiley boy who loved life and lived it well! His cause of death is Sudden Arrhythmic Death Syndrome or SADS. (This is when someone dies suddenly following a cardiac arrest and no obvious cause can be found.)

Ben’s death has obviously left our family in a state of total shock – one we will never fully recover from. I’ve read somewhere that you just have to relearn how to do life!

We’re trying!

The massive jolt of shock that hit me that day completely upset my rhythm which in turn has affected all my cognitive capabilities.

Nearly eleven months later I still feel like I have been hit by a tsunami and my insides are being churned around so much that my emotions don’t know whether they’re up or down – I often don’t know how to react or respond to people or situations. I’m aware I’m getting it wrong but don’t know what to do about it.

I talk too much or not enough and feel disconnected from the people around me. I’m like an observer on the sidelines – watching and wondering how they can carry on doing life and being normal. A glass wall seems to separate me from normality. I’m there but not there! Another paradox.

It’s hard to believe I too was once that normal person only eleven months ago – but it feels like a lifetime.

Sometimes I hear myself having normal conversations with people – sounding and looking normal – and the real me on the inside is horrified!! I want to run away from myself. I think I must have become two people – how else could I betray the true emotions that are screaming at me on the inside?! My darling son is dead and I’m acting normally like I don’t care!!

Other times people ask me how I’m doing – they give me the opportunity to tell them – to be real! But I can’t do it. I can’t actually find adequate words to describe the mess in my head and heart. I find it so much easier to write what I can’t say!

‘The agony of losing a child of any age is unprecedented. There is no age or point in time that makes it any easier. No parent expects to face the death of their child because it goes against the natural order of life – a stolen future, hopes, dreams, and potential that can never be fulfilled. The longing for the child and the feeling of emptiness can last a lifetime.’

(Child Bereavement UK)

Ben’s death will always feel like I’ve had part of my heart cut out. It has left an empty void that can never be filled. Time can’t heal that! Ben is part of my DNA and when he died, part of me died too. I’m trying so hard to work out how to keep going – how to fit back in. I’m struggling to find words to describe the disconnect between the person I once was, the person I have become and the rest of the world.

Anyone trying to pick up the pieces following the death of their child will know what I’m talking about. There will always be life before and life after – the you before and the you after!

That one day changed absolutely everything and there is no going back.

At that exact moment… everything about my life changed… forever!

I wonder every day how it’s possible to keep going when I’ve got nothing left to give?

I don’t actually have any answers. Somehow others ahead of me have survived – are still surviving- and I expect I will too. But it’s hard. So so hard – not just for me but for my whole precious broken family!

CS Lewis in his book ‘A grief observed’ knows how it feels. He writes following the death of his wife that the emptiness feels like an amputation. You’re still alive and life does go on – you can actually live without the amputated part – but you will never be the same:

“He has ‘got over it.’ But he will probably have recurrent pains in the stump all his life, and perhaps pretty bad ones; and he will always be a one-legged man. There will be hardly any moment when he forgets it. Bathing, dressing, sitting down and getting up again, even lying in bed, will all be different. His whole way of life will be changed. All sorts of pleasures and activities that he once took for granted will have to be simply written off.”

I’m simply having to realign living to incorporate pain and heartache. The knowledge that it will always be like this frightens me but I am choosing to survive and I am choosing to keep searching for joy.

I haven’t locked myself away and hidden from the world. I get up, get out and go to work every day. I even enjoy what I do! But I’m so exhausted – just plain and simply tired, worn out and sad.

I thought my faith in God would be enough to carry me when times got hard. Instead I’m floundering and overwhelmed by confusion and so many whys. But maybe…

“One day you will look back and be glad you did not give up. You will be grateful that grace was enough!”

MHN