My burden to carry

It has been more than three and a half years since my eleven year old son died from a brain tumour. Years during which I have wanted to haul back the very fabric of time and reverse the spin of the planet. Time, however, has other ideas and appears instead to have sped up and accelerated me away on a new trajectory.

These last few short years have rushed me away from the smell and feel of my son; have dragged me kicking and screaming from his soft cheeks and eyes full of love and left me questioning my place in a world without him. All I have now are memories and we all know how fickle the mind is. Already the memories have started to blur and wobble as though I am looking at them through ancient, cloudy glass on a hot summer’s day when the heat haze rises like steam from the pavement. It is hard to hold them together.

Did I dream him?

Was he real or just a figment of my crazed imagination?

As I write this I trace the curve of his jaw with my finger on a photo that sits on my desk beside me. He had such a strong jaw; a decision-maker’s jaw, someone not to be trifled with; the chiselled jaw of a romantic lead and the spit of his father’s. What would he look like now? How tall would he be? Would he still be just as clumsy? I can’t answer these questions and I hate that. I watch my other boys grow tall and two of them now tower over me, I see their faces change and grow spotty, their jaws sprout hair and their voices reverberate through me. My husband, Ben, choses to imagine Silas as he would be now. I understand he doesn’t want to leave him frozen in a pre-pubescent half-light, but I struggle to recall the exact curve of his lobeless ears and the sparkle that lit his eyes, so how can I morph him into a strapping teenager that I will never meet?

Ben and I grieve differently. It has been this way from the beginning and nothing has changed in the intervening years. It’s just the way it is and although we still talk, both of us give each other space and don’t try and force the other onto their own creviced path. We know that we have to make our respective journeys largely alone. This is hard and at times I feel so terribly isolated, but then I remember that Ben walks beside me just on the other side of an invisible curtain, akin to the parallel worlds rife in Phillip Pullman’s imagination. Perhaps it is the same with Silas.

I have grown close to another bereaved mother. She gets it and neither of us have to keep the mask in place when we are together: the mask which has melded itself to my skin over the last few years and allows me to laugh at someone’s jokes and nod my head understandingly as another parent moans about their child’s poor exam grades. This mother has sought solace with psychics and is convinced that her daughter still walks beside her. The scientist in me wants to pick holes in her stories and find flaws in her arguments but there are things she has been told that are impossible to pass off as tricks of the trade; things that only she knows and in some cases things that she didn’t even know but has subsequently found out to be true. I see how much comfort she gets from these meetings and I am jealous. How could I not be? But how do I square this with my perception of the world and the after-life? Her stories make me want to jump on the phone and book my own appointment but still I hesitate: not because of Derren Brown’s charlatan-exposing videos  or the warnings of one of my brothers – I hesitate because of my own fears. How could I bear it if I wasn’t given any concrete evidence that Silas still existed in some ethereal form or other? What if the medium couldn’t feel his presence? Where would that leave me except with a bubble that was well and truly burst? I’d rather not know than have an answer that I don’t want. Perhaps I’m just a coward and I can’t face up to this truth any more than I could face telling Silas that he was going to die.

Three years has not allowed me to get over my grief as some might think. There is no “getting over” the death of anyone you love – there is just finding a way to live with it. When Silas died I felt as though I was drowning. I was far beneath the waves surrounded by darkness and unable to reach the surface. Now there are times when my head breaks through and I can take a deep breath and sometimes I feel the pebbles and sand beneath my toes and think I have found my way back to shore, but the beach is steep and the next wave envelopes me. I flail and my head slips back beneath the water and even on tiptoes I can’t touch the bottom any more but I sense that the wind has dropped and the waves are beginning to weaken.

The shockwaves of Silas’s death still ripple outwards in our lives. A few months ago, my eldest son suffered a panic attack whilst on a school trip. He called us in the middle of the night desperate for help, convinced he had an undiagnosed brain tumour. He’s smart, he knows how unlikely it is, but that doesn’t stop him worrying. My youngest has had constant trouble sleeping and is fearful of being awake in the darkness. His brother died during the night and he knows that bad things happen and that his parents can’t keep him safe. He tries to suppress these fears but they surface in violent nightmares and a few weeks ago he nearly slept-walked out of his first floor window and was only saved by his father’s lightning reactions.

As a family, we talk about Silas. We talk about him a lot. I want to keep him fresh in the boys’ minds. I don’t want him to fragment and spin away. I want him to be a part of everything we do. My eldest son’s girlfriend comments on how easily we drop him into conversations. She’s right, it’s as though he has just slipped away into the next room. I like it. It keeps him close.

A few weeks ago, in the middle of a long car journey my youngest son and I start playing a game the boys have always enjoyed. One person suggests two random choices and the other has to pick. It always starts innocuously enough.

“Cherries or apricots?” says Inigo.

“That’s easy,” I reply. “Cherries always.”

“Dime Bar or Snickers?”

“Dime Bar every time, you know me.”

He narrows his eyes. “Stuck on a lifeboat with a tiger or a wolf?”

“That’s not a nice one.”

He grins.

“Tiger because cat food always smells nicer than dog food.” I lift my arm and sniff my armpit. “And I really don’t smell that bad.”

He giggles. “OK stuck in a lift with a vampire or a werewolf.”

I suck air through my teeth. “Have to go with the vampire as I always weirdly fancied Gary Oldman in Dracula.”

“Death by guillotine or hara-kiri?”

“Guillotine. Definitely. Quicker.”

He chews at a nail. “A million pounds or five minutes with Silas.”

“No contest,” I say. “I’ll take the five minutes.”

“Me too.“ He looks at me strangely out of the corner of his eyes.

“What?” I ask.

“But then we’d have to say goodbye all over again.”

“Mmm, that wouldn’t be nice. But I’d still take the five minutes.”

“So would I,” says Inigo. “But I’d take my five minutes when I was about 30. That way I could tell him about everything he had missed.”

My eyes well up and I stare at the road ahead and try not to blink.

“Have Silas back or stop a bomb blowing up the Sydney Opera House with the President of the United States inside?” continues Inigo.

“Have him back for good?” I ask.

He nods.

“Have Silas back then.”

“Have Silas back or stop a bomb blowing up the Sydney Opera House with the President of the United States inside and a bus full of school children?” he fires back.

I sit in silence for a few moments then sigh. “Stop the bomb.” I pause,  “Sorry Silas,” I add in a whisper.

Inigo raises an eyebrow.

I shake my head. “Couldn’t do it to all those other mothers. How could I knowingly send someone else on this journey?”

He leans across and squeezes my knee. “I’d choose the same.” He cranes round to see my face and make sure I’m not crying. “We’re doing OK though. On this journey, I mean. Aren’t we?”

I take a deep breath. Here I am, sitting in my car, having a strange conversation with my twelve year old son about choosing not to resurrect my dead son. A surreal, but I suppose, important moment. I puff out my cheeks and let the air out slowly. “I guess we are.”

He nods reassured. It’s the truth, we are doing OK. I wouldn’t say we are happy, not in the way we were; our tempers are too short and it’s still difficult to be at social events, but we are finding a new way to live and laugh and life is carrying on. The boys are doing well at school, they still wind each other up, we play loud competitive games together, we joke and fool around and play music loudly and we all sing full volume when we are doing the washing up. We haven’t been able to face a Christmas at home since Silas died but we might finally be ready to brave it and this year could be the one. Most important of all, we don’t sweat the little things anymore. These last few weeks, two of my sons have been deep in A levels and GCSE’s but they know their results are not the be all and end all; that there are much more important things in life to be bothered about.

So we march on and, having navigated through the last few years, I know we will keep moving forwards. I linger on the edges of closed Facebook Groups for bereaved parents and it helps to feel less alone. There are so many of us who are walking this road, living day to day but screaming inside. I see that the agony never goes away but I don’t want it to let it define me or my family. Silas’s death is a burden I have to carry always but I find these days that I can flex the relevant muscles slightly more easily, as though I’ve been working out in the gym. I’m “ripped” now, as my boys would say.

In the dictionary a burden is defined as a load, something grievous and difficult to bear but, digging deeper, I discover it also has another meaning – a burden is also the part of a song repeated at the end of every stanza, a refrain or the main theme of anything. This delights me as Silas loved to sing; out of tune and more often than not out of time but he was always singing and I know the few years we had together were a gift and although fleeting, his presence will run like a refrain through the years I have left. I will never stop missing him and the hole will always remain and there will be times I am miserable and times when I can’t see any point in carrying on but there in the background he will always be, humming away and giving me the strength to get through the day.

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11 thoughts on “My burden to carry

  1. Rupert Newcomb says:

    Darling Sarah,
    I can’t even begin to imagine what you, Ben and the boys must have gone through these last three and a half years, but reading this I realise that you coping (if that is the right word) through keep Silas alive in your thoughts, your conversations, your dreams and your family.
    Grief is a dreadful emotion, but a necessary and powerful one nonetheless. Personally I welcome grief as, to me, it’s part of my healing process but I am well aware it’s not like that for everyone.
    You have always been a strong person Sarah, and reading this I see that your strength remains. You may feel it waning from time to time but it is still there.
    I am sure that what you write gives hope, comfort and maybe understanding to those who have also suffered loss as you and your family have, and that can only be a good thing so keep writing and sharing your story.
    I know I have been a very poor friend but you are often in my thoughts and I get updates from Katie as to how you are.
    All my love Spensie.
    Xxx

    Like

  2. Carine says:

    Dear Sarah
    Thanks for your openhearted letter. I have lost my daughter five years ago and I go through the same feelings, agony and pain every day. Often feeling guilty about the times I could laugh, sing and enjoy the good things. How can I do all of that if Maike is not with us to enjoy it as well. But I know that she is there…walking beside us and sending us a sign every now and then to remind us that she is there. Look out for those…they are there. We will never stop missing them, but sharing our feelings is a comfort and does make things easier. Holding you and every parent who has lost a child in my heart.
    Love
    Carine

    Like

  3. Heather says:

    Hello my luv, you weave your words with seemingly fluent strokes but I can feel your heart breaking and your tears flowing.
    Your words are my preparation, you are a year ahead and I am watching you survive.
    ‘I miss u Sacha’ never quite does justice to the enormity of our feelings of loss for our babies.
    I’ll always look forward to your words Sarah, keep going..

    Love always Heather

    Like

  4. Hilary says:

    I happened on this by chance, a beautiful piece about something i can’t imagine having to experience. With love to you and your family from myself and my own xx

    Like

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