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From Precious Past Hopeful Future by Erica Brown

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With gratitude to the parents who shared their stories with me at the SOFT Conference 2010.
Erica Brown Vice President of Acorns Children’s Hospices in the West Midlands.

   

However we continue to parent our child the relationship can provide comfort and solace and a way of taking memories forward to the future. 
Sometimes people write poetry or a journal as a way of helping them understand what has happened.

Tumbling, careering, spiralling down, I dream that I crash,

Smash and cascade through the depths of an abysmal black hole,

Reaching out, grasping for you.

I scream your name but find that I am voiceless

And I wake to find that you are already gone.

Whether a pregnancy ends prematurely or a mother gives birth to her baby she does not abandon the relationship she has developed with the child, but the relationship changes. So it is when our baby is diagnosed with a life-limiting illness, either prenatally or after birth. Life changes – everyone in our family is plunged into a confusing and unknown world. Our normal routines are shattered and our relationships are turned upside down. Our lives as we had planned them stop, but the world goes on.

The death of our baby or child is understandably considered as more painful than any other kind of bereavement. Our grief is our whole body response to the pain we feel. Indeed, many parents describe the experience as having part of their body severed. As bereaved parents we may have memories that can keep us ‘connected’ with the baby or child we lost. This article includes some of the thoughts I shared at the SOFT conference and develops the idea that we can continue parenting our unborn baby, child after their death, albeit in a different way. The parents’ words are exactly as they told their stories or wrote down their thoughts. Memories can also be painful and often we perceive the pain of our loss as equal to the love we feel for our child.

'My friends say that time will help me – it will take away the pain. But I don’t want to forget – Oh NO!, I want to remember – plain as plain. I want to remember because if I ever forget, how will I ever live?”

Our child’s ‘spiritual’ existence is often evident in everyday life – in the wind, the stars, the snow, the sunshine and the bubbling stream. It is a kind of ‘energy’ that exists between our child and us – a living comforting presence. Parents may describe this as their child communicating with them and reassuring them.

'On the first anniversary of his death I was standing ironing in the kitchen. A feather floated through the window and I remembered how an identical feather had floated onto his coffin before the burial. I just know that he has sent a sign to say that he is OK.'

'I shall never forget the moment when I realised that I could let go of the heaviness of my emotional pain without being disloyal to the memory of all she meant to me.'

'Sometimes I cannot remember the details. But I remember the feeling, somewhere between laughter and tears. I remember loving that small beautiful person – my child. I have forgotten so many things, but I remember the feeling. Always the feeling.'

To write about our experiences as unequivocally positive, would however, deny the pain and anguish of what has happened to us. Experiencing dreams and nightmares where we reach out for our child only to discover that they are no longer within our grasp are far from uncommon.

'Sometimes I dream he is around. And other times I don’t. When I sense that he is, it is such a strong feeling. I am 100% certain it is real.'

Death is always traumatic because it cannot be reversed. It robs us of the present and the future, but it does not mean that we have to forget the past. Our child’s life has taught us important lessons. As we carry on living, memories are the precious gift our child has left us. They are accessible links to the past that can be revived. Talking about our child can act as a blueprint for the values that shape our future.

'I shall never forget the moment when I realised that I could let go of the heaviness of my emotional pain without being disloyal to the memory of all she meant to me.'

'Sometimes I cannot remember the details. But I remember the feeling, somewhere between laughter and tears. I remember loving that small beautiful person – my child. I have forgotten so many things, but I remember the feeling. Always the feeling.'

When a baby has lived, even for a short while, recalling shared times is very important. Some parents talk about the sound of their child’s laughter, tender moments when they held their child and even the sense of their child’s mischief! Memories are like perennials that bloom again after the first winter of grief gives way to life. Thus, we do not have to let go of the ties that we have with our children but to create new bonds that keep our parenting role alive.

'I was afraid to let go. I was afraid that I might forget about him, the colour of his eyes, the shape of his nose, the sound of his voice. In a strange way my pain was confusing, yet a familiar way of remembering. Finally I came to understand that his life meant more than pain – it also meant joy, happiness and life. A little voice in my heart told me that it was time to let go of my pain and to make room in my life for my memories of who he really was. My memories have gradually become lighter and more spontaneous and instead of hurting my memories bring comfort. He still teaches me so much.'

Some of us may choose mementoes or precious objects which will provide a link between ourselves and our child.

'I have a birth certificate, a death certificate and a hand print. They are reminders that Toby was really my son.'

The memory of our child is etched on our hearts and if they lived for a while their personality shines through as part of their legacy to us.

'My daughter had a beautiful smile and a wry sense of humour. When the hustle and bustle of the day was over and I had changed her nappy for the twentieth time, organised her tube feeds and made her as comfy as I could, I would sit crossed legged on the floor and create her special place in my lap. I would turn on the CD player and together we enjoyed what for us had become our time. As the melodies filled the stillness of the evening, her body, otherwise tense and rigid through her pain and discomfort, relaxed, and we melted into a mother and ‘daughterness’ which is hard to describe. Gradually, as I rocked her, she would fall into a deep slumber. I would gaze at her dark lashes and in her sleep a smile would hover around her mouth slowly widening into a contented grin .The memory of this time is my soul food which sustains and comforts me.'

'His legacy to us is his example. He was stoic, brave, enthusiastic and funny to the very end, even though this was all wrapped up in a frail body that let him down.'

However we continue to parent our child the relationship can provide comfort and solace and a way of taking memories forward to the future. Sometimes people write poetry or a journal as a way of helping them understand what has happened.

Bereavement is a complex process. There is no fixed formula for working through the turmoil we feel. Being a bereaved parent is a reality but it is not the only part of our life. We need others who will travel the journey with us and help us make sense of what has happened, at our own pace. We need people who will celebrate the bonds that we have with our children and who are prepared to recognise that we are very much parents. Sometimes, just sometimes, we become stronger in the most broken places.

I remember your steady heartbeat
As the gentle sound of lapping waves against a rock.
I remember your smile like the summer sun
Spreading warmth everywhere.

I remember your laughter like ripples on a pool.
I remember your tears like summer showers
 Unable to dampen those golden hours.
I remember the calm before the storm.
I remember your love.

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