“We make a living by what we get, but we make a life by what we give.” – Winston Churchill
I recently attended the Sands East Network Day, an annual event where Sands volunteers from across the East region get together to share ideas, celebrate successes and work together with colleagues from Head Office to improve and develop the support provided to bereaved parents.
It was the first time I have been involved with the wider East Network, and as a relatively new member of Sands I was apprehensive about what to expect. I knew from talking to member of my own group that the East has a wealth of long-serving volunteers, whose vast experiences and expertise are well recognised and highly valued. I didn’t know what, if indeed anything, I could add.
I’ve never been overly confident in myself; I suppose you could say I’m a bit fur coat and no knickers, delivering a remarkable impression of someone who is outgoing and self-assured, whilst inwardly plagued by an internal monologue of doubt and scrutiny.
It’s a common misconception that being extroverted and being confident are one and the same. Although ‘quiet’ is not an adjective frequently used to describe me (I talk far too much – and always too quickly) I have never assumed that anyone was listening to me – or that I was even worth listening to.
I’ve got many of the usual hang ups: anxiety at talking to strangers, a pretty toxic body image and a tendency to chronically overthink every situation, and usually mask these with a combination of self-deprecating humour and a penchant for elaborate storytelling. I have managed one or two accomplishments (mainly academic) primarily fuelled by copious amounts of caffeine, dogged determination and the enduring love and support of friends and family.
So it probably comes as no surprise to hear that the little self-worth which I had accumulated over the years was promptly obliterated the moment Findlay died.
All those doubts and fears which I had harboured since childhood – am I good enough? Can I do (x, y, z)? Do I deserve to be happy? – were suddenly impossible to silence. I had failed in the one thing I had so desperately hoped to achieve: becoming a mother. That spitting voice which hissed ‘You’re worthless’ in my ear was now equipped with hard evidence to the fact; devastating case in point.
My life, it seemed, was over. The person I once was – the person I hoped to be – gone. I would spend hours looking in the mirror, desperately searching for something I recognise; but all I saw was the hollow face of a stranger staring back at me. Even the simplest of questions, like what I wanted for lunch, left me paralysed with indecision. I couldn’t trust myself, not my instincts or my judgements; my whole existence just seemed futile.
And it was out of the darkness, the black abyss which threatened to drown me, that I discovered Sands.
I knew about the charity at a national level; like many bereaved parents we had recovered the family support pack and memory box when Findlay died, and been directed to their helpline, but it was the decision to get actively involved with our local group which really changed things for me.
As I’ve written before, when Tom and I got involved Norfolk Sands was barely ticking over: supplying the local hospital with training, information packs and memory boxes but unable to provide the much needed telephone, email and group support to bereaved families. They had lost a number of volunteers (for various reasons) and were crying out for more manpower. It was as if they needed us almost as much as we needed them.
In joining Norfolk Sands, I gained a sense of purpose; something I could commit my time and energy to; an outlet for my love, and grief, and the utter heartache which was suffocating me.
On losing my son, I had found myself a fully paid up member of a club which I barely knew existed, and one which I never imagined I would belong to. The broken hearts club. The aching arms club. The world of dead babies. A world filled with pain, and loss, and longing, and fear…but I soon discovered it is so much more than that.
It is a world full of love; full of compassion; full of strength; full of courage; and full of hope. A community which stands together through the darkest of storms and looks towards the future, to creating a world where fewer babies die and no parent ever feels alone.
Walking into the Network Day last Saturday (late, thanks to weekend rail disruptions, and half way through the Chief Exec’s speech) that is what I saw: a room ablaze with the indomitable qualities of this community. It was the first time I had been in a place with so many other bereaved parents; the first time I knew that I could talk openly about Findlay without the fear of being ostracised, or met with looks of horror and sorrow. The warmth and understanding which radiated from each and every person strangely made me feel as if I’d come home. It was palpable.
And the faces within that room were many and varied. Baby loss does not discriminate on the grounds of age, race, religion or creed. It sounds cliché, but there really were people from all walks of life sat in that function room, each one fuelled by the love for a child who is missing from their arms. Whether our baby died less than 12 months or over 25 years ago, we were all united by our grief, our compassion, our refusal to accept that stillbirth and neonatal death ‘just happens’, our dedication to improving the care and support bereaved parents receive, and our unfaltering commitment to be there when they need us.
Talking to these courageous mothers and fathers (yes, I’m very pleased to say there were a large number of men in attendance) many of whom had been involved with Sands for a long time, I gained a sense of what my life could look like 10, 15, 25 years from now. They have survived, as I am trying to do, and have forged a life full of love and joy and fulfilment; one which honours and celebrates their baby, but which also embraces the full spectrum of life’s experiences. They have been changed by there loss, but not defined by it. It has made them, not broken them. And volunteering has been a fundamental part of that.
Volunteering with Sands has saved me. It gave me a purpose at a time when my world felt broken and desolate.
It enables me to commit myself to actively doing something in memory of Findlay. Life gets so crowded; the weeks quickly evaporate (especially with a 9 month old in tow!) and it is a source of great torment and anxiety that I am unable to devote the time and energy to his memory which I once did.
Of course, there isn’t a day which goes by when I do not think of Findlay; when I don’t speak his name; when my heart doesn’t ache at his absence, but I take comfort from knowing that there are tangible periods within my week which are spent doing something for and because of him. It may not be taking him to swimming lessons, or out to buy new shoes, but it is his time.
It has helped me find (some of) my confidence again. I have written before about the event which we organised in memory of Findlay and I feel very proud that the money we raised has gone to fund a piece of equipment which could help other families.
It has given me a community, allowing me to feel part of something which is far greater than my own grief and loss. It takes all the hurt, and trauma, and devastation at losing my child and channels it into working towards making positive changes for the future. I am only a tiny piece of a large and far-reaching jigsaw in the battle to reduce the number of babies who die and improving bereavement care, but this tiny piece is Findlay’s legacy: his gift to a world he never got the chance to be a part of.
But perhaps most importantly of all, Sands (and in particular, volunteering for Norfolk Sands) helped me to make a life out of the ruins of loss.
And for that, I am forever humbled and grateful.
For more information about Sands and the work they do, head to their website: https://www.sands.org.uk/
Information about Norfolk Sands, including details of their support line and meetings, can be found at http://www.norfolksands.org.uk/