Today, October 15th marks the last day of International Pregnancy And Infant Loss awareness week, marked by a international wave of light at 7pm local time in honour of babies gone too soon. One of the main objectives of this week is to remove the stigma associated with baby loss, and encourage people to talk openly about baby loss; to break the silence.
Baby loss is part of our personal story, and despite it being five years almost to the day that we opened Pandora’s box to discover first hand the darkness that baby loss entails, the events of the Autumn of 2013 shifted our life forever.
We may not have brought our second daughter home with us, but her presence is never far from our thoughts. Even time, happy endings and rainbow babies cannot erase history.
Our experience of loss at 23 weeks opened our eyes to the fragility of life; of how we had taken full term pregnancy for granted despite having learnt the frustrating truth that fertility isn’t a given. It robbed us of the joy of carrying a child forever and despite going on to have a healthy baby, the cruel fear of knowing nothing is guaranteed weighed heavy on our minds – and still does, in a way.
I sometimes think that experiencing that loss, grieving in perhaps too public a way, made others feel uncomfortable. My ability to talk openly about how I felt, how bad it hurt, ostracised me from some friends and colleagues; perhaps forming an irreparable fault line between us. Maybe I said too much? But I just couldn’t unsee my sleeping daughter in that basket my arms; the soft kiss I placed on her stone cold forehead, or the tiny knitted dress, with a pearl heart bead that she wore as we said goodbye. I wasn’t ready to rush ahead past the grieving stage, and even after two months off work, I was still hurting so badly I struggled to keep it together each day. I just couldn’t understand how some people could say hi to us and make small talk about the weather without acknowledging what we were going through. But that, sadly was all too often the reality.
To others, we’d lost a pregnancy. They saw our tears, a growing bump one day that was gone the next, but it was hard for them to imagine her as a real person, in the way that we did. In fact, sometimes I wish we had held her a few moments longer, memorised her face a little harder and cherished those moments whilst we had them right there in the palm of our hand. Because now, just five years later her image in my memory is fading and that in itself is hard to accept.
She undoubtedly altered us forever, and for that I cannot apologise; She made me love harder, protect more fiercely, and live with a different appreciation for what matters to me. I’m a different person now to how I was before, and strangely, I would never change that; that was her gift to us. Her coming and leaving us took us to the darkest of places, and yet she will always be to us the brightest light in the sky.
Amidst those bleakest of times, we took every positive we could, and they stayed with us. The incredible care of the NHS staff who dealt with us tenderly and with such compassion. The team at the specialist centres who whilst dealing us the most shattering of news, helped us to begin to pick up the pieces. The family and friends who were there, without hesitation or fear of getting it wrong, who guided us as we navigated through the fog. The messages in the middle of the night, the thoughtful words and gifts that meant so much. One work colleague gave me a small Christmas tree decoration and a planner, so I could jot down dates, thoughts and focus on small positives for the future. It was such a thoughtful gift, I’ll never forget it. But most of all, what meant the most was the acknowledgement that it was okay to talk about it. To talk about what had happened. To talk about her.
I have never experienced early miscarriage, or full term still birth. I cannot imagine coping with the loss of a newborn baby, or even begin to understand how you would get through it. My heart breaks for every single parent who has had to face saying goodbye to a very much loved and wanted child; that pain is real and all encompassing. What I do know is my own journey through loss, and the importance of acknowledging what happened. To offer someone who is hurting a safe space to open up is the kindest gesture you can give; to acknowledge their hurt and be respectful of it.
The women (and men) who have suffered loss deserve access to the right bereavement care – regardless of their location or gestation, and sadly this is something which is not always available. This is why Baby Loss Awareness campaigns are so critical – not just to raise awareness, but also to ensure that excellent care is available to all parents when they need it most. We were lucky in that we were treated with dignity and care by a Midwife I will never forget; who stayed with us way beyond her shift so she could care for us and our baby in the way we needed. Who held my hand through it all and even hand chose that dress (from a selection of donated tiny hand knitted clothes, something that really touched me and continues to do so all these years later. Who knitted that dress? And how can we ever thank such kindness). We were provided photographs, hand and foot prints and a Sands memory box, filled with trinkets for us, and for her, which made us feel like her life mattered. We had access to some counselling, perhaps not of the right quality, but some all the same, for which I am grateful.
Sometimes the memories of that time seem so far away; almost as though the whole nightmare didn’t really happen to us. Life has moved on and we are at a place we once would never have imagined possible. But then in the hearing of a song on the radio, the call of a name in the playground, the sight of a remembrance Poppy on a lapel, it’s right there again. The memories, the sadness, the pain. Even now it’s hard to gauge when it’s right to bring her in to conversation, if it’s right at all. But I know in my heart that she is a key part of our make up. She is responsible for the person I am today, writing this. And so, she deserves the right to not become something shameful or abhorrent for people to wish I didn’t keep mentioning; five years on, or twenty five years on. I’ll always carry a sadness about what happened, one that I cannot and will not pretend to ignore.
Losing a baby is a trauma. We wouldn’t wish someone didn’t mention other types of trauma; their illness, or an accident that happened, or even a bereavement, so it’s time as a society we broke the silence on baby loss. It’s time to put our arms around the thousands of women, and men, who experience baby loss every year and give them the support and courage to honour the precious babies they kissed goodnight, or never got the chance to.
We would like to invite you to join other families across the world by lighting a candle at 7pm local time and leaving it burning for at least one hour to remember all babies that have died too soon. This can be done individually or in a group, at home or in a communal space.
To join the virtual Wave of Light, take a photo of your candle and post it to Facebook, Twitter or Instagram using #WaveOfLight at 7pm local time.
Wherever you do this, you will be joining a global ‘Wave of Light’ in memory of all the babies who lit up our lives for such a short time.