A Winters Tale – Why I choose to openly share my sons story and photographs

A few weeks ago I was confronted by a Facebook post that questioned why parents of stillborn babies would share photographs of their deceased children on social platforms.  The status was rather brutal and flippant with little regard for the impact it would have on the several people in their friends list who had suffered such loss.  It takes quite a blow to really upset me, but I was absolutely devastated to read it and quick to respond.  After some public and then private messaging, the post was removed and I was offered a heartfelt apology with the justification that they had never considered it from the parents perspective before.

There have been many times when I have questioned if I am doing the right thing by sharing my story so openly.  It is both healing and liberating, but it also invites opinion and the occasional negative experience. Since losing Winter my social network family has grown dramatically, his story has been featured in Grazia magazine and well known motherhood blogs such as Selfish Mother.  It’s not at all what I had envisioned in those very early days of loss when I messaged my Instagram friend and said ‘I might post a few things that remind me of my baby on my feed over the next few weeks so I hope you like wolves.’.  Never did I imagine that my Instagram would morph from bump pics and hair selfies into a real life journal of infant loss, miscarriage, trying to conceive and, eventually, pregnancy after loss.  Somehow it happened, I began by cautiously sharing quotes and delicate thoughts until I began to delve into the nitty gritty of real life after the death of your child.  Who knew there were hashtags for infant loss and baby death?  I peeked under the garden stone and discovered a whole world teaming with mothers who had lost babies, tucked away in their own little safe world.  And so, my courage grew, like any proud new mother I wanted to share my baby with the world, and on Instagram I found a space where I could do it.

So why do loss mothers choose to share their stories and photographs of their babies?  Well I can only speak for myself, I don’t want to put words in the mouths of others, but I also know that at least some of my feelings are reflected in the loss community.  I certainly don’t share with the intention of shocking others, nor am I a person known for wallowing and seeking out sympathy.  For me, sharing my story of Winters birth and death came as naturally as sharing his life had he lived.  We live in an age of persistant social media and I began sharing merely for the purpose of a continuation of my story, the only difference being I was updating my friends and followers on funeral arrangements rather than what make up I was applying.  For readers it is a real life story to follow, for me it is real life.  I gained huge amounts of support online and I shared for that purpose too, to discover and connect with other people who had lived through similar experiences and could offer guidance and understanding at times when I found myself feeling lost in the confusion of my grief.  I made real, deep, friendships.  We pull each other up when one of us falls down.  Some of those friendships with loss mothers have sadly ended now I find myself bridging two clubs; the ‘dead baby club’ and the ‘expecting mother club’, but that is a whole different blog piece.  Support and friendship is one reason I chose to share our story.

With growing numbers I was inevitably soon greeted with some small amounts of negativity.  It actually takes some courage to bear your feelings so vividly, and criticism of this can understandably send loss bloggers into hiding.  But we are a community to be reckoned with, we are fierce when protecting our right to share our babies.  Aside from a few throw away comments that ‘my son died because I gave him a stupid name’, or that I should just ‘move on and have more babies’, it is the slander against sharing photographs of my son which cut the deepest.  It is here that I find myself defending my right to post an image of my child on my personal (albeit open) profile.  It is a wall that many loss parents face and another reason why we should continue to share stories and images, alongside gentle explanation of why we can, and do, share.  I have to admit that before losing Winter I don’t know how I would feel if faced with a photograph of a dead baby on my Facebook feed.  Would I feel shocked? Offended? Deeply sad? Morbidly curious?  I don’t really know because I never came across it.  I am also understanding of the fact that people don’t want to see endless photos of babies that have died when they are scrolling their feed full of nights out and hair tutorials.  Of course it makes people uncomfortable, children dying does not fit in with our western ideology and interrupts our happiness.  I also don’t ever want to force my photographs on people with the view that ‘I have to live with my baby’s death so you should too’ and ‘if it makes you uncomfortable then imagine my pain’, because whilst that is valid it can also feel confrontational and unnecessary. But there is also a point where I have a right to be able to share my photographs without judgement.  The argument of ‘you wouldn’t post a photograph of your dead parent so why post a photograph of your dead baby’ is so deeply misguided that we have to find the right words to explain.  When a baby is born there is a huge amount of pride and love for that baby.  New mothers show off their babies like trophies, the ultimate prize after nine months of sickness and backache.  Their babies are beautiful and perfect.  The same goes for if your baby is born without life, or dies shortly after.  If the only photographs you have of your child are after they have died, then there is no option to share a happy photo of a live pink newborn.  We are robbed of that chance, along with a lifetime of moments.  And so loss mothers can either share their beautiful perfect babies, or they can hide them away in shame.  The difference is that whilst some view the image as inappropriate or offensive, to the parents it represents love and family, a once in a lifetime opportunity to spend precious time with their child.  It is not a photo of a dead baby, it is a photo of a loved and wanted baby.  We can scroll past it if it hurts us to see, but simoultaneously we can’t shy away from real life and we certainly shouldn’t criticise and pile pain onto bereaved parents who have taken brave steps in sharing their loved babies.

Another reason that I choose to share my story is to spread awareness.  It’s a cliché, and people may wonder why the hell they need to be aware that babies die, but actually spreading awareness isn’t just telling people a sad story and hoping they feel like shit afterwards, but it has real purpose in many ways.  Educating people about why their baby died saves lives, loss mothers share fatal symptoms in pregnancies that can lead to a safe delivery if read about and detected early.  Taking about Winters death has raised over £20,000 towards life saving equipment, people simply read his shared story and donated.  There are ways that we can help families who lose their babies, some with funding or voluntary support, and other times a loss mother has shared a piece about her experience and others can read that and learn how to emotionally help their friend – I wrote a guest blog on Cheltenham Maman about the subject myself.  It occurred to me the other day that I could guide someone on how to support a friend through baby loss, but if someone close to me confided that they had cancer, I would have no idea how to react, the right things to say and do.  I’ve not experienced it, so I would need help myself, I would be searching for blogs and helpful pieces, looking for shared stories.  Talking about Winter and my continued grief 16 months after his death allows friends to recognise the lifelong loss that comes with the death of a baby, an understanding that my grief is not over and done with and although life continues and is here to be lived, my grief is never likely to just magically stop one day.  It was only a generation ago that stillborn babies where whisked away immediatly after birth with no opportunity for parents and families to even see their child or know what happened to their little bodies afterwards, dead babies didn’t exist, they simply weren’t even recognised and subsequently families experienced huge amounts of silent hidden pain. Now there are charities with volunteers who attend stillbirths and neonatal deaths to professionaly photograph the babies with their families, and wedding dresses that are converted into gowns for babies who do not live.  This progress is no doubt a direct result of awerness and story sharing.  Before Winter died, I lived in the baby bubble… I fell pregnant with him instantly and had a textbook perfect pregnancy and delivery, until half an hour when he stopped breathing and my life changed forever.  My expectation of falling pregnant again instantly was dashed and we tried for several months and suffered 2 miscarriages before I fell pregnant with what is now my womb baby that I hope to safely bring home in August.  As I share this rollercoaster it has opened my discussion with friends and Instagram family and I have discovered that many women have lost babies and / or struggled to conceive.  I had no idea. After years of being taught how to not get pregnant, I suddenly realised that I was desperately naïve and severely uneducated in my own fertility, the reality of falling pregnant and the shockingly common heartbreak of miscarriage.

Lastly, I share my story because I want to.  Because Winter was here and existed and important to me, and I like writing about him.  I enjoy knocking out a blog post and building friendships and being part of a community that despite devastating tragedy has taught me nothing but pride, courage and pure love.  Whether we decide to share or not, it is a brave and honourable thing to speak about our babies, in either gentle loving whispers or almighty vibrant shouts.  I feel like we are on a roll here, that infant loss has recently been on popular soap operas and discussed in parliament, that social media has become a little platform for our voices and that this ‘taboo’ is wearing thin.  I hope fellow angel mothers continue to share their stories and photographs, I know I will.

 

 

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