I first met Nicole at my brother and sister-in-law’s wedding in April 2016. We were both thirty-something weeks pregnant; me with Teddy, and her with their fourth son….also Edward! We sat together, talked, laughed and joked. Both being heavily pregnant I obviously asked her if it was her first baby, and how many other children she had. Oh, how I look back now and cringe a little at my own blissful ignorance. Nicole was one of the first people who reached out to me after Teddy died; one of the first people I spoke to who truly understood the emotions I was going through. I will be eternally grateful to her for the love, support and helpful words that she offered to me during those first weeks of loss. Nicole has now embarked on an incredible campaign that seeks to help all parents in loss. Something that has been born out of her passion and belief that we all need to start this conversation, and we must not shy away from the subject. I am so proud to have her share her story with you all, so I’ll let her take it from here. Elle x
This time five years ago we were negotiating life as new parents to two beautiful children. Alistair was exploring life as a new big brother, and Ben was discovering what this new world had to offer him. We were in the midst of organising a two-hundred-and-sixty-mile relocation to Scotland, so that we could embrace finally being a family of four. After having had two miscarriages, our journey into parenthood had not been the smooth journey we had expected; and finally, we had the ‘complete’ family unit we had been longing for.
Ben wasn’t an “easy” baby, but he was super cute! He was cheeky, and absolutely adored his big brother; but most of all, he was a Daddy’s boy. He had reflux which meant we could never put him down; at the time it was incredibly frustrating, but now I am eternally grateful for that. All of the cuddles in the world will never be enough, but at least he got the most he could have wished for whilst he was here with us.
In November 2012 Ben was involved in a tragic accident. An accident which meant he was brain dead and we had to make a decision that no parent should ever have to make. It is a choice filled with “What if’s”, and a moment in our lives that is etched onto our memories forever. With doctor’s guidance, we came to the conclusion that treatment was no longer the kindest thing for Ben to endure. He grew his angel wings whilst lying in my arms, surrounded by the love of his Mummy and Daddy. In that moment, it felt as though our world had been completely crushed.
When we left the hospital without our beautiful boy we were thrown into instant chaos. Our world began spinning on an alternate axis; one which only those who have been through it can fully comprehend. One with no name, no “box” to fit in, no “label” that felt appropriate, because the loss of a child and the pain that engulfs you is simply indescribable.
We spent the next three years trying to adjust to this new way of life. Trying to negotiate parenting our son on earth and our son in heaven. We had another miscarriage after Ben died; but then went on to be blessed with our rainbow babies Toby and Edward. However precious my boys are, these beautiful gifts could never replace the hole that Ben has left. The further time moved us apart from the memory of Ben, the more expectations were placed on us to be “better”, to have “moved on”, to be “fixed”. Time made no difference, contrary to popular belief. All time did was make us better at lying, and at hiding how we really felt; we began to expect people to not talk about Ben.
The world had seemingly moved on, but we were stuck; still spinning and still trying to find out exactly where we belonged. It was then that Google became my new best friend. A friend I came to hate; yet another friend who had no answers that would start to help heal our broken hearts. I persevered though, and slowly but surely, I began to piece bits together. There were things out there to help, but they seemed too difficult to find. In my years of searching I found a word, a label, a box that would fit anyone who had lost their world. It was a simple word, Vilomah. It is Sanskrit for “Against the natural order”. I felt as though I finally had a place. It didn’t matter how Ben had died, it didn’t matter how old he was, and it didn’t matter how long ago he died. I am, and always will be a Vilomah; because I am, and always will be Ben’s mother.
The world didn’t know that though, did it? So, when I met new people, or went to maternity appointments during my subsequent pregnancies, or entered new situations, the usual small talk would ensue. “How many children do you have?”, “Is this your first pregnancy?”, “Are you planning on having any more children?”.
Telling someone that your child has died is the hardest thing in the world. Being asked again and again; “How many children do you have?”, and having to choose again, and again whether to lie or not. Do I deny that my beautiful boy ever existed and lie to make them feel comfortable? Do I have the conversation that will take their breath away, or do I allow them to carry on but die a little inside, again? That was the choice I was always faced with. People are uncomfortable with the conversation, but once it’s over they get to walk away. I am the one who has to live with a hole in my heart, the family photo that will never be complete, the life that no one wants to acknowledge. A life sentence, without my son in it.
It was this feeling, this awkwardness that spurred me to come up with the idea of a way of showing people I was a Vilomah. A way of showing that I was going to answer their questions differently, but that it was OK. I want to talk, I want to hear Ben’s name; and I want to help people understand that grief isn’t the only part of my world. A little pin badge; a simple purple heart with a piece missing. A heart still functions with a hole in it, but it has to adapt to continue working effectively. This is the same for Vilomahs. They still function, but they have to adapt to a life without their child physically here in it.
I started the Our Missing Peace campaign because I want to start the conservation; I want to break the silence that surrounds all parents who have lost their child. I want to help people learn how to talk about child loss openly and honestly; to know what to say when somebody is honest about their life. I also wanted to break down the isolation that, we as bereaved parents, find ourselves in all too often. My hope is that Our Missing Peace will help those who have lost a child to find help more quickly if they need it. I also work alongside charities, and signpost bereaved parents to their closest resources, with the idea that if someone can find the badge that they can then also find any help that they may need.
My vision is that everyone knows what the symbol means; that way it doesn’t matter if you have lost or not, you will always know where to find help. Unfortunately, at the moment, if you lose a child you are given all information and packs to help you when you are still in a haze of grief and shock. If more people know about the campaign, then people will know where to go or how to help friends or family members if they ever need it.
It doesn’t matter how long your child was in your life. Whether you experienced miscarriage; whether your child was stillborn or it was a neonatal death; whether it was an accidental death, or the death of a teenager or an adult. Your child will always be your baby, no matter how old they were. When your child dies, you lose so much more than just their future; you lose your future with them in it. I’m hoping that by bringing this incredible community together, and highlighting the wonderful organisations and support networks that already exist, that people will no longer feel alone. Knowing that others are walking in this new world alongside you is a comfort that all of us need. We are all parents; we are all Vilomahs.
The “Our Missing Peace” campaign is currently seeking new funding through its crowdfunding page to help with the re-design and adaptation of the badges logo in line with Trade Mark negotiations. To make a donation and help Nicole to move this forward please click here.
You can follow Nicole’s campaign on Instagram- @Ben_and_breaking_the_silence