14 years ago I joined a club. It’s a very exclusive club, but one with a surprising amount of members. Sometimes it feels like a secret club, although none of the members want it that way, but society works hard at keeping us underground. I should explain that no one wants to be in this club. None of us ever dreamt we would join. None of us want to be here. None of us want anyone else in the club. But there is no going back once you have taken your membership. Joining this club represents the darkest moments of your life. This club has the only other people on earth who have even a fraction of an understanding of how fundamentally your life has just changed.
When my son Dexter was born, it was immediately clear something was wrong. Not because of anything overly dramatic, but a feeling I had, an instinct you could say, that all was not quite right. The next 24 hours would be the worst, to that point, of any 24 hours I had ever endured, as we were told that our beautiful son had a genetic condition (Zellweger Syndrome), and he would not survive for longer than a few months.
4 weeks and 3 days later, he died, in our arms, at Derian House Children’s Hospice. In a twist of cruel irony, he died on International Baby Loss Awareness Day, October 15. Membership to the club commenced.
There is nothing quite as lonely as losing a child. All of the light disappeared from my world, and I thought I would never know joy again. In some ways, the darkness remains even now, like an Instagram filter that sits over the top of every moment of my life. I can be laughing and enjoying a moment with someone and then BOOM, suddenly I remember that I broke that day, and the guilt floods back that I have somehow learnt to enjoy life again.
That guilt took a long time to come to terms with, and without the other club members to discuss it with, Im not sure I would have learnt to reconcile happiness with such deep, deep sorrow.
Society would have you believe that we don’t exist, or that we should at least remain hidden precisely because society knows that the pain of child loss is indescribable. The mere thought of it evokes terror in parents. As it should. There are no words. There is only the rawest of emotion. A desperate feeling that life will never be the same again, because put simply, it won’t.
Light can find its way through, with help. Which is why our club is so important. It plays a vital role in helping us understand that you can have joy again. It also helps us vent at the frustration many of us feel at being silenced about our children.
We know you mean well. We know you are usually loved ones who want the old version of us to return. We know that sometimes you think its time we were “over it.” And we know that none of this is because you don’t care. Its terribly difficult to watch someone you care about be so viscerally sad. But when you won’t say their name, when you flinch when we do, when you never acknowledge their birthday or anniversary, it drives us again to that feeling of loneliness when it all began.
Without my club, without the friendships I have formed with other bereaved parents, Im not sure I would ever have found the strength to move forward, with Dexter beside me, in to a life and a career that I am so wonderfully grateful for. But not a day goes by that I don’t wish I didn’t know these people, for their sake, and for mine.
A SONG FOR DEXTER
Finding pragmatic ways to deal with my grief, and using my platform to try to break the stigma around bereavement has led me down a path that I could never have imagined for myself. I had always wanted to write a song for Dexter, and last year, I met another songwriter, we forged a friendship and a partnership, and I finally wrote that song. (The Day is available to buy here via Amazon or here via Apple It is also available on streaming platforms, although I would encourage you to purchase as the profits go to Derian House Children’s Hospice and Together for Short Lives).
THE KEEPSAKE CIRCLE
After this process, I realised that it helped me immensely, and it also opened up dialogue with people about bereavement. In partnership with Derian House, my songwriting partner and I have spent this last year meeting with 10 bereaved families, and we have written 10 original songs in musical tribute to their children who are no longer with us. The project, The Keepsake Circle, has been so rewarding and getting to know these children and hear these families memories has been an incredible privilege. The album will be available for purchase from November 12.
And to my fellow club members as we enter in to Baby Loss Awareness Week for 2021, I am with you as we remember. And I thank you for helping me feel less alone.
If you would like to connect with Kiki then you can do so on instagram here
You can find out more about The Keepsake Circle on instagram here
If you enjoyed reading this inspirational story then please check back this week as others share their stories too. Find out more information here.
The amazing Sue France shared hers yesterday here’s the link.
You can read Violet and Arthur’s story here.