I remember feeling anxious about dying from a young age. I use to perform 'rituals' in my mind, every evening before I would feel safe enough to fall asleep. This could take anything up to half an hour to complete but back then, it was so important for me to do it.
I got older and whilst those obsessive rituals stopped, I would still feel so anxious about death. I realised that this 'death anxiety' was actually kind of normal, as other people would tell me that they felt this anxiety too. I felt some relief in knowing that it wasn't just me and so I pushed 'death' to the back of my mind.
Pushing death to the back of my mind was the problem though because then, when confronted with Holly dying, I didn't know how to deal with it. My paranoia worsened and suddenly everything and anything could lead to myself or other people being taken away too.
I get that no one wants to talk about death. I get that. But when you enter the education system and go throughout many years of learning without really learning about life skills and how to cope with the inevitable, well, I think something is fundamentally wrong there. That is why it is so important for me, for my earth babies to grow up knowing all about Holly. No one can escape the fear of death but they will grow up understanding it, in a held and safe space because how can you deal with death as an adult when no one wants to talk about it as a child?
When you are touched so closely by the death of a loved one, you go on to see the world through a different lens. The trauma of navigating death in the darkness leaves you paranoid with heightened senses. Minor health issues are now terminal illnesses. A poorly baby is now a poorly baby who might also be snatched away from you by death. A bereaved parent sees every illness and every hazard as death, trying its hardest to stretch his fingers and grasp your baby into his own.
I write this post just a week after my son ended up in hospital. He was poorly and I followed my instinct to get a second opinion. On the outside, maybe I looked paranoid, a helicopter parent or the worrier. Before death touched me, I too remember watching my eldest daughter get ill and whilst I was concerned, I knew she would always get better. Why? Because death happened to other people, not me.
Only now death has happened to me and I am not sure that you can ever truly get back from that.
So whilst I reflect back on a horrible week full of gut wrenching anxiety, I ask you 'the outsider', to be patient and try to understand. That thing called 'death' is real for me and sometimes it can be a little bit too much to bare.
I have come to realise that the taboo within babies dying is much bigger than I ever anticipated. It isn't just talking or sharing pictures of our children and it isn't just opening up about terminations. The taboo also lies within how we grow up as a society. The taboo is keeping things 'cuddly, behind closed doors and out of sight, out of mind.' There is still so much to be done.
That thing called 'death'. I talk about it.
Because it matters.
On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.