This time five years ago we were heading to the end. Tonight I’ll light the 2015 candles for the second to last time and from 9.15am tomorrow we will be starting the 6th year of life as a couple who lost a child.
It seems impossible to believe it has been so long. It seems impossible to believe that he is little more than a bundle of photos, internalised sadness, a few memories and a closed brown envelope full of notes I don’t dare look at. And a small brown box I don’t dare look at. And rituals.
I’ve learned so much about how we shape our world since Freddie died. I understand that mourning traditions can have everything to do with the need to hide and weep and be given the right to be somber and lost. I understand how hard to is to force life to afford that space to people who need to retreat and recover. I understand why an industry has grown up round choosing coffins and flowers and headstone.
It feels so ‘necessary’ to do something.
I felt such a need to pour all my love for Freddie into something in the early days. All that love was there and there was nowhere for it to go, nobody to parent. I had to parent his body instead.It was a year before I stopped seeing what his needs might have been in each situation and only Bene’s arrival caused me – by act of will and a physical filling of time and space – to stop accounting for him.
So people set up charities and find a way to make a beautiful memorial, pour their soul into righting whatever wrong happened or building awareness.
It’s not been my way to do that, for whatever reason. Poor parenting of Freddie for better parenting of the living I suppose, if I was being charitable to myself.
17 babies every day – out of roughly 2200 born each day in the UK – die either before, during or in the month after their birth
We all know the expression stillbirth. We all know the expression miscarriage (not included in this statistic). We all know about cot death (also not included in this statistic). 6 of those babies each day are born alive and die within their first month yet the expression neonatal death is rarely used and we are often ignored when people talk about the ‘tragedy of stillbirth’. In the 5 years since Freddie died, I’ve heard “at least you got to know him” and “at least you hardly knew him” as often as I’ve just heard understanding and compassion.
I can never really understand why people think that only knowing him for 11 days makes it better. I don’t think many people would like that 11 day old taken away from them. I never understand why people think getting a whole 11 days of SCBU and fear and exhaustion makes it better. I had to fit a lot of love into those days and I left them behind with guilt and regret and longing for a love affair that was over like a cut short holiday romance that happened to be with the love of my life.
What I’ve never been able to explain before is how much he change – and changed me – in those 11 days. And how that led to the face above, filled with love and despair as he became one of those 17 babies who die each day and we became one of the 17 couples who pack their bags and go home without a baby in the car seat behind them.
This below is a life time of photos, put in order for the first time in 5 years. It’s not absolutely all the photos but it is most of them. Amazingly within this, we didn’t seem to take any at all for nearly 4 days. There are a few the hospital took but they are personal and not of me and Freddie. He was asleep in that intervening time, much like the one of him straight and still and so unlike he was before they drugged him. They show a sick boy who was off a ventilator within 12 hours, who knew me on his second day and could move his arms and legs, who went still but had normal brainwave patterns, who slept and then woke up and just as things seemed to be improving suddenly went back to needing oxygen again – and then died.
It still just doesn’t make sense.
And so we ended up with the one photo I never really show, together in a bed with no wires, but no heartbeat either.