One year ago my life changed completely, utterly, irrevocably.
Changes thrust upon me by the death of my only child, and the threat to my own life.
One year on from Hugo’s death, from my illness I can say I have survived. Or should I say surviving. This is forever.
In the earliest days after Hugo’s death, parents who had lived through similar grief told me the pain would diminish. Not get better as such, just become different. They are right: the pain has diminished because it is no longer that raw, all encompassing agony that made it impossible for me to smile, laugh, or think about anything but Hugo. It has evolved into a different sort of pain. The pain of absence, of loss. A shadow that is always over me, a deep pain in my chest, a constant ache, a fog.
The pain too, of knowing that as a bereaved parent, I will always stand apart in some way from other people. The irony of knowing that in so many ways it is good to be different, that in so many other ways I celebrate diversity, but there is little to celebrate about what make me different to other mothers, the mothers who have never lost a child.
“How many children do you have?” Will never be a simple question to answer. That is despite preparing a standard answer: that answer is likely to change according to the context, the situation, how I think the person may respond, how I am feeling, how much I feel like talking about it all.
While I talk openly on my blog about HELLP syndrome, Hugo, his life, his death, and my grief here I am in control. On my blog I have the time and space to consider what I want to say, how much I say, and how I express it. My readers have the time and space to digest what they have read before commenting, should they feel they want to (there is no obligation). Or, they can walk away (close the browser) and I am none the wiser. In the virtual world no awkward silences, no struggling for the right words to say, no offence caused or taken. Much easier than in real life.
One year on, I am exhausted.
Grief is a heavy burden to bear. Getting up in the morning, putting one foot in front of the other. Finding my way in this new life, finding a new direction, things to feel positive about.
Fighting is exhausting.
Fighting those who were unable to accept that their response to my complaint about things that should not have happened was unacceptable, flippant. Having to meet with them, reliving the trauma, to help them understand.
Fighting to get the support I needed, through the treacle of a system so difficult to navigate, professionals with no idea of what to do with me, who told me ‘God will give me another baby’, and in one letter described me as ‘having trouble getting over the loss of her dead baby, Hugo’. While trying to get a satisfactory resolution to a complaint receiving emails from a senior professional that contained content so obtuse they were farcical.
Fighting the urge to respond premature baby success stories that say all you need is hope and love. Fighting the urge to write, in capital letters: “Nonsense! If that was the case a bouncing baby Hugo would now be in my arms!”
So often upset.
Upset caused by an organisation that should know better. A survey about premature babies’ involvement in clinical trials that asked questions assuming only a positive outcome. The staff failing to appreciate not all babies survive.
Trying to remember the upset is usually unintentional. The upset is caused through lack of thought. Usually.
Exhausted by pointing out, often, what should be blindingly obvious if only people thought a little harder. Had more compassion, empathy. Were a little more human.
Exhausted because of being fuelled by anger and frustration at things that should have been done better, still should be done better. Why don’t people get it?
My life does not look how it should. Anger at the world, at the injustice, at specific people and processes for being utterly inept.
One year on, I have had enough of the life of a bereaved mother. Irrespective of whether Hugo has any little brothers or sisters, there will always be one child missing.
Stop the world, I want to get off. But I know that is not possible. This is my life.
So what do I do?
Channelling, again, the wise words of Yoda:
Fear leads to anger
Anger leads to hate
Hate leads to suffering.
Being in a constant state of anger, frustration and hatred is not good for me. It leads to suffering.
My work making a difference to other families in Hugo’s memory will not stop, cannot stop. But I need to ease up. Try to look at things differently.
At the weekend I watched Cinderella at the cinema. Her mantra is ‘Have courage, be kind’.
Courage I have in plentiful supply. Particularly when it comes to fighting, as I have discovered. Kindness towards others comes fairly easily to me (unless you are one of the people I am fighting – but even then I fight with words, eloquent emotion rather than actual fighting).
Kindness towards myself is something to work on. Self-compassion. Giving myself a break. Knowing when to ease off.
My life is changed completely, utterly, irrevocably. One year on, I am exhausted by it all.
I have courage I need it not only for the fighting, but for the future too. Kindness towards others – because kindness is best, and right – towards myself as well as others.
This is forever.