A long reply to a simple question

Recently I was contacted by a mother who asked me a question.  I’ve been thinking about the answer for some time and I wanted to be truthful.  As I approach the anniversary of my son’s death, this has been on my mind more than ever.   The mother had asked me one simple question “Does it get better?”

In a few days it will tip into it being another year since Nico died and with that in mind, I’d like to answer her question by looking back over the last few years.

At the beginning there were no good days.  There were not even good hours or minutes.  Later there were sometimes good minutes, or minutes that you didn’t spend crying.  Crying seemed to be my new hobby.

Later there were good hours and bad hours, all of which seemed to come quite randomly. There were still more bad hours than good ones, but there were good ones – and then came the guilt.  I remember the first time we laughed together, really laughed.  Laughed till our sides ached.  And then we sat in guilty silence, ashamed of our noise, our laughter.  That was about 18 months after my son died.

It was a long, long time before good could be measured in the length of a day. Then the measuring changed and we had good days and bad days.

I found there were triggers to the bad days.  Sometimes I avoided the triggers because I knew what would come after and I couldn’t bear it.  Sometimes I almost seemed to need the triggers, in spite of the fact that I knew I would fall into that black well of misery.  Some triggers can’t be avoided and these are the ones that can cause a line of bad days and bad nights.  These are the ones where you stop answering the phone, stop leaving the house, stop talking on-line and sit very still and take tiny little breaths and try to trick yourself into getting through that hour, then another.  Then that day is over.

I’ve spoken to other people going through the loss of a much-loved family member. One mum talked about “looping” and this brought back some very powerful memories.  I used to loop all the time, almost every day until it exhausted me.  If you aren’t familiar with this term I should briefly explain; it’s when something triggers the memory of a situation which can be a moment, a look, a sound, or even the sound of a word, which then flashes into your head so loudly and vividly it’s almost like a gong going off in your head.  Although you don’t want to look at it or listen to it, it insists on your attention and will constantly replay in your head over and over to the point where it becomes overwhelming.  This type of grief is exhausting.  It leads to crying that leaves your face swollen, your throat sore and your body aching.

After three years I found I no longer cried like that.  I just trickled in silence and I didn’t care if people knew I still cried or even if they saw me because by then less people seemed to care.  For the most part other people in my life had moved on and only gave me, my son or how I might be feeling, an occasional thought.  Most people stopped even mentioning Nico, as if in some way that was kind or helpful.

Caring seems to have a sell by date and it never ceases to amaze me that people would think I’d be “getting better” by now.  Why would I want to get better? And what does that mean anyway?  Do they mean that now I no longer miss my son?  Or perhaps it means I no longer think about him except in a “fond memories” type of way.  They think my grief is no longer current.  Now as we approach another anniversary, I dread anyone asking me what year Nico died as I know they are thinking “oh, not that recently then”.  How would I get over the death of my beautiful boy?  But you don’t want to be stuck permanently in this an awful place either.  It’s extremely conflicting, frustrating and draining.

By year four I would describe myself as feeling grey.  That’s really the best way I can put it.  I felt as if I was covered in ash and without colour.  I really didn’t want to be “the sad lady”.  I don’t want to spend any more days than I absolutely had to being the sad person.  The grey ash person.  I was worn out and washed out and all too aware that this was my life going by and it’s bad enough to live it without Nico, without also living it feeling like this.

By year five I realised the reason I was unable to follow the natural course of grieving was because I was still in the middle of the on-going fight to bring those responsible for my son’s death to account.  I was stuck in a kind of limbo and the idea of “moving on” just wasn’t possible.  I could see this was a problem and definitely not good for my mental health but as it went on and on and on it began to take on a permanent quality, defining the new version of me.  The long years of struggle for “justice” becomes bound up with the grieving.  The long years of struggle starts to overshadow all aspects of your life.  As the fight for justice started defining me it sometimes seemed as if the normal, happy, loving life I had with Nico before all this, had become less real than the situation I now found myself in.

By year six, when the independent investigation into my son’s death finally published, I saw that there may never be a point where justice is done and I would never know what a sense of completion, vindication and closure felt like.  That for me there would be no well-earned rest in an “afterwards”.  I had fought a long battle with people in power who had a vested interest in ensuring that anything I achieved would be as limited as possible.  Real change didn’t serve them and a genuine response to what had happened to my son would mean them embracing the need for change.

In year seven I began to feel that when the long fight ended it would mean a further severing of the ties that still bound me to my son – and that this would almost feel like another bereavement.  Without completion, vindication and closure I found myself looking into the void, trying to find a way to start trying to put my head together and go forward to start a different chapter of my life.  Part of this journey was my decision to start writing this blog so that I could share what I’d learned along the way in the hope that it would help me and might also help others. 

Which brings me to today and I would say that my grief and my journey is still a work in progress.  In some ways our story will never be over, not just because the independent investigation is now being investigated for malpractice (you really couldn’t make this stuff up), but because the truth at the heart of it all remains the same and always will.

I have a son.  His name is Nico and I love him very much.  He had disabilities but he also had dreams and hopes and ambitions.  He was gorgeous and he lit up every room he entered and was loved by all who knew him.  He didn’t need to die and those responsible for his death ran from what they’d done and lied in every way they could.  Nico will always be my son and although they may have taken him from my arms, they can never, never take him from my heart.

This is a long reply to a simple question and the short answer to “does it get better” would be; yes, because it changes and it becomes different. Instead of drowning in sorrow you grow a new skin that keeps you afloat and contains the ocean of pain. Some days it’s better but most days it’s just different and you learn to be OK with that.  Of course, if you ask me again next year my reply may not be the same.

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