Better Days

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.

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 that there were triggers to the bad days. Sometimes I avoid the triggers because I know what will come after and I can’t bear it. Sometimes I almost seem to need the triggers, in spite of the fact that I know I will fall into the black well of misery. Some triggers can’t be avoided and these are the ones that 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.

Recently I’ve tried to offer support to another mother who is at a much earlier stage in the loss of her son. Some of the things she’s mentioned have brought back some very powerful memories. She talks about “looping”. I used to loop all the time, almost every day until it exhausted me. This type of grief is exhausting. Crying that leaves your face swollen, your throat sore and your body aching.

I don’t cry like this now. I just trickle in silence. I don’t care if people know that I still cry because not that many people I know care at all. Most of the people who really care are people who follow my blog or my Tweets, the others I can count easily on one hand.

Caring has 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 They think my grief is no longer current. I dread anyone asking me what year Nico died as I know they are thinking “oh, not that recently then”…………

I feel grey. That’s really the best way I can put it. I feel as if I’m covered in ash and without colour. I really don’t want to be “the sad lady”. I don’t want to spend any more days than I absolutely have to being the sad person. The grey ash person. This is my life going by and it’s bad enough to live it without Nico, without also living it feeling like this.

I suspect that I’m unable to follow the natural course of grieving because I’m still fighting for justice. This means I’m stuck in a kind of limbo and that the idea of “moving on” just isn’t possible. Actually I wouldn’t want to. Why would I want to move on and get over the death of my beautiful boy? But I don’t want to be stuck permanently in this awful place either.  I just don’t know at this point if there will ever be a place where justice is done, what it would look and feel like and how I would then be afterwards. I’m not stupid and I know that when the fight for justice ends, in many ways that will be another severing of ties with my boy – another bereavement. And so I think that this is the time to start trying to put my head together about what that could mean and start putting things into place going forwards.

The Independent Investigation probably won’t even begin until September (apparently people go on holiday at this time of year) and it’s very likely that it will be the end of the year before it’s finished – a year after the end of the inquest. It could be February by the time we have a full decision and depending on what that decision is, there could be another justice train to ride on after that.

I’m going to need help to last the course. I’ve decided to start getting that help now.

At the first “Making Families Count” conference I attended, Dr Androulla Johnstone, the CEO of HASCAS (Health and Social Care Advisory Service), spoke about the importance of the support which families receive following the sudden death of their loved ones in the care of an NHS trust. One of the things she said has stayed with me.

She talked about something called “Secondary Trauma”, which was a phrase I’d never heard before. This is the name given to the ghastly and profound emotional experience families go through in the grueling fight for justice following the death of their loved one. She explained how crucially important it was that families received specialist counselling after a bereavement of this type because of the secondary trauma. A normal counsellor, even a grief counsellor, almost certainly won’t have come across this before let alone be trained in it, but if the families have access to a specialist counsellor with secondary trauma counselling experience it can make a huge different to their grief journey and to their healing.

The only counselling we had access to was the part-time student counsellor who works at the school where my MN is on the maintenance team. Our experience with him I feel deserves a blog to itself, so I won’t comment further here, but that was our only option at the time, so we took it. If a specialist counsellor with knowledge and understanding of secondary trauma had been available to us we would have grabbed it with both hands and who knows what difference it might have made? There may be others, but the only organization I know of which offers this service to families like ours at the moment is Respond.

Respond exist specifically to support disabled people and the families of disabled people who have been through trauma – and that includes a specialist counselling service. They are based on London and owing to lack of funding (what a surprise, not) at the moment they’re unable to offer one to one counselling in person to other parts of the UK, but they can offer initial telephone counselling to anyone.

I’ve made a very big decision and I have made an appointment to go and see them, starting next week with phone counselling and then hopefully some appointments in person. Yes, I’ll have to travel to London to see them, but luckily for me that’s not a problem. I can’t help but think about other mums I know though, and what they’re going through right now, how badly they need the support of Respond and how London is just that bit too far for them to get to.

So next week I’ll begin. I might be wearing grey but it’s a start.

Nico's Photos_0009

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Another Meeting

Earlier this week I posted the revised version of the poem I wrote about the interminable “meetings about meetings” –  meetings with the local authority which are sadly a very normal part of life as a parent with a disabled child.

This second poem I always intended as a companion piece, a type of “Meetings part 2”.  The first poem is about life with your disabled child, this second poem is very much about life after the loss of your child.

There have been so many meetings like this, much more than I can count, as we ride this long and weary train to justice.  This poem isn’t about a particular meeting, a particular person or place – it’s really more a summing up of my feelings about those meetings and in particular those meetings when we had to travel far to speak to awfully clever strangers who might, if we were lucky, help us in our fight for justice.

Another Meeting

Professional and courteous, you listen open minded

And you carefully take notes as our sad sorry tale is told

Anticipating tears

Are the tissues on the table

Which you gently push towards me

At a catch inside my throat

You thoughtfully remind me that its facts and not opinions

That I need to help you out with when you’re making all the notes

And I struggle on to speak

Through rage and pain and sorrow

To keep our story to the point

Remembering my son

We’ve had a long cold journey with another waiting for us

So please forget the funding (lack of), please forget the time

Forget the expectations

“Help to manage expectations”

And give us hope that you can make

A difference for the better

Your voice is clever, crisp and clear and helps us to remember

That without you we are nothing and our voice will not be heard

We understand the rules

And the game of justice varies

But we have to get you on our side

Or we won’t have a hope

The truth is that I want to run out screaming in the street

Accosting chilly strangers passing, begging at their feet

I want the world to stop from turning

All smiles turned to sad

And a national day of mourning

For the loss of my bright lad