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 They think my grief is no longer current.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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15 thoughts on “Better Days

    • Deb – you were one of the people I was thinking of when I wrote “Most of the people who really care are people who follow my blog or my Tweets”. Every time you write something it really helps. Then not only do I know that someone is actually reading what I write, but I really feel that support. Thank you X

    • You’re most definitely on that “virtual support list” too. I’ll never forget how you praised my writing when I had just started and in fact your feedback was one of the main reasons why I kept on writing!

      • You’re doing such an important thing: you’re bearing witness. It would be so understandable if you just hid your head under the duvet, but writing like this tells the truth to the rest of us, and helps make a better world where the nightmare that you’ve experienced is just a little less likely to be repeated… Love and admiration from me – and Joey.

    • Hi Helen. I understand and appreciate your support because I know how hard it is for you to read this stuff. Remember that my story isn’t your story and that we had 23 wonderful years together as a family, which I will treasure for ever and ever. Rosi X

  1. We are lucky to have our rainbow baby who helps with the number of good moments. Alex is never out of my mind though, and it is bitter sweet enjoying our new baby, but wondering how life would have been.
    The only people who understand this type of grief are the parents who have lost a child, and even then we have all walked a different path. Saying your child’s name keeps them in the present, and I will never apologise for bringing Alex into conversation no matter how long it is since we said goodbye to him.
    So keep saying Nico’s name, and we will too.
    Lots of love xxxxx

    • Lovely to hear from you Joanne and yes you are absolutely right about keeping saying their name. One of the best things I ever did was to bring Nico’s box (and yes I AM being literal there, it’s a lovely handmade box which a 3D painting of a tiger walking on sunflowers on the front, and I’m sure you can guess what it contains) down from his bedroom. It’s together with lots and lots of photos of Nico and pictures he painted. Being with it, passing it a hundred times a day every day, has helped us so much. We feel his presence here in a thousand different ways. However, I do think that although counselling after a child’s death has improved there is still a lot of ground that needs making up when it comes to a sudden death, not through illness but through fault. I’ve spoken to so many people now who hadn’t previously heard of “secondary trauma counselling” and they all say how much they would have benefitted from it. It’s not a balm, it’s not a cure-all, but frankly anything that helps is good, I’m sure you’ll agree. Big hugs to all XXXXXXXXXXXXXXX

  2. it is very sad but for the most part people don’t keep close when tragedy and trauma hit. I think the support Respond may offer you will help enormously. The end of the investigations is another time for a wave to hit and I believe the true grieving begins. Life has been continuing for everyone around and they will expect you to be’ free ‘now ( and your ‘time ‘ to be available in any way that it was previously ) It is a funny sad world because you have 3D and 4D baby scans ( when did that all happen ? ) placed before your eyes for maternal comment when you still crawl through the day of your dead childs birth . I think it is human nature that you are required to get back in the saddle, people do love a bit of normality ! seriously willing you on and take good care of yourself you will need to for goodness knows how long x

    • it has been a great sadness to us how the loss of Nico has fragmented the family. My mum died in 2007 and my father almost a year ago. No-one from my family (with the exception of my brother) came to Nico’s funeral. No one. Lots came from the MN’s side, but apart from my neice and her husband, they all found it very difficult, confusing and I think felt ill at ease. Suddenly they saw all these people who really loved, respected and honoured Nico and a huge outpouring of grief. Occasionally his sister rings, but we’ve heard from no-one else. The lack of support and sympathy has caused much pain to my MN and has fractured their relationship. At this point I can’t look ahead to a time after the Investigation because that’s such an unknown land, but at least I can bring myself to acknowledge that there WILL be such a place and that it will be very hard to be there. Another thing you say that really resonates with me Nic is how people really want “a bit of normality” and they don’t ask me how I am because they don’t want to risk a truthful answer. If you want to end up with a very jaundiced view of people, loosing a child in this way is certainly one way to do it. If you’ll keep reading though – I’ll keep on writing (and you keep commenting) – we’ll get there, somehow!

      • I must thank you for the mention of secondary trauma, in has unlocked a fair few things for our household in recent days. I think I can take it as an explanation of my husband’s health going completely haywire now that we are done with external bodies. You have inspired me to take a step to being more me again. I am a Great-Aunt and a Nans friend and I will learn to appraise all these new babies before they are born ! babies are beautiful. I had had a call from someone who in SW speak had thoughts of not being here but had not acted upon them, support it seems is a thin on the ground as ever for most people so Respond is now a name I will make note of. Really helpful information to share many thanks.

  3. my comment relates to the tweet on screen 7 Aug. On Monday this week someone I ‘key hold’ for told me they had suicidal thoughts ( 8:45 am ) many hours later with their permission, the mental health team informed me all was well ” they had not acted upon their thoughts of….. “. So many people are getting by with wafer thin support in terrible circumstances. I can sympathize with many situations and I am doing bits to help but I think there is a very private hell reserved for anyone bereaved and either fighting for justice for a loved one or having significant other problems. Take the best care of yourself you can, cobble every and anything together that just keeps you moving forward, style doesn’t matter. It is a huge sadness not to have anyone there for you with a hot drink or an offer of a meal and I bet the arrow of’ captain of the ship’, is pointing at your head. Be gentle with yourself, the pain of loss takes some special breathing techniques.xxx

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