Sunflowers – part 2

Yesterday was the anniversary of Nico’s death. A hard day. No matter what I did or didn’t do it was never going to be an easy day. But I wanted to do something which reached out to people, especially those who had also lost their sons, daughters, husbands, wives, mothers, fathers, sister and brothers, friends and loved ones to bad care, poor care and straightforward neglect. So the idea of #sunflowers22 was born.

A day in which everyone who wanted to, could change their profile pictures on Twitter and Facebook to a photo of a sunflower (the hashtag sunflowers22 because it was taking place on 22 August). I changed the Justice for Nico Twitter page profile photo at midnight on 21 August and went to bed.

I was woken out a deep sleep by Nico calling to me and I shot out of bed and rushed next door to his bedroom as I have so many, many times. Just for a moment I thought he was lying in his bed, but it was only the grey morning light playing tricks on my half asleep brain. I went back into our room and looked at the clock. It was 5.47am. I looked out of the window at that cold grey early morning light and remembered the phone call we had received that morning. We don’t keep a phone in our bedroom now.

By 8.30am my Twitter feed was starting to fill up with sunflowers as one by one, the Twitter world came to life and began to turn yellow. Some people were inventive and went for funny sunflowers, cool sunflowers and sunflowers photographed in unusual places, some went for downright amazingly beautiful sunflowers and some put up photos of sunflowers which I’d be distributing around liberally on Twitter in the days before. It didn’t matter- all the sunflowers were wonderful.

By the evening all my Twitter followers except 3 had changed to sunflowers. Over on Facebook my daughter Madeleine had taken charge of #sunflowers22 and she was getting the word out fast and Facebook started to fill up with sunflowers too.


By 7.30pm we were trending on Twitter (not in the top 10, so don’t get too excited) and I had the calm, exhausted feeling that success brings. Though I now know that spending the whole day on Twitter leaves you very tired and I don’t recommend it!

This morning I changed my profile picture back to Nico’s picture. I was impossible to avoid the sense of anti-climax. The day itself was over, Justice for Nico had 100 new followers and two new blogs had been written about the day (not by me and I’ll share both of them with you shortly). However I was very aware that while #sunflowers22 was taking place, there were horrible, negative developments taking place in the lives of other families. Poor Sara Ryan had to deal with the effects of a terrible letter written to her by the CEO of Southern Health, Lenora finally cracked under the strain of having her son placed in an unsuitable unit miles away and stated a petition to bring him home. Claire Dyer’s mother published a heart tearing account of Claire ringing her from the unit and begging to come home.

There was no avoiding it. The world was still turning while Twitter turned yellow and the battles had not gone away while we were thinking about sunflowers.



On the anniversary of his death, Friday 22 August, please join me in remembering Nico and all the happiness, love and laughter he brought into the world.

We laid him in a box with blue skies and sunflowers and filled our house and the church with huge bouquets of sunflowers. Friends of ours and of Nico’s brought us more sunflowers, real, painted and ceramic and we keep them in pride of place.

On 22 August I will be changing my profile picture on Twitter to a sunflower for one day. Will you change your Twitter profile to a sunflower too in memory ofimagesca875vh9.jpg Nico and all the precious and loved young people who have died needless deaths, deaths by indifference, by neglect, by poor practice and by ignorance? We remember you all and always.  On this day I want to fill the world with sunflowers– for Nico, for everyone, for all of us.

Time and other realities

I really can’t speak for anyone else. Grief, I’ve discovered, is a very personal thing and by that I mean that everyone grieves differently and there are as many different versions of grief as there are people who are grieving and people they lost.

There’s no right way to grieve; no correct or incorrect way to be or to feel. There’s only your own way and I’m going to write about MY way. It may turn out to be the same as yours – or similar. It may be completely different. You may think I’m misguided or a saint. It really just doesn’t matter because there is no right or wrong way to grieve. 

On 22 August it will be the anniversary of Nico’s death. That’s a terribly hard sentence to write and without being able to stop them, tears are coming into my eyes and falling down my face. It makes me wonder how many anniversaries will pass before I am able to type that sentence without the tears falling. Maybe never.

Start again……..

I can write about Nico’s life so easily. The words just flow and bring me joy and comfort. Remembering why we loved you so much, my darling boy, remembering all the happy (and not so happy) times we had together. Sharing stories of the people who were part of the journey, the highs and the lows, the laughs and the struggles. But when I come to write about my life without you, my darling boy, my own Mr Ginge, my Nicodemus, my fat boy, my baby……..that is so much harder. Now I must stop again as the tears are once again flowing and this time I’ve not only failed to wipe them away, but I’ve managed to get something in my eye.

I want to write about the passing of time after someone dies and what it means – or rather what it means to me and to do this I’m going to use the framework of two well-worn platitudes which I’ve come to loath, perhaps you do too.

“Time is a great healer”. No it’s not.

What the passage of time gives you is the ability to grow a second skin and get really good at knowing when you need to put it on. At work, in public, at social events and sadly, even with some friends and family members – you put on your new extra skin.

It holds in the ocean of tears, the sharp pricking behind your eyes and the lump in your throat. It holds in the wobble in your voice and the terrible staring eyes with that ghastly haunted look that they had in the moment that you were told the news. It holds in the ever repeating loop of events and the awful screams you try not to hear at night. It holds in that alternative but very real version of yourself which is always there, but you cannot show in public if you’re going to be able to function, work, walk and talk.

“Life goes on”. Well, yes and no.

For a long time 22 August was the day that time stopped and every day since was 22 August – or no date at all. The weather may be different, there may even be a Christmas tree in the corner, but it was always 22 August.

This is so strange to say and even stranger to live and it’s taken me a while to work this one out and at the moment the best I can say about it is this. The world as we knew it, our family life, our whole existence, the people we were and the way we related to each other and to the world around us – our “normal”, ceased abruptly on 22 August. The way we were on 21 August, the following morning ceased to exist. Not just Nico, but us too. Literally our lives, our normal, our reality – stopped.

Eventually we went back to work, we cleaned the house, we bought food and cooked it, we tidied the garden, and we attended social events and watched the tele. But somehow, instead of this being our “new normal” it only felt as if we existed in a strange parallel world – a new and very wrong reality.

It was like living in a science fiction film where everything is almost normal, but there’s one thing missing and that throws everything else askew. So we looked like us, sounded like us……but somehow we were never, ever us. We lived from day to day in this weird parallel world and every single day we expected to find Nico in the sitting room watching a film, or listening to music, or in the kitchen “helping” with the cooking or (and this was the strongest) at the front door waiting to be let in.

I began to believe that the walls of this new alternative reality were something that I could push through to find Nico waiting for me on the other side – if only I tried hard enough or knew the special code. This became an obsession. Left alone in the house for hours and days on end (while Ian was at work) I tried to be so quiet that no movement or sound I made would disturb this new parallel world in the hope it would give up its grip and let our real world come back. I held my breath or tried to breathe in tiny little breaths and I waited, day after day, for my Nico to come home.

He didn’t come. Instead I read and wrote long, complicated emails and letters. New people who talked in acronyms and legal jargon crowded into my new world. We had meetings with legal advisors and little by little this became our new normal. Over time, as the months went by this strange life became our new reality.

Caught between a past I cannot recapture and a present which is harsh, strange and bewildering, I squash down the sides of my mind, afraid to recall his smell, the way it felt to touch his face, to stroke his arm, the sound of his laugh, the sound of his voice, that special loving look in his eyes. I know that I could make all this come back to life in my mind, but I don’t because I wouldn’t be able to bear it.Nico's Photos_0040

But I live in terror of the day that I can no longer remember every single little thing about him and so I keep his room exactly the same, a room waiting for a happy boy who will never return to it and I curse myself for being such a fool.