Category: Nico

Crazy little thing called Grief 0

Crazy little thing called Grief

One thing is certain in life.  EVERYBODY is going to experience grief at some point in their lives.  No-one escapes this, absolutely no-one.  If you live in the world and have a family or friends, grief is going to get you one day, if it hasn’t already.  You can deny that and you can put your fingers in your ears till the cows come home, but my friend, it is going to be your turn some-day so you might as well sort out the way you think about grief now.   While we’re on the subject, this is a good time to think about how you can support someone who is grieving. My dictionary defines grief as “intense sorrow, especially caused by someone’s...

Time and other realities 0

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 the 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 so I feel I’m only qualified to write about my own experience.  It may turn out to be similar to yours.  It may be completely different.  But all of that doesn’t really matter because there is no right or wrong way to grieve. It’s almost unbelievable to me that we just had another anniversary of Nico’s...

A long reply to a simple question 0

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...

So what’s with all the sunflowers? 0

So what’s with all the sunflowers?

We laid him in a box decorated with blue skies and sunflowers in a church filled with huge stands of sunflowers.  After that day, friends of ours, and of Nico’s, gave us sunflower gifts to remember him by.  They still do.  Sunflowers have become a kind of shorthand reference not just for remembering my son Nico, but also for the lives of so many others.  Lives which blazed out, filling the world with colour, hope and love.  Lives that were then cut short, when they didn’t need to be.  Lives which are not forgotten. Sunflowers were never my favourite flower.  I can remember enjoying the sight of huge fields of sunflowers in the warm evening sun in Spain but I was not...

The Meeting – a poem 0

The Meeting – a poem

I’m so not a poet. Writing a poem for me is one of those occasional, when the feeling takes me, kind of things.  I first wrote of version of this one in 2014 but since then I’ve re-written it.  I realise poems are not my usual style of blog, but after all, poems are just words with a different rhythm.   I dedicate this poem to every parent who has ever sat in a meeting with Social Services, or with the Local Authority or an NHS Trust, a Supported Living, Care or Residential Home or any other official body who pretended to be listening to them, but in reality, simply wasn’t hearing them at all.  I’d also like to dedicate it to...

Joining, un-joining and re-joining the club 0

Joining, un-joining and re-joining the club

I’ve never been much of a “joiner”. I joined yoga for single class, ditto for Zumba.  I was a Guide for 2 weeks and liked the uniform which was paid for the day I left.  I’ve joined several gyms I’ve never been to and clubs I can barely remember and by now you’re getting the idea.  I’m rubbish at joining any kind of club. But there are some clubs that you join whether you want to or not.  Some of them are clubs that no-one wants to join, but you find you’ve joined them anyway. When Nico was diagnosed I joined a club I never knew existed.  I joined the club of “parents of disabled children” which is a large, well established...

Introducing Tiny Tim syndrome 0

Introducing Tiny Tim syndrome

If you have a disabled child you will have met this one before.  I call it Tiny Tim Syndrome.  It’s living with, dealing with and generally finding a way through the two commonly acceptable options for the future of your disabled child. Your child has to either get better, or die.  Getting better includes cures, miracle and otherwise – and can possibly, in some circumstances consist of the child becoming just more socially acceptable.  This means that they get a green-card either by acting like a “normal person” (i.e. they walk and talk) or if they are outstanding in other ways, such as athletics, comedy, music, writing or just gobsmackingly clever.  In the short term they can get away with even being...

Is this valid enough for you? 0

Is this valid enough for you?

We all need validation for the choices and decisions we make. It particularly helps when you’re feeling out of your depth and a bit fragile.  You need to know that your rather expensive new haircut was a great choice and makes you look younger.  You want to be reassured that leaving your job without another to go to was completely the right thing to do.  And no, your bum does most definitely not look big in that great new dress.  When your choices are validated you feel accepted, calmer, happier and reassured.  That strident little voice of insecurity, uncertainty and fear within you is silenced.  But the need for validation goes far beyond a haircut or a new dress – it can...

From somewhere there to somewhere here 0

From somewhere there to somewhere here

“There” is the place you’re at in the beginning.  It’s place to the place you’re in later, which I’ll call “here”.  But of course, “here” will change over time and you may even think that “there” has changed as well – just don’t use those dreaded words “moving on” with me.  This poisonous little phrase claims to be an aspirational goal which you’re told you must believe is attainable – and more than that, you are told that it’s desirable.  As a bereaved parent one of the things I find most distasteful about the whole idea of “moving on” is that it implies your grief is a temporary state and it’s quite right to think you would want to leave it behind...

The journey to Chip Paper 0

The journey to Chip Paper

When your interview is the main item on the BBC national news, you’re getting press coverage.  To be honest though, if it wasn’t for the other 1,453 unexpected deaths, I doubt Nico’s death would have got a look in. The BBC’s Michael Buchanan (a very nice man) came to our house and spoke to me for hours, most of which was filmed.  We talked about Nico, about his life and his death.  We talked about Southern Health NHS Foundation Trust’s refusal to hold an investigation into his death.  We talked about their decision to conceal from us that they held an in-house review of his death and decided that not only were they not going to tell us it had taken place...