Author: Rosi Reed

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...

Tell me about the importance of counselling 0

Tell me about the importance of counselling

Within weeks of Nico’s death my partner and I knew we were greatly in need of counselling.  As we were at the stage where we barely remembered to wash and eat. The head of pastoral care arranged for us to see the in-house counsellor at the school where my partner worked.  It was free, we could start immediately and could go every week for as long as we needed to.  It felt like a life-line.  Although the counsellor had no prior experience of grief counselling and had never worked with a traumatically bereaved family, he told us he was excited to work with us and was actually looking forward to the challenge.  We had no prior experience of counselling and took his...

It’s all on the file 0

It’s all on the file

In 2017 I had a series of eye operations.  On the first day a nurse came to talk me.  She wanted to take my blood pressure, temperature etc, and go through a few medical and personal details.  She turned to her notes and asked me about my previous medical history.  I told her that on the whole I was a very healthy active person with no real health issues apart from at that point, my sight. She gave me a rather sharp look and said she’d like to talk to me about my anxiety and depression.  I must have looked pretty shocked and I asked her what anxiety and depression.  She shifted uncomfortably in her chair and told me anxiety and depression...

Eternal Flame 0

Eternal Flame

I used to pass my days at home in silence.  I like to work in silence and I find background noise distracting, but it also means that I can spend over 8 hours a day in complete silence, which sometimes seems to make me just too thoughtful, too introspective.  So some months ago I tried having Radio 2 on in the background, just for a couple of hours to break the silence and give me some contact with the world outside of my head and my computer. One day I was listening to the radio and a song came on that make me literally shake and made tears run silently down my face.  That song was “Eternal Flame” by The Bangles.  Not...

Signposts 0

Signposts

Of the people I follow and of those who follow me (on Twitter and via this blog) and of the people I support away from social media, some are much nearer to the start of their journey, some are still loving and fighting for their children and some are further on in their journey than me. At the beginning I found these almost endless variations of these journeys hard to process, but now I’m further down the road I am starting to recognise the signposts.  Things that people told me a year ago which made no sense then, now make so much sense as I too reach that place.  I remember things that people said and now, it comforts me.  I have...

What matters 0

What matters

When I was 8 months old my Social Services file was altered to include the words “No Negro blood, no Jewish blood – suitable for adoption” and with these words my life was changed.  As a consequence of this new page in the file I was adopted by a white middle-class family. I identify as white with mixed heritage. I have fair hair, fair skin and blue eyes.  I’m 20% white European and the rest of me is Sephardi Jewish, Gujarati and Gambian.  I can trace my family back for 39 generations, which is a lot of history and some of that history is not very nice.  Between the Spanish Inquisition, the East India trading company and the Royal Africa Company, there’s...