Eternal Flame

On Thursday I was listening to the radio.  Recently I’ve had the radio on in the house in the afternoons.  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 my plan is that a couple of hours of Radio 2 will break that up and give me some contact with the world outside of my head and my computer.

Yesterday 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 everyone’s first choice for a song to move you to tears but for me this song is very special.

When I was pregnant with Nico I determined to have the “good birth experience”. The one I didn’t have with my daughter.  When I was in labour with her I asked the midwife for pain relief and she replied “no, you should suffer, you wicked sinful girl” So the MN and I made elaborate plans for our perfect home birth.

By incredible luck our midwife lived a few houses away on the same side of our road and she agreed with the plan about having the baby in our bedroom surrounded by everything familiar and with our specially made music playlist so that our baby would be born to the sound of lovely music.  I bought a new nightie,  new bed linen, I made a playlist tape (oh yes, those were the days of mixed tapes!) and the MN worked hard to finish off all the DIY to the bedroom.  Everything was going to be just as perfect as we wanted it to be.  But life so seldom is interested in our plans is it?

Two weeks before my due date the hospital discovered that they had made a mistake and given me someone else’s blood sugar results.  So when a few weeks earlier I was told that my blood sugar levels were great, they actually should have told me was that I had incredibly high (almost off the scale) level gestational diabetes and needed a total diet change and monitoring.  But I had spent almost my whole pregnancy in blissful ignorance of this.

So all our plans were off and instead I was booked in for an induced hospital birth on my due date.  Bum!  However, we arranged with the hospital that we could use their “family room” which was then a very new idea.  A hospital room in the maternity ward, but laid out like a normal bedroom with wallpaper, pictures, a bed of normal width and height, arm chairs with cushions etc.  We thought it would do.  It was a non-scary room and owing to my previous birth experience I was already having the heebie-jeebies, so I needed there to be a lot of non-scary around.

Armed with our cassette player (front loading Sony, only the best in high tech for us!), my specially made mixed tape, my water spray, cologne, sucky sweets, clean nightie, dressing gown, hair brush and bag of yellow baby clothes (because we didn’t know if it was going to be a boy or a girl and as everyone knows, that means lots of lemon to cover both possibilities) we went in on my due date.  My mother had arrived the night before to stay with us, take my daughter to school and keep things happy and normal for her.

Again, things didn’t go quite as planned.  After the initial injection I had a few contractions which gradually faded away to nothing.  By that evening the midwives conceded nothing was going to happen that day and I sat up in bed eating toast very unhappily by 9.00pm and the MN went home.

Bright and early, on the dot of 8.00am we were once again a sea of activity.  The midwives arrived, the MN arrived and they tried again.  I knew it was 8.00am exactly because we had turned our cassette player over to “radio” and were listening to the news.  As I had my inducing injection again it was announced that the UK was accepting applications from Britons wanting to train as astronauts.

Simultaneously my injection kicked in, the MN announced he was going to apply to be an astronaut and a massive contraction threw me off the bed and onto the floor.  I threw up all my toast from the night before and we knew were in business!

I strapped on my TENS machine and we got stuck in.  Most of the next 3 hours I don’t really remember.  The 10 metre long corridor between the room and the loo became like an endless frozen wasteland, with me clinging to the walls when things got bad, but we also had lots of giggles along the way.

By 11.00am, only 3 hours after it all kicked off, we were nearly at the finishing post.  I became rather obsessed with the pink candlewick bedspread I was lying on and after a few gasps of gas and air treated everyone in the room to my theory of how the candlewick bedspread reflected the waves breaking on the Grecian shore.

But in all the fuss no-one remembered to put the cassette player back onto “tape” and instead it stayed on “radio” which meant my mixed tape was never played and instead – with his blue, blue eyes wide open and staring all around, my son Nico was born to the sound of The Bangles singing “Eternal Flame”.https://www.youtube.com/watch?v=qNDifMyQuv8

Yesterday, it was the first time that I had heard that song again in many years.  Suddenly the words took on a whole new meaning “Is this burning an eternal flame?”  I know the answer now. Yes it is – it really is.

On the whole I think Nico did much better than my daughter, who was born to the strains of “Hey fatty bum bum”.  Nuff said.

With Bunny

White Noise

A few weeks ago on Twitter a concerned and hard working woman was talking about her job training future social workers and she used the phrase a “privilege to work with their minds and values before they are set free into practice”.  This made me think about those social workers in training, their aspirations and hopes for the future.  Their yearning to make a difference in the world and their thirst to do good.

It also made me wonder at what point their training includes treating parents of disabled children and adults as if they are a blot on the landscape?  At what point are social workers told to ignore parents, belittle them, bully them and make sure that their wishes are ignored?  At what point are they taught to act as if the words of the parents are simply white noise?

I certainly can’t imagine the woman on Twitter ever including that in her training course.  I absolutely cannot imagine any university course for social workers, any college course for social workers or any other type of course anywhere ever including “how to not listen to parents” as one of the training modules.

So how does it happen? When does it happen and why does it happen?  It there any way we can stop it happening?

I realise that at this point some of the people reading this will say that they know a social worker who is wonderful, who has turned their awful situation around and enabled their child/young person to lead a happier, safer and more fulfilled life.  I also realise that there will be social workers reading this who’ll be hurt, affronted and feel that my description bears no resemblance whatsoever to the work they do and the people they are and the people they work with.

And that will be true, because for every story there’s a contradictory story.  For every person who’s not good at their job there is someone else who shines out.

But the big and inescapable truth is that I’ve had many parents write to me with their horror stories concerned dealings with social services.  Stories of pain and frustration that they simply cannot get their social worker to listen to them.  They almost seem to be deliberately ignoring their pleas.

Nico never had a social worker.  We were never offered one.  Having one was never discussed with us and actually he was 15 before I was even made aware that he could have one, or that many families in our position did.  I remember the first social worker who came to visit us.  It was 2003 and Nico was 15.  She came into my house and told me a lot of stuff I didn’t understand.  She had never met Nico but she told me in ringing tones that I really needed to start living in the real world and accept that Nico “had the intellectual capabilities of an 18 month old baby”.  I asked her why she would say such a nasty thing to me without even knowing him or really even knowing me.  She replied that it was high time I put an end to my fantasies and accepted that my son was “hopelessly retarded” and was going to die young anyway, so I should stop planning for a future that wasn’t going to exist.  Then she left.  I never saw her again and a year or so later I heard she had retired.  I have never forgotten her and I have never forgotten her words.  She had no interest at all in actually meeting my son or hearing any of the things I was trying to tell her.

But that was just the beginning.  In 2008 when Nico was 19 (oh yes folks, the dreaded “post 19” story) we received a letter telling us that Nico was being allocated a social worker.  However it seemed that this was going to be good news as his new social worker was a woman we had known for years.  She worked for years at Penhurst, where Nico went first to school and later to their young adult unit so he was there from the age of 6 to 21.  This lady had known Nico well for some time and her mother still worked with Nico at Penhurst.  We thought this was a gift and in fact our first few meetings with her were just great.  She cut through all the acronyms and jargon and explained everything to us.  She was so clearly on our side and told us that she was going to be there for us to help us through, thick and thin.

Then out of the blue, in July 2010 she wrote to us saying that Nico was to be removed from Penhurst as soon as possible and moved to somewhere cheaper.  Our safe, happy little world collapsed.  In the many, many meetings, letters and emails in the months that followed, she never again listened to us, supported us or did or said anything at all which suggested she cared about us, or about Nico’s future.

The events which passed between that letter arriving and Nico moving to Barrantynes, where he died, will be part of the Independent Investigation which has just begun.  In the circumstances I can’t talk more about it at this point, though I am guessing that many of you will be able to fill in at least some of the blanks.

So how did this caring young woman turn into someone who had no interest at all in what happened to Nico, so long as she fulfilled her brief of getting him out of Penhurst?  What turned her from someone who listened and cared to someone who just heard white noise whenever we spoke?

For a start, cuts from the new government began. Deep cuts.  Cuts that made maintaining an outstanding level of disability care impossible.  If I had been put in her position at that time I would have resigned and then contacted us, offering to help using her specialist knowledge.  But she didn’t do that.  Instead she was offered a promotion based on her ability to coldly and heartlessly destroy the care package that was keeping a precious young person safe and well, and move them away, to anywhere so long as it was cheaper.

There must have been others and there must still be others to this day, who battle on, hoping to do good and to make a real difference from inside the system.  But perhaps they feel overwhelmed and by now are physiologically scarred by their own inability to be a force for good, when prevented by the state.  Perhaps it all seems so terrible that they simply cannot allow themselves to identify with families.  Cannot let themselves hear the anguished and pleading voices because they know that if they do, they will only have to deny what they so desperately need.

I have been studying the SCiE website (Social Care Institute for Excellence) http://www.scie.org.uk/ which is a very good, very interesting website.  It is clear from the various articles and blogs featured there, that the SCiE are deeply concerned about what is happening in social care now.  They are anxious to support and train social workers to be the best version of themselves that they can be – particularly in light of the on-going cuts to Social Services.  They are clearly aware of the “white noise” effect and what they would like to do to help all social care workers improve the service they give.

But perhaps they are already too late.  Perhaps the war has already begun.  As I write this, Oxfordshire (the county we live in) has just announced a further 52.6 million pounds of cuts to social care in the county, on top of the millions of pounds of cuts which have already been forced through.  This will take social care in Oxfordshire to the point where it’s untenable and inevitably there will be great suffering and deaths as a consequence.

There have already been two well documented responses to this; one is from an alliance of voluntary sector organisations and care providers who have formed an unprecedented coalition to try to fight these cuts.  They call themselves the “Enough is Enough” alliance and they hope to not only stop these cuts but make more people aware of the effects that the existing cuts are already having – of how many lives have already been blighted and destroyed and also to make people aware of the devastating effect the increased level of cuts will have.

The other well documented response is from a local Oxfordshire MP who has written to Oxfordshire County Council urging them to re-think these cuts.   He suggests in his letter to the council leader “the proposals for possible cuts were disappointing and suggested the Conservative-run council should look at back-office savings and shared services between the emergency services instead.  There is still significant scope for sensible savings across local government to be made by back-office consolidation, disposing of surplus property and joining up our local public services; we will be discussing with Oxfordshire how this can be taken forward to help protect frontline services.”

Ah yes, interesting………..but you see Mr Cameron, as well as writing letters protesting about these cuts, YOU are the person largely responsible for them in the first place.  If you really don’t like them, there’s such a simple answer.  DON’T DEMAND THEM.  CANCEL THE CUTS DAVID.

But that seems unlikely.  The lines for the new war are already being drawn up.  The opposing armies are already digging in.  I have the strong feeling it will be the families who end up sitting out in no-man’s land while the shells fly over their heads.  It’s already becoming the norm for most families with disabled children.

So my question is this – when did it start to be normal that our voices became white noise?

028

Telling Tales

On 21 October I wrote on my blog that the successful candidates who would be heading up Nico’s investigation were the Health and Social Care Advisory Service (HASCAS) lead by Dr Androulla Johnstone.

Two days later I received an email from a man (who I won’t name here as it isn’t essential and I haven’t got his permission to include his personal details here) I have never met and had never heard of.  He warned me that a man called Jon Allen, a Non-Executive Director with Southern Health NHS Foundation Trust also held a directorship with HASCAS, although his name didn’t appear on their list of directors.  He clearly had nothing but my own best interests and those of Nico’s investigation at heart and wanted to make sure that a great injustice wasn’t done – with Southern Health already tainting the investigation before it had even begun.

I replied to his email and we wrote again to each other a couple of times.  He had also lost a son (under very different circumstances) in the care of Southern Health and was clearly both a very clued-up guy and a caring guy.  I thanked him and assured him that I would be looking into this very carefully and thoroughly.  I emailed Oxfordshire Clinical Commissioning Group and Beverley Dawkins immediately to let them know the situation and we began to look into this.

The man who emailed me then tweeted about this and about his concerns with who was involved (potentially) in our investigation.  His tweet was quickly picked up by some big hitters in the social media disability world and it was re-tweeted a lot.  Then various people started to comment on the “situation” and those tweets were re-tweeted as well.  It started to grow and spread very rapidly.  To my horror I realised that in the course of one day this “news” was being spread around without anyone asking me about the situation.  I posted a tweet, asking everyone to calm down and please to give me time to look into this and I would then let them know.  A few people re-tweeted my comment but the other comments continued to be seen by more and more people.

The validity of our investigation was being questioned on social media before it had even begun.  This was getting serious.

We had chosen HASCAS as a interview panel of people and one of our panel was away on holiday and would be back soon, but it would be after I had left for my own holiday.  We had a conference call and agreed that this was a matter of urgency.  We needed to establish all the facts very clearly and some of this would be done while I was away.

I came back from holiday to find that the Twitter storm had totally died out as other more interesting things had happened in the meantime, but as I said to the rest of the panel “people remember and mud sticks”.  I don’t need anyone to tell me that often the truth is an inconvenience which just gets in the way of a good story.  I knew perfectly well that unless we absolutely knew beyond any shadow of doubt, the total truth of this, then my son’s investigation would forever be tainted in some way.  After the amount of work that I had put into writing the Terms of Reference for the investigation, choosing the interviewees and then interviewing them, no way was I going to let this get trashed at this stage, before it had even begun.

So here my tale of truth and it is completely true.  I was totally prepared to dismiss HASCAS and start again if I needed to.  I was not prepared to compromise, bend the facts or in any other way accept a half truth.  It may be that you were one of the people who tweeted about us being compromised by Southern Health, so now you’ll know the truth and it isn’t quite such a shocking story.  But it is the truth.

When Dr Androulla Johnstone was interviewed one of the things she told us was that Jon Allen had previously been a director at HASCAS but he had stepped down from this position prior to their applying for the investigation.  She volunteered this information at the end of her interview. At the time we thanked her for letting us know, but thought no more of it.  It didn’t occur to me at that point there could be a conflict of interests since the bloke had gone.

But in these new circumstances we wrote to HASCAS, seeking further explanation and assurances.   Androulla Johnstone wrote back (and this letter arrived while I was away on holiday) to say that Jon Allen had been a company director with the HASCAS trading arm for a few months and stepped down in August this year.  But he was never a director with the part of HASCAS which carries out investigations.  When Androulla interviewed with us Jon Allen had already left HASCAS, so they believed there to be no conflict of interests.

HASCAS and HASCAS Consultancy (the trading arm of the company’s official name) are two entirely different legal entities with separate boards. They don’t share information, both run independently and are financial separate.   One simply helps to raise funds for the work of HASCAS to continue.

However (and I think this shows the power of social media) we then received an email from Southern Health about this!

It was from Lesley Stevens (who has featured in this blog before now and not always in a warm, fuzzy and favourable way) and it read “It has been brought to my attention that there has been comment on social media that HASCAS is not independent from us because one of their directors is also a Non-Executive director with Southern Health.  This is inaccurate.  Jon Allen recently joined Southern Health as a Non-Executive director and at that point he resigned from HASCAS.”

So HASCAS says Jon Allen doesn’t work with them and both Jon Allen and Southern Health thinks he now does work for them.

So finally we can begin my son’s independent investigation.   Now we can start the part that really matters, which is getting to the heart of what happened, how and why.

Yet this has been another learning curve for me.  It has taught me not to doubt the power of social media to spread a message fast and widely.  It has taught me the absolutely importance of “getting it right”.    I think I was naïve not to think that other people would be watching this all very closely.  I’ll try not to make that mistake again.

Sometimes I feel that only a very small number of people either read my blogs or watch my tweets, but now I’m not sure about this – and I’m certainly less sure about who those people actually are.

After all, Southern Health is so convinced of the power of social media that they have their own social media department.  They spend a lot of time and money tweeting, blogging and generally writing sharp edged spin about what they do and what they’re going to do.  If they actually ran their organisation in the way that their spin doctors claim they do they’d be pretty wonderful.

Southern Health – the Blairites of disability care.

 

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 this almost endless variety of personal circumstances bewildering, but as I am getting further down the road I am starting to recognise some of 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 what they said and it comforts me.  I have the feeling of some sort of progression.

Often that progression is personal, rather than in terms of “justice fighting” but I now realise how important personal growth is as well as legal progression.  It shows me that there is a way forward; a way to move towards the light.

But far harder to deal with is supporting people who are at an earlier stage of their journey, just as a year ago some people must have listened to me, their hearts gone out to me and thought “she’ll understand this in a year or two”. Now  I write to and I write about, families who are living through the truly awful times I have already lived through and perhaps the worst thing for me is that I know, I really know, what they are going through and I am very limited in the way in which I can help.

It isn’t sympathy.  It isn’t even empathy.  I don’t just “feel it”.  I have lived it.

So when I read their words of white pain and anger I want so much to help.  Help in practical ways with advice around inquests and dealing with the un-carers, advice around raising money, finding the right legal help, finding the right support and knowing where and when to push hard and when to hold back.  I also want to say “this way that you are feeling now is normal.  It is the way that we have all felt and although the pain is excruciating now, one day you will feel that it was worth it”.  But when you are living in the excruciating pain, being told that is meaningless and trite, so often I don’t even say that.

In the weeks following Nico’s inquest I fell into the blackest hole.  It was perhaps the deepest abyss I had been in following his death.  Days before Christmas and I couldn’t even get out of bed.  I was saved from this horror by a simple phone call.  Beverley Dawkins called me up basically to tell me that if I was feeling really low, really very bad, this was normal.  After the inquest you sort of “crash”.  As she talked to me and explained this, I felt as if I was being given permission to be this way and by the end of the phone call some of my blackest despair had started to lift.

I look back now and completely understand this.  In fact now I think “how on earth could it have been otherwise?” but at the time I was too far into the black abyss to see things clearly.

I had waited almost two and a half years for the inquest.  Although I had been told time and again that the inquest was just a staging post along the way and NOT the be all and end all of our fight.  I realise now that in my heart I was waiting for the inquest, waiting to face my enemy and girding up for that terrible, dreadful legal battle which would see the accused condemned and my faith in the long and costly fight vindicated.  Naively maybe, desperately (maybe) and I’d probably seen too many courtroom dramas, but it really wasn’t like that.  See my blog https://justicefornico.org/?s=down+like+waters for what it was like.  We actually had a “good” result, much better than we had been lead to believe we should hope for.

And then nothing.  We went home. My son wasn’t waiting for us.  The “victory” felt as hollow, meaningless and anguish filled as the waiting had been.

So now I know that the aftermath of the inquest is awful.  If you have recently had the inquest you’ve been waiting years for and now you’re in that terrible place please know this.  It’s normal.  It’s horrible but just for a little while it has to be like this.  You are exhausted and it’s hard to keep going.  Nothing makes sense and you find your feelings of tearing anger, frustration, guilt, blind rage, sorrow and bewilderment that this could even have happened to you and your family, very hard indeed.   While you live it I can only suggest you talk about it to people you trust who love you and write about it.  Above all, know it’s normal.   It will get better.

In the days following the inquest I wrote this poem which I haven’t posted before because I felt it was too bleak.  I didn’t want parents at an earlier stage than me to read it.  Sharing it didn’t feel responsible at the time.  Now I feel I am ready to share it.  But that is because I no longer feel like this (most days).  If you are “in the bleak” and if you are feeling that you just want to hide under the duvet, you are so very not alone.  If you tweet about it, email me about it, comment on my blog about it, know that it’s a signpost I know well, but it’s not a place you’re going to have to stay in longer than you can bear.

 

I let you down

I let you die

And now the longing clings to me

The filthy grief

That takes my time

And haunts me like a sooty grime

 

A closed up room

A boxed up life

Where once was fun and love for me

In chilly piles

Bought with such joy

Un-played with, sad and dusty toys

 

And life proceeds

So heartlessly

Taking your farther away from me

I dead the day

I can’t recall

Your smell, your touch, your eyes, your call

Nico's Photos_0041

Almost birthday boys

Today Connor Sparrowhawk should have been 21.  His mother, Sara Ryan, has written very movingly in her blog https://mydaftlife.wordpress.com/2015/11/15/nearly-turning-21-magic-and-mopping-up-crapshite/ of her plans to spend the day wrapped in the comfort of family, friends and a very large memorial quilt.  But whatever you do and however you dress it up, it’s not quite the same as the day they would have liked to have planned for Connor, I’m sure.

This is not the first time I’ve written about 21st birthdays and “almost birthday boys”.  Last June I wrote a blog on the day that should have been another young man’s birthday, another “almost birthday boy”, Thomas Rawnsley https://justicefornico.org/2015/06/07/21-today/

But in the end I can really only speak for and about my own son, Nico.  I don’t pretend to speak for Connor or for Thomas or anyone else I write about.  I don’t speak for their parents either.  I support them, but they speak for themselves and I read what they write and I listen to their words.  I find strength, truth and power in what they say.  Their compassion and kindness amazes me.

The list of “Almost Birthday boys (and birthday girls)” seems to grow ever, ever longer.  No more candles and no more cakes.  No more careful choosing of presents, shopping for that great bargain version of something they will love, no more excited tearing off of wrapping paper. No more.

We find our own ways to get through the birthdays, the special days, the dreaded days.  Sometimes we succeed quite well but the sadness at the heart of it all remains – how could it be otherwise?

We have started a new tradition of writing on helium balloons and letting them off to fly high up into the sky.  I know so strongly how much Nico would love this that I almost wish we’d also done it when he was here.

We did it once with him and it was for my mother.  He was hilarious.  He insisted that he held the balloon’s string but when the moment came he refused to let go.  Almost crying with laughter, despite all our beseeching, Nico refused to let his grandmother’s balloon fly until our begging had turned into laughter too.  Then he let her go and watched, smiling, as her balloon lifted up, up into the sky.  Of course you did Nico, you understood you needed to make us smile that day.  Of course you did my son, you always understood the untold story at the heart of things.

Your child’s birthday is one of the days when you show how much you value them.  For the “almost birthday boys” not only are there now no presents to buy and wrap but now all the parents of these young people are facing the ordeal of fighting a long, long fight for justice.

We are fighting for people to care about what has been done to our children and join us in being shocked and horrified.  Why aren’t they as upset as we are?  Why has our fighting for justice after the death of our children made people so uncomfortable?  Why are they irritated that we even still insist on mentioning them so frequently? Why do so many people view our children as forgettable, disposable and unnecessary?

When was it decided that our children had no value?

2015-04-13 13.10.12.jpg

 

 

Mexico

A luxury family hotel room in Mexico with an open plan loo in the bedroom.

What’s wrong with that sentence?

If you can work out the answer you already have a fascinating and hilarious glimpse into our holiday in Mexico.  For the record I just want to say that I don’t want to eat anything that ends in the word “molé” for quite a while.

But the sea was nice.  When I wasn’t racing out of it and up the beach to the nearest loo.  I saw my first tropical storm.  It was impressive.  I discovered two different hairstyles you can successfully achieve in 100% humidity.  Actually the beaches were fantastic and the surf was amazing.  I got rolled over a few times and encountered what I can only describe as a type of sand enema.  That might explain everything else.  I have truly been exfoliated.

I had a lot of time to think in Mexico.  Floating (sometimes) in the sea, or in the pool.  Walking on the beach, watching sunsets, people watching and a lot of watching the sea.  I did a lot of thinking.  I actually like thinking.  Then I write down the thoughts and they become another blog.

When you take people out of their normal, everyday surroundings and put them somewhere quite different, you see them in an altered clarity.  It’s as if their personalities and character traits becoming magnified, enlarged and so more visible against the very different backdrop.

In Mexico I realised that it isn’t just that we miss Nico every day.  It really isn’t just that we mourn him.  It isn’t just our grief.  It isn’t even our fight for justice.  Losing Nico and everything that has happened since then has changed us all and forever.

In Mexico I realised that my MN used to be such a happy, jokey, fun guy always playing jokes and making everyone laugh.  In Mexico I realised for the first time that this guy had gone forever.  He’s not coming back.  There is no healing which is going to replace the sad, thoughtful man I live with now with the one I used to know. He can still be funny and my god, is he still caring and kind, but it’s all more poignant now.  His pain is something that he lives with every-day, but seldom talks about.  He carries it with him, as if in his pocket.  Sometimes he gets it out and looks at it.  Often he doesn’t, but I know it’s always there.

We arrived in Mexico on their “Day of the Dead”.  In every house they make an “altar” (for lack of a more accurate word) to those who they have loved and lost and on it they put their favourite photos, lovely orange flowers, crosses (often in flowers as well) and mementos of the person including – very importantly, their favourite food and drink.  We paused at a particularly lovely one.  My daughter said “If we made one for Nico we’d have to put spicy curry, Chinese take-away and pom bears on it!”  The MN made a strange choking sound and bent over.  He was sobbing, Almost unable to stand and all he could mutter was “my son, my son”.  We just put our arms around him and held onto him for a long time.

It was then that I started to think about the changes.  About these people who I know so well, better than I know anything else in the world.  And about how Nico’s death has changed them and how I think it has changed me.

Unable to handle stress now, the MN becomes incredibly tense if anything does not go according to plan.  At any challenge or change he didn’t see coming he becomes ashy faced and sweaty, unable to deal with it to the point where he will need to walk away in order to calm down.  There doesn’t seem to be anything I can do to stop this.

I try to deal with it by instantly taking the stress on, whatever the situation is.  “Don’t worry I have this, don’t worry I can sort this out, don’t worry I will talk to them”. On and on.  It’s become my default position and it’s exhausting.

Even harder to see is the change in my daughter.  She is so terrified now of making the wrong decision that she finds it almost too difficult, too painful, too traumatic, to make any decision.   Just in case it’s the wrong one.  She is obsessive about protecting us, her remaining family, from any type of harm.  Any type of pain, upset or slight.

What should have been the relatively simple (for someone who works in travel) act of arranging a family holiday for us abroad became a ghastly circus of stress.  She tried desperately to make sure that we would have the perfect holiday, but as the process of even choosing hotels, never-mind destinations became more and more stressful with no-one able to make choices I saw her become stressed to the point of physical illness.  The burden she felt of the fear of making a wrong choice and not being able to make everyone in the family, our now tiny little family of three, happy.  Of course we didn’t help at all, unable to handle stress and reacting badly to decision making.

Then on the plane coming home I was forced to meet my own grief demon.

My daughter started to feel unwell.  She felt nauseous, faint and dizzy.  Getting to the plane and during the journey I fussed and fretted after her as if she were a poorly toddler, rather than a grown woman in her thirties.    And I was realised how utterly terrified I am of losing her.

Ten years ago she had cancer.  She’s fully recovered now but somewhere lurking in the back of my mind is that constant fear of it returning.  It’s not logical and I realised on the plane that my change is a fear, deep and gnawing, that I will lose my other child.

So in Mexico I finally acknowledged the people we have become.  The people I’m afraid we will always be now.  There will be holidays; there will be laughter, days out and good times.  The rest we will just have to live with.

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