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Monday, 8 January 2018

Finding meaning after the death of a child

I checked into my blog today, after a very long time, as a young friend reminded me that she still read it to keep in "contact" with our precious Chloe.  I noticed that there have been 94,632 hits on the blog from all around the world.   All these people giving me their time to hear about my grief.  I'm beyond touched.  I hope so much that all of you reading the outpourings of my heart, get some comfort too.  One of the worst possible things about grief, in my experience, has been the isolation and the loneliness.  That image of watching the world carrying on its business, whilst your heart and very reason for being has been so cruelly wrenched away.

Most especially I hope that I reach and connect with families who have suffered the tsunami of all losses - their hopes, their dreams, their child.  I so often turn to literature or the arts to soothe my broken soul.  The musician  Nick Cave,  a fellow bereaved parent, captures this loss so beautifully in his agonising song Distant Sky

They told us our gods would outlive us
They told us our dreams would outlive us
They told us our gods would outlive us
But they lied 

 I think often of young people.  Siblings and friends too who have lost such a key part of their own narratives out of the natural order of things.  An anachronism in the truest sense of the word.

I am writing a book, to be published this spring by the amazing Splendid Publications.  My publisher, and very dear friend Shoba Ware, is keeping me on track.  The book is about surviving, and exploring the possibility of trying to grow as a human being, after so much loss.   I lost my child, which was without question, the most painful of all.  Two years later I lost my much loved husband.  The backdrop of my life includes my Mother's death when I was 20 and I lost a sister to suicide.

So much loss.  Thankfully so unusual.

I write primarily for myself and for my family.  I want to make order of the sequence of events.  I want to place it into our  life story.  I want the next chapter to be about how one navigates life after loss, how one interweaves it into the future without it darkening and destroying everything that comes after.  I want my surviving child and grand children to look back and understand that despite anything/everything one can still choose to live and to live well.   I owe it to them to "walk the talk".

I respect and love my little family too much to not want to make the most of every single breath that I have left.  Giving up is/was never an option when you have other children.  In fact I don't think it should ever be an option, as each of us can if we want to live a worthwhile, although very different life to the one we had imagined. Granted, it can be so painful and may sometimes take a titanic effort just to get out of bed on the morning.

I feel so closely aligned to a tribe of women (excuse my focus on women but I feel so connected to other Mothers most of all) all over the world who have carried on, despite losing a child.  I feel so proud to know these people.  Some, I have only met online.  But we seem to know each other.  By speaking and connecting we break  down some of the barriers of isolation and find comfort. We share our vulnerability - so important for survival.  I think we grow and learn from each other too.  They are an incredibly important group of people and I love, admire and respect each and every one of them. 

Anybody who goes on living after losing a child is a hero in my book.

As a journalist, I am reading and researching extensively about life after death - that is after the death of loved ones.  I am having conversations with the most amazing people.  Trying to capture the wisdom and tenderness from those who are often up close and personal to grief and bereavement.

One of the people I admire most in the world is Julia Samuel, MBE, a psychotherapist and paediatric counsellor.  She was also a friend of Princess Diana's and has written the best book ever about grief and survival Grief Works.  I am so humbled that she has taken time to contribute to my book.  I just wanted to share a snippet of some of what she has said.  I asked her the question can anybody really find meaning and contentment after the death of a child.  Here is what she said:

"there is no exact answer to this, obviously, because following the death of your child your whole relationship to yourself, your life and everyone in your life is turned upside down - but what people do talk about, following a long process of grieving, is that they find a new normal, a new way of viewing life, it is different to their past, but sometimes with the level of the pain comes an expansion of the self and an increased capacity to feel enriched by life - and their perspective of what matters in life changes too, much more about love and connection than success or material things. This can give them new experiences of happiness. "

My conversations will continue and I will continue to share snippets.  If you are reading this as you are hurting, I send you all my love and hope that in some tiny way my words help you to feel less alone.  

Thursday, 3 March 2016

three years on...

First the good news, Time is some kind of healer; for me at least that is.  One thing I've learnt, above everything else, is that I can only speak for myself.  My experience of grief is unique; as is everybody else's.  But maybe there are some common themes; and just maybe sharing my thoughts will help somebody else.  Who knows really.  Sharing certainly helps me.

I get truly furious if people tell me how I feel; how to feel. I promise never to do this to you dear reader.  If you too have lost a child; I send you the hugest, deepest, most loving hug I have.  It's all I can give.  But I give it with all of my heart.

It is true time has some effect on softening the edges of pain; transforming the razor sharp agony into a duller, but pretty constant, ache.

So three years ago my youngest daughter, a light of my life, died. It wasn't a surprise; she'd been ill for three years.  Not that you'd know it.  There were dark dark times; but great ones too.  No she wasn't perfect, in fact very naughty at times, but she had this lovely light energy that allowed her to dance through life.  She made me happy; made others happy; was loved hugely and missed even more.

I can feel her with me sometimes.  The touch of her skin; her tufty hair (destroyed by chemotherapy), her beauty and her hands.  I always remember her hands.

I am surrounded by people who adored her and miss her almost as much as I do.  I say "almost"; as I'm of the mind that a Mother's love is the strongest of all.  My children, and now my grandchildren, are the only people I'd lie under a bus for.  Just nature; I guess.  But there's very little chance of anybody forgetting my Chloe.  She was one of those people it was great to be with - full of mischief and fun,  with an ability to fill every second.  I know that others are still in pain too; but I know I can't help too much with that as much as I want to.

Loosing a child is so utterly terrible, A tsunami of the soul; the emotional equivalent of going through a high speed head on collision; the kind of pain that stripped every single pleasure from life and  made me not want to live any more.

But I survived and have learnt to live a kind of life around the pain.  For a while I tried to pretend I'd moved on - just enjoyed the everyday life - but it wasn't true/it isn't true.  I have survived; but I'm emotionally disabled.  A layer of skin has been ripped away and what is left is very very different.

And here's the bad news/of maybe it's just the news from me.  The worst for me is trying to forget, to pretend that life will be normal again.  For the worst of all pains is in the pretending.  And every now and then I try to escape again.  On this anniversary I left the country, and with it some of the hurt.  No escape I'm afraid.  The darkness was there to great me; just where I'd left it.  Only this time it hit me hard and fast - whispering in its cold menacing tones .. you can't run away.  This is YOUR life, face it, embrace it, find it's centre.  Only then will you move with the flow again...

I had the most beautiful baby girl; I loved her with every fibre of my being. She grew to adolescence and everything was just as it should be.  But then she got ill and died.  I lived.  That's my story.

So next year, when her birthday and anniversary come round I will stay.  Stay here, where I should be.  Where my family is.  Where I belong.  I will sit with it and let it touch every single part of my body.  I will cry and will never say "oh I'm fine".   I will say "I'm not fine; I hurt like hell".  I may join that bereavement group I've avoided for so long, sit in a church, a park, anywhere and mourn my daughter every day if that's what I need to do.   Maybe I will never get better; I may go on to sit in the shadows of life forever knowing that there is no recovery from this.

But the good news, I think, is that all of this is ok and so much better than pretending.  I'm taking back my life and MY pain. And somehow there is a comfort in that.

Love to you all wherever you may be. xxx

Monday, 30 March 2015

Going in circles - two years on..

For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?

But if a spiral, am I going up or down it?

How often -- will it be for always? -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 
― C.S. LewisA Grief Observed

Today is a beautiful spring day.  Still crisp; but bathed in a hazy sunshine and topped by the brightest blue sky.  I love the sky.  Blue -  Chloe's favourite colour.

My pain sharpens, becomes more jagged, on days like today.  Daffodils spring to life; and my eyes rest on my young daughter's picture.  My young daughter who is dead.  So final.  So without any hope at all.  So unlike those daffodils - the symbol of spring.

 The sunshine  makes the enormity of the loss so much clearer.  It is the contrast; I think.

Chloe died two years, one month and two days ago.  It seems like yesterday; it seems like a lifetime ago.

"for in grief; nothing stays put".

And that's what I am learning.  One moves a little forward, one tastes a little hope, one almost feels fleeting moments of  - dare I say - "happiness".  But not for long; never for long.  The sadness creeps back.  A friend once wrote to me "grief is like being run over by a truck.  It then reverses and runs you over again and again".  

How very true.

But I don't write to depress.  I write to share.   Reading C.S. Lewis A Grief Observed is a beautiful experience.  The words speak to my battered soul and whisper "you are not alone".  Through them I feel a connection with another being who has survived.  Despite the most viscous of all losses; he walked, he talked, he lived.

And so do I; although is some kind of weird haziness of a life.  A life torn apart; a life missing a centre. " While there's life, there is hope." says Stephen Hawking.  And I know that he is right.  Despite having plunged the deepest depths of despair; I can still appreciate a sunny day.  If somebody had told me I would live after my child had died I would never have believed it.  

Does time heal? I'm really not sure.  Some things feel worse.  I find it impossible to look at baby photos of Chloe; to watch any video of her; to touch the huge piles of her clothes I have stored in many many boxes.  It just hurts way too much.  

I believe totally that one must feel the grief; sit with it; talk about it and roar in anger at the utter unfairness of fate.  And when that is done; do it all over again and again and again.  The real danger lies in packaging up the grief in a box, in a room, in a place and hiding away.  That is the road to nowhere. 

Maybe I will never look at those photos and that is only because my daughter mattered so very much to me. But I will keep trying to live; trying to love; trying to survive.   And I thank all of my precious friends and family who walk beside me with all of my heart.  

Wednesday, 5 November 2014

A handprint on my heart

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

 Wicked - For Good Lyrics 

Such a poignant song for us.  The song one of Chloe's best friends, Olivia, sang at her funeral.  Olivia sings so beautifully/hauntingly.  And Chloe too.  One reason this song resonates in so many ways. The song tells of one friend who will go on to do amazing things; the other will be lost. 

 And that's how it is.

A memory springs up.  I'm crouching behind a bush at the singing teacher's house. "you aren't listening to me Mum!"   She was private, my girl.  A wonderful talent, but wanted to keep it private, even from me.  Still not sure why. They were special times sitting out there snatching a moment of her glory.  

"I'm limited",  such painful words that spear my already broken heart.  She was.  But only by cancer.

A song I heard a few weekends back with one of Chloe's best friends Sarah. We went to see Wicked. It was wonderful, painful, joyful, difficult - all those emotions all bursting out across the theatre.  Sarah is studying to be a children's onclogy nurse.  Wow.  I can't really write about Sarah without tearing up.  All I can say is that the NHS will be very very lucky to have her.

And as time pushes and shoves me away from my youngest child, I am indeed calmer.  I feel my life is building slowly and gently around the cavernous wound of loss.  Time heals; it is true.  But it only heals the intensity.  One just couldn't possibly survive at that level.  That, which is left, is quieter, gentler but, so sorry to admit, more deeply painful than anything else. 

 The finality of the loss sinks in.

"I'm limited".  I am and always will be.  But only by the death of my daughter.

Thoughts crowd my mind.  The song -  a momentary relief as I dive into the pain.   The words sharply reminding me that I too have not only lost a daughter; but a best friend too.

And now whatever way our stories end
I know you have re-written mine
By being my friend...

So many discoveries in the landscape of grief.   My daughters are my best friends, my life's work, my everything.  

Like a handprint on my heart

 I have most definitely been changed for the better because I knew you.  

  My daughter Chloe.  My best friend. 

Friday, 5 September 2014

Why I support Saatchi Bill and why maybe you should too....

saatchi bill, medical innovation bill

Professor Andy Hall from Newcastle University, Lord Maurice Saatchi and Debbie Binner   discussing the Medical Innovation Bill

Ah the arrogance of the well person (back to this in a minute).

I was there once too.  Blissfully sailing through life with three beautiful healthy daughters.  Great husband, great job, great life.

Apart from the usual childhood illnesses, never really gave our health a second thought.  None of our children, nor either of us, had spent a day in hospital ever - well almost never(  I  let the side down at 24 - fracturing my spine after falling from a horse. Major at the time: minor in hindsight)

Life changes fast.  Life changes in a moment.

This Sunday (7th September) at 7.40am Radio 4's Sunday Programme will debate the medical and legal ethics brought up by Lord Saatchi's Medical Innovation Bill.

The Bill is designed to help medical doctors innovate new treatments and cures safely and responsibly when a terminally ill person has exhausted all standard treatments.  The programme asks "will it help patients"

I say it will.

The Bill was launched after Lord Saatchi lost his wife, the novelist Josephine Hart, to ovarian cancer.

"Insanity: doing the same thing over and over again and expecting different results".
For me Einstein's quote captures the essence of the Bill. 

The Bill is for families like mine.  Families destroyed by the bitterest of grief, as we've lost our youngest child to a system that refused to flex when we didn't want it to do the same thing again and again.  The research showed that the treatment wouldn't work.  It didn't.  No lesson learned there then. But at least we were all "nice and safe" as we stuck to the protocol and had all the clinical evidence we needed. .... you get where I'm coming from

Ewing's Sarcoma, a terrible adolescent bone cancer, killed my child.  That's true.  Just like leukaemia killed almost every child it touched in the 1970s.  Only after that people refused to do the same thing and pushed the boundaries.  Now almost 95% of children and young people survive leukaemia.

Ewing's Sarcoma killed my child; but the system didn't try hard enough to save her.

If only Chloe had had leukaemia.  My expectations have shifted somewhat you see.

Back to Saatchi.  I was interviewed today by a Radio 4 journalist for the programme.  Not an easy interview.  He was tough on me, which is unusual.  Usually even hard bitten hacks step around a bereaved Mother.  But not this time,he pushed me hard and I admired him for his professionalism.  I felt like a person again.

Why did I support Saatchi?  How can parents/patients really play a role in deciding treatment as they only ever have crude internet-based knowledge? Why do we need the Bill when doctors are already free to innovate? Would the Bill have made any difference to Chloe? Isn't the Bill useless really because doctors have a "God-like" self belief and if they don't want to innovate they won't and will just ignore the Bill (not my words)? Isn't the Bill just a waste of everybody's time? Was Chloe's consultant scared of being sued? Would I have sued the NHS?

Oh and -  to be fair this was said with some respect - aren't people like me and Lord Saatchi attention seekers who are stuck on campaigns like this as a way of exorcising our grief.

As a former broadcast journalist, I recognise a good interview.  This was a good interview and these were all valid and important questions. An interview that pushed and challenged and forced me to examine my own motives.  It made me think and dig deep into my soul to check with myself that I was doing/am doing the right thing.

Grief is utterly exhausting.  Supporting a campaign like this is too.  Trying to engage with an industry with a firmly "closed door policy" to any non-medics who want to challenge the status quo.  I've even had hate mail.  Quite amusing hate mail actually, and rather well written, but sad, I guess, that somebody would want to personally attack me.   I really would rather not be involved in this for many many reasons.

Some of the doctors and other health professionals I met with Chloe, top my list as among the best most decent people I've ever met.  But I stand firm in my belief that the NHS, despite its rhetoric,  does not take patient/public involvement nearly seriously enough.

I support the Bill because it is the right thing to do.  I support the Bill because I've seen at first hand the terrible messy world of childhood and teen cancer and witnessed time and again a kind of entrenched status quo.   "We can't do that as the evidence doesn't support it," our doctor would chime.

  Oh yes, dear consultant, in a perfect world we would have all the right evidence at the right time and yes I'd agree with you.  But when is that going to happen? Like, Never! Seeing as you work in a field where survival rates have improved very little; if at all, don't you think it's time to try something else?   Time to look at creative solutions, working together with industry, regulators, God forbid patients and parents!  Let's look at risk.  How do we share risk.  How do we make sure we provide a structure where we can push forward together and do something else.  How can we get better outcomes?

Can parents, like me, ever truly engage with any value in the complexity of medical discussions?  Maybe; maybe not.  What many of us can do is understand risk and the odds involved.  After all cancer patients work with this all the time with current treatments.  What I wanted was some control over my daughter's life.  I didn't want me or her to be dismissed and left on a conveyor belt which was speeding rapidly down the wrong path.  To the system she was another sick child; to me she was  everything.  Simply everything.

What would you do?  How would you feel?

My daughter was given a 25% chance of survival on current treatments when she was diagnosed.  We saw that as hope, so we were happy to try the treatment.  When first line treatment failed, the odds dwindled to 7% at best.  That wasn't good enough and we wanted to try something new; something else.

We couldn't get it.  There are treatments out there and combinations of treatments that had some clinical evidence to show that they could have made a difference.  But we couldn't reach them. I think that was wrong.

Was our consultant scared of being sued by us?  In truth I've no idea.  Do I think this Bill would have changed that - again I've no idea.  But I feel I would have been considerably more empowered as a patient representative if there was a clear structure to work from and I think that would have helped. I also felt that our doctors barriers were sky high from the beginning.

Would he have refused to work with me.  Again I've no idea. I'd like to think not and I'd like to think that he is/was a good man doing his absolute best.   But again I would have had a structure to take to him and maybe that would have helped all of us.

  For those lucky souls with no need of serious treatments for cancer or other illnesses, this may all sound like a pretty depressing subject.  Best avoided.  But we avoid this subject at our peril.  If you or one of your loved ones gets a rare cancer - or rare illness - or even the wrong kind of common cancer -you will have a big problem. If the pharma industry doesn't see you as a lucrative option, you are going to have to rely on your doctor being firmly on your side and maybe one day working with you to access one of those "imperfect"  untested treatments. It might be all that your left with.

I've met Lord Saatchi on many occasions.  He writes the odd letter to me too.  They are beautifully hand written, thoughtful, considered and kind.  I doubt we share many political views; but we are linked by having lost the love of our lives and battled a system that we felt could have been a hell of a lot better.  Friends/fellow bereaved parents are sometimes quizzical/suspicious as to why a "multi-millionaire" is bothering himself with all of this.  Maybe he, like me, is working through his grief.  Or maybe, like me, he feels a duty to do his bit to right something that he feels is so wrong.

Personally I find him a remarkable man.  The way he has poured his time, energy and passion into this piece of legislation.  I believe he's kept going despite his grief; not because of it.  And I thank him for that.

Please help to keep this debate going; whether you are for or against.  It's an important one.

Monday, 25 August 2014

The illusion of infinite time

"The illusion of infinite time clouds our understanding of the preciousness of one another.  That value grows in death as we realise all that was lost".

On Grief and Grieving by Elisabeth Kubler-Ross and David Kessler

"Giddy up horsey.  Come on stop slacking.  Do as you're told!  You won't get anywhere in life if you don't learn to take orders."

Ah so she was listening to her Mother's wisdom after all.

Ten year old Chloe taking charge of her imaginary horses in the garden.  Pink coat with a white fur trim.  Blue/Green  eyes fixed in steely concentration (she'd need all that steeliness later). The dimple - right cheek.  Brown curls teased  into two, oh so sweet, bunches. Long slender limbs. A colt like joy of life; joy in the moment.  Felt like we were at the beginning of something.

Shafts of sunlight broke through the sturdy oak trees and fell on her perfect face.  I never imagined in my wildest dreams that our precious time together would be limited.

I stole some memories as I watched half  hidden by the curtain.  I don't think she saw me. It was a beautiful day.  I remember it well.  I wish I'd stayed there all day/all week/all year.  I wish that life had stopped forever that day.

"The illusion of infinite time clouds our understanding of the preciousness of one another....."

Fast forward four years.  Already a young woman; and what a beauty.  I was transfixed; others were too.  The power to grab centre stage, just by appearing.  So comfortable in her own skin; giddy with power.  That holiday in Corsica was perfect.  We were dumped early, of course (way too old and boring), as she took her place with the other teenagers.  Got drunk, kissed a boy who was  too old at 16 (confessed to that one later) and basked in the early summer of youth.

Another four years.  My husband and I stood ashen faced in our hallway.  With irritation I noticed how Ralph the dog had chewed the carpet on the bottom stair. The nonsense of every day life, eh.  As if it mattered.  The sweet, kind palliative care nurse looked away as she handed us a book.  "I never know when the time is right," she looked unsure.  I had the feeling she'd played this scene before.  In contrast we were blissfully unaware of where the storyline was going next."

"Oh thank you. Fantastic.  This will be really helpful"

What a ridiculous thing to say.  I took it breezily as if it were the latest best seller, but I glanced down at my trembling hand. At least my hand registered what was going on. The title evades me; the subject is etched deep into my soul.  How to help your child die - something like that.

I read the book.  I read many others too.  Cover to cover; night after night.  Apparently it's "good" to prepare when a love one is close to death.  I tried; I really did.  I read all the literature; listened to all the advice "Be honest".  "Never hide the truth".  "Allow the person a chance to talk about their fears".

However, do people really know what's best for us families.

I tried.  I really did.  But every fibre of my body screamed that they were all wrong.  So wrong.  I would not give up on my daughter.  Not now; not ever.  How dare they tell me to.  How dare they accept that she would die.  The bastards!!!!  Why weren't they fighting with me.  Shoulder to shoulder.  For God's sake she was 18.  This was so not right.

Hindsight is a wonderful thing; or so they say.  I've still no idea who was right.  Maybe non of us were. Maybe there was no "good" way to help an 18 year old girl die.  What I'm most glad of however is that I did it my way.  My family did it our way.  And ultimately I think that has to be the right way.

As time marches on and Chloe's life slips a little further into the past I feel the season on the brink of change and know that I too must move, flex and adapt just to survive.  Again I read widely; I read avidly; I read books on grief .Cover to cover. Night after night.   Once I was fixated on finding that message/those words of wisdom that will tell me in an nice orderly fashion how to live when your heart and soul have been pummelled to pieces.

Haven't found them yet.

So who am I do write this blog.  To set out to try and show the world that one can live with the deepest and bitterest of pains and still come out triumphant. That (I'm embarrassed to admit) was my intention.  I'm one of those annoying glass half full types.

  I have no answers.  And what I hate most of all is people telling me how to cope with all this.
  They don't know any better than me or you - not the doctors; not the nurses; not the self-help authors. None of them.

So I was about to write today to urge everybody/the whole world to cherish what you have now.  Hold your love ones so close/so tight and be greedy with those moments that can turn into memories.  To remind that we all have limited time; and we may not like what's round the next corner .... and then I thought who the hell am I to preach to anybody else.  My life/my heart's in pieces - and I certainly wouldn't listen to me...sometimes I can't even put one foot in front of the other.

And then I received another email from a bereaved parent and she thanked me for writing as it made her feel a tiny bit "less alone".  And my heart lifted and suddenly I knew exactly what I have to keep doing to keep going and it's very very simple.

In truth I write my blog as it helps me.  It's cathartic.  I do hope very much that it helps you too.  I have nothing of much importance to share.  No earth shattering insights.  For me the loss of my daughter feels like being run over by a ten tonne lorry and then lying there as the lorry reverses and runs over you again and again and again.  There is little respite from the pain.

But maybe sharing the truth is enough.  Maybe that helps us all feel a little less alone.

Wednesday, 23 July 2014

Too beautiful for earth ..

"An angel in the Book of Life wrote down my baby's birth.And whispered as she closed the book, "Too beautiful for earth."

Of course words written for the loss of a baby; but it speaks to me too.  

At the time this picture took my breath away.  How could I have produced something quite so perfect; quite so beautiful.  

Leafing through some words I find comfort in this: 

”We can’t know why the lily has so brief a time to bloom in the warmth of sunlight’s kiss upon its face before it folds into its fragrance and bids the world good night to rest its beauty in a gentler place. But we can know that nothing that is loved is ever lost and no one who has touched a heart can really pass away because some beauty lingers on in each memory of which they’ve been a part.” -Ellen Brenneman

Oh my girls.  My precious daughters.  How lucky I was to have two of my own and then to inherit another.  It's only now I really understand the gift I was given.

But still how bitter sweet this weekend was.   I had some of my most precious girls together. How I wish she was looking down at us and seeing that her heart beats in each and every one of us.  

My beautiful daughter Chloe.  

Yet we still live, we still love and life goes on.  There is still joy to be had and it is true that time does something magical.  Oh no it doesn't rob us of the pain.  The pain is too precious as it marks where the loss is. I won't allow it to take my pain away.   But it does soften the blow.  One seems to get used to the loss; as one would the loss of an arm or a leg.