Friday 26 July 2013

Altered perspectives

I'm doing a lot of reflecting just now.   I like reaching out and communicating; I hope it helps someone somewhere also struggling with grief - or just other crap that life tends to chuck at us.  When people reach out to me it makes my pain a little softer.  When I see tears in a friend's eyes when they speak about Chloe, I feel a little less isolated.  Reaching out is good IMHO.

I guess it's a given that this kind of loss is agonising.  I love these words by Emily Dickinson - it seems to sum up my loss quite well.

"I measure every grief I meet
With analytic eyes;
I wonder if it weighs like mine,
Or has an easier size.

I wonder if it hurts to live,
Or if they have to try,
And whether, could they choose between,
They would not rather die.

The brutal fact is after this kind of loss death holds no fear.   But, on balance, I think that this is rather a good thing.  It allows freedom and  enables me to connect with other bereaved people.  I hear time and again of how isolated people feel in grief, of the hurt caused when somebody crosses the road to avoid a grieving person (let alone somebody who's lost a child) - it's like grieving people are a race apart.  As if their pain and misery is somehow contagious.  Reminds me of certain attitudes to older people - again as if they were a race apart rather than just us  - only a few years down the line.  We need to remember we are all human and if we don't get old we die. Simple really.

Just a warning, if anybody I know tries to avoid me I'm going to chase you down the street! (joking, of course:) )

Anyway this is a long winded way of saying there is a kind of positive feeling that emerges after facing the "ultimate tragedy" In the words of Ronald J. Knapp from "Beyond Endurance"

Those parents who have managed to recover some meaning tend to develop a sense of omnipotence and invulnerability relative to life's other hardships.  They come to feel that there are simply no obstacles that they cannot overcome.  They believe that they have met the ultimate challenge to their own survival and they have conquered it.  In the process of rebuilding, it tends to become obvious that the survivor has indeed encountered the ultimate tragedy and survived.

I certainly feel toughened, more resilient and in some ways totally fearless (I hope not reckless).  I've had my heart ripped out that's for sure; but I'm still here and life seems entirely different.  I wish with every fibre of my body that it wasn't so; but it is and while I'm still here I have to make my life count.  After all when I do join Chloe, wherever she is, how am I going to answer "what did you do afterwards Mum?".  I want her to be proud of me, for her to know that her death was so very significant that it changed me in the most fundamental way.  And the truth is it has.

Last week I spoke at the House of Commons, mainly about the numerous injustices of the treatment of young people with cancer,  and somebody asked me "are you scared?" Scared of speaking? Scared of telling people that is is an utter outrage that young people's lives aren't being prioritised in the healthcare lottery? Scared of telling the truth to people who should know better? Are you joking?  Scared is sitting in a hospital consultant's room and the doctor telling you that you are about to loose one of your main reasons for being.  That's scared.  In comparison everything else pales into insignificance.

So my life without fear beckons.  And I have a flicker of excitement when I think of how things can be when you don't sweat the small stuff.  If only it hadn't have taken the death of my child to allow this freedom.  What a huge waste of time those silly worries were.

Hence the quote I'm looking forward to going to places I've never been before - and hopefully doing some good along the way.

Tuesday 23 July 2013

Beauty and hope

I found beauty today.  For the first time really since my daughter died.  (The world seems hideously ugly after such a brutal loss).  But today there it was.  Plain to see.  Pure and simple beauty.

There it was.  The most perfect pudgy skin, huge saucer like eyes tipped with thick pitch black eyelashes. Oh the eyelashes - so familiar.  So like Chloe's.   And the little grin; revealing four or five tiny stump like teeth.  There he stands totally oblivious that he has turned some light back on in my world.

Oh our little Roman, my one year old grandson, you really are the most special child.

 I take time to watch Roman.  He enthrals me in a whole new way.  He's just a miracle - perfect.  He pulled all my pots and pans out of my cupboards today; breaking two of my favourites.  Did I care? Heck no!  He threw my fire logs on my new rug.  So what!  He threw all my new Christian Dior skincare in the bath - admittedly that hurt a little - but I got over it.  Finally  I  have leant not to sweat the small stuff.  I get it - there isn't enough time.

I have a whole new little person to love with every fibre of my body.  Just like I loved Chloe.  Just like I love Hannah.  Being a grandparent really is all it's cracked up to be.  It's the best!

You see I've found a tiny  glint of light through my deep dark misery.  After such loss one can, if one wants to, look at things with new eyes - I think.  I'm so aware of death; that sometimes it makes life shine a little brighter.  Before I took my two perfect daughters for granted; now I marvel, really marvel, at anything that has the power to push through the grief.  Sometimes, not often, things can look more glorious than they ever did before.

Chloe's been dead for five months now.  The grief started way before she died.  Maybe it even started when she was diagnosed three years ago.  Strangely the five months feel forever; and the three years  like it went in a flash. The anticipation of her death meant we lived so intensely those three years - in some ways I lived the best way I ever have?  Maybe I was the happiest I've ever been?  She really was the most wonderful daughter and she was my friend. We had such lovely times together.

  The grief feels a different shape now - still solid and heavy but the jagged edges are softening ever so slightly.   I miss her much more and one of my biggest fears is that the memory of her is pulling away, like a little rowing boat drifting off into the distance.  That upsets me more than anything.  If only somebody would give her back to me.   Maybe it's the pain that keeps it close. If that's the case I'll have the pain back.  But I guess it must be our need to survive - the very sharpest edges of the pain are starting to soften just a little.  Life is a little more tolerable - and interspersed by a few (not many) of moments that are really worth living.

I know there are some other bereaved people who read my blog.  I don't dare to ever offer advice; I hate it when people tell me how I feel or how I will feel.  To me grief is so personal and is between you and the person you've lost - a new kind of relationship.   I loved my child so entirely that my grief is very simple - other types of grief can be far more complex and  in my experience  not always less painful.  All I know about grief is what I've felt and what I continue to feel.  I'm one of those irritating "glass half full" people - so I knew I'd want to focus on trying to find the hope.  And I just want to share my experience.  I've suffered the worst of losses and been right down into the pit of despair.  I couldn't see a way out; many times I didn't want a way out.

But just now - five months in - there are more little shoots of hope and a few of those wonderful moments.  I never believed that would ever happen  I know I still love with all my heart; and I know I am loved by my dear family and friends.  I will live with the terrible emotional disabilities caused by my "tsunami of the soul"; but somehow I can see a little ray of life.  I will always be deeply deeply wounded but I feel I will shape out some kind of life now.

Thank you for reading xx

Friday 12 July 2013

A legacy for Chloe

This is the most important piece of work I've ever done in my life.  We need better treatments for people with rarer illnesses and better access to clinical trials.  We are looking at ways that all our friends and all of Chloe's friends can help with this piece of work.

Huge thanks to Paul Burstow MP who arranged this meeting.  A really decent man!! Gives me faith in politicians again.  And thanks yet again to the tireless work that the fantastic Teenage Cancer Trust continues to do in Chloe's name.

IMHO the life of a child or young person is worth more than anything else in the World.  We need to prioritise treatment for young people with serious illnesses.  Unbelievably this doesn't seem to happen at the moment.

I'll keep you posted.