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.  

Sunday 6 July 2014

The second year is worse

My two beautiful babies and their Dad.  I've long since forgiven him for whatever it was I was angry about; don't really remember anyway and it didn't matter then and it certainly doesn't now.  But I can only thank him really for helping me produce these two beautiful human beings.  And he was/is Chloe's Dad and therefore can only be suffering too.

The one on the left has grown into a beautiful, brave and charming young woman who has blessed us further with another two beautiful human beings.  Our Nahla Chloe and Roman Emre.  The three reasons I still want to wake up every morning; and my husband ...... and I'm very fond of the dog too.  And then a posse of really really special friends..... Oh Gawd when I think of it lots of things really.

But that little one on the right she's not here any more; and I still, a year and a half after her death, cannot quite believe it.  The scars may be healing over; but beneath them remain deep bloody wounds of sheer and utter pain.  She always reminded me of Tweety Pie in this picture, you know the cartoon character?  Huge blue eyes, a little rosebud mouth and cutest little face.  She too blossomed into this stunning young woman; all long limbs and tumbling hair ..... and then.  Well the rest is the beginning of the end.

  The cancer story that should never have been.

And my dear readers I have to admit, extremely sadly, that the second year of grief is worse than the first. And I did promise you I'd stay positive and find meaning.  And I will.  But just now I need to face the truth that grief and loss at this level of intensity is as near as it gets to unbearable suffering.  There I've said it and any parent who has lost a child will understand that I'm sure.

We are of course built to survive us humans; and I think the only way we can do this is to go a little mad after the greatest loss of all.  Instinctively, as parents as human beings, we know that the bitterest of all losses is that of a child. So how can we possibly take in the enormity of it all first of all.

No. First the body/the mind, maybe some kind of God, protects us by plunging us into shock.  The world seems to move in slow motion as we stagger through days and take medication to sleep at night.  For me there was this kind of fuzzy feeling that kind of kept the pain at bay.  I truly didn't know how I was going to go on. But I did; and I do.

But the second year is the real challenge.  The shock subsides and folds back to reveal the real loss and the real agonising pain of the most terrible terrible grief.  The madness kind of continues as sometimes I wake and can't remember what has happened; what have I done with my baby; where have they put her?
And once again the terrible realisation that she's gone and whatever I do, wherever I go I will never ever see her again in this life.

The memories are still as vivid as ever; I fear so much the day when they will fade.  People say they do.  But I can easily recapture her slender fingers; one of the daft faces she would make at me; the way she's slide her arms around me in a "Mum you are really annoying, but I do kind of love you" kind of way.  Strangely for a super cool 17 year old, she would sometimes hold my hand in the street.  Can't think about that one without tearing up.  A felt a million dollars with that one.  At other times she would call me, seemingly furious that I wasn't home to cook her tea, but secretly I think she wanted to be with me and under all the bravado of those turbulent teenage years burned a pure and beautiful love for me and our little family.  Maybe we were all just so lucky to have that kind of love.  And maybe that was enough.

And, like my fellow bereaved, we paint on smiles, we go to parties, the cinema, all those normal things and people say "how are you doing".  And we say "oh you know.  It's hard at times; but we're getting on." And of course what we really want to say is "Actually I feel like ripping every shred of my skin off; because just maybe that level of physical pain would take my mind of the emotional agony that I'm trying to live with - just for a second.  And if you just say one more thing to me I will have to break down.  And you know what; I may never ever stop crying.  In fact I may cry so much, that I drown us both in the tears I have here in my heart. And then where would we be?"

But us bereaved we also love kindness as it's a kind of ointment on the soul.  And every time somebody is trying to be genuinely kind - and you will know the ones - there is a tiny flicker of hope and connection, And kindness comes in the weirdest places.  The kids are brilliant; Chloe's friends especially.  They run after in the street to hug me and girls I've never met before regularly regale me of just how funny and witty my daughter was and how much they miss her.  It's straight; honest and God how I love young people.   And then there was a grumpy barrister who I tried not to sit next to at dinner "Jesus I really can't do him tonight".  But, I was so wrong; he was exactly what I needed. Brash, brutal, to the point.  He broke down in tears, the pain etched all over his face when I told him.  His was a quite lovely, honest kind of comfort and I really liked it.

Sorry if I sound a little self absorbed.  I feel one needs to close down a little at this stage and really drown in the grief.  Splash around in it; get yourself completely covered and stay there for as long as you want to. To let it wash over you with all its power; because only when it's finished with you can you ever dream of moving on again.

So there's that little grain of hope again and a kind of message I feel very strongly.  A cliche I know; but the only way out into any kind of sunlit upland (maybe that's too strong an image) is through the very centre of this.  Surely one can only come out a little braver, a little stronger, and a little kinder.

Tomorrow I'm speaking at the International Teenage Cancer Trust on clinical trials.  My message will be simple: this shouldn't  happened for a million different reasons ; lets work together to make sure it stops happening to other families.

I would have liked a different life to this; and now I want other families not to walk my path.

Back on the campaign trial.

God - or whoever else you like - bless you all xxxxxx