Day Five

It's been a busy day! I had a meeting at William's school to review how he is coping and progressing there and what secondary school he should go to, if he goes to secondary school at all, given that this last year in primary is likely to be so disrupted by his transplant. It's so so hard for me to think about other big and life making and changing things at the moment. All I can see and cope with is getting through our time on the waiting list, the operation and recovery. I did find the time and space to write a draft poem and a little piece that may or may not make it into the final version of the novel. I hope you enjoy them.

1.  

I love list poems. I love reading them, writing them and doing workshops on them. This is a draft version written on a busy day. It will be revisited. I am waiting to come back to this and develop it...

I am waiting 

I’m waiting for the phone to ring
I’m waiting for it to stop raining
I’m waiting for the smell of my first grandchild as I lift her from the bath and pat her dry
I’m waiting for my bread dough to rise
I’m waiting for blood test results
I’m waiting to hear the layers of sound that make a symphony zing
I’m waiting to be able to take a deep breath
I’m waiting to look out at the ocean whilst eating fish and chips on Babbacombe Downs
I’m waiting to board a plane to anywhere
I’m waiting for the end of spider season
I’m waiting for the BBC to show an intriguing and absorbing new drama series
I’m waiting for Father Christmas to fill stockings left by children over 40
I’m waiting for snow to close the schools and the transport systems allowing us to stay home, sieged and cosy
I’m waiting for that snuggly, out shaped jumper, impregnated in my perfume, to dry
I’m waiting for my bread to bake
I’m waiting to spend day in a hotel room, doing nothing but snoozing, eating and making love
I’m waiting to go back to Glastonbury
I’m waiting to go back to the Glastonbury Festival
I’m waiting to spend the night in a tent with my family
I’m waiting to climb a mountain - with ropes
I’m waiting to finish writing my novel
I’m waiting to find an agent who loves my words
I’m waiting for time to read all the books on my book shelf
I’m waiting to become a proper grown up
I’m waiting to pay off my mortgage
I’m waiting to pay off my debts
I’m waiting to get unstuck
I’m waiting for a home free of cracked plaster,  peeled paint and clutter
I’m waiting for a skip
I’m waiting for Kate Bush to play more concerts
I’m waiting for The Cure to play in London
I’m waiting to spend time with my muse
I’m waiting for spiritual enlightenment
I’m waiting for the biggest adventure of my life
I’m waiting for a gift of life

I am waiting
I will be waiting for as long as there is something to be waiting for

2. A passage that may make it in some form or other into 'Something Precious Inside' 

This passage is inspired by a real moment in my life, in the year before William's first transplant when we lived for months on end on the gastro unit at Chelsea and Westminster Hospital.

I went for a walk this evening, when Chloe had fallen asleep. I needed fresh air,  to clear my head. I walked for hours, increasing the diameter of my circles around the hospital, relaxing and trusting myself to be that little bit further away from the ward and my daughter with each circuit. Eventually I ended up down by the river. I walked up onto the bride, watching the light dance on the peaks as the current flowed below us. Inhaling the indescribable smell of  an agitated, inner city waterway. Everything around me was reduced to silhouette in the darkness. Runners along the towpath, trees, empty buildings. Against the Anything lit dazzled against the blackness.  The cars and buses, taking people home to warm cosy houses and people, families, loved ones - they were in the bright. Those of us alone outside shared the darkness.

I just stood on the bridge for ages, imagining myself carrying on to the other side of The Thames, walking to the nearest Tube Station and going home. Home to where Chloe would be snuggled up under her Elsa duvet, sleeping soundly. I’d have to take a look at her, kiss her forehead but ever so gently. I wouldn’t want to wake her and have her tired for school in the morning. Then I’d pour a glass of wine from the box on the kitchen windowsill and settle myself on the settee with a book. ‘Chocolat’ was already there, lying sprawled out in waiting, half read on the side table. It would take me less than an hour to be there. Instead, I turned left and headed back to the ward.

On the way back, looked into the houses I passed. Some were hiding in the dark, cold and empty but most were lit. Some of the basement flats had no curtains, allowing me to see right into their worlds. Most of the windows were to kitchens. Big, bright kitchens with solid, heavy wooden tables in the centre. Some of the families were gathered around, eating hone cooked meals or chatting over mugs of drink. Oh how I envied those families. I even envied the women I could see washing up Le Creuset casserole dishes, wine glasses and earthen wear plates at their sinks behind the window. On the other side of the windows was a cosy world full of comfort and love. Never in my life had I felt so alone, so left out. And so cold. Not just from the wind on the bridge but the kind of cold that chills you to the core, that chills your very spirit. The kind of cold you can only feel when you are left outside.
I hurried quickened my step back to the hospital, suddenly needing, and I mean,  really needing the security of being there. I needed to be back in the light and among what had become familiar. The world outside it suddenly felt so vast and open, and so cold. I didn’t seem to have a place in it anymore.


3.  This poem is a bit of a cheat in that I wrote it some time ago. Nearly everything I share here was written on the day of posting but occasionally I need to add something that already exists. We have opened what is called an 'Advanced Care Plan' It is a plan of how we would like the end of William's life to be, should we reach a point when it seems we are approaching it soon.  We are not at the moment. We all believe and hope that he will get his transplant call on time and do brilliantly! A lot of doctors don't like Advanced Care Plans because it means accepting there is a time to stop and let be. I think there is a such a thing as a good death and it is the last thing you can do for a child or loved one. This poem is kind of my idea,  or metaphor at least of just that.

The final itinerary 

On your last day
we’ll go to Brighton.

We’ll eat chips on the beach.
But you’ll lick off the salt
and feed the rest to the gulls
strutting around us, making you giggle.

We’ll throw pebbles into the sea.
They'll land with a plonk
and you’ll laugh some more.

Then we’ll roll our clothes
and paddle up to our knees.
A wave will knock you down,
startling you and making you gasp.
But you’ll soon find it hilarious
and chuckle again.

I will notice you are cold,
a little blue around your lips.
So I’ll wrap you in a towel
and cuddle you cosy.

We'll run along the stones, trying to fly a kite.
You’ll laugh when it doesn’t leave the ground.
But I’ll see that you are tiring.
And it’s time to go.

I’ll hold you tightly and whisper in your ear,
making sure you know how much I love you.
Then, I’ll carry you to the station.
Your train will be waiting.

I’ll lie you down on a wooden bed.
And tuck you up in a patchwork quilt of memories.
I’ll lie with you and hold you,
reading stories of heroes and adventures
until you fall asleep.

Then the train will toot.
I’ll kiss you one more time
before I climb off onto the platform.

And as you steam away, I’ll wave my spotty hankie
and remember how much fun it was
when you came to stay with me.

And as the train chugs over the horizon,
I’ll hear echoes of your laughter
and I’ll know that you are home.





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