Reins of control

my beautiful

Juliette, a few days before we lost her

As parents, we control what happens to our children. We keep them warm and fed, sneak vitamins into their meals and catch them before they fall. We filter the cruelty of the world, because protecting them is what we do. The essential delusion to which most of us cling is that we can control what happens to them, just as we control what happens to us. The death of our child shatters that.

The most tormenting thought I had when this beautiful girl in the picture died was that I could have done something to stop it. I think for most of us who have lost a child this feeling is unavoidable, at least sometimes. It didn’t matter to me how many doctors insisted there was nothing I could have done differently, or the number of friends’ attempts to convince me that this torture was pointless, I agonised over the sequence leading to that awful day in search of the moment that would have changed everything.

It seems to me that to move on from this, you can choose one of two paths. You either ferment in the regret of your ‘mistakes,’ painfully alert to the fact that what happened could happen again (unless you prevent it), or you decide that you were, and continue to be powerless. Call me a godless, arrogant self-determinist, but I’ve always erred on the side of imagining that I am the primary agent in my life and those of my younger children. However, maintaining this notion of control following the loss of a child is a double-edged sword. Certainly the world feels a safer place if you can make choices to protect yourself and your children from its hostile vagaries but if those choices were always mine to make, how could I have let Juliette die? How much more appealing then to place your fate and theirs in the hands of unknown forces?

I’ve had a salient reminder recently of what being in control means to me, and at an especially critical time. Five weeks ago and seven miles into a long run, I broke my leg. OK. I have spent the last few years managing my life and with a small dose of luck, making things happen. I’ve found work that I truly love and shockingly, for which I seem to have an aptitude. At the risk of sounding self-congratulatory, I (previously a non-runner) have finished three marathons in respectable non-runner times, written two books and achieved a distinction in a Science degree with my flabby Arts brain. An effective puncture to any pride is that with my leg currently in a cast, even keeping myself clean is a challenge. I can’t carry a cup of tea between rooms or tidy up, let alone drive myself to work or to the university to complete the prison education research about which I’m passionate. As someone close to me observed, “If your life were a novel, this would be an obvious plot device.” The capable and in-control protagonist has been reminded she is not, after all, in control of all that much.IMG_20160410_150238

desk

Tidying? Not possible.

 

I don’t like it. I’m fairly sure I’m not on any OCD scale, but the need to feel in control (and the discomfort when I’m not) I recognise as far more of a driver (ha) than it ever was before Juliette died. Yet I’m painfully aware I need to work on this as one of the less healthy effects that losing Juliette has had on me, especially where the children are concerned. So, when a recently-returned-from-Ghana Elodie telephoned late at night from London to describe symptoms of suspected typhoid, I successfully quietened the voice that said, ‘Get dressed and drive 60 miles to take her to hospital now and she’ll live. Stay in bed, and she’ll die.’ Elodie is an adult, and I know I have to trust that I’ve helped her develop enough sense of her own to make good decisions most of the time. I aspire to be Khalil Gibran’s stable bow to my children’s living arrows, but too much of the time I’m still the anxious archer.

I’m resigned never to shake entirely the anxiety of not being in control and able to keep those I love safe. Unfortunately I am all too primed for the heart-stamping agony of losing people I care about and this places my emotions on a hair trigger, but knowing this about myself is part way to dealing with it. My conscious viewpoint (and perhaps a broken leg at this particular juncture was a useful reminder) is that life hands you a random script – mine just happened to include the death of my incredible daughter – and the limit of your control is how you play your part. At some point after Juliette died, I made the occasionally hard decision to live as intensely as she did because she no longer could. In the context of my current incapacity I must remind myself that raging against my foolishness (why was I admiring the sky rather than watching the uneven road?) and wallowing in self-pity at crutch-induced tendonitis, is no shortcut to happiness. Reading for my prison study, catching up on unfinished novels (and un-watched box sets), seeing my lovely friends and writing the odd blog post is, at a time when I have been chronically busy, a joy. And ‘only’ another five weeks without driving. Who knows? Any minute now I may be thanking my lucky stars.

 

'You're grounded.'

 

 

 

 

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Eighteen…edited.

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My beautiful, extraordinary little girl would be 18 today. It’s nearly 13 years since she left, and the family she knew has changed. This morning we all got ready for our days without a mention of Juliette. I hate that it implies we’ve left her behind, when in fact her short life infuses every single day of mine.

Tomorrow we watch Elodie perform in a dance show – we’ll stay the night close to her university and remember Juliette together on Saturday. Meanwhile it’s raining in Essex, and I have to find time to pick up a bunch of pink and purple flowers in between bouts of writing a long statistics report for my Psychology MSc. It’s surreal.

Why did she have to die? I know she would have made a fantastic, original, funny, bright and compassionate adult, but instead I have her spirit inside me, memories and a few old photos. On days like today that really doesn’t feel like enough.

EDIT

I must try to remember that the moments of self-indulgence I feel on particular days are not what defines the other 364, or whatever. So now, a bit of a sob and a shower later…it is absolutely right and entirely healthy that none of us mentioned Juliette’s birthday before leaving the house this morning. Our walls are lined with her drawings, and photographs of Juliette cover all surfaces. She has not diminished in our minds. It is simply that loving her then losing her, colours us almost unknowingly (in pink and purple, naturally) every day. I have bleated endlessly about my gratitude (in the absence of choice) for the way my life has changed thanks to my amazing daughter. I am braver, because she was brave. I love people more because she thought people were wonderful – despite evidence sometimes that they aren’t. I’ve stopped feeling sorry for myself because I’ve remembered she never did – and she suffered far more in five years than I ever have. My extraordinary, always-five-year-old Juliette.

With Grandpa

With Grandpa

Watching petals fall

Watching petals fall

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Singing in the bath...

Singing in the bath…

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Rainbow

Traveler Digital Camera

On this day twelve years ago, I woke up to a ‘normal’ day where Juliette was in hospital, like countless other mornings over the previous nineteen months of treatment. We had little warning of the nightmare that descended a few hours later.

Last week I saw an old friend who remembered an afternoon in a garden during that final summer. She described Juliette sitting on my lap playing with a tube of Smarties. Somehow the tube burst, sending a shower of sweets onto the lawn.

“Oh look, a rainbow!” M remembers me saying. She told me the other night that it had made such an impression on her, because of how relaxed a mother I seemed. I have no memory of the afternoon, nor of being anything than utterly uptight in the midst of Juliette’s treatment. I’ve looked back with regret at what I imagine to have been Juliette’s experience of my stress and unhappiness during her illness, so it’s an incredibly precious thing to have seen through another’s eyes a snapshot of Juliette’s contentment and the image of me encircling her with love.

It made me wonder whether friends and family around those of us who have lost children have any idea of how much of a gift it is to be handed these ‘forgotten’ memories, when we’ve been robbed of everything else. Thank you, my lovely friend.

Today I will be at work, while the rest of my family will be at home preparing for a barbecue to celebrate Celeste’s final day of primary school. It’s the end of an era for us and it was a deliberate choice to host a party today of all days, just as I have chosen to preoccupy myself with the routine of a job I love. Juliette arranged some thunder and lightning to start the day. I just hope she’s organised some sunshine, and perhaps even a rainbow, for later.

April 13th 2014

2014 marathon-1

Before… Crossing Tower Bridge at 13 miles

Well, that was quite hard. Once again I’ve learned you can train all you want, have a realistic target time in mind, and things can still not go quite right on marathon day. My heart sank at the heat of the sun as I walked from Greenwich station to the start, and it was only 8.30 a.m. Yes, It wasn’t as hot as 2007, but when you’ve done your long runs in the cold it was still darned uncomfortable in the upper teens.

Anyway, I began in high spirits – it’s impossible not to be excited by the music and noise of the crowds. At mile 2 I sang along to Robbie Williams ‘Angels’ with my fellow runners, and bounced along to ‘Come on Eileen’ at 4. I kept an eye on my watch and my mile times were roughly what I planned. It was lovely to see my cousin and his family at 5 miles and my own with Dani and children at 6, with other friends and their jelly babies at 12.

My leg cramp-avoidance strategy was not to drink any water, only sports drink, but at around 15 miles I worried I’d missed the Lucozade station. I was thirsty and desperate enough to pick up a discarded, sticky bottle – to the horror of a race official who almost slapped it out of my hand. He told me the station was half a mile ahead. Phew, and gaargh…What was I thinking?!’ A little further on, African drummers boomed in an underpass – I felt every beat in my chest which gave me a shot of energy.

My family was a welcome sight at 16 miles, but I was annoyed to find my wooded comfort break spot at 17 had been fenced off since 2009. Undeterred, I climbed the railings to avoid the portaloo queues. An absence of embarrassed dog walkers was an unessential bonus. At that point, I just couldn’t have cared less.

Around 18-19 miles I started getting tearful. My maths went to pot and at 19, I was thinking ‘I can’t run another 9 miles…’ My spirit a little broken, I began to walk and run. ‘Fast as you can to the traffic lights, then you can walk for a bit..’ I told myself. I counted to 100, repeatedly. The rhythm helped, and concentrating on what number came next helped block out the voice that was trying to say, ‘Stop! You bloody fool!’ Sometimes I said the odd numbers aloud, sometimes the even. Even in my long distance running delirium I knew I must have seemed a little mad.

I had a strange stomach pain around 22 miles (ruptured kidney/ovary/hernia, obviously – drama queen…moi?) and a fellow runner led me to the St John’s ambulance people who were all for sitting me down and wrapping me in a foil blanket. I lost a couple of minutes, but decided no pain was going to stop me from finishing. I didn’t spot my family at 22 miles but I did see another friend at 23.

Things were getting ugly. I thought I would throw up if I tried another jelly baby or slug of Lucozade, but the support from the crowds was incredible. It’s impossible to overstress the difference it makes when someone uses your name and calls out something encouraging. Still, it was a struggle in that heat, and with the stomach pain. I never got the abysmal leg and foot cramps of the previous two marathons (thank you, mega doses of calcium and a total water-drinking ban) but I’d used far too much energy acknowledging every single ‘Come on, Geves!’ and just staying cool.

I ran (in between sobs) past Buckingham Palace and down the Mall, but it was not a glorious finish. When I had my medal, I sat on the ground and cried (in between gulps of water and bites of muesli bar) while I contemplated the disappointment of 5 hours and 3 minutes.

Anyway, enough. I had a 25-minute window for the time I wanted/could expect. I couldn’t have trained or prepared better than I did so although it was the end of that window, it was at least IN the window, and I should be content with my time. Hey, it was a personal best by five minutes after all! And I’ve raised nearly £4000 for Child Bereavement UK, which brings our fundraising total since we lost Juliette to just over £25,000. My little girl had been with me every step, particularly over the tough final “9” miles. “Count, Mummy..” I heard her say.

I suppose it doesn’t matter in the grand scheme of things, but I know I can run 26 miles in under 5 hours… and I could JUST be recovered for the Halstead marathon in three weeks time…

2014 marathon-2             The medal

After…. a few yards from the finish              The medal, after a bowl of pasta and some prosecco

En coup de foudre

Lightning_strike_jan_2007We have something to celebrate. I hesitate now to take anything for granted but after three and a half months, I am starting to relax about Elodie and the condition she developed nearly three years ago.

M.E. (Chronic Fatigue Syndrome) is a pernicious illness that robs its victims of energy, fun and eventually of confidence. Elodie has always been a dancer, tapping out steps, weaving her arms through the air while talking, eating her breakfast or brushing her teeth. From a little girl, dance was her emotional language of choice.

M.E. rendered her mute.

In the grip of the disease, Elodie had no energy for dance classes. She had scant energy even to stand or walk. Her world shrank to the four walls of her bedroom as others failed to understand that no amount of rest would alleviate her tiredness. Her joints ached, her periods stopped, she suffered hot flushes and a racing heartbeat. She could not sleep, then would sleep for 16 hours, only to wake exhausted.

I tried to be supportive but a little voice whined, ‘We’ve already done this. We’ve been the mother of a sick child and it didn’t end well. This is not fair.’  I reasoned with myself – after all M.E. is not leukaemia –  but Elodie’s mood as her illness progressed worried me. In desperation sometimes I pushed her to do more than she was able, because I wanted the old Elodie back. I got cross, unreasonably frustrated with her for being ill. It was not a great time in any of our lives. And then something happened.

At the beginning of July, Elodie began the Lightning Process. The LP is is a three-day course, the details of which I choose to remain vague, because it worked.

Collecting her after the first day, we drive a pretty route home and at the top of a hill, Elodie asks me to stop the car.

‘Come on, let’s run!’

She outstrips me, but this amazes me slightly less than the fact that Elodie is no impulsive free spirit. She’s a planner, a meticulous planner and lover of order – in other words, not a person to run a crazy race like the one we’re now running. She reaches the bottom of the hill, turns and sticks out her tongue with a grin.

Over the next couple of days, her face regains colour. She holds herself differently, speaks with new energy. And she laughs. On the fourth day, I’m at work when she texts me a photo of herself back from a run – not a short, exhausted walk to the bus stop with the worry she would not manage the day, but a proper, mile-long run.

We wait for her A Level results and she tries not to worry that her illness during exams might have stopped her doing well enough for her chosen university. Our wifi is down on the morning results are released, so for the best phone signal we find the highest part of the village. We sit on a bench in the churchyard, metres from Juliette’s grave, when we learn that Elodie got the grades she needed.

A month before her course begins Elodie takes a physically demanding job in a restaurant five miles away, to which she sometimes has to cycle. Three weeks ago, she started university.

I’m crying as I type this, because it’s reminded me again of this miracle from the blue. It was truly a blot of lightning. I don’t care how it works – only that it has. Even if this is a temporary remission from symptoms, Elodie now knows she has it within her to be better, to be well, and that is very powerful.

Elodie deserves to be well. My daughter has suffered more than most 19-year olds should ever have to bear. She’s dancing again, and I don’t just mean classes. I mean the foot-stretching, arm-weaving, body-curving expression of all that is deep inside.

I am so proud of her beauty and strength.

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Lovely mothers

vodka1I am lucky enough to be a member of a closed online group of mothers (and fathers) who have lost children. It’s a place for bad language, irreverence, virtual drinking and fabulous mutual support. My only regret is that it wasn’t around in the lonely, early days after Juliette died. We bereaved parents need groups like these, because more than any other loss (yes, it is worse than any other) it’s rare to find a person who understands the myriad, ongoing resonances of losing a child, unless they too have suffered similarly. When Juliette died, I really thought I was going mad. I had no idea whether what I was feeling was normal because at first I knew no one. I haven’t hidden the fact that I had written about my experiences, but no one from the group had read my manuscript before this week. I wrote the book with other bereaved parents in mind, because when Juliette first died I remembered how desperate I was to see my experience reflected in the writing of others, and most of all I needed proof I could survive. In writing this book, I wanted to be honest about how hard it has been at times, but also offer the hope for my family’s future that I myself had craved in earlier days. Most of the parents in the group have lost their children more recently and I did not want to add to their pain, so it was with some trepidation that I asked whether any of them would like to read it. I’ve been overwhelmed and tearful at the feedback.  After the relief that (so far) my sometimes overly honest account has not hurt anyone, is that what I’ve written resonates with a group of people who although many of whom I have come to care about, I have never met in real life. These are some of the comments they’ve made so far, in private messages to me and on a discussion thread…

I’m on chapter 4 and it’s so beautifully written. I feel as though I know Juliette but the whole time I’m wishing for a different outcome…

I’m struggling through chapters eight and nine. It’s so familiar, especially coming home to everything looking the same. I’m glad you could write this down so eloquently…

I finished it this afternoon through tears and full on sobs. I can’t think of anything I’ve read about losing a child that I identified with as much as your experience. The parts about your feelings towards Elodie, Pierre and Raphael gave me goose bumps. I felt exactly the same way about Isla once Jude died. I cuddled her and smiled at her but it was just an act at first and often when I held her, I closed my eyes and imagined it was him. Thank you so much for making me feel less guilty about that. …I so wish my friends and family could read your words so that they could have half an idea of how I feel. It’s both beautiful and heartbreaking at the same time and I really feel as though I know Juliette. I’m so sorry that you no longer have your beautiful, brave girl with you but I can’t thank you enough for putting it all down and sharing it with us. Fiona

**

Wow what a read! The first half of the book I felt as if I were reading a fictional novel almost, getting to know Juliette and your family. I was interested although interested isn’t really the word I’m looking for, to read about how her diagnosis affected you all as a family and about her treatment- I had no real idea at all about what a child and their family go through when you have cancer, I think I just believed in the romantic ridiculous notion that a little bit of chemo and they would get better- I really was that stupid. I felt as if I was really falling in love with Juliette I was really hoping that she would be ok. But when she died I felt myself right there with you in the hospital, I felt rather than reading about Juliette and your family I was reading a parallel story of my own. The second part of the book was a lot harder for me to read than the first because that grief I completely understood and I felt that all over again. So often in fictional books when a character dies the death is almost romantic and brushed over very quickly, this tells it how it is. How it affects every moment and every breath in those first weeks, how as a mum to other children you have to get on and do certain things and how it affects deeply every single relationship in your life.

I was in tears from the first chapter but compelled to read on which is one of the reasons I was still awake at 3 this morning.  Sally

**

I fear I won’t sleep tonight, I can’t stop reading. It is very eloquently written.

I just finished, and of course, I had to google Elodie and her torch run. I love the Olympics. I named Bodie after an Olympic Gold Medalist. How awesome that she got to carry the torch. The book was so poignant. I knew what the outcome was going to be, but I kept hoping for Juliette to recover. There is a market for this book, this group is proof of that.  Amanda

**

Half way through chapter 2 and already gripped…it is heartbreakingly beautifully written…

 

Have just finished it Geves, what a wonderful tribute to your beautiful special Juliette and to you Steph and the family…Thank you for sharing your book with us.  Heather

 

**

Geves, I started reading last night. As a result I’m tired today because I struggled to put it down. You write incredibly well. Thank you for telling it how it is…

I’ve just finished it. It’s so beautifully written. Thank you for allowing me to know your amazing family. I’m so sorry Juliette is no longer with you.  Beverley

**

A harrowing read…but also amazing. Geves, I was so inspired by all you are doing now, especially your work in prisons. Anne

**

Have read first two chapters, cannot put it down.

Oh Geves I am reading this in tears most of the time, but (and I hope this does not offend) I did laugh out loud when you were describing the birthing pool chaos! I am in awe of how you managed to write this.  Eleanor

**

I’ve read it all today! Seth was a touch neglected and watched lots of Peppa Pig…

I loved reading about your life with Juliette, and getting to know her a bit better. She was Max’s age when she was diagnosed, so I recognise some of the traits and cute ways of pronouncing words…

I coped very similarly to you after he died. I drew no comfort from his brothers, they actually made me feel worse, and got pregnant very quickly after. I struggle day to day as well, and Elodie saying to you that she is the person she is today because of Juliette made me cry, I hope that Aaron can say the same. Elodie and Juliette sound very similar to Aaron and Max, you didn’t really get one without the other.

When writing about your reactions and the things people say to you, your change of friends, your change of personality, all resonate with me too, it sounds like I could have written it.

I think it is a beautiful book. You describe my life really….I think I will read it over and over and over.  Jo

 

I could not have wished for better reactions. Thank you, lovely mothers.