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

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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.'

 

 

 

 

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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Dreams

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I dreamed about Juliette last night. When she first died I had, if not countless, at least a dozen of these dreams in the first few months. They were various raw longings to touch her, to smell her, anguished ‘what-ifs.’ Last night’s was not like that.

In the dream I walked into a café, and there was Juliette, queuing at the counter. She looked a little older than five, and her hair had grown to shoulder-length. She turned with the most beautiful smile, and I just ran to take her in my arms. Unanguished, just full of the familiar pleasure I have in hugging any of my children. Of course I’m crying at the thought now, but at the time it felt so ‘normal’ and just the loveliest thing.

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

Why am I running a marathon?

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The Finish…

I’m weeping again. While I was writing this post yesterday I googled pictures of the London Marathon, finding scores of images showing elite runners zipping over Tower Bridge and around Parliament Square. That long swing onto Birdcage Walk in front of Buckingham Palace and down the Mall is very familiar. I’ve seen it twice  and dreamed it dozens more, but it’s the look on ordinary runners’ faces as they approach the finish line that really hits me in the chest.

Not everyone runs with photographs or messages pinned to their shirts, but most of us non-elites have a story. It’s the weight, the importance of these stories at the toughest points of the marathon that can overwhelm you, and I know it’s not just me. I sobbed across the finish line in 2007, and a runner in a Cancer Reseach vest hugged me – you can do that with strangers at the end of 26 miles… I plucked at my Children with Leukaemia shirt and told him about Juliette. He cried, and told me about the daughter he too had lost.

Today I’m looking at lace minute race instructions… attaching the timing chip to my shoe and trying to remember different parts of the route to calm my nerves, but it’s that surge of joy seeing the finish line that keeps popping into my head. At that point during both previous marathons I was almost hallucinating with exhaustion. On Sunday, my family and various friends are coming to watch, but Elodie will be working. This morning she told me the real reason why she won’t be there.

Apparently I looked a wreck at the 25-mile point the last time she watched. “Mummy,’ she said, “I’ve had to see you suffer too much, mentally, but to see you suffering physically was unbearable.” I haven’t lived through what she has, so it hadn’t crossed my mind that she would find it hard. I’m proud of my sensible and sensitive oldest girl.

Despite knowing what’s coming, I’m incredibly excited about Sunday and as I’ve written before, it feels different this time. The first marathon I just wanted to finish, uncertain whether I could. With the second I wanted to prove I wasn’t a one hit wonder. But this time? I know I can finish a marathon and having run two, I have nothing to prove. Yes, I’m raising money for a fantastic charity that supports bereaved children – the motherless Prince William is the charity’s patron – and to date, I’ve raised more than £3000. But this marathon more than the others, is for me. I’m five years older but fitter than ever and the difference this time is in my head.

 
I have had to work at running long distance – I was never one of those long-limbed girls at the head of the cross country pack at school – I was the one trying to cheat and cut out some of the laps. I liked sprinting (it was over quicker) but I wasn’t fast. I used to run a mile or so along Crail beach when I was at St Andrews in a vain attempt to counteract the pack-a-day and tequila shot habit, but I’m no natural runner. So for me, even contemplating a distance of 26 miles is huge. I’ve written here and elsewhere how I used long distance running after losing Juliette as a punishment for me being alive. This time I run with gratitude that I am. That, and a dollop of pig-headed determination to finish in the fastest time I can.

 
So, I’m a bit emotional, but in the past few days I’ve had two taps on the shoulder from the past to heighten things. Katy and I are in contact. Elodie, unbeknownst to me, has been talking to her for a while. It’s not easy contemplating the way Katy has grown up leukaemia-free when Juliette didn’t, but she is a gorgeous and sensitive young woman and I’m glad to know her. Although she was only four when Juliette died, for nearly twelve years she and her family have remembered Juliette’s birthday, anniversaries and have marked them by releasing lanterns. I found contact with the family too difficult so I had no idea, and it’s incredibly moving that they should quietly remember my lovely daughter in this way.

 
The second whisper from the past (thanks to marathon fundraising) was a message from someone I haven’t spoken to in several years, who spoke about Juliette and my mother, Meg. Poppy has given me permission to quote her:

 
“I remember Juliette so well! I looked at the photographs you attached to your donation page including the hilarious one of Elodie and Juliette in (I’m guessing!) Meg’s shoes, and recognised Meg’s house and the kitchen and that pale blue aga and it took me back so quickly. Juliette was an incredibly sunny and warm little girl, and so remarkably brave through everything. I also remember how wonderfully close the children were to each other, and in particular that lovely and deep bond Elodie and Juliette shared. One memory I’ve never forgotten was sitting talking to your mama in the kitchen one day, and remarking on the fact that Juliette used to walk around on her tiptoes quite often, in an almost otherworldly way. Meg said to me that she’d noticed Juliette talking in a corner one day, and when she asked her who she was talking to, she said “the angels, can’t you see them?” For such a little girl – albeit with an enormous personality! – she had a profound impact on those around her, and I consider myself lucky to have known her.”

 
I’ll have that funny, bright, extraordinary little girl in my heart on Sunday, willing me on. I know I have readers from different parts of the world (thank you so much for that) and if you could please send me positive vibes for this Sunday too, it would mean the world to me.

The changed nature of happiness

2012-Feb 2014 1852As a child, even a life experience-short teenager I held to the belief that happiness was an attainable, permanent state. I thought a husband, some children and a house in the country would tick all the joy boxes and once ticked, I would float on my feel-good cloud forever. The fact that the precise moment I had all the above was one of the most miserable of my life is not ironic, it’s almost inevitable. Expecting these elements to be the magic wand was one of the reasons it was not.

As the grey scales fell from my post-natally depressed eyes, cautiously I found joy in my three children again. I believed I had survived the worst and for a while I relaxed. We risked trying for another baby. Surviving that dark period had made me stronger, and on learning that Juliette had leukaemia a year later, I believed we could survive that too.

When Juliette died at the end of nineteen months on treatment, it was a betrayal of my belief that life was essentially good and fair. I did not expect to be happy again. I did not even want to be happy. The fabric of happiness had been ripped apart, revealed to be false, and the vast ugliness of life was all too clear.

In my darkest moments, I wanted to be wherever Juliette was. But I had other children. I could not condemn them as I was condemned, so it was duty that got me out of bed in the morning and duty that made me put one foot in front of the other. Strange, how these insoluble moods become soluble. I didn’t notice how and when this happened.

A year after her sister died, Celeste was born. She smiled, laughed, and I could not help but respond. There were moments of a tainted, guilty happiness. I channelled this into becoming the ‘perfect’ mother, believing I alone could minimise the effect of Juliette’s loss on her siblings. I took up running, completing two marathons for Juliette with a fervour that bordered on self-punishment. More than a small part of me blamed the blood in my veins for continuing to pump when hers had stopped. My daughter had suffered so much worse than burning muscles and lungs, so I pushed myself harder. This, and suppressing grief while I ‘perfectly’ mothered four children, undid me. I wrote about it in my first posts here.

It’s been five years since then, and in three weeks time I will be running my third London marathon, but this time it feels different. During countless completed miles over the past three months, I’ve had time to wonder why. My conclusion is that it’s entirely down to my changed perception of happiness.

The past two years have been an odyssey. Next month marks a year in a job I could never have imagined myself doing in my ‘old’ life, and I am grateful beyond words to have found a role working with vulnerable and often challenging secondary school students. I still do creative writing work with prisoners as well.

I’ve learned the pursuit of perfection, like the pursuit of happiness, is something of a poisoned chalice. As far as perfection goes, good enough is, well, good enough. So I’m not the perfect mother, but I look at my survivors and I am proud of the people they are becoming. I relish the sound of Pierre’s voice from Italy, putting into words his new love for a language and country. After her two years of illness, I feel unadulterated joy watching Elodie dance in her pyjamas on a brief visit home from university. I listen with pride as Raphi describes match goals saved, and thrill at Celeste’s laughter as she thrashes me yet again at snooker. It’s not an accident the charity I’ve chosen to raise money for this time is an organisation that supports children who have been affected by loss. (There’s a link to my marathon page on the right).

Oh yes, and this time I am actually enjoying the marathon training. Working four days a week, I can’t manage the five weekly runs I did last time. Sometimes I only manage three, but it doesn’t matter. Tomorrow I’ll run 22 miles before winding down the training, and I know I’ve done enough. I may record a slower time in the end, but the significance that I can even think about running another marathon is immeasurable. At least it is to me. I know Juliette would be proud.

I make memories now, not tomorrow. Like Juliette years ago in our little London garden, I take time to watch petals fall. Happiness is a work in progress – a journey of steps, some of which have been harder to take than others and more often than not, I’ve had to lay parts of the road myself. More than anything, it is my road and my journey. It’s been a humbling lesson.

New year treasure

Treasure chestWe have in a corridor of our house something my grandmother used to call “a glory hole.” In hers, you would find fragile pieces of beautiful china (incomplete sets), broken pieces of favourite jewellery and pieces of fabric from dresses she wanted to remember. Essentially, it was a cupboard of things with which she could not bear to part. I don’t care that the term has acquired a different use because to me, it still conjures up the magic of my mother’s mother.

Anyway, our cupboard of the name is overflowing with what others might term ‘junk.’ It caught my eye today and I could not think of a good reason to avoid tackling it. So, I pulled out dusty ring binders of notes on massage from a course I completed as a distraction after Juliette died, (binned), VHS tapes of films we’ll no longer watch as well as those we’ve replaced on DVD (binned), photographs not yet in albums (kept), and endless lesson plans and materials from when I used to tutor French (tentatively kept). My tidying yielded no broken jewellery, no fabric scraps or china, but I did find a box.

The box has a window lid, into which at some point I must have put a poem that Juliette had written during her last term at school. Inside I rediscovered cards written by Juliette, a dragonfly brooch she made me during a hospital stay, a still sticky empty jar of homemade jam (she had picked the strawberries), one of her favourite books (We’re going on a Bear Hunt) and a lock of her hair. Nestled amongst these was a white stone with a hole in it that Juliette found on Southwold beach during her final week and that she had given me, ‘because it’s lucky, Mummy.’

I felt a jolt turning over a card Juliette had made for her class during that holiday – we never posted it because she was taken into hospital for the final time – because in my scribbled handwriting were numbers that must have been her last blood count. She’d had a routine blood test on the Monday. It was good. All her levels were fine. On Thursday of the same week, she died from an overwhelming infection.

It must be at least three years since I’ve opened the box. I remembered that I had these things, but I had forgotten I’d saved them like this. It was a poignant find for the first day of 2014 – the 12th we have entered without her – but a lovely one. She is never very far away from my thoughts and always inside me, but finding these tangible memories reminds me she was once real, solid and adorable. While holding on to everything my life is now, I still miss her so much.

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Numbers

prime-numbersI wonder if other parents who have lost children now have a thing about numbers?  I’ve never thought of myself as a superstitious person, but what I’m about to say would rather contradict that.

Five is my golden number. It’s the age that Juliette reached, and it’s also the number of babies I’ve given birth to. I attach it to anything I want to be lucky, yet it also feels a little clandestine. To people I’ve only just met I say, ‘I’ve had five children,’ which I hope I do not have to develop into, ‘but only four are living.’ I’ve never had more than four living children. Five is the number I get away with if I can.

26. Juliette was born on the 26th March. It feels like a lovely, auspicious combination of digits.

7 is the number of people in our family, only we look like a household of 6. For the first few years after Juliette died, I couldn’t send Christmas cards because, how could I sign them off and exclude Juliette? The first ones I managed to write included her name with ours. I know lots of bereaved parents do this, but for me it very soon felt mawkish. Now I sign any family cards or presents with a pattern of seven kisses. It probably looks childish, but I don’t care. I know Juliette is ‘there.’

18. This is the worst number. I try to avoid arranging anything important on the 18th of any month. Even hearing of an 18th birthday, because of the digits, makes me feel a little sick.

2002. This is an odd one, and was the first to make me wonder about my thoughts and behaviour. I quite often fill my car with £20 of diesel, but if I misjudge the pump and it stops at 20:02, I have to keep going until it reaches £30. Eleven years on, that’s a bit insane, isn’t it?