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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Resonance

ripples-in-waterI haven’t written here for a long time, but there are some good reasons for that. First, the sad.

At the end of August, Steph’s lovely father died. I tell people his death was ‘out of the blue’ because it was. Yet he was 86 and I hear how absurd our shock sounds.

My father-in-law was a vibrant, vital force, a man of quirks and favourite anecdotes with a hearty laugh that positively brimmed with love for his family. I’ve felt selfish in grieving for him – he wasn’t my father – but I loved him and expected him to be in all of our lives for many more years. I feel we’ve been robbed.

That all close deaths resonate and evoke memories of hers seems to be part of the legacy of losing Juliette. I hate it. I reason with myself, but it’s as though that chasm of grief spies a chink of weakness at the surface and exploits the chance to pour forth the pain I’ve taught myself not to feel. I miss my father-in-law. Knowing him enriched my life. I can’t bear to think of Steph motherless, and now fatherless, but the way I have felt is not in proportion. I’m frustrated to feel so in the grip of emotions that aren’t entirely logical.

Listen to me. When, exactly, are emotions logical?  Is it logical to love with an intensity that almost hurts, a tiny, screaming dictator, who vetoes sleep and causes you physical pain? Actually, Juliette was a fabulous baby, an amazing little girl. She didn’t scream, probably because she got what she wanted. Juliette twinkled with a wisdom that made everyone who met her want her to be happy. No fool, my daughter.

Losing her changed other aspects of me. In the early years of disordered grief, this knowledge of how fragile life can be, made me feel reckless at times. A sort of ‘what’s the point? Everything could be over tomorrow,’ never filled me, but lurked at the edge of decisions I made, still make. We have only one life to live and no guaranteed tariff. Juliette lived for each day. She seized every opportunity for love, for fun and to try something new. I can’t bear how this sentiment sounds clichéd but as I have learned, so many clichés around death appear true. I feel an obligation to live because Juliette could not.

Had she not died, I would never have started to write or rather, I would not have had the courage to share what I wrote. Telling my daughter’s story was imperative and in this context, what others thought of my writing was meaningless. Nor would I have had the self-belief and determination to run a marathon – I’m no athlete but I’ve just signed up for my third London next year. And it’s certain I would never have taken myself into a men’s prison to do creative writing classes. I am not, or at least never used to be that woman who believed she had something to offer. Rather the reverse. Now I have work in a school that rewards me in ways I could never have imagined. I thank Juliette for all this. It took me years to stop feeling angry but now, living intensely is a way for me to express my gratitude that she chose me to be her Mummy. I was blessed. I am blessed.

Being happy

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This photograph resurfaced recently. I don’t remember exactly when it was taken, but Elodie’s T-shirt suggests it was after one of her Royal Academy of Dance summer schools. We are, from the clue of a green chair, in a Battersea Italian restaurant that was our favourite when we lived in London. We would take Elodie and Juliette there as babies, because it was at the end of our street and the waiters never minded a bowl of pasta upended by a small, chubby hand.

I guess we had taken Elodie there for old times’ sake. She looks ten at the most here, which means it was only around two years after Juliette had died. What struck me seeing this photograph again is the look on our faces.

Pure happiness.

I have no idea what is making us laugh, but Steph’s taking the picture, so that may be a clue. I look as though I haven’t slept for a week, but it’s extraordinarily reassuring and almost a shock to see us look happy, at a time that I remember as being so hard. It makes me wonder at the faultiness of memory, or my memory at least. Anyway, in this instance I’m glad for it.

I’ve just had a week’s break from work and the children have been on holiday, so we joined up with my sister, Dani, and her family on a camping trip to the Peak district. It rained as we put our tents up and mustered supper for the ten of us. It went on raining as the children played, and as Dani and I started on the Whisky Macs and the men on Jack Daniels, graduating to Baileys by way of a nice Shiraz.

It was still raining through our now compromised waterproofs the following morning as Steph and I trudged the ten minutes back from the washing up station, with sore heads and dripping pans and plates. Just as I was feeling everything was a bit grim, Steph turned to me gesturing gallically and with genuine pleasure at the rolling green hills, the grazing sheep and our playing children, filthy and laughing in the crook of the river, and asked, ‘What more could you want?’ Moments like these ratchet up my love for him. His mood is the life raft into which I can leap when mine more inevitably, sinks.

When Juliette was ill, Steph’s optimism was watertight. Sometimes I longed to see it sag a little when I languished in the water, so I was not so alone with my fears. It never did. His faith in his daughter’s recovery was unsinkable, right up until she left us.

At other times, I see Steph as the pole of a Swingball set. I’m just the bright bit of fluff on the end of some string weaving back and forth, then up and down, as life does the hitting. I’m grateful for the way he is. If he were different, I don’t believe our marriage would have survived. So far, we are beating the odds for parents like us and I try not to take that for granted.

Anyway, Elodie, who never joins us camping – (“Why would you want to be outside, cold, wet and uncomfortable when you could be inside and warm?”) – has otherwise inherited her father’s bright outlook on life. She encourages our habit of taking it in turns at supper to describe, ‘the best moment of today.’ After we’d washed the mud off our skin and shampooed the smoke from our hair she asked us each about our favourite thing from the camping trip. That moment walking with Steph was mine, amongst laughing with the sister I adore and noticing how our children bore discomfort with good humour because they were with their beloved cousins. More stained glass moments for my memory bank. I just have to keep looking for them.

Trust

rope bridgeTrust is a precious state. It’s the more credulous cousin of hope, but where breaking hope takes force, determination and time, trust can be destroyed in an instant.

Maintaining trust takes work. When leukaemia swept into our lives uninvited, I was a homeopathic pill-popping, vaccine-foreswearing, spiritual healing aficionado. Informed without ceremony that our perfect three-year-old had cancer of the blood, Steph and I were asked to trust strangers to drug her, cut her open, insert tubes, needles and poison as the best way of keeping her alive. Our trust endured as the medicine made her bald, hollowed her eyes, bloated her flesh and made her sick.

We believed the doctors who told us Juliette would be OK and we trusted them as she failed to fight even a cold without hospitalisation. It was one of these viruses that killed her. Chemotherapy kept her with us for nineteen months but ultimately, it stole her too. But we had no conscionable alternative, and to imagine we were wrong to put our faith in her treatment would make us complicit. Impossible to contemplate.

I have often thought that losing Juliette should have made me tough, suspicious and less inclined to trust. As an inoculation against further pain, surely the clever person would always imagine the worst?

I’ve had more than one incidence of broken trust recently. It hurts. In that state I blame myself for my blind credulity, and long to be a person with a gloomier (more realistic?) view of people and situations. This does not seem to be one of the lessons I’ve learned from my daughter’s death, however.

I would hate to be cynical, but I do wish sometimes that I were better able to protect myself from the pain of broken trust. I always imagine the best. I assume that others will behave honourably in response to my faith in them, and I suppose that’s because I’m hopeful. I believe in the innate goodness of people and, strange to say, in the beauty and richness of life. If that makes me stupid, well, pass the dunce’s cap.

 

Ghosts walking

floating-feather-356388During the early days of crippling mental disorder after Juliette died, my mind flitted about like a mad child, chucking up thoughts that were not born of reason or rational process. Juliette was elsewhere. I had to reach her and my messed up brain had me make lists of what I could offer that would reverse the shocking error of her absence.

I begged nameless powers to take my limbs, my eyes and my life. I longed for the chance to eat putrefied road kill, excrement, anything to buy her back. In those moments, it was convenient to forget how I had watched as doctors failed to resuscitate my daughter, that I had held her little body as it grew cold, and seen her buried. The madness of fantasy seduced me. It drew me from the brink and plunge of knowing I would never see her again.

When after weeks my Faustian pacts came to naught, I grasped at comfort by imagining ways in which my loss could have been worse. Juliette died, as far as I knew, without pain. Steph and I were with her and she did not have to bear her last minutes alone. No one took her life, or hurt her. It did not change the fact of her death, but I looked around at the losses of other parents and it made me feel mine was slightly less terrible.

It sounds a cruel way to draw comfort, but I had to survive. I thought of a mother who was robbed even of her daughter’s body to bury, and denied the knowledge of her final hours. I wondered how she could grieve in this tortuous state of suspense, while any hope remained that her child might still be alive.

When Juliette died, Madeleine McCann was still safe with her parents, but my mind kept returning to the family of Ben Needham, the little boy who vanished on a Greek Island. I wondered whether years on, his parents had been able to accept he was probably dead, and if that acceptance brought peace, or only guilt and more suffering. I looked at Juliette’s death in the grip of leukaemia and became the mother who was grateful to have held her child’s lifeless body.

Last week, when Amanda Berry broke out of her ten-year incarceration with two other women all believed to have been dead, my first thought was not jubilation. Instead, I thought about the hurt to my more recently bereaved friends who like I once did would have imagined for a brief but agonising instant that their children might also return, before remembering it was impossible.

It’s a good news story. These daughters and sisters have returned to their families after a decade of grief, but my thoughts are with parents whose children are gone forever. In my thoughts I’m afraid there’s also a little self pity. Amanda Berry disappeared nine months after we lost Juliette. Of course, I would not wish Juliette to have endured what these women have, but a ghost of my mad brain whispers new pacts, and wonders what I would not give even now to hold a sixteen-year-old Juliette in my arms.

New treasure

wpid-20130408_214454.jpgEaster at the parents, and our mother’s threat to empty drawers full of our old exerise books and letters, drove me and my sister Dani to spend an evening sorting. We found long-forgotten photographs too, and some of these were of Juliette.

Gorgeous, smiley girl.

wpid-20130408_214514.jpg Dani’s wedding

wpid-20130408_214601.jpgPlaying hospitals.

wpid-20130408_214415.jpg Happy, hairless days.

Bumps and tears

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After I dropped Celeste at school yesterday, I took my usual route home round the fields with the dogs and met a heavily pregnant lady walking the other way. We chatted about overdue prenancies then parted, at which point I burst into tears. I couldn’t make sense of it until I realised that sixteen years ago, that was me. Juliette had been due the same day.

It still seems to happen to me, even after all this time. In the run up to birthdays and anniversaries something innocuous will trigger an uprush of emotion, and yet I’m not actually focussing on what time of year it is. It’s a funny thing, the subconscious.

There were tears again this morning. Steph’s been away in Germany for three days, and I was just so happy to wake up beside him. I know it’s soppy, and not the way I usually am, but I guess the self-protective layers are just a little thinner sometimes.

I have other reasons to be emotional at the moment. On Tuesday, Juliette’s birthday, I will be going to meet people connected with the new job I start properly after Easter. On the 26th March last year I spent the day cover teaching at our local prison for the first time. I had an exhilerating twelve months but sadly, the prison is now closing. This new job is the work I’ve dreamed of doing and I feel incredibly lucky, but a little scared too.

I’m trying to find it symbolic that these exciting first steps seem to happen on Juliette’s birthday. Juliette wasn’t afraid of anything. Lots of things frighten me, but I think of Juliette and her fearlessness, and have no more excuses.

How I live now

You're alive

I’ve been giving more thought than usual to how losing Juliette has changed the way I live. Writing Watching Petals Fall has made me examine the far-reaching effects her life and death have had on me , and I’ve started to wonder whether other bereaved parents feel like I do.

Juliette , more than any of my five children lived her life intensely. Every day she was well, she wanted to ‘do something exciting’ and sometimes, frankly, it was hard to keep up with her. Of course, I can say this with hindsight, but I think there was a part of her that knew she had to experience everything, and quickly. She went for it.

In our last week together, we took the children crabbing. Scary little beasts, crabs, and both Steph and I kept them at arm’s length – from line, to net, to bucket and then back into the sea. Juliette spotted some teenage boys handling their crabs and asked if we would help her do the same. We dismissed it as ‘a bad idea’ but the next thing we knew, Juliette had carefully picked up a nipping monster from her bucket and stood, grinning for a photograph.

That she picked up a crab when her parents were too scared, really sums Juliette up. She was brave, while we were afraid. Since she died, I often think of her crab as well as the other ways Juliette was fearless.  She would hold out her hand for the big, fat needle to be inserted into her beautiful skin without ever flinching, even without anaesthetic – she did not like the sensation of the numbing cream. The first time she asked for it to be done this way, she was just three.

The reason I’m saying all this is that Juliette died. I’m her mother, and I’m alive. Every parent knows how I wish I could swap, but as no one gave me a choice I owe it to Juliette to be different, be more like she was, to live fully because she no longer can.

I think more about the golden times in each day. They are fleeting and easily missed. Without meaning to sound like a total buddhist, I try to remember to live in the moment, be aware and be grateful for sunshine, birds singing, hearing the children’s laughter, and for how close I feel to Steph as we chat and walk the dogs. These things aren’t ‘exciting’ by Juliette’s definition, but being aware of the pleasure small things bring and the value they add to my day is new, and thanks to the little daughter who is no longer phsyically with me, but who is more present in my life than ever.

That smile

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I have lots of pictures of Juliette in frames around the house, but the thing is, they’re old and I’m sadly used to seeing them. But I found this picture at the weekend, tucked between some papers and other photos, and it feels new. I love how she’s looking straight at you. She often is in her photos. It’s almost like she knew how much they would mean.