Thursday, 8 December 2011

One in 8000... Olympics 2012

I know I said I wasn't writing here any more, but we've had some lovely news....

Elodie found out on Tuesday that she's been chosen as an Olympic torch bearer! Such a lovely way to end a horrible year for her.

In shock...

Elodie saw the Coca-Cola Future Flames adverts on television a while ago asking for young people with a passion to put their names forward.  She applied online, writing about her dance-related hopes and dreams then forgot all about it.  A week ago I got a call from organisers telling me she was a winner, and for a whole week I had to keep it a secret from her.  They asked me to find a reason to get Elodie into London, where a series of things were going to happen before they revealed it to her on camera.

Stupidly, I didn't take into account fully that it is the end of term with essays due and a dance performance that she had choreographed the next evening.  When I told her about the "surprise" day we were going to have with her godmother Jo the next day, she point blank refused to go.  She adores her godmother but there was an issue with music for the performance she had to sort out, not to mention last minute rehearsals. She didn't feel well either, so there were tears as Steph and I exchanged desperate looks and whispered ploys to get her to change her mind.  In the end, I took her hands, looked into her eyes and implored.

"You're just going to have to trust me," I said.  "If you don't come to London, you will really, really regret it.  Now how can we work around the issues of you not being a sixth form tomorrow."

The next morning there were a stream of texts from my contact.  We'd arranged that I would spot him under the big neon sign at Piccadilly Circus at ten to eleven, still with Elodie.  He told me he'd be wearing a red and white Christmas jumper and a hula hoop over his shoulder, and to follow him to the Refectory Cafe around the corner from Carnaby Street where I was to be "miked up" (!)  He was about 50 yards ahead of us when I got a whispered phone call from him to say they were running about 15 minutes late and we'd have to wait in the cafe until the sound crew could get there. 

The man at the till wouldn't let me pay for our coffee and hot chocolate, saying "It's your first time here.  We never let anyone pay the first time" (though I knew they were all in on it)... cue minutes of nail-biting for me, looking out for "Jo" while trying to act normal with Elodie.  I felt like I was in a spy film... Then a text from the contact... "Okay! Go through now, past the toilet and out the fire escape door. The sound crew are there."  And they were, on their walkie talkies, saying things like, "yes, we've got the Mum, just miking her up now..." The sound crew told me to leave the cafe and turn right onto Carnaby Street so I went back to Elodie. "Change of plan darling," I said. "Jo wants us to meet her at Liberty."

Out we went and immediately things started happening - a man with scarves gave Elodie one of them; some dancers performed a routine for her, then handed her a rose; "a magazine photographer," (actually, the director) asked if he could take her picture with a male model dressed as Prince Charming...It was bizarre and Elodie starting to get a bit freaked out. "What's happening?" she kept asking me. "This is so weird..!" When we got to the top of Carnaby Street, a busker with a guitar started playing - then an athlete in a Olympic tracksuit came towards us with a big red box which he handed to Elodie.  She opened it, and there was the Olympic torch.

As she stood there in shock, the band, The Wanted, came out from where they were hiding and joined in with the busker singing the chorus of one of their songs, "We're glad you came, we're glad you came..." They all hugged her and everyone started cheering and letting off confetti. It was utterly surreal.  Elodie was speechless and shaking as all the hidden cameras came out and filmed/photgraphed the whole thing.

After introductions and interviews, Elodie, Steph and I went back to the Sanctum Soho Hotel where The Wanted were staying and were told to order whatever we'd like from the restaurant (truly a high point for me!) and wait for a private meeting with the band.

Looking cool, hanging out with The Wanted in their hotel room!

I chatted to the lovely PR lady just before we left and asked how many more times they were going to be doing the same event.  "Just today," she said. "8000 have been chosen as torch bearers and they'll get their letters on Thursday but of those, we picked only three to feature and Elodie's application was top."  Of course I was bursting with pride but all the same, I was a bit surprised. Readers of this blog will know how I bang on about my children and probably Elodie in particular because of everything she's had to deal with, some of which I've only alluded to.  I think they're all pretty special as mothers do of their children, and I expect I go on too much sometimes, but when I got home I read for the first time what she'd written.  Amongst all the other applicants who had uploaded videos, got testimonials from supporters, tweeted etc. Elodie's page was bereft of anything but her "hopes and dreams for the future" - two paragraphs, badly spelled (she would admit) and a muddle of words.  I don't know.  I am her mother but the huge sentiment behind it made me cry. I'm not going to repeat it here, but it's easy to find on the internet. It's just as well she didn't show it to me before she sent it because I would have got my red pen out, and in doing that it I would have erased the simplicity of her words that I think conveyed so much, and probably ruined her chances.

I'm so proud of her, and of all my children. Later that evening I was looking back at photos of the day, when I felt Juliette by me, joining in.  I've had this sense before in happy moments.  I think she's proud of us all.

Friday, 18 November 2011

Not fade away?

What to do with a medium when its germinating purpose has expired?  Put rockets underneath it and light the fuse? Tiptoe away quietly, without saying another word?

I started this blog with an express purpose, or as much of a purpose as one has while depressed.  I wasn't doing any other kind of writing - well, there were the internet articles I suppose - a grim treadmill of underpay and over exacting 'copy editors,' but no novel - nothing which needed a flight of fantasy. I wrote because writing has always helped me process my darkest thoughts - I'm tragically inarticulate when it comes to speaking aloud - and I needed that outlet.  But I'm better now.  I've signed off the group and individual therapy sessions too. I eked them out over the past couple of months as a precaution, but I really don't need therapy any more and this might be foolish to say, but I don't think I'll ever need it again.

I'm feeling creative again and this is such a big deal for me.  I've written some poems and I've got a huge idea for a new novel, but I'm getting to work on the one I've finished first. So do I keep writing this blog? There are still things in my head that need working out.  Elodie's CFS overwhelms me at times, when she's affected.  She's just had a four day ill patch, but last night she was singing and dancing again and I can stop worrying for a bit.  I'm in limbo too about the prison job.  I still haven't heard that I definitely haven't got this one, and I need to know before I can focus on what to do next.  I feel really drawn to working in prison, and have thought about training as a literacy teacher as one way of being able to do that.  If they don't want me for this particular library position, I'm going to offer to run a creative writing group there.  Does that sound a bit desperate?  I really want to do it.

Above all, this blog has been about Juliette and me.  For this past year her absence has dominated my thoughts in a way I didn't fully allow over the previous eight years. I think because I've let this happen, her presence has receded.  That isn't forgetting her; it's normal and healthy.  I've integrated her story into my own in a way that I feel I can live with for the remainder of my life. I want to go forwards, but I'm taking take her with me.

Friday, 11 November 2011

Books behind bars


Yesterday I had an interview for a job, working in two of our local prison libraries.

When I've mentioned this to people over the past few weeks, their eyes widen and I can see them working out how to react.  The thing is having thought hard about what is involved, I really want to work there.  I've visited both prisons, and I find it quite difficult to put into words just how inspired I was.  Both prisons present challenges - I'm not totally middle-class-naive about the potential issues - but I was amazed at what is offered to inmates and just how positive the atmosphere is.  A rooting of self-esteem, nurtures change for the better.  I absurdly, passionately, want to be a part of it. For the past few weeks and perhaps foolishly, I've made the idea of the job a part of my life.

I don't think the interview went very well.  I came out feeling like I hadn't shown the best of myself, which is frustrating. I wanted to express what I think I could do for them, and fear I fell short.  Everything I'd meant to say came to me as I was leaving to building.

Damn it.

Still, I know what I want to do now.  If they don't want me, I'm going to find out what I need to have the best chance next time.

Friday, 4 November 2011

Treasure


Making cake at Tatty and Grandpa's

Last night Elodie found a bag full to the brim of pictures none of us knew were there. Lots are of Juliette so it's an unexpected treasure trove - happy and poignant.

In the photo below she hasn't seen the camera.  Head like an eagle chick's, she's lined up her evening medicines on the shop counter and something is making her smile.  That's the one that got me in the chest.

A few weeks ago I was talking to another mother I know who lost her teenage son.  She told me how lovely it is when photographs she hadn't seen would appear from his friends, or she when she heard another anecdote about times she'd known nothing about.  I have to admit to feeling a bit jealous, because this never happens to me.  It's difficult to explain if you haven't lost a child, just how precious these little scraps of memory are.  You hoard these, desperately, especially in the early years.

After nine years I thought I knew everything, had totalled the sum of Juliette's life, but then I got a message from Emily. Lovely Emily used to help me with the children - she was with us when Juliette was diagnosed. She'd found a wonderful pile of old photographs of Juliette, Elodie and Pierre that I'd never seen.  It seems to be a time of precious and unexpected gifts.

Thursday, 27 October 2011

Sometimes

I'm feeling happy, and have been for a quite a while. 

OK..

I say those words with some trepidation because I’ve implied similar before, and then the balloon bursts with a bang.  I’ve said it here, that to name the emotion you weaken its power. Is this the same for positive emotions? I hope not, but I feel robust enough right now to take the risk. 

My dark episodes never seem to last less than a year.  I’m grateful for the bludgeoning lack of self-awareness which makes me forget this in between times. Perhaps depression is a bit like childbirth (ponders the mother of five children all born naturally) only you don’t choose the triggering event and are without the brand new human at the end of it.  Hmmm... 

What I DO know without resorting to clumsy analogies, is that because it lasts so long my perspective is skewed.  I find I can’t remember what ‘normal’ I supposed to feel like.  I think I’m me again right now, but my responses don't seem the same as before.  Perhaps episodes of depression change you, like other big life events do.

Nothing special has happened to make me feel better.  Well, perhaps that's disingenuous of me seeing as I've had a full year of no-expense-spared therapy (thank you, years of Steph's BUPA premiums for finally becoming useful), plus drugs and the unspeakable luxury to navel gaze.  I nearly wrote "naval gaze," images thereof making me giggle. This is new, that I feel like laughing again, and want to make other people laugh too - a key, and a little chink of light that's given me hope that this state might last. 

I'm looking outwards again. One of the killing things I find about depression, is how ruthlessly introspective it makes you.  You're self-obsessed but it's not selfishness.  Selfishness suggests some pleasure in the state, but in depression there is none.  Being depressed, for those lucky enough not to know is like being trapped in a self-conscious hell which you yourself have created.  All of your worst nightmares are there. You can’t remove yourself, and as much as you want to be interested in the world, your black ego turns you inwards. Depression strips you back to the dullest, most paranoid parts of yourself.  If you’re lucky enough to have help, therapy examines the carcass, picks the bones clean and then painfully, makes you rebuild the flesh.

That's where I am, fleshed up - oh, literally, I have put on a heap of weight - and metaphorically.  I feel like myself again.  I love my family, I feel creative again.  In a couple of weeks I have an interview for a job I would adore. I lack obvious relevant experience or qualifications, but I know I could do it. Six months ago I would not have had the confidence to apply - hell, six years ago I wouldn't have had the confidence either.

It helps that I have fewer things to worry about.  Elodie is managing so much better than I could have imagined at her new sixth form.  She has difficult times and doesn't have anything like as much energy as previously, but she's missed a total of only seven days this half of term.  I'm so proud of her determination to overcome this horrible condition which has laid her low for so many months, and that she wants to get on with life. I can't fix her, and I need to respect her enough to trust that she will work her own way through.  I never imagined that this would be one of the toughest things to implement as a parent.

As for me, the message that has been hammered home is that I’m utterly powerless to prevent things happening, and sometimes the sh*t will hit the fan despite my best efforts. The only thing I can control or at least be aware of, is how I react.  This is principally in relation to my long term loss of Juliette, but really it’s about everything else too. 

I spent the first eight years after Juliette died inventing another life, where things were wonderful despite her leaving, and then the past year longing for an alternative reality where she was still here. It’s tough to admit that I can’t make either of those lives, but there’s peace in accepting my own fallibility and to realise that all I can do is incorporate her loss into the huge amount love I still feel for her.  She'll always be part of me.  I just have to keep on growing to hold her, as well as everyone and everything else.

Most of all, I feel hopeful that there’s more good to come. 


Sometimes 

Sometimes things don't go, after all,
from bad to worse. Some years, muscadel
faces down frost; green thrives; the crops don't fail.
Sometimes a man aims high, and all goes well.

A people sometimes will step back from war,
elect an honest man, decide they care
enough, that they can't leave some stranger poor.
Some men become what they were born for.
 
Sometimes our best intentions do not go
amiss; sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
that seemed hard frozen; may it happen for you.

Wednesday, 12 October 2011

Hand



It was mid-way through our holiday in Southwold and Juliette wasn't well. Steph had taken Elodie, Pierre and Raphi to the harbour wall in Southwold for crabbing.  As soon as they'd left, Juliette got up and wanted to play a game.  We sat at the kitchen table and played cards, then did some drawing.  Juliette drew around her hand, using her favourite pink, then wrote her name in purple.  Above this, she drew the two of us. 

'Why have we got wings, darling?'  Juliette rolled her eyes at my stupidity. 

'Because we're flying, Mummy!'

Of course.

I concentrated on my own drawing, and can still hear the sound of her pen dropping onto the paper.  She looked awful, suddenly.  I didn't need it, but I found the thermometer and took her temperature. It was high.  Her last normal blood test had been two days earlier, so I knew her white cell count could have plummeted.  I was still breastfeeding Raphi, so I packed an overnight bag for Steph and Juliette, collected the others from the harbour, and we all drove to hospital. 

That week she had brimmed with life.  Every morning she badgered us all to get ready so we could get down to the beach.  She giggled, wiggled her naked bottom out of the window as Elodie collapsed with mortified, awe-struck laughter.  She was the flag-bearer, fun captain, the sail and the rudder, demanding each day be different - "ittsiting" (exciting).  We saw best friends and precious family, watched otters and chased dragonflies.  Her cheeks had colour, her hair was glossy.  She was irrepressible.  We thought she'd be with us forever.

Taking her to hospital with a fever was a drill we'd done a hundred times, but at 2 o'clock the next afternoon the doctor asked for our permission to stop trying to resuscitate her.

That week and a bit was a gift.  We had the best of her in those days - her energy and love, sunshine and happy times.  I know I must be grateful and I am, but the pain that I'll never know her older than 5 is always there.  I think she would have made an incredible adult.


Monday, 10 October 2011

Anniversaire

It’s Elodie’s birthday tomorrow, and I’m the only one still up.  I’m sitting here with a hot chocolate and my computer, having just blown up some balloons and fixed birthday banners to the spot on the wall next to the stairs, where they always go. 

It's been our tradition since Juliette’s 5th birthday.  Her French godfather, Nicolas, bought her a banner saying “Joyeux Anniversaire,” and on every birthday since that one we have put this banner and others up on the wall, with balloons, so they're the first thing the birthday person sees when they came out of their bedroom in the morning. 

Blowing up balloons late at night, looking for blu-tak and trying to untangle dog-eared strings for the banners on your own is a bit joyless. I thought of not doing it this year, or at least of replacing some of the decorations.  Elodie’s going to be 17 after all and I know for a fact that I bought one of these banners for her 6th birthday party.  I couldn’t though.  Elodie has an almost angry attachment to things and traditions, and defends them with ferocity. She anchors herself to solid stuff and to certainties, and to guess at why.  She understands the essential impermanence of things and change frightens her, but keeping the same birthday decorations is something she can control.  

Maybe I read too much into things. Over the past couple of blog-quiet weeks I’ve had particular reasons to think about my own feeling towards change.  I find I’m not afraid of it.  I think it’s a sickening strength I’ve gained from surviving Juliette’s death when I didn’t believe, back then, that it was possible. I know it's a strength that has the potential to make me reckless. There's no pride in it. In fact, there’s a bit of shame, as though finding the strength to survive is a betrayal of the child I lost, and an implicit betrayal of the children I still have.  How can you survive, as a mother, when your child dies?  Should you even want to?

I know that to survive, you do have to want to.  You grab the reason from a basket of possibilities; you live to bear witness that your child was here, to change the world for the better, raise money or promote a cause.  My reason was our other children.  I knew my life was over, but I could not accept this fact for Juliette’s sister and brothers.  They are still my reason for surviving, but my life is not over.  It’s altered beyond anything I imagined, but there are still people to love and experiences to have. All pretty good reasons to hang about.

The ‘Joyeux’ of the French birthday banner came adrift last year, and tonight I couldn’t find the word anywhere.  For once, this is not me scratching around for symbols and I just hope that the multi-coloured, foiled letters of ‘Anniversaire’ are enough for Elodie.  I rather like the way it looks and yes, I like what the word means to us all.

Monday, 26 September 2011

Mischief and magic

I love the photo at the top of this blog.  It reminds me so much of Juliette's irrepressible spirit. She's got her hair up in a towel like Elodie standing next to her, only she knows she hasn't got any.  The look she's giving as I take the picture is to share the joke with me, just before bursting into fits of giggles.

Juliette always found jokes - different things that made her laugh and ways to make others laugh. She loved how it made her the centre of the attention, but it wasn't only that.  She just found life fun. Even taking her medicines was a game. 

She's sitting on our kitchen table after her bath; bald and naked except for a towel, Hickman line hanging from her chest. She holds the medicine cup with her chemotherapy pills, and I can see she's thinking something, then she grabs a glass of water and grins at me.  "Look Mummy, magic trick!"  She tips the pills into her mouth, drinks some water, then shows me her empty mouth. 

She looked so beautiful, and innocent; making a game swallowing toxic pills that we were forbidden even to touch; so pitifully vulnerable and yet, in that moment I believed nothing in the world could defeat her.

For the months Juliette was ill, I avoided the significance of these thoughts.  It was easier to be drawn daily into the slipstream of her energy and enthusiasm for life and see that as life-affirming; a good thing. 

She loved people, especially adults.  She wanted to learn what they knew.  Hospital was a goldmine for her.  Sometimes, in between Steph leaving for work, and me getting there after dropping Pierre and Elodie at school, I'd find her with the nurses doing their ward rounds. They gave her a clipboard, and she wrote notes.  She had nicknames for all her special nurses.  "You're so sweet!" she would tell them, giggling. When she was well she couldn't be still.  She twinkled, lighting up a room, making each one of us feel like the most special person in the world.

These are some things the lovely nurses said about her.

“I shall miss your pretty, smiling face and infectious laugh”  Carole
“A twinkle in her eye, that devastating smile, she made my job so very worthwhile” 
“Pink & Purple, Fluffy & Bright, Mummy in the daytime, Daddy at night” Shona
“Having the chance to share time with people like Juliette is why we all love what we do.  I never saw Juliette without her beautiful smile and that is what I will always remember about her.” Matt
“Princess Lafosse, Pretty, Pink and above all, Purposeful!”  Terri
“Juliette will be remembered by me as a special little girl who got her Papa walking around the ward with pink toe nails and open toed sandals.  I also learned that “Tatty” was not a well-loved toy but a very loved grandmother.” Sue
“She was wise beyond her years”  Linda
“I called her my little doughnut, because whenever I asked her what she wanted to eat, she would say, ‘Doughnuts!’ ”  Mary
“I remember that Juliette’s favourite Christmas present was a pink silk cushion which I thought was so unusual and lovely”  Leander 
 “From the first day you brought her up to the ward, until the last day we saw Juliette, her eyes never stopped shining.  She barely complained and she never stopped making us smile.  It seems so sad that the illness that took her from you was the one that brought her into our lives”  Carole

I wanted this to be a happy post and here I am, crying again.  I've lost an amazing person I would love to have known as an adult, but I was lucky to have had her for five years. She was wise, because she spent no time worrying; wasted no time putting off the things she wanted to do.  There were no fallow hours with Juliette.  Every morning she would say, "I want to do something exciting today." She let us tease her for this, but still she didn't waste a minute.  

I try to live like that now.  I'm no hedonist, but I make sure that Elodie, Pierre, Raphi, Celeste and all the other people I love, know they're loved, every second.  If today was our last day together, would it be one that would make me happy to remember?  

Juliette made sure I have a whole memory vault full of those.

Sunday, 18 September 2011

Stalking Katy

Life isn't bloody fair.  It just isn't. Some of the loveliest people I know, who've played life by the rules, been kind and generous to their fellow man and done no harm, have had the worst things happen to them.  Some of my closest, dearest friends have had to say goodbye to their babies.  That shouldn't happen and I hesitate to say it because it sounds like whining, but it especially shouldn't happen to good people.

I did a stupid thing last week.  I opened an old address book - one that had all the numbers for Juliette's hospital contacts: wards, community nurses, consultants, and blood labs.  It was strange, but nice to see the familiar but half-forgotten names. We were part of a whole world for quite a while, until suddenly we weren't.

Then I saw the names of two other people.  A mother and a daughter we met at Addenbrookes. Katy was admitted on Christmas Eve, two weeks after Juliette.  She was a similar age, and the girls had the same type of leukaemia. Over nineteen months of parallel lives, the girls bonded.  Often they got into each others beds to watch TV, or do some arts and crafts together. Sometimes they spoke on the phone about recent hospital stays, their latest blood counts and what drugs they were on that week.  Katy was four and Juliette, five.

Katy's mother came to Juliette's funeral. I knew how much courage that took, because to me I was still the mother of a seriously ill child.  I hadn't caught up with the fact that I was now the mother of a dead one.  I remember frantically reassuring Katy's mother that just because Juliette died, it didn't mean that it would happen to Katy.  I still felt the fear of the tribe of mothers I'd been a part of.  The full force of my loss and my new, worse situation hadn't hit me yet.

Katy's mother and I saw each other and spoke on the phone for a while, but I think it got harder for both of us. Eventually we fell out of touch entirely.  Over the past few years I've asked once or twice after Katy when I've seen hospital staff we knew.  The last time I heard she was about to be discharged completely; no more at risk of leukaemia than anyone else.  Of course I'm happy.

I don't know what possessed me, but after seeing Katy's name, I went looking for her on Facebook.  I found her, of course.  Bronzed and smiling with her family on holiday, side by side with her sister, pubescent and beautiful, mucking about with her two older brothers in the swimming pool. And safe, in the arms of her mother.

I feel guilty. I looked at those photos and thought, "That should be my family. Those smiling teenage girls should be mine.  Why did Juliette die, and Katy lived?  What did I do wrong?"  Those aren't real questions because there are no answers - the types of question I'm encouraged to avoid, in therapy.  I might as well ask, why not my daughter?  It's here that I start to plunge, and ask whether life is just randomly meted out misery and luck.  I'm no philosopher and have lost my faith in all-powerful God, so I can only conclude that it probably is.  The positive people I try to surround myself with would probably say it's not what happens, but how you deal with what life hands you that makes the difference.  Right now, tonight, I'm not dealing with it very well.  Thinking about those happy pictures of Katy and her family I'm feeling short of luck, and I hate that. I want to remember the things I've got to be glad about.

My lovely father is convinced you make your own luck.  Using that philosophy though, you must also create your own misery.  I'm not a good person.  I've done things I'm ashamed of, so did I then somehow bring this on myself?  Another answerless question.  Better to take it back to small acts of gratitude for what I do have.  In my case, a loving husband; four beautiful human beings I am lucky to call my living children; another glorious girl who streaked colours over our world for five years; my family and loyal friends, and the fact that I feel and can find words to express love, every day.

I promised in the last post I'd write a positive one next, but I've been brooding about this since last weekend so perhaps having written about it I can finally put it and myself to bed.  Who knows what will happen to change everything tomorrow?  In the meantime I'll look for ways to describe how Juliette lit up a room, making everyone in it feel like the most special person in the world. I was lucky enough to be that little girl's Mummy for a while.

Sunday, 11 September 2011

Where were you when you heard?

The surreal horror of the 9/11 attacks is the Kennedy assassination moment of my generation.  Everyone remembers where they were when they first knew.

This came up on Thursday night.  I was with a lovely bunch of writer friends and I happened to mention I was reading Ian McEwan's novel, Saturday.  This wonderful novel recounts one man's thoughts over the day on which a huge post-9/11 Stop the War march took place in London. Someone mentioned the imminent tenth anniversary of 9/11, and all spoke about where they'd been when they heard about the attacks.

I knew exactly where I was.  Juliette and I were at Addenbrookes Hospital on the children's oncology day ward.  She was ten months into her chemotherapy - bald and puffy from steroids, and was lying on the hospital bed watching cartoons when Steph phoned me and told me to switch the channel - there had been a horrific accident in New York.  We were both watching live as the second plane hit.

The monthly treatment days at Addenbrookes were always a long, tense round of blood tests, meetings with consultants, lumbar punctures and then often a long wait for the intravenous chemo.  September 11th 2001 was just one of these days. The six-bed ward was full of children, all hooked up to assorted jewel-coloured poisons which dripped slowly into their veins.  The horror of what was unfolding outside that room seemed in painful relief to the mute drama of our children with cancer.

I didn't mention any of these thoughts on Thursday night.  Increasingly I don't, in normal conversation.  As much as I want to talk about Juliette, such memories seem melodramatic.  They weren't.  At the time such a day was simply and horrifically normal.  The only reference I made was to wonder whether such a huge, shared tragedy makes it easier or more difficult to cope with your own grief.  I can only imagine that at times I'd feel swamped, irrelevant even, but I suppose at least no one is ever going to forget.

Tuesday, 6 September 2011

New beginnings and old endings

I just dropped Pierre at the station and came back to an empty house for the first time since April.  Elodie started at sixth form college today. It's amazing she's there as even last month we wondered whether she would manage it.  It turns out that four other students in her year also have chronic fatigue.  The college has 3100 students so perhaps that's not surprising, but I feel reassured that Elodie won't be the only "odd" one.  Her tutor has suggested that she does either mornings or afternoons to help her cope, which seems brilliantly enlightened.

It had been suggested she drop Dance AS.  There's a significant practical element to the course and not knowing Elodie yet, it seemed crazy to staff that she squander such energy she has.  However, a life in dance is all Elodie has ever wanted.  Although I'm very afraid that pushing herself the way she always has will set her recovery back, I don't have the heart to stop her. This past fortnight it's been a joy to see her dance moves again.  I don't mean full routines but the idling, subconscious tics I hadn't realised had gone away while she was ill.  So she's tapping out a routine with her toes as she watches TV, or when she stands eating a snack.  The symbolism is spirit-lifting, so why do I feel so bereft?

I think I hadn't realised being so absorbed by the stresses of her illness, how much I loved having my daughter at home. It felt like another chance to get to know her again.  Of course I'm glad she had the self-belief to start college rather than take the year out she was offered, but I feel with this new stage that she's left me. I don't like the fact that makes me sound needy, as consciously I've always encouraged our children to be independent. But Elodie went and I feel bereft.  Bereaved.

I think the key is in the parallel of caring for Elodie as I cared for Juliette, and then she left. I'm sitting here crying at the realisation. I don't want to be feeling this, when it's so clearly different.  Elodie is not dead and the fact that she has made it in for her first day at sixth form after several months of illness is a fantastic, positive thing. Why can't I untangle my emotions?  Will it always be like this?  How on earth am I going to manage when the four of them really do leave home?  Is losing my beautiful girl going to resonate through events for the rest of my life?  Probably, yes, but then what did I expect?

Wednesday, 31 August 2011

Oooooooh, mental illness...



A friend on facebook posted this video of real women adopting model poses in public.  It's quite funny, especially the woman who holds a handbag to her face as she sits motionless in a fast food restaurant.

Although it made me laugh, the most striking thing for me about the film is how the women are ignored.  Passing members of the public mostly just try to avoid eye contact. Acting out of the ordinary, others clearly assume these women are mentally ill and as such are objects of pity or fear.

I have, over the years, had moments of feeling like the mad woman on the bus.  I've felt so disconnected from rational thought that to open my mouth and speak aloud is a palpable risk.  It's no fun.  I think with the wonderful benefit of hindsight that this is my fourth major incidence of depression.  I didn't know it at the time, but the first was in my final year at university.  Very much in love the previous academic year, I became pregnant and was booked in without consultation for a termination by the GP who had just given me the news.  He didn't suggest an alternative, and I didn't ask.  I was bitterly sorry as soon as it had taken place, and I'm sure that was what triggered the end of the relationship and a pretty awful episode of depression and OCD during my finals.  Most people don't know this about me. I expect there are some who would rather they still didn't.

I suffered silently with post-natal depression after Pierre was born, nearly thirteen years ago.  In fact, I had no idea what was wrong with me.  I had everything I thought I wanted.  A third baby was more than I felt I deserved.  It took a professional to name what I had, and that helped me contain it. Twice since Juliette died have I slipped into the inky pit - a place that has scant links with legitimate and healthy grief.

Old habits make me want to apologise for being honest now, but I can't. Perhaps therapy has loosened my tongue and distorted my perspective but I hate the secrecy and pretence in the way we talk and behave.  In Britain and most of Europe as far as depression and other forms of mental illness are concerned, the culture of simply needing to "pull oneself together" and "up by the bootstraps" lingers on.  Some I know deny the existence of depression as a condition.  To talk about it is embarrassing and to confess to suffering is an admission of weakness, and of personal failure. 

I'm open but I don't exactly bend ears indexing my misery.  That after all is what therapists are for. I do sense that some of my peers find my frankness uncomfortable, but I can't pretend all is sunny when it isn't.  It used to matter to me very much that people thought I was alright.  Losing Juliette has narrowed my focus on what is important, and keeping up appearances while your insides shatter is no longer one of them. This year has taught me there's no virtue or strength in blind denial of your human fallibility.

Equally, I figure no one has to read what I write, either here or in the book I wrote about Juliette.  Writing about it helps me feel less alone, and I've long been aware that in articulating powerfully negative thoughts and in giving them a name it weakens their hold.  I wonder too whether a few see themselves in what I write and feel less isolated just as I did reading others at earlier, desperate times.  Perhaps however this is just evidence of my depressional delusion.

Why is depression so feared, though?  That's a stupid question actually - I'm bloody afraid of it.  A small part of me thinks, like many others less familiar with it than I am, that it's contagious.  Is that it?  I've mulled this over since watching the youtube clip and I've decided it has more to do with our ancient ape tribal alignment.  Social inclusion depends on the intellect and conscious thought, and unconsciously we operate more like the beasts that we are. As in Lord of the Flies, the pack is strong and the individual is weak and whether we like it or not, we are evolutionarily programmed to crave the pack.  The mentally ill behave outside what is normal and acceptable and might even be dangerous.  Shunning them feels natural.  Avoiding the eye, then laughing with others about the woman on the bus, or the woman holding an odd pose in public binds us to our "normal" peers.

I know it isn't only fear - the gloominess of a depressed person can be just plain boring. I am all too aware that depression snatches the colour from my written words and the wit from my speech.  I'm trapped in a room with the dullest person in the world, and that person is me.  Hell is other people, J-P Sartre?  I don't need to venture out for my nether world.

An extraordinary fact is that worldwide, 1 in 4 people experience some type of mental illness over the course of a year but I know of only a handful.  I think an awful lot of people are keeping quiet.

Friday, 19 August 2011

Invisible umbilicals

I bumped into Juliette's best friend this morning.  Quietly, Lottie has put a card on Juliette's grave each and every Christmas, birthday and anniversary that her friend has been dead.  It is a poignantly beautiful gesture which has become all the more so as the years pass and she grews up, away from the five-year-olds they once were.

Lottie hasn't lived near us for a while, and recently her mother knocked on the door to say they were moving up to Yorkshire.  The hand-placed, usually hand-made cards were going to stop, and she didn't want me not to know the reason why.  We've kept all Lottie's cards, from those with childish letters she printed at five, to the beautifully calligraphed ones of recent years. Paula didn't know we'd done this. When I told her, she cried.

Lottie was down in Essex visiting her Dad this weekend, and had booked a ride at the stables where Celeste has just started Pony Club.  I knew I wasn't likely to see her again soon and I really wanted to say something meaningful, to thank her for her loyalty and love.  Instead I asked about Yorkshire, standing awkwardly with the horses until it was time to say goodbye to Celeste.

We live in a village so it's impossible to avoid seeing children that Juliette knew, but Lottie is different.  I look at her and see a tall, beautiful, composed young woman that the lost friend she clearly still cares for, should be.  This morning I found that hard to bear.

*****

I've been sitting on another blog post since we came back from camping on Wednesday.  After feeling well for what seems like quite a few weeks, I was suddenly a mass of nerves again, and saw the black dog out of the corner of my eye too.  I've worked out why, now.

Elodie wasn't well over the week the rest of us were fending off the rain in the Lake District.  My parents were lovely with her.  She ate well and got lots of sleep, but there were many more bad days than good ones and she was feeling pretty low with it all.

Months ago, before she was ill, we agreed that she could go to V Festival this weekend as a post-GCSE, pre A Level treat.  Three nights camping with friends and 24 hour live music seemed like a good thing back in March.  The mother I was back then thought she'd be OK, trusted that nothing bad could happen to one of her children ever again.

I dropped Elodie at her friend's house on Thursday night, so that they could stake an early place in the campsite queue. As we drove there I kept looking at her, grim and grey through the make-up; a scared little girl in a woman's body.  She wants to be the fun girl her friends knew, and I'm so afraid of how these few days will affect her poor body and mind. I used to feel sorry for mothers who worried.  I wondered how and at what point their faith in human nature and good providence had evaporated, but I've become one of them. 

I packed Elodie's ruscksack with as much nutritious food as I thought she could carry, and when she reluctantly returned my hug as I bit back the words and tears saying good bye in front of her friends, I am painfully aware of how it all looked.  I don't want to be this mother suffering an agonising stretch of the umbilical cord.  I want to be confident my birds will fly, and that they will be safe without me.  This feeling resonates too much.

When Juliette started school, she was nine months into her chemotherapy programme.  She was four and a half; a baby with experiences that break most adults.  Pale and vulnerable, she still wanted to be the same as everyone else.  She didn't want the other children to notice the Hickman line tucked in a blue aquarium print bag on a red ribbon round her neck, or the fact that she had no hair.  I took a photograph that morning.  Juliette stands proudly, flanked by her big sister and younger brothers, one hand on her named school bags and the other protectively over Raphi's car seat.  A pink hat clashes with her red uniform, but it's her favourite colour and it hides her baldness.  I didn't want to let her go.

Elodie doesn't want the extra attention either, from me or from anyone.  She just wants to feel well again and be the same as everyone else her age. The intellectual part of me knows that she will eventually be OK, physically and mentally, but my emotional side remembers I believed Juliette would be too.






Wednesday, 10 August 2011

Hols

We're in a confusion of boxes and bags for going away and as we're camping for a week, it's packing x 10.  Steph is a hot weather person, and loves returning to his native country, but I "suggested" a few months ago that maybe for once, we don't go to France this year. Instead, we're going to the Lake District. 

Steph is a hot weather person, and this area is possibly one of the wettest parts of the UK (clue is in the name) and it looks as though we'll have rain for the first three days at least.  Normally he would hunch bitterly over the forecasts but there, this time he's surprised me by not hunching, nor blaming me for deflecting France.  He said last night with a beaming smile that he has "low expectations" for our trip. This is my default mode whenever we go away. I think having low expectations is a great place to start because any good bits are a happy surprise.

We know the area is beautiful, and we're both looking forward to lots of walking no matter what the weather does.  We've promised the children boat trips and possible fishing, so they're all very excited.  Elodie, never a keen camper at the best of times will be staying with her grandparents for the week.  She's hoping to ride, sit by the pool and be spoiled by her grandmother. I hope she'll have a well few days.

I've been thoroughly depressed but glued to reports of the lawlessness occurring in London and our other major cities.  It will at least be lovely to be away from the television pictures and rolling internet coverage for a while, walking, eating and drinking with some good friends, and spending time with each other as a family. 

Fingers crossed for no spelling mistakes because we're rushing out the door, now... 

Friday, 5 August 2011

Mother




I know I'm lucky. I don't work, and that's unusual for a mother these days. The extra money would be nice but a combination of lots of children, one of whom became very ill, and a paralysing lack of confidence in just what my marketable skills are after years of childbearing, have made working seem out of reach.

Once, I had a job. Before Steph and I got married, I worked in sales.  That was an accident.  I moved to London after graduating in French, and a recruitment agency put me forward for a position as a European sales rep.  For two years I sold Turkish polyester to industrial weavers across Europe.  I was 22, and had not the slightest enthusiasm for selling, but I had fun.  I suspect I got the job because my skirt was on the short side.  That's not going to get me a job these days.

Not working (unless you count a tiny bit of paid writing) has meant spending a lot of time with my children.  That hasn't always felt like an unadulteratedly good thing for me or for them. I've sometimes thought that I'd be a better mother if I had a life beyond the house, and I have worried about the example I'm setting my daughters.  Saz once told me half-jokingly that I needed to provide a positive female role model for the girls after she spent a night in hospital with Juliette.  In the morning, Saz kissed her goddaughter goodbye and said she needed to get to her office.  "Girls don't work," laughed Juliette, indulgent in her godmother's delusion. "Only mens do."

My own mother didn't work or at least, not outside the home.  When school fees became too much of a burden, she opened our big, lovely but shabby house to guests.  Foreign language students we loved and welcomed into the family.  Bed and Breakfast visitors, less so.  A creative soul, she could have been an actress and has a beautiful singing voice, but she was never encouraged.  I did hope I'd be different.

My "failure" in the role of mother when Juliette died and the ensuing depression, blinded me. I felt useless, nothing more than my children's unemployed carer, a benign yet passive shepherd with little influence. Worse, at times I'd become a malevolent instrument of hurt as the demons of depression took hold. I started to believe my children needed protection from me.

Therapy, blessed therapy, has made me value my role as their mother again.  Writing this blog now I feel somewhat shamefaced to admit that it's more by accident than design that motherhood has been my career. I look at my children. In the past I've been surprised at what fabulous people they are.  This may sound falsely modest but I truly believed and goodness in them was a happy accident, nothing to do with input I'd had. Now I accept that I've had a hand in shaping them, but the clay is resolutely their own.

It's seems a while since I've felt this way, but I'm loving the holidays. I usually appreciate not having to skitter out of bed to make packed lunches and chase after uniforms, but it's more than that. The house is a tip, but rather than slip into my default (depressed) hysteria at the mess, I'm coping with it.  I'm just loving being around the children, and that's making my heart sing. For me, the most terrifying aspect of depression is how disconnected you become from the people you love.  But the summer holidays loom long, and I feel like I'm getting to know and love my children all over again. It feels amazing. 

I'd had a bit of a break from therapy but I was back at the Priory on Monday. The timing wasn't great with the holidays, but Elodie had enough energy to take charge at home and I reminded myself that they all need me to be well. I had an hour with my counsellor, then morning and afternoon groups. Unusually, I was the only person in each group, so it ended up being six hours of one-to-one therapy.  The whole day was about Elodie and her situation, which has been weighing very heavily on my mind.  There's a lot more to her illness than anyone knew. 

When I got home, all four children were grinning from ear to ear.  They'd had a wonderful day, and had organised a "photo shoot" as a surprise for me. These are some of the pictures they took.





Despite our run of bad luck, I am still a believer in fate.  I struggle to imagine how we would have coped with our young family had I been working when Juliette was ill.  Less so how I would have grieved, and given each of them the support they needed. Now, Elodie needs some intensive love and what I'd be able to offer at the top and tail of the day just wouldn't be enough, for either of us.  I'm a huge admirer of mothers who manage to juggle work and child rearing.  A big part of me feels they are more important, better people than me, but for our family so long as we can manage it, I'll be at home. And if that means steering our way from one financial crisis to the next, then so be it.