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.

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? Why didn’t Juliette live too?  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.

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.

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?