Feeling sick

I’m taking Raphi to Addenbrookes hospital today.  It’s where Juliette was rushed by ambulance an hour after we were told she’d tested positive for leukaemia.  She was just three, perfect, and full of life.  Propped up on pillows in the back of the ambulance she eyed the saline drip in her hand with curiosity, but not fear.  The nurse told Juliette she looked like a queen on her throne, which made her giggle.  I sat next to my little girl, a screaming headache from the effort to keep smiling, longing for her to sleep so I could cry.

Then, Raphi was a 12 week-old foetus.  Now he’s a nine year old with allergies, and Addenbrookes in Cambridge is one of the best places to deal with these.  But this will be the first time I’ve been back.  I thought I’d be OK, but I’m not.

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Booze…

I wonder if I’m alone in my on-edge relationship with booze.  I come from a long line of distinguished alcoholics – well, a long line of alcoholics, anyway. I drank too much in my teens and twenties, but when I had my own children I worked hard on not letting it become something I needed to do.

Rules were null and void in the surreal days after Juliette died, and I drained glass after glass of white wine.  It bludgeoned the sharp edges of what was real – I didn’t have to feel everything about Juliette being gone. I drank on an empty stomach because eating was an obscene reminder that I was alive, when she wasn’t. Tempting as it was I knew I couldn’t go on being drunk.  For one thing, I needed to funtion for the other children.  Sober, the crashing weight of pain would hit me and that I needed too.

Lately I’ve been told to avoid alcohol because of the pills I’m taking.  I’m not thrilled that I need anti-depressants. I’ve done without them over the last eight and a half years and I refused them when I had PND twelve years ago, after Pierre was born.  I was afraid of dependency and too proud to accept I couldn’t manage on my own.  You know what they say about pride, and I guess this is my fall. 

Anyway, I’ve been taking the pills but not refusing the odd drink.  Sometimes I’ll have more than the odd one. From the distant past, I’m remembering how one glass makes me feel good… only right now, maybe because of my lingering mood or the A-Ds, it always makes me feel like shit – hopeless, and self-destructive, then tired and bad-tempered the next day.  It unravels the progress I’ve made with getting back to feeling positive.  I feel so stupid that I don’t remember this in between times, so I’m saying here that I will stop, now, at least until I’ve come off the pills.  The psych man thinks that will be quite a few months – more than six but fewer than twelve.  Booze does NOTHING for me.

Pantomime

Four of our five were in our local drama group’s pantomime tonight, playing two stall holders, a thief and a dancing girl.  Steph and I leant together, bursting with pride at their poise and presence.  I glory at the creation of this beautiful flesh that is us, but not us.  Not just on stage, but at the breakfast table, I am spellbound by their uniqueness. We are not even the archer, only the bow, and the arrow has all the wonder of flight ahead.

The shape we’re in now

Sometimes I start wondering what we’d be like as a family if Juliette hadn’t died.

Elodie is sixteen now, and just seven when Juliette left us.  Celeste is that age now, and the baby of the family.  We all treat her like the baby, but when Elodie was seven she came to the room where the sister she adored had died so she could kiss her goodbye.  My heart shrinks at the thought of Celeste having to do the same, but Elodie seemed so grown up – the mature, oldest of four.  Poor little girl. 

That random thought made me cry during supper tonight and I told her I was sorry.  She snorted, as teenagers do and asked me why.  “For not protecting you from Juliette dying,” I said.  “But what could you have done?” she asked me.  “That’s what life’s like.  I’m the person I am because Juliette died.”  I’m so proud of her wisdom, her depth of compassion and empathy, but why did she have to lose her siser to gain this?  What would she be like if Juliette was nearly fourteen, and still here?

Juliette’s eulogy

I re-read this today.  When I was writing it eight and a half years ago, in the surreal days following Juliette’s death, I used to shut myself in my bedroom, looking for calm and quiet which would let me find words that might capture the essence of my beautiful little girl. 

I was a mess.  My mother was anxious.  She wanted someone else to deliver the eulogy.  “You can’t cope, darling,” she said. “Other people won’t cope with you standing there.  It’s too much.”  Her words were heavy on me as I wrote, but I was determined to do it.  Steph couldn’t – told me he wouldn’t be able to – so who else?  I wasn’t going to have some member of the church who barely knew Juliette, talk about her.  She was MY daughter.   I was her mother.  I felt her first kicks in my stomach, held her when she was born, cherubic and perfect.  It was me who wrote wonder poetry about her in my head as I breastfed her during dark spring nights and told her I loved her, as she died, five years later.

My mother’s warnings made me try and be funny.   I remember standing in front of her coffin, aware that I was shaking from head to foot.  The sheets of paper with notes written in purple ink, shook with me. I couldn’t read them. How on earth did I think I could get people to laugh? They did, though.

Juliette was an intense little girl, who twinkled with laughter so much of the time.  There was nothing she couldn’t make a joke from.  Anyway, this is what I said:
I’ve been praying very hard for the courage to stand up here today.  I probably shouldn’t tell you this, but in all my 34 years public speaking is the only thing I’ve won a prize for. And now I’ve raised your expectations, I’d better say that I think I was only seven at the time and I don’t think the competition was all that fierce.
I’m standing here because I wanted to show a tiny scrap of the bravery that our little Juliette has shown over the last nineteen months. She humbled me on a daily basis with her lack of complaints.  She became almost unflinching before needles.  She took foul tasting medicines every day without a word – mostly – some days she would scream and fight as you know, but I feel that that was her own personal theatre.
I was truly in awe though of how she accepted her situation. I remember one day last year after a bath, she was sitting bald and naked on the kitchen table with her Hickman Line hanging out of her little chest. She was holding a handful of chemotherapy pills and she said, “Look Mummy!  Magic Trick!”  She put the pills in her mouth, had a gulp of water and then with utter glee showed me her empty mouth.
I couldn’t help it – I started to cry, which of course she was bemused by – but this moment somehow crystallized for me her beauty, her bravery and her sheer determination to have fun in what we more laden adults would perceive to be a grim situation.
But I don’t think children have our fears and I’m so grateful for that.  Last week crabbing in Southwold, she decided she wanted to hold a crab – only neither Steph or I were brave enough to help her.  So she picked it up herself.  That was Juliette.
I’m going to miss her so much.  I’m going to miss her soft head and her lovely little solid body.  I’m going to miss the way her eyelashes curled up to her eyebrows, her heart shaped mouth, and the way she would quietly cuddle into me.
And she was the only one of our children with a decent bottom, which I am proud to say came from her maternal side.
She was so curious, demanding to know where babies came from when she was only 4 – refusing to be fobbed off with my vague answers – using them to build her next question, sometimes weeks later.
She made us all laugh.  She was a wonderful mimic with comic timing an adult would envy.  I remember her deliberately but charmingly sabotaging Elodie’s carefully thought out dance moves – all the time barely suppressing her wonderful infectious giggle.
I mourn the adult Juliette I’ll never know.  I know that sometime in the future when we stop feeling so robbed, we shall be so grateful that we lost her as we knew her – laughing, playing with her beloved Elodie, Pierre and Raphi – cheeky, gorgeous, with an occasionally seriously foul temper which I fear was something else that she got from me.  But she made up for it with bountiful levels of charm.
She was so loved, and someone has said that that radiated from her.  She seems to have touched so many people and I don’t think it was just because of her illness.
Steph and I believe that she has had the best medical care over the past year and a half.  The golden souls of the many doctors and nurses that have cared for Juliette, and those that desperately tried to save her life last Thursday, we’ll remember you forever.
I believe that she was just too special for us to keep for longer than the five blissful years that we had her.  I don’t believe in a cruel God.  I don’t believe in a pointless world.  Some day I’ll understand.  I feel so blessed to have been her Mummy for five years and Steph is the proudest Papa ever.  The mortal in us aches with losing her, but we will see her again.  In the meantime we are going to have to ask you to help us find the strength to spend the rest of our lives on earth without her.
We love you darling.