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.


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.


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.

How others see us

At my book group a couple of nights ago, we were six around my kitchen table.  Of the six of us, four had lost a child or a young baby.  I sat next to a friend who should the day before have been celebrating her son’s nineteenth birthday, but he died six months ago.  Before we started talking about the book, I asked her how the day had been for her.  We spoke quietly, and I guess this was because neither of us wanted to make the mothers with all-living children feel uncomfortable.

This got me thinking about a couple of things.  Firstly how I seem to have congregated in my life people who have lived through losing a child.  Some I met soon after Juliette died, through a need to connect with others for proof that I too could survive.  Later I made an effort to become friends with more recently bereaved parents, thinking I could be that proof for them.  Being with other bereaved parents is a bitter sweet fellowship.  None of us wants the thing that links us but as that is not within our choosing, being with others who have lost a child is comforting.  We can be ourselves, share the pain we know only too well, even make jokes that others might find shocking or macabre.  We are walking wounds in various states of healing, or of scarring, but there’s no need to hide anything.

For other non-bereaved parents, we are an embodiment of their worst nightmare, and it can be frightening even to glimpse through us what it would be like.  Who would want to feel it, if you didn’t have to?  Not me, that’s for certain.  Knowing this is what makes me try and help in my inadequate way, others who have lost a child.  It is too hard for their friends to put themselves in the person’s shoes, and that’s normal.  But those of us who have lost a child are already standing in them.  In my own experience the best words for our friends to say are, “I’m sorry,” and mean it.  It’s a simple but powerful expression of regret and with a hug on a bad day, it’s all you need.

So often friends and acquaintances are afraid of saying the wrong thing and that they might make you cry, so they avoid saying anything. We need to let them know that the tears are there anyway and if they appear as a result of a comment, it’s a huge relief.  They can’t make us feel worse than we already do, it’s just not possible.  Bereaved people need to cry, and permission to do this without being distracted or “cheered up” is often the best medicine of all.

Strangers are another thing. I hope I’m more sensitive to others now, but when Juliette first died, I was a one woman nuclear missile.  Without forewarning I would tell poor checkout girls and other random people I encountered, that my daughter had just died.  I didn’t care if they were uncomfortable and struggled for the right response. I just wanted to spread around a portion of the hideous pain I was feeling and in some primitive area of my grieving brain, I thought it would help.  Luckily for all I stopped doing that pretty quickly. An elderly lady who happened to be behind me in a queue at the Post Office had responded, “Leukaemia was it?  Oh well, she’s probably better off dead.”  I started being more careful, trying to work out who could handle the information, and whom it was kinder (for me and for them) to spare.

It’s easier after eight years.  Usually I’ll talk about Juliette, but sometimes it’s only my living children I mention, and it no longer feels disloyal to her.  I’m protecting her memory in other ways. 

The Compassionate Friends article in full

When my daughter Juliette died, I started writing.  It was a diary at first, and I began it the day my husband went back to work.  Here I spilled the thoughts and feelings I had, raged and mourned my loss in a place that was safe.  I felt like I was going mad, but filling the blank pages allowed me to do this in private.
After a while, my feelings changed.  I wanted to tell Juliette’s story, beginning with the diagnosis of leukaemia when she was three, and her death, nineteen months later.   I needed to do it, afraid that my memories of her would vanish like smoke, just as she had.
I wrote for myself, but I also wrote for our other children who were too young at the time to absorb the details of their sister’s life that I felt were important.  I wanted to paint Juliette in all her glorious colours – show my love, and the love she inspired in so many others.  I recorded moments of happiness and laughter; how the disease never took these from her, even when she was in the bitter grip of chemotherapy.
When I typed the final words however, I realised that there was more to say.  Losing Juliette had radically altered the journey of our family but after six years, we were still together and moving forward.  What had we done right after Juliette’s death that we were able to laugh, feel the joy of being a family again, yet without her physical presence?  Was it something that I would have wanted to hear six years earlier, that I could now pass on?
Most parents in our situation feel terribly alone in grief at one stage or other.  That young people don’t usually die is of course good, but it can make those of us who have lost a child feel isolated.  Why us?  Why our child?  Usually there aren’t many in our acquaintance who can tell us whether we will be able to get up tomorrow morning, let alone survive the experience.   To survive was what I wanted for my family, but grief is a maze of contradictions.  When Juliette first died, a big part of me expected that the feeling my heart had been ripped out to last forever, and I would not have wanted it otherwise.   The rest of me craved the reassurance that no matter how I felt at the time, one day we would heal.
With shaky intention I started to put into words how our journey continued after Juliette left us.  I talked about what I was doing, and friends who hadn’t lost children wondered whether the experience of writing it all down was cathartic.  I suppose in some ways it was, although recalling feelings and events felt sometimes like tearing at a barely closed wound.  Often months would pass before I could bear to click on the icon that blinked reproachfully on my computer desktop.
At some point in the third year of writing however, I was suddenly driven by the idea of turning it into something publishable.  I poured all the energy I could spare into it, and probably some I could not.  The book became the focus and flame of my grief – the “something good” that would come out of my daughter’s death.  I wrote from the heart.  There are passages in the book I can’t read without feeling again the searing pain of my raw grief when Juliette died, but at the time I needed resolution; an ending.  I worked at drawing the frayed ends of my emotions together on the page.  Neatly framed I could cope with them; they made sense to me there.  I hoped others would see their own pain in mine and together we could race to a happy ending.
Of course, really, there is no happy ending.  I wanted it to be so, but my grief did not obligingly burn itself out when I typed “The End.”  Life is still as terrible and as beautiful at times as it always was.  I realise now that on some level I believed that the pages of my book would contain in all senses, my loss.  Safe on a shelf, I could get on with the rest of my life.
Watching Petals Fall is for now still in manuscript form, and with all I have realised recently I’m glad about this. It’s allowed me the time to reflect on what I wrote, and in a wider sense consider what the book means to me.
There’s no question that I want Juliette’s life and death to have significance that lasts, and not just for me and others who loved her.  I want to fill the ephemeral hole she once occupied with something solid.  I know now that I may never be able to do that.  Money raised for charity is spent, and books published are in the end only paper.  It’s enough that I was her Mummy, that I had Juliette to hold for the time I did.  Her love is the memorial that lasts forever.
Having said that, I’m dermined to finish the book and re-write the ending.  This is because despite my best efforts to control it, I’ve learned that grief is messy, unwieldy and unpredictable.  I think the denial of this has brought me to where I am now, and I’m humbled.  I blame my pride in “doing bereavement” perfectly, because there is no such thing.  My beautiful daughter died, and the aftershocks continue through my life.  Did I expect, or even want them not to?  I loved her so much and as you love, so you lose.  You can’t choose the highs without risking the devastating pain of loss.  And yet I love her still as I do my other children, and I’m not afraid.
I have been told recently that I am suffering from depression, complicated by grief.  The diagnosis that I baulked against at first has in fact allowed me the freedom to stop denying the impact that losing my daughter has had on my life.  I’m a human being; a mother who loved her child and had to watch her die.  It is futile to continue painting the experience with colours that are not always there.  It’s a little frightening to have no idea of how losing Juliette will continue to affect me and our family, but I feel relieved to be admitting this at last.  To omit what I’ve learned in the book I hope one day will be published, feels to me dishonest.
I do believe that tragedy in life awakens many things within us however, not least an awareness of the sufferings of others.  I think that a glimpse of the utter despair wrought on us when we lose a child makes us uniquely placed to reach out at a later stage to those that are experiencing something similar.  As well as this, the good and the blessings in our lives are all the more precious and golden for what we have suffered, and the realisation of this for me at least has been no bad thing.
I’m convinced once this tricky period ends as I know it shall, that I’ll emerge stronger than before, ready to rejoice again at my luck for having had such a special little girl in my life at all.

Article for The Compassionate Friends magazine

Yesterday I re-wrote an article that I started back in November that I plan to send to The Compassionate Friends magazine here in the UK.  Reading the original version, I’m so glad I didn’t submit it before Christmas. I was in the middle of a very bleak few weeks and sound wretched, bitter and hopeless.  Actually I’m amazed looking at the words that I was in any state to sit at my keyboard, let alone try and compose anything!  I meant to talk about just how miserable it’s possible to be at times, years after losing a child – (I certainly did that, with bells on) but it’s not all I feel, all the time.

The awful thing about depression I’ve found is that it causes a lack of perspective.  Thinking about it, this is probably the seat of its power over the mind.  There are moments in my private pit when I’m tortured by the sense that it will never get better.  But it does, doesn’t it?  Our situation however throws up its own special problems.  People we know who experience a “normal” bereavement (i.e. a parent, grandparent or other person older than ourselves) I think find it difficult to fathom the depth and breadth of our grief as parents.   That’s made me, at least, feel guilty and apologetic when I have a bad day/week, eight years on.  In the article I try and show through my own experience that actually, having a child die is pretty crap, and that if we’re still sad thinking about our children years on we should really not feel guilty for being that way.

Any old how, I’m happy with the article as it is and hope that others reading it will read something positive (rather than hideous, self-indulgent despair) in my words. Deadline is the end of January for the Spring edition – I hope they decide to print it!