Snake oil, and more.

 
Elodie was a beautiful baby. Her facial features were small, except for a pair of huge, blue eyes, fringed with Betty Boop lashes.  She reminded me of a baby bird. 
When she was about a month old, she developed eczema. It was worst on her face which she would scratch until the blood poured. In desperation I would restrain her hands, breastfeed her, sing to her, anything to distract from the itch which tortured her especially at night. 
Seeing her skin, strangers would recoil in horror. Once, a local shop owner peered into the pram.  
“What a pity,” she gasped.  “I expect you want to take pictures of her, but you can’t because of the way she looks.”
We shopped elsewhere after that. 
I remember the final conversation I had with our GP about Elodie’s skin. He shrugged, and said they had “nothing left” in their armoury to help her, and that we were just going to have to hope she grew out of it. Until then I had not considered althernative therapies, but from that point I was on a quest.
A friend from my NCT group suggested homeopathy, and cranial osteopathy.  We tried both.  The homeopathy had subtle effects, but the cranial osteopathy was dramatic. She slept better almost immeditately and her skin started to improve.  Within six months her complection was perfect.
I took Juliette to a herbalist when her leukaemia was diagnosed, and I think it helped with some of the effects of chemotherapy. For a while, we visited a healer every week.  Juliette liked the act of escaping our noisy house for a couple of hours and I did too. It was peaceful and nurturing, but she still died.
I’m aware that my reaction to Elodie’s illness may be disproportionate.  Unfortunately, knowing this does not seem to help me loosen the wires that have sprung taut, taking me back to another time and another daughter. But this is now, and I can only move forward, not back. On Monday, I took Elodie for her first acupuncture appointment.  I’m not expecting miracles, but she really does seem a little better.  Still tired but perhaps not as acutely, and her mood has definitely been better.  She goes back again on Tuesday.
I’m know that to continue raging against the situation is futile. As when Juliette was ill, some moments difficult to avoid, but they sabotage positivity.  Elodie needs my strength and as there’s little else on offer right now, I would be an odd sort of mother if I didn’t do everything I could to make it available for her.

Dis-ease

After Juliette died, it was inconceivable that anything bad could ever happen to us again. I think this feeling began in fear but on a deeper level and I know how terrible this sounds, I believed Juliette’s death was a brutal inoculation that would protect those of us she left behind. We couldn’t suffer any more pain.

It being life and everything, of course that couldn’t last. Viewed coldly, when you walk the invisible tightrope of mortality and are made to watch the premature fall of someone you love, you can’t stay blind for long to the fragility of life and luck.

Right now, Elodie is ill.  It isn’t life-threatening and she’s not ill so much as horribly, desperately tired. It’s been getting worse over the past six weeks. At first she would come back from school and fall asleep on the sofa, then be unable to find the energy to revise for her GCSEs.  After a while she couldn’t even summon the energy to worry that she was falling behind.

At the moment she’s not able to do very much more most of the day than lie in bed or on the sofa, and has had to pull out of the remainder of her exams.  This might sound like a dream for lots of teenagers, but not Elodie.  Unlike her mother at the same age, she is hard-working and diligent and this lethargy is totally out of character.  Apart from school, she’s had to stop dancing – the love of her life since the age of two. She was doing fourteen hours a week of classes until Easter. Now she hasn’t the physical strength for anything much at all.

The official diagnosis is post viral fatigue though she had a second round of blood tests yesterday to rule out any other problems.  The consultant she saw told her he is fairly certain this is what she has and that at best she will recover in three months, but it might take as long as a year.

She’s sixteen, so this feels like the end of the world.  No certain exam results that will take her to the sixth form college she’s chosen, the prospect of having to study for an extra year, no parties and certainly no dancing.

As her mother I feel so helpless, and angry too.  I want to be able to fix her so she can get on with her life and although the circumstances are different, these feelings are painfully familiar.  I am reaching inside myself to stay positive and for the strength I’m not convinced I can always muster.  I know that what she has isn’t dangerous but I’m pissed off that she’s having to go through this, when in her few years she’s already had to cope with so much.

That’s all. Nothing profound to say. Tomorrow I’ll do more research on treatments that might help her fight back. I just wish it had picked me.

Golden nights under canvas

Celeste gives up on the sea at Shingle Street beach in Suffolk.

Camping is great, if you do it properly. I know the part about it being cold and uncomfortable, the shared loos, and the dirt.  Elodie has a long list of why she doesn’t like it, a carbon copy of the one my mother used through our childhood. My Dad had been a boy scout and tried to convert my mother. He managed to get her to go once when I was about eight to St Jean de Luz, but it failed to convince her of the joys. He mentioned it today when they dropped in on their way home after a couple of weeks across the Channel.

“Do you remember how it never stopped raining?” he asked.

Strangely, I don’t remember a drop.  What I remember is fantastic spy games with new friends in the campsite, eating delicious tinned stew in the sunshine outside our tent, going with my sister Dido to buy baguette every morning with our rudimentary French, and the giant waves of the Atlantic.  We went a second and final time but this time without without my mother, up in the Lammermuir hills which were a few miles from our house in Scotland.

This time I remembered how we pitched our tent in a downpour. It was my grandfather’s tent from before the war – the type that if you touched on the inside, water would pour through the canvas. And it continued to rain.  My father organised us into playing a tracking game, then tried to light a fire.  Of course the wood was too wet, so instead of hot baked beans on toast we ate cold baked beans on bread, inside the tent.  I remember the rain that time, because it made the adventure.

We went camping this weekend with a group of other families.  It’s an annual event that’s all about choosing a brilliant location to enjoy fabulous food and drink around a campfire in wonderful company.  It has to have space for the children to make their own adventures in between huge games of drunken (drunken on our part obviously, not theirs) rounders. Last year we were in Oxfordshire, close to the Uffington White Horse, but this weekend it was Suffolk.

It’s always poignant for Steph and me, heading along this stretch of coast. We were on holiday in Southwold when Juliette became ill for the last time, and the route takes you past the turning to Ipswich Hospital, the awful place where she left us.

We never took her camping, but I know Juliette would have loved it. She loved being outdoors and had such a radar for fun, out of the ordinary events. It would have fulfilled her constant plea to “do something exciting.” I thought of Juliette often over the weekend.  Olive is fourteen and one of the two teenagers with us. She was due to be born in March 1997, like Juliette, but arrived three months early. I remember meeting her as a tiny little scrap of six months, while Juliette was a robust and chunky three months.  At the time I thought of the trauma her parents had been through, and felt almost embarrassed at how healthy Juliette looked. Over the weekend I wondered whether Olive and Juliette would have been friends. 

The rain all through Friday night disturbed us slightly, and we were glad of our almost waterproof gazebos as we finished breakfast on Saturday morning, but after the skies cleared the eighteen of us set off for a walk to Shingle Street beach. After a meandering three or four miles we arrived at this oddly desolate place.  The only buildings for miles other than a handful of Martello towers built to repel the dastardly Napoleon in the early nineteenth century, were the line of coastguard cottages on the shingle.

Celeste strode down to the distant sea with her friend Harvey, despite the miles they had just walked. The rest of us concentrated on refuelling with snacks and wondered where the nearest pub was to break the return journey.

I said to Steph tonight that these are the sorts of times our children will look back on. Childhood memories are viewed through a filter, and I hope it’s a happy one. Perhaps they won’t even remember the rain.

Leaving Shingle Street to find a pub, Martello tower on the left in the distance.

Mark Twain’s Susy

I dream a lot, and vividly as I imagine many people do when life is particularly turbulent.  Some of my dreams seem so brilliantly conceived that I write down the details excitedly for story ideas.  Most of course turn out to be a lot of nonsense.  Sometimes my dreams don’t have the pretensions of glittering new fiction but are symbolic, at least to me.  Last night I had one of those.

I was in a high street bank, queuing up at the counter to withdraw some money when a robber burst in. I lay on the filthy floor with the other customers as he emptied the safe, but as he was leaving the thief bent his head close to my ear on the floor.

“I’ve got all your money,” he said. “Cheer up though.  You’ll be able to make a claim for those clothes you’ve got dirty. How much did you pay for your T-shirt?”

I looked down at my T-shirt, and remembered paying £8 for it.

“There you go then.  That’s £8 you just got, thanks to me.”  And he left.

When Juliette died, any coherence or articulacy I had, snapped. I needed to express what I felt but there were no words. In desperation, I read books that might draw down my emotions. I think I believed that finding words to define the feelings would limit the power they had over me.

This was a paragraph I stumbled on from a letter written by Mark Twain, whose daughter Susy had just died after a short illness.

“I did not know that she could go away. I did not know that she could go away and take our lives with her, yet leave our dull bodies behind. And I did not know what she was. To me she was but a treasure in a bank, the amount known, to be counted on. I did not know it could be taken away. And now it is too late. They tell me my treasure is not there, has vanished away in the night, the bank is broken, my fortune is gone, I am a pauper. How am I to comprehend this? How am I to survive? Why am I robbed, and who is benefited?”

His confusion, almost child-like, mirrored mine.  With Juliette gone I needed to know, if she wasn’t with me then who did have her? Why did we not fully know the treasure we’d had until in an instant, it was gone?

I think the bank robber in my dream was Death, and his words were the ones I’ve used to myself over the past few years – that when the loss is so huge surely there must be some gain, somewhere?  Isn’t that the way the universe works?  So I’ve told myself I must be “a better person,” more empathetic and conscious of what is important in life and that losing Juliette is what gave me the courage to write.
But I’ll never hold her again. With rose-tinted spectacles off, my gain feels like that £8 on a cheap T-shirt.