The scent of grief

There’s a poem, that I’ve forgotten the name of, about changing the sheets. It contains a line about the poet’s mother “the smell of clean washing is hers” I think of this every time I change the bed. I use the same washing powder that my mother used to, just for the smell.

When I think of my Dad, I can smell shoe polish, the kind that comes in a metal tin with a tiny lock, that needs a brush. I can hear his voice, admiring the shine and reminding me of the importance of paying attention to the backs as well as the toes, for the benefit of the people behind you. When I was small I used to sit on the floor and take his boots off, releasing the hot dampness of his thick socks.

But what smells remind me of Fred?

This is all the wrong way round, he’s supposed to have things that remind him of me. The washing powder, the shoe polish, the crumble in the oven, the waft of pancakes. These smells can’t belong to him, they are mine to give.

When he was a baby, I would tuck a cloth down my top in the vain hope that it would comfort him and persuade him to sleep. I never needed one in return.Years later, we moved onto my extravagant sleep balms. “Will you do my potions?” he would ask, as I rubbed my prized organic sleep serum onto his forehead, and sprayed lavender pillow spray on either side of his head. Neither of us believed it worked any more than the cloth, except that he had asked something of me and I had given it willingly – the scant brush of physical affection and service that a teenage boy will allow.

There was no cologne to cling to, just a desperate attempt to persuade him to wash. “Your hair stinks!” which would be his final cue to get in the shower, after days of pretending he’d already had one. That fetid, oily stench disappeared along with his hair, and his treatment’s demand for cleanliness. I longed for that smell to return as I kissed the top of his bald head. Now there was a larger target area for me to reach, and he was less inclined to stop me.

It was not the only smell that was taken from me – the strawberry milkshake, kept in the cupboard for school holiday treats. It’s synthetic, sickly fragrance (having never seen a strawberry) turned putrid day after day on a hospital ward when he couldn’t eat but needed the calories. Pints and pints were whisked up with extra spoonfuls, no longer caring about the sugar. When I opened the box, months later, came screaming back as a vicious reminder of all that had been spoilt.

Now I anxiously look for new things to fill the space. New perfume, new room fragrances, flowers, anything to fill the things that have been taken, the smell of an empty room.

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I know where I live

I know where I live. I know where I live because the signposts and landmarks tell me so, but this is not my home.I remember watching the drama Chernobyl on the TV, before all this happened.

This is where I live now.

My home was full of laughter, and hope. Children played in the park and ran in and out of the houses. Music drifted from the funfair, babies cried, songs were sung.All that has been blown away.

One catastrophic event happening deep down in cells so tiny that scientists have dedicated their life to finding them. One catastrophic, unseeable, unknowable chain reaction that became the destroyer of worlds – and it is all gone.

What is left is outlines, empty shells that stand, reminding us of what has been lost. If you listen carefully you can tell yourself that you can still hear the music from the Ferris Wheel in the distance, but you know that it is just creaking in the breeze.

Everything that you have knew is covered in a thick layer of toxic, devastating dust. You try to tell yourself that there is beauty in it, people try and tell you too, but you know it’s not true. The dust is there to smother the life out of your world and it will take a lifetime to blow away.

You know too, that everything that follows will be forever altered. It cannot be swept away and started again. Everything from this point forward will either flee, or be corrupted, contaminated, damaged. Broken.

And yet I cannot leave, because this is the only home I have ever known, the one where I built monuments to you. I cannot up and leave you behind. And there is nowhere to go. I am forever altered now and that contamination cannot be washed off – I will never be permitted to leave – locked in.

But one day things will begin to grow again. The funfair may never revive it’s tune but somehow, someday, it will be replaced by something fresh and wild. A new monument to you, which will give us life.

Kindness

Kindness does not give out gold stars, which is really annoying – or badges, or certificates or any kind of recognition that you are doing well at this. It should, because that would really help, but that’s not what kindness is for.Kindness is there to remind you that there is no good way to do this, there’s no magic formula that will allow you to tiptoe you way through this unscathed, like Indiana Jones calculating which steps contain the booby traps.

“You can’t go over it, you can’t go under it, oh no you’ve got to go through it”

Kindness doesn’t care if you’re strong of you’re capable, or an inspiration to others. Kindness is there to watch you do whatever you need to do. It wants you to be mean, and spiteful and full of rage. It wants you to snarl that this is not fair, it shouldn’t have happened, the loss is too great.

Kindness wants you to scream at people as they walk past your door that they cannot hide from your pain, that you will hold their hand in the fire until they burn.You won’t of course, because that’s not what you do, but kindness would let you.

Kindness would let you stay in bed for days, to eat pancakes until you couldn’t face anymore, to do nothing but read and read and read until you forget your own story.

Kindness would let your hair go unwashed and your pyjamas unchanged.None of this will help of course, and will probably make you feel worse, but that’s the point. It’s kind to let yourself do things that don’t help, that aren’t productive, that hurt.

You’re not supposed to cope with this – it is too much. Yes you can walk in the fresh air and eat vegetables and stay hydrated and get lots of sleep and sign yourself up to writing courses. You can talk and write and talk and write but the loss remains the same. Broccoli is not going to bring him back.

Instead, kindness is there to sit in the chair beside you, night after night, knowing that it would give anything to make this better, to take the pain away. It will sit, come what may, to remind you that whatever happens, you will not have to face this alone.

Kindness learnt that from you.

The Tsunami of Grief

How are you doing?  I don’t think I’ve ever been asked that question so many times as the last few months, because there’s nothing else to ask really.  So how am I doing?  I have no idea.

People send me things about grief coming in waves, or ship wrecks or any number of other water based metaphors but actually it feels like a tsunami.

I remember the Boxing Day Tsunami – watching it with friends in a very solid lighthouse built into the rocks on the coast of Devon.  It seemed surreal to be sitting so close to the waves whilst watching footage of their potential.  And yet here we are again.

The thing about tsunamis is the bit before the wave.  A monumental rupture happens, hidden underground, miles away and unseen – but the wave doesn’t come straight away.  First there is the drawback.  It’s the moment where all the water gets sucked out to sea, where the power builds.  It’s the part where the fish are left flapping on the beach and no one can quite work out what’s going on.  And it’s the part that people see.

When Fred died the overwhelming feeling was one of quiet and calm, another mother described it as ‘a weird sense of lightness’.  The anxiety and trauma are sucked away and you’re left with an empty beach.  It’s the empty beach that holds the funeral.  It’s where people turn up to look at the fish. A gentle space for you to catch your breath.

Because you know what’s coming, and you know that you are going to need to run.

The sheer overwhelming force of it is not something you can withstand, there’s no high ground, it can only be survived.

And what’s left is the sheer devastation, and there’s nothing you can do but look at it, or the missing pieces.  It’s impossible to know what to do, when everything that you know has been taken away. 

Cancer didn’t just take away my child, it took the rest of my life with it.  In the 10 months of his illness that was what my life became, and all that went before it slowly disintegrated.  Work became impossible, I gave my office back, I gave up hobbies, I didn’t see friends for months.  And for the nearly half a year required in hospital I have up my bed, and my home.  Like The Happy Prince, I gladly gave it all, but it means there’s nothing left.  People ask about getting back to normal but normal disappeared a long time ago.

So you’re left with wreckage, and bits of your old life scattered around you, and a massive, massive hole. In many ways, Covid has not helped this as even the flimsiest of things to cling to have also been taken away.  In other ways, it really has helped because they probably would have been swept away anyway, and at least I don’t have to see them being enjoyed by other people across the bay.

When JFK was assassinated, Jackie Kennedy refused to change out of her suit.  “No’ she whispered fiercely ‘let them see the horror’.  That is going to take time.  Time for the toxic waters to recede, and to recover from the sheer bloody exhaustion of it all.

So that’s where we sit, repairing, taking in the vast expanse of it.  “Just an empty room, full of empty space, like the empty look, I see on your face …” and nobody can bear to finish the next line.

Nobody else saw the shattering that happened out at sea, and people are suffering their own damage, but people come and sit, and look at the wreckage with us.  They don’t try to clear up, or concrete over or turn up with new plans.  We just sit.

I asked the person in charge of the churchyard what I was supposed to do about Fred’s grave.  The grass had died in the summer sun and it looked a raw ugly mess.  “You let it be a mess” he said, “until the spring, when we can look at how things have settled”

And so that is what we do.

What you don’t know about grief

I wrote this very soon after Fred died – but didn’t particularly want to share it. A recent conversation made me think of it, and the anger and the rawness that needs a place to go.


What you don’t know about grief is that it happens from the inside out. I know you want to see my pain, I know you think you want me to share it, but what you want is for it to be tangible, knowable, superficial.

I know you want to see me cry, because that is comforting to you, you know what crying is and you know what it is like to be sad.

That’s not what this is.

It is a hollowing out from the inside, it is an emptiness so deep that it may never be filled. This outside that you see is all there is. If this crumbles, there will be nothing left. I am an Easter Egg, shattered into a thousand tiny shards of chocolate, but the shiny foil still clings to the plastic package.

There is no drama, there are no fireworks. Yes, I step outside and yes I smile and yes I can talk about my child without breaking because I am already broken. What you cannot even smell is every scrap of strength it takes to look OK, the concentration required to put one foot in front of the other, to breathe in and out. The determination required to say I’m fine.

What I want you to know is that I’m stronger than you. No you don’t know how I do it. No you can’t imagine what I am going through. No you can’t believe how strong I am. That is your privilege. It almost sounds like you’re boasting. I didn’t choose this. I didn’t volunteer or sign up. I wish I was a coward, but I was not given that choice. You talk about me as if I were a superhero or a brave warrior but that is a fairy tale you tell yourself . If I am special, that means it won’t happen to you.

You think acknowledging my strength will protect you from things you didn’t choose. So I am stronger than you. I have been made to prove how much a mother will endure, how deep a mother’s love is. I am fearless because I have been made to face the worst fears you can imagine and seen them come true. Nothing can touch me now. My strength is scarred and beaten and forged in fire. My suffering is mine, and mine alone. They are precious moments that my child gave to me and they are not for sharing. So no, you can’t see me cry to make you feel better. Praising me won’t fill the empty cavern inside and it won’t protect you.

Don’t Look Down: Why children don’t fight cancer

I wrote a post last year called Billy Don’t Be A Hero: The War On Cancer.  Fred had been diagnosed with Leukaemia 6 weeks earlier and I meant every word – but maybe I didn’t.  Maybe I wanted to but deep down, I thought that it just applied to the other kids.  Not mine.  Because although I hated it, he really was a fighter, and so was I.  So we would get through this and I would carry on telling people not to talk about fighting.

If you’ve never met Fred, it’s difficult to describe his invincibility.  He was never ill, he was never cold, he never seemed to get hurt and when he did he didn’t seem to mind.  He was always looking to go higher, faster, 50% fearless and 50% utterly ridiculous.  So cancer was not going to get the better of my boy and one day, he would run inspirational summer camps for children recovering from illness, and they would marvel at his physical strength.

How we talk about cancer matters. It’s easy to worry about saying the right thing, the wrong thing, and often people end up saying nothing at all, which is the worst of all.  The language used usually involves wars, battles, fighting, bravery.  In many ways it’s odd.  We never say a child lost their battle against an articulated lorry, but cancer it seems is up for the fight.

I look back now on the things that people said when he was diagnosed: that he was a fighter, that he was strong, that he was tough enough, that if any one could beat this then Fred could.   People said these things out of love, and kindness and support.  They said these things because they were desperate to be helpful, desperate to say something when things were unimaginable.  Desperate to make things better.

Every experience is different, and some people do find that fighting talk helps, and there were certainly days when it did. All of these children are warriors and heroes and we need to celebrate that.  Sometimes you do need to feel you have to fight to find the energy to get through the day.  It gives you a power back when it feels like it’s slipping away.

There is a reason we don’t send children to war. If cancer is a battle, it is that one that nobody volunteered for, that no one understands and everyone would run away from if they could. It feels random and meaningless. To “fight cancer” is a massive generalisation – are we talking a scrap in a pub car park? a skirmish? whilst children are being sent into No Man’s Land with nothing but a bayonet and a tobacco tin for protection.

There aren’t any winners. It’s never over. Long after the end of treatment bells have been rung, the spoils of war can include amputations, long term health complications, PTSD and depression, not to mention the constant threat of the cancer returning. No, our children are not fighting cancer, they are the battleground. The cancer goes to war against the science: the researchers, consultants, nurses and the drugs. The only time I ever got even slightly snippy with our consultant was when she said Fred had failed on a course of treatment. I narrowed my eyes and used my best angry quiet voice to tell her that “No, Fred did not fail, the drugs failed”

I’m a lover not a fighter, and I’ve spent the last 14 years telling him not to fight.  The problem with fighting is that it feels more about the anger, and the hellscape that comes with it.  Sure, there’s a lot of that, there’s much more besides. Nobody can fight all the time, and fighting doesn’t always look like war.  The days, or hours, or minutes you want to lie under a blanket are as essential as the battle cries.  The trouble is, that focussing on the fight, can make you feel like somehow, you’re letting the side down, or sabotaging recovery.

The victory is not in fighting, but in enduring, showing up every day knowing that you have no choice.  The courage is not in fighting cancer but in living with it.  The Beads of Courage is a wonderful organisation that doesn’t give rewards for ‘beating cancer’ but marks every needle, test, tablet, anaesthetic, operation and transfusion.  It’s a visual representation of everything that has been withstood. What counts is not the willingness to fight, but the willingness to stand, with both feet solidly planted, and look cancer in the eye.

The boy who never gave a fuck about stickers, and laughed in the face of health and safety, triumphed.  His ‘fighting’ looked a lot like go-karting, and theme parks, and mini-golf and Halloween parties with friends.  It looked like laughter, sadness, fear, joy and most of all love.  That’s what keeps you going. 

And then he died.  To quote Michael Rosen in his simplest purity, “I loved him very very much but he died anyway.”

In reality, Fred didn’t really stand a chance.  The type of leukaemia he had didn’t respond to chemotherapy and marched on relentlessly, like an unstoppable force.

It was not that he didn’t fight hard enough. It was not that he lacked strength of character, or courage.  It wasn’t because we didn’t have enough faith in him.

He didn’t lose his battle, he was taken.  He lost the life he was supposed to have.  A life that was full of hope, and adventure.  We lost our child, our beautiful, kind and gentle child. 

And if there is a fight to be had, it is the fight to rebuild our life without him, to support his brother, now he has no one to fight with.  It is the fight to do whatever we can to make sure other families do not have to endure the same.

We have set up Fred Bennett’s Don’t Look Down Fund to research into cures and kinder treatments for Acute Lymphoblastic Leukaemia.  The name is in honour of his fearless, risk taking approach to his whole being, but also the way he lived with this illness, eyes forward, resolute and pure of heart.

Life with Leukaemia

Carry me home

There are many kinds of mother you can be.  Tiger mother, Alpha, Helicopter.  I’ve never really seen myself as any of them, and certainly tried to avoid a few.  If I had to classify my parenting style, I’d say that I carried stuff.  To give it a festive flavour, if this were a nativity, I’d be the donkey.  I’m actually surprised that ‘donkey mother’ has never caught on.

“Well if He is to bear the burden of the world, he had better be carried by me” – Jeanette Winterson

I carried my children for nine months, and then carried them around for a good while longer. I reckon I can still make a shepherd’s pie one handed and have the physio bills to prove it.  Fred never really liked to be carried much, so from an early age, there I was 10 paces behind him on his scooter carrying the coats, the bags, the snacks.  My husband, on the other hand, continued to carry him to bed each night, until he got so tall his feet nearly reached the floor.

I would collect him from school, only for him to run out and throw his things at me, like I was made of Velcro, before he ran off again. And I’ve been doing it every day since.  I’ve carried school projects, forgotten PE kits, and random sticks, scooters when the terrain got too rough.  I carry the passports, and the sun cream, the gloves and the hats.  I’ve lost count of the times I’ve forced Fred to take a coat, only to be met with “do what you like, you’ll be the one carrying it!”  And reader, I carried it.

That’s not even including the things I carry in my head.  I carry who likes pesto, who doesn’t like mash, who chose the film last, who needs which kit, who’s fallen out with who, who’s nervous about which test and who hates which teacher.  I know where everyone’s keys are.  I carry the troubles of my friends, and their secrets, the demands of my clients and still manage to remember my passwords – even though I never write anything down.

When I grow up I will be strong enough to carry all the heavy things
You have to haul around with you when you’re a grown up – Matilda

Someone once asked me what anxiety felt like.  I said I felt permanently as if I was in a very crowded bar, trying to carry a very complicated drinks order, but everyone kept taking things off the tray, and putting their empty glasses back.  I couldn’t get to my table and I couldn’t remember what everyone had ordered or I’d forgotten to order myself a drink; if I could just put the tray on the table and get everyone to be quiet and still for a minute, then it would be OK.

I’m sure I was not alone in this.  Last year I wrote a rather harassed blog post about the millions of pressures we are made to feel at this time of the year, from the stocking fillers to the PTA list on the fridge.  Although now I’d rather have an Elf on the Shelf. December is full of harassed (usually) women fretting about pastry and crying in car parks.

With Fred’s cancer diagnosis, the tray came crashing to the floor.  The room emptied and there were no more drinks.

And now I only have this to carry and there’s nowhere to put it down.  But it is so, so heavy.  It is not even a metaphor, it is a physical weight that makes everything compress and everything hurt. There is no way for me to feed it, or fix it, or think it into submission – only grip tightly and wait for the doctors and scientists to do their thing.

I ask him if he was worried or frightened about his treatment and he says no.  He says there is no point in worrying as I worry enough for everyone, as I always have.  And that is all that I can do – to carry this for him too.

I miss the noise, and the to do lists, now blood counts, medications and hospital appointments have replaced them.  The Christmas decorations are up, the movies are on the planner, but nobody has quite worked out what to do.

It’s a lonely place to be, but I am not alone.  There are countless parents like us, trying to hold, and there is untold strength in numbers. My husband and I hold each other up as much as we can without toppling each other over and we are surrounded by people who quietly sweep the broken glass from around our feet.

Although nobody can bear the weight for us, we will always be grateful to the people who bring strength and solace to our door.  There are people who quietly listen, even when there is nothing to say, and the wisest of women who bring nourishing things to eat, calming scents and countless other things to ease our aching minds and limbs.  And biscuits – lots of biscuits.

And so we celebrate a Christmas filled with gratitude and love – hopeful that next Christmas will be brighter and lighter.  In the meantime, all we can do is stand beside him and carry the coats.

Get down from there – life with childhood leukaemia

A month ago today, I was sitting in Regent’s Park, reading a book, drinking coffee.  I had an evening at the theatre planned.  For the first time in years I felt that everything was under control. I’d spent the previous evening watching Barbra Streisand.

I would never to make it to the theatre.  6 hours later I was on a train, hurtling towards the hospital.  We had been asked to take our 13 year old son to A&E, after some routine blood tests for suspected glandular fever.  An hour after that, my husband would meet me in the car park to tell me that our son had leukaemia.

Just like that.  My wild, reckless, ain’t no mountain high enough, just a flesh wound, boy.

To say that there were no words to describe the feeling sounds trite, and insufficient, but actually there was no feeling.  There was no scream, no collapse, no soundtrack to the moment our world imploded.  Just a quiet boy on a hospital chair and the distant roar of the wave that was about to hit us.

Wrote a note in my diary on the way here, simply says “Bugger”

“What’s my job?  To keep you safe.”  I had said these words so many times. Fred had entered the world with a point to prove, and spent his life so far trying to prove it.  From the day he first rolled over, he was desperate to find the edge.  If he was a film, the warning would say “may contain scenes of mild peril” I couldn’t stop him from climbing walls, furniture, buildings, but at least I could make sure he could do it safely.  I couldn’t stop him from going too fast but I could make sure he always wore a helmet.  The day he learnt to ride a bike, he asked if he could now do stunts.  He is the boy most likely to get caught on the school roof, to ride down a hill in a wheelbarrow, to climb too high in the tree.

In moments of real crisis, years of anxiety can turn out to be your greatest protection.  “Oh goodness, it’s every parent’s worst night” people would trot out.  No, it really isn’t.  I can honestly say that I have imagined far worse than this.  The freak, tragic, poignant accidents that were waiting to drop at any minute.  The knitting needles, power tools, mobile phone chargers, knives in dishwashers and open bodies of water that have all been navigated without incident.  The Final Destination producers were amateurs.

But in the words of Jospeh Heller, ‘Just because you’re paranoid doesn’t mean they’re not after you.’  All this time I had been looking the wrong way.

And yet again, they were about to raise the number of missions. Within 24 hours we had been admitted to Birmingham Children’s hospital and treatment had started.  No waiting for test results, no periods of uncertainty but in with both feet, which is very much his way.  And then we were passengers – completely surrendered to the doctors, nurses, support workers who carried us through the next few weeks. And the circle behind them, who fed us, did the school run and answered in the middle of the night.

It is strange what stays with you, and what is too hard to bear.  For me, it, was an ultrasound on his heart.  Ironically the least invasive of all the tests, it wasn’t even to show anything, just a baseline to compare later.  I stood in that room and was instantly transported back to the first ultrasound I had ever had, the first time I had seen an image of that heart and the first moment I had become his mother.  I had sworn to keep him safe and now I had to swear it all over again.  My husband did the next one.

There are so many moments over the last few week, that I have likened to having a newborn baby back in the house.  Due to the steroids, he’s demanding to be fed every 90 minutes (or every time I sit down) and can’t sleep.  And then there’s the overriding feeling of complete fear and an inability to see what the future looks like.  Rather than NCT coffees, I’m now a Cancer Mum, which is a group literally no one wants to be a member of, but full of unbelievable strength.

We have been told the outlook is very good.  Apparently ALL is a good cancer to have, so that’s nice.  It’s the most common childhood cancer, with 400 children being diagnosed a year, but the treatment is long and arduous.  It will be three years before it is finished.  And just like a new mother trying to imagine life with a toddler, it feels a lifetime away.

And my baby is taller than me, and stronger than me.  He enjoys physical affection about as much as a wet cat, and openly mocks me throughout approximately 78% of the day.  I talked to him before writing, because this is not really my story to tell.  This is not how these years were supposed to be.

Like storming a beach on D-Day, you wonder how you can keep going when your arms been shot off, but when the bullets are still firing, there is nothing left to do but put your head down and keep on running.