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Life and loss in lockdown – Fred’s story

We were the kind of family that fast forwarded through the sad stories.  In 2019, we watched Celebrity Hunted on Channel4 for Stand Up To Cancer, and would reach for the remote as soon as the ad break started “Who watches these?” we would all shout, and text a donation to assuage the guilt. “One in two people will get cancer in their lifetime” the ad break said.  Thirteen year old Fred turned to his brother and said “I hope it’s you not me, I don’t want it” and we gasped in outraged horror.

A couple of months later, Fred was diagnosed with Acute Lymphoblastic Leukaemia, almost overnight.  Apart from chicken pox and the odd ear infection, Fred had never been ill before.  He had been sent home from school on a Friday afternoon feeling unwell, and by Monday night we were in A&E receiving his diagnosis.

Our world ripped apart, just like that.  We were immediately transferred to Birmingham Children’s Hospital and treatment began the next day. 

You never think it will happen to your family until it does.

Suddenly we were locked down.  Our holiday was cancelled, Fred’s central line meant he could no longer go swimming.  We were not allowed to travel anywhere more than 30 minutes from our hospital.  I carried a thermometer in my handbag to check for temperatures.

Fred was a grubby boy.  His primary school teacher once said she had never known a boy so consistently dirty – muddy knees, grass stained shirt, dirty fingernails.  Suddenly we had to find a way to keep him clean.  We kept hand gel by the front door and all washed our hands 10 times more than before.  We had to check nobody was feeling ill before they visited.  We avoided crowded places and enclosed spaces.

I ran my own business but pretty much stopped working overnight.  I tried hard to get things  done but in reality, Fred’s treatment was a full time job and nothing could be planned in advance.  My husband’s company was supportive and allowed him to work from home.

After three months, Fred was entitled to Disability Living Allowance, our only benefit.  Our ClicSargent worker sat with me in the hospital and went through the lengthy application.  We sat and listed every drug, every side effect, every treatment.  Every way in which our lives had been transformed forever.  Every way in which Fred’s life was not what it had been.  I longed to write “my child had cancer” in sharpie across the front and was furious that they needed more than that for £600 a month.

By the time Coronavirus began appearing on the news, Fred’s situation was more precarious.  His cancer had not responded to chemotherapy, and he was waiting to receive Car T Cell therapy.  Initially, people’s anxiety about the virus only made us feel safer.  Welcome to our anxious world. Although Fred was high risk, at least everyone was washing their hands now.

As Coronavirus marched higher up the headlines, it really was the least of our worries.  Fred had a seizure which sent him to ICU, just as ICU beds were about to be in short supply.  We worried that the Car T Cells might not make it over from the States. We removed our younger son from school so that he wasn’t putting any of us at risk. 

As the rest of the nation wrestled with Joe Wicks and fronted adverbials, panicking over loo roll, we tried to make sense of how these rules could possibly apply to us.  We ran through the hospital equivalent of the fox, the chicken and the bag of grain as we tried to work out how we be a family when our younger son was no longer allowed in the hospital.  All of the things which had made hospital life bearable – fun even – were taken away.  The visitors, the communal areas, the school teachers, the youth workers, all no longer allowed on the ward.  The parents’ accommodation at the hospital closed.

Fred tested positive for coronavirus shortly afterwards, although he had no symptoms.  We were moved into an isolation room for 10 days.  Due to his leukaemia rather than Covid, we were told at the time that his condition was life threatening and he could deteriorate rapidly.  My husband would be allowed to see him, but if he did he wouldn’t be able to leave the room either.  So that’s what we did.  All three of us, in one hospital room unable to step outside the door.

Fred rallied, we emerged and were transferred to Great Ormond Street for his Car T Cell therapy.  His brother was allowed to sneak if for an illegal visit for half an hour before he left.  That was the last time he saw him.

Fred died on 3rd May 2020.  During the three weeks we spent at GOSH we did not see the doctors’ or nurses’ faces from behind their masks, we were allowed no visitors.  We spent Fred’s 14th birthday by ourselves, too tired for Zoom calls.

His funeral was held just as lockdown was starting to lift.  Only 10 close family members could attend an outside burial, no one could come in the house.  However, people lined the streets as his motorbike hearse drove through the village.  His brother and a group of his friends rode their bikes behind him.  People left messages and memories on the tree outside our house.

We were left alone to grieve.  Like the WH Auden poem, all the clocks had stopped.  Everything was spoilt.  There were no parties, no holidays, no barbecues, no sports days.  Just quiet.  It felt like the world had been put on hold, just for us, and just for him.

I vividly remember, weeks before, sitting in Fred’s hospital room watching Rishi Sunak announce his emergency measures.  These were unprecedented times. It was unthinkable that people could be expected to take indefinite unpaid leave overnight.  This unforeseen crisis would have devastating consequences on families through no fault of their own, and they needed the nation’s help.  The emotional fall out should not be underestimated. It brought into sharp focus that this was exactly what had happened to us 9 months earlier.  Our life had shut down overnight and there was no rescue package, nor for any of the other families on that ward.

We were lucky enough to have incredible family and friends.  They paid our mortgage, bought us food, tended to our garden.  They’ve left things on the step and invited us into their gardens, they raised money to provide us with some security. 

I hope that over the last 6 months we have all learned that we are all just a moment away from the unthinkable. But as lockdown returns, and we all worry where we will be for Christmas, we are left knowing that will never happen for us.  Our lives are forever changed. 

We can only resolve to make sure that other families are not left to cope alone.

We have set up the Don’t Look Down Fund in the hope that more children will get the chance to live the life they deserve. Fred’s medical team said that they still don’t know why some types of leukaemia don’t respond to standard treatments. The money raised will fund research into finding new cures and treatment plans for refractory ALL. We also would like these new treatments to be kinder to children, with less short- and long-term side effects than existing chemotherapy.

Snow Day

Fred always loved the snow. Not an inch of it went unrevelled, or unrolled in.  The days when he woke up to snow were the greatest of joyful gifts.  On Christmas morning, he was remarkably patient, or at least capable of quietly eating chocolate and feeling presents until we were ready to get up.  But these were the days when the excitement would burst over.  The logistics, and negotiations, would begin from the minute he opened his eyes.  When he was little, it was how soon he could get out in it and where I had I stored the waterproof trousers.  There was also Arthur to factor in, who loved the snow but hated the cold so he was on a time limit.  So garden first, sledging later. The hill in our village is top sledging material, but there needs to be careful timing for maximum snow and maximum friends.  

As he grew older, negotiations turned to how early he was allowed to call on friends, how long her could stay out and how much he could be trusted to be sensible.  I liked to tag along at some point in the proceedings too, partly because I loved the snow but secretly in case I needed to the air ambulance.  Eyes bright, cheeks red, jumping up and down with the cold, or the excitement.  There was the year that his friends turned up with a tin bath that three or four of them could sit in.  Treacherous enough but Fred decided what it really needed was a ramp half way down the hill.  I can still hear the squeals as they took off, only to thump back down and keep careering down the hill, with much shrieking and ageing on my part, attempting to sledge down at the same time.  

The added glory of these days was that he would return, triumphant, joyful and most importantly, exhausted.  Part boy, part labrador, it took a Herculean effort to wear the child out.   Running up a hill all day in the snow was just about enough.  There is no more satisfying feeling as a parent than witnessing utterly worn out children.

And so now, what of the snow?  We awake to see the ground covered and the flakes still falling.  It’s crisp layer only seems to amplify the silence in the house, a soft blanket of sadness.  Arthur is excited, of course, but in his own way that takes everything in his stride.  He’d already quietly arranged to go out with his friends and it would be business as usual until that time came.

These are the days that hit us the hardest, not the big occasions and festivals that we brace ourselves for non in advance, screwing our eyes tight and holding our breath until they pass.  No, these days, that were once an unexpected delight are now a blow to the back of the head.

There is a sacredness in the snow, just as there always has been.  For just a while, everything is clean, and simple and quiet. It soothes me to know that we embraced every school closure, every cancelled plan, every excuse for hot chocolate.  A day of snow is a day for things to come to a screaming halt and lean into the knowledge that these moments are fleeting and precious, that the world can wait awhile.  The snow comes, but soon it will melt away, or turn to ice or mud or somewhere in between.

So for now I walk early in the morning, before the sledgers are out, but late enough to see the paw prints, when the sky shifts from a watery wisp to a celebratory tropical blue., when the sun is beautiful even though it doesn’t have the strength it will one day have again.

I build Fred the world’s smallest snowman by the cross that marks his grave, and try and rescue the frozen tulips.  I breathe in the icy air, hoping that the shock of it will dull the pain in my chest, or at least give me another excuse for it.

Because the snow is here, and the world can wait.

It’s coming on Christmas

“It’s coming on Christmas

They’re cutting down trees

They’re putting up reindeer

Singing songs of joy and peace

I wish I had a river I could skate away on”

Joni has been my Christmas tune of choice for a while now. Not for me the shrill & grating Slades and Wizzards. I mean there’s George, obviously, that goes without saying, and Buble will always get a free pass.

However it has to be said that I’ve always preferred my Christmas in a minor key.

Christmas is so often about the gaps, the ones we try and mask with tinsel and hope that the dim light of the tree means we can’t see too clearly what is missing: the people we have lost, the life that we ordered. We sit in stillness hoping that the smell of Christmas spruce and spices will let us take stock, to see what we have and honour what is vital.

And yet, how do we begin to honour the gaping wound that has been torn in our lives. It is too soon for melancholy, we can’t take care of our scars when we are still bleeding.

We will do what we can. I pick through the ornaments for the tree, things that I took from home when my mother died so she would always be here at Christmas. Alongside those, the ones I bought every year for my children so that, decades from now, they could take them to their own homes – a piece of me and my love for them.

So many tiny gestures and traditions that would be my legacy.

It wasn’t supposed to be this way. They were supposed to be memories of me, not of him.

Everything is out of place.

Yet we make decisions, picking our way through hoping to find a path with the least thorns to snare us.

Two stockings hang by the fire but only one will be emptied with relish on Christmas morning. We will cook pigs in blankets, his favourite, but we will only need half as many. We will leave a trail of golden coins down the stairs but he won’t be up before his brother to swipe every other one and eat them before anyone else is awake. His share will be eaten by someone else, or lie in a drawer until about April.

This Christmas, and every Christmas.

I wish I had a river I could skate away on

A Christmas Carol

I’ve known so many Christmas Carols, from The Muppets to Owen Meany.

“Which ghost are you?

Are you the one that reminds me of all that I have lost, who brings me stories and sings me to sleep? The one who reminds me that once there was love with all its fierce strength – that once I was whole.”

She smiles and nods, sitting back in her chair, reaching for a biscuit. “come sit next to me and tell me what story you’d like me to tell. Lay down your head and let me run my fingers through your hair. Sleep little one and rest awhile”

And her hands smell like lemons and rosemary, and feel like they are cared for, because they deserve to be, and because they have important work to do.

But no, you are not her today.

Instead you are the noisy unpleasant child that jumps up and down in front of me. Not my child. Not my funny, lively, joyful boy. Someone else’s irritating little brat who has worked out that exact pitch of noise to make my teeth hurt – the verbal equivalent of a plastic trumpet on the front of a magazine. The child who clambers on top of me, pawing at me so I can’t see what I’m doing, can’t speak, can’t breathe, crushing the energy out of me.

My skin crawls with the closeness and the sticky, sickly breath.”Get off me, just leave me alone.

I need some peace””No” he yells, half squawk, half whine “I don’t want to. Carry me, carry my toys, fetch me a snack, turn on the TV then sit there. No I want that cup, no I want some of yours”

There is no escape, not even the bathroom is safe. This child will never give up, never exhaust itself, never be silent.

Yet it is ghost of things yet to come that I fear the most. The silent one; the one where you sit, frightened, anticipating the scream which never comes.

This ghost with its long, emaciated fingers does not show what might be, it shows what will be, and what will not be. There is no redemption, no Christmas morning where we throw open our windows with relief and shout “God Bless Us Everyone”

What has happened has happened. We will sit in terrifying silence watching flickers of things that cannot be” birthdays, weddings, children, holidays, ferocious rows over inconsequential things and laugher over jokes that were sown decades before.

He cannot show us these things.

These three ghosts are my constant companions now, and I will sit with each in their turn.

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.

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.