Tag: resilience

Navigating grief and living loss at Christmas

A festive love letter to my mum

Editors note: I wrote this before Christmas but never hit publish because life. Today is my mum’s birthday. So it feels right, to honour her and the life lessons she taught me.

Often, you can’t see the space somebody takes up in your life, until they are gone. 

My mum is still alive but dementia has irreparably changed from the person she was. I feel the space my mother left most deeply at Christmas.

As a child I loved Christmas fiercely. I was lucky. Lucky in a way that you only know in hindsight. When something is shattered beyond repair and only then do you truly comprehend how beautiful it once was.

My family was complicated, and yet I never doubted that my parents loved us. 

The magic in Christmas came from having a mum that loved me. She bought the presents and wrapped them. She decorated the house. She booked the festive shows. My dad always bought the food and cooked an epic roast. But because of work schedules, the vast majority of the festive labour was done by my mum.

Only when my mum was gone did I realise the Christmas magic wasn’t an innate part of the festive season. It was generated by her invisible labour behind the scenes.

This was an act of quiet heroism. My mum made Christmas special despite her complicated feelings around this time of year. 

On the 21st of December 1982, my older sister Sarah was disabled in a hit and run. My parents spent Christmas in intensive care with Sarah. The doctors told them to say goodbye for she would not live to see the new year. Miraculously she survived, disabled but alive. But my parents were left alone to carry the burden of what had happened and mourn the unlived life Sarah could have had.

When I was younger I was oblivious to the significance of the date. But as I grew older, I could see as the dark lengthened and winter began to bite, my mum would coil tighter and tighter. Steeling herself against the memories flooding back.

I want to ask my mum how she made Christmas so lovely when her heart was breaking. As somebody who has my own traumaversaries now, my mum is one of the few who would be able to understand. I want to know how she navigated the day-to-day demands of parenting while holding her trauma.

I want to talk to her, as I was never able to, mother to mother about the invisible labour of women. How it feels to be glue holding the family together and what it costs you. But it’s too late to have that conversation. It will always be too late. 

I hope all of the tasks she did at Christmas were not just for us, her girls. I hope that some parts of her were able to find joy in the Christmas rituals. That it helped her to keep the darkness at bay.

For the past six years since my sister Lauren’s accident and my mum developed dementia. Christmas has been excruciating. Every year the sheer awfulness of Christmas shocks me again like being dunked into freezing water. Suddenly my family was smaller, hollowed out. Now it is just my dad, my older sister and me trying not to look at the spaces around us.

When friends would tell me they love this time of year. And, I would think, some of you have never experienced life-shattering trauma and it shows.

If I didn’t have children, I would book a holiday somewhere warm and tried to forget what day it was. But my kids and my husband love their cousins and their grandparents. They find true joy and magic in Christmas. So in a parallel to my mum 40 years earlier, I stay and try to make something beautiful out of the bleakness.

For the past couple of years frenetically I would try and feel the joy around Christmas. It was as if the complicated feelings I had around Christmas weren’t acceptable and I needed to change them. The harder I worked the worst I felt. I want to put my arms around past me who was feeling such deep grief and say it won’t always feel like this’.

This year has felt different. In part because of the deep work I have been doing in therapy around grief and living loss. I have come to a place of acceptance about what is. But also because I have given myself permission to do Christmas my way. I take part in the festivities I enjoy. I prioritise the bits of Christmas my children enjoy. And I sack off the rest. Goodbye forced cheer, hello radical acceptance of what is.

This year an unexpected gift of this new attitude is that I feel intensely connected to my mum at Christmas. To the long line of women who came before her. As I walk round the dark streets with my kids looking marvelling at all the lights, I see her. As I hang brightly coloured stars and baubles, I hear her. As I smuggle presents into the house thinking of my kids excited faces on Christmas day, I feel her.

I will never stop wishing that my mum was here, as she used to be. There will always be an empty space next to the fire where she should be watching her grandchildren open their presents. She is now too ill to leave the nursing home so on Christmas day we will visit her. This holiday will always remind me of who isn’t here and who is irreparably changed. It will always be bitter but there are moments of sweetness mixed in too.

And as I fill the stockings, I think about how I am in a quiet way honouring my mother. Who knew more than anyone how to light a candle in dark times. 

I am and I will always be her daughter.

Nothing gold can stay

For my wonderful beautiful, clever and courageous sister. Thank you for giving me permission to share this story.

Here’s how it goes.

You are living your life. Maybe you’re happy immersed in the bubble of you and your new baby. Maybe you’re weighted down with such despair you imagine your skin can barely contain it.

Then it happens: you see the blur of the car mounting the curb; you overbalance and then there is nothing but stars; trauma falls from the sky. And nothing will ever be the same again.

The first time trauma came for me and mine I was 4 months old.

The second time I was eighteen.

The third time, a couple of months ago.

One minute I was lying in bed luxuriating in a rare lie in. The next I saw the message.

In that hour and half car journey to the hospital, I prayed my sister would live. I already knew that OK would be far too big an ask.

I felt immense guilty. We’d fought viciously a month before. Don’t die. Don’t die. I chanted at each rotation of the wheels. I could not bear that she could die thinking I hated her.

When I arrived, they’d already taken her down to theatre. We were told 7 hours and two operations awaited her. In actuality it would take 18 hours of operations and be two days before we saw her again. Two days of the minutes stretching like hours. Two days of making phone calls to deliver the worse news because somebody had to do it. Two days of sitting, waiting for the hospital to call, as family and friends arrived.

Even in the midst of such utter bleakness, there were moments of grace. The surgeon and anaesthetist had operated on her neck for eleven hours without a break. They knew that tomorrow at the crack of dawn they would get up and do it all over again on her back. Both of them after scrubbing out took the time to call my parents and tell them how the operation had gone.

It takes a blink of the eye for a person to be smashed apart. But even with all the technology and expertise we have nowadays, the surgeons couldn’t put her back together again. Not as she was.

When we saw her for the first time in intensive care she was almost unrecognisable. Unconscious, swollen, more wires than human. The hiss and beep of the machines surrounding her, keeping her alive.

We stood vigil my mum, my dad, HWSNBN and I our tears splashing on her skin. As if our presence would make a difference when the damage had already been done.

There’s a room they take you into within intensive care: the relatives room. But really it should be called the shit news room. The consultant and nurse sat down opposite us and asked in a practised way what we knew. I realised then that for us this was a moment we would never forget despite how we might want to. But to him, as compassionate as he might be, this was simply a part of his day – that long ago he’d been on a training course on how to break bad news and he was putting those skills into action.

Each sentence was like a sucker punch to the solar plexus. I could barely absorb it before another blow came.

He told us that the break in her neck was very bad, the spinal cord almost completely severed and contorted.

Over the next week they would try and take her off the ventilator and force her to breathe on her own. If she was lucky she would be able to breathe on her own and talk.

If she was very lucky, she may in time regain some movement in her arms.

But she would never walk, dance or run again.

Lucky? Was all I could think. This is fucking lucky!? But of course these are the small increments that make up a life. A twist to the right and she would, after much rehab, walk out of hospital. Another angle to the left, or if my parents hadn’t been there and there would no point calling for an ambulance at all.  Lucky.

History repeats itself, with an extra cruel twist of the knife just for kicks. 34 years ago my older sister lay in intensive care in a coma. Her life forever changed after a traumatic accident: her brain was irreparably damaged but her body would be fine. Now they told us that my younger sister’s body was irreparably damaged but her brain was fine.

If my life was a book, I’d cast it aside – too unrealistic and far too bleak. Because after all that effort to rebuild here my family was again.

Another freak accident.

Another daughter in intensive care.

Another traumatised mother (this time me).

Another baby granted special permission to play among the machines.

If you’ve never had to sit with somebody you love more than anything as they come round from an operation and listen as they desperately fight with their breathing tube to mouth at you ‘I can’t move, why can’t I move’ – I envy you. God I envy you.

In those early weeks I kept thinking: I did not want this for her. I did not want this for my baby. As if I was toddler who asked chocolate pudding and instead got fucking tragedy in a pot. I almost wished I believed in the great sky father so I could march up there and demand her a refund. ‘You see, I think you got this wrong. Because she deserved the life on the beach in Honolulu and instead you’ve given her this shit sandwich of a life.’

Nothing about this was fair.

Every day I’d ring the buzzer outside intensive care and wait to be admitted. That was the worse, the not knowing how she would be. The shock of that day when I walked in and saw the space where her bed was and thought she’d died and they hadn’t told us.

Every day I’d see the other families sitting shell-shocked outside. Nobody starts their day thinking it will end in intensive care. We all know at a deep level that bad things happen unexpectedly to people like us, to people we love. But there’s a difference between knowing it in the abstract and living it. Trauma peels back the veil and you realise that nobody is safe. Not your sisters, nor your husband, not even your baby.

The shock left me reeling. After everything my family had been through was this really happening again? It felt a little bit like that instance right after you hurt yourself badly. Before the pain fully arrives and you’re still wondering did that fucking really happen? Except this period lasted weeks instead of seconds.

That’s the worst thing about trauma. You cannot prepare for it. It simply arrives unheralded from leftfield. By the time you see it coming, it’s already felled you and you’re lying gasping on the floor.

The list of things I will no longer take for granted grew. Breathing. Coughing. Being able to brush my tears away. The feel of my baby in my arms. Getting up. Walking.

Driving home from the hospital along the seafront tortured me because I knew she would give anything to get in her car and drive far, far away.

If you told her before it happened that she would spend six weeks bedridden staring at the ceiling, barely able to move her arms – she would have said I can’t. But she did. Again and again I was left amazed by her resilience and her courage in the face of unspeakable horrors.

I was also surprised that even in my moments of deepest pain there was joy too. When she was stable enough to be taken off the ventilator I felt like punching the air in relief.

I treasured those moments sitting and laughing and crying together as I fed her skittles. There was nowhere else I’d rather be.

The nurses in intensive care and on the general ward were angels. They made an impossibly shitty situation that much less shitty with their kindness.

On my first day away from the hospital after weeks of going in every day I knew there was one place I wanted to be. We went to the sea and I lay on the stones and cried and cried as Nibs crawled around me followed by HWSNBN. There was something immensely comforting about watching the waves crash too and fro on the shore. They had seen aeons of pain and joy before. Nature was indifferent.

Quickly life settled into a new normal. In the morning I sat with her. Sometimes she wanted to talk. Sometimes we cried together. Then in the afternoons I’d go home and see my baby.

Stuff which I had found hard or frustrating about motherhood was now the best antidote to the miasma of illness and pain I’d spend the day breathing in. Days after it happened as I lay unable to sleep Nibs woke crying at 1am. I went and took him into bed with us. Lying there in the darkness feeling the sweet susurration on his baby breath on my face was the first time I’d felt OK in days.

The comfort Nibs, my baby, provided was a double-edged sword. I worried incessantly about how this would affect him. Family and friends stepped in to look after him so I could spend time at hospital. But his mother had been replaced by crying husk of a person. I knew from my training and from my own experience that this could not fail to affect him.

One of things I still find hardest about dealing with trauma is the intense loneliness. I felt as if I’d been branded by a scarlet T. I didn’t feel part of this world anymore but permanently outside it. I’d stare at people wondering how they could walk around so carelessly as if they were invincible when we all so desperately fragile under our skins.

Messages poured in, some of them so lovely they made me cry. But eventually the weight of them when I was juggling hospital, Nibs, and supporting my family felt overwhelming. I felt and still awful for not being able to respond to some of them. It was just too hard.

Some people told me, out of love I know, to be brave. As if this was a test and a stiff upper lip was preferable to weeping on the floor. They didn’t yet understand that when tragedy strikes all we can do is gut it out as best we can.

Then there were the people who acted as if all this tragedy was catching. And simply disappeared. I don’t blame them. There were times when if I could have ran far away from my own life I would have.

In one fell swoop my family had become the winner of the shittest game of top trumps ever.

The only thing that helped was spending time with other people who understood. There is a brotherhood of pain. The same night she was brought in in the bed opposite a young guy with head injuries arrived. Our family knew better than most what they were feeling. Every day we’d talk them and see how he was doing. When he was transferred to rehab a couple of days before she went to Stoke Mandeville I felt bereft. I still think about him and this family often and wish him well. Even though life should have taught me the futility of wishes by now.

Trauma is a gift that keeps on giving. It’s too big to be absorbed in one go so every day a new wound opens as a realisation hits:

My baby walking for the first time. Owh

Going to my parents house and seeing where it happened. Owh

The ‘on this day’ feature on Facebook. Owh

The good thing about being through something like this before, although every experience is different, is that you have a rough map of the landscape. Ah, this is the period where I wonder how I’ll ever be able to leave the house again without worrying that the sky might fall in.

The bad thing about being through something like this before is we recognise the comforting lies we tell ourselves.

At least now the worst has happened, it won’t happen again. (It can and it will. We cannot inoculate ourselves against tragedy).

It hurts so much maybe my heart will simply stop with the pain of it. (It won’t, treacherous thing that it is.)

It’s different now to how it was in the beginning. I am able to have days sometimes even a week where I feel almost normal. But more commonly are the days and weeks where I feel so devastated I wonder that I am still standing. One of the hardest things is that she isn’t down the road anymore. I can’t pop in and spend an hour with her. I miss the reassurance of seeing her daily, more than I can say.

Somedays I wish I could just crawl into bed and never leave it again. But for Nib’s sake I keep keeping on. I go to therapy. I read stories to my baby. I kiss my husband. I hold tight to those fragments of joy that come my way like rays of sunshine through the clouds.

I am not OK. But I know I won’t always feel like this.

Sadly Option A where nothing bad ever happens to anyone I love is off the table. So I am just going to have kick the shit out of Option B. And I will, have no doubt about that.

It could always be worse. Remember that.

(But god, did it have to be this fucking bleak?)

 

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