Growing Around Grief

A little girl, sweet, bright-eyed, sidles over to me. Her mum kindly lets me know that she wants to say hello to the baby. Thankfully, Trispop is a friendly chap and reciprocates shyly. They smile at each other for a few moments, then the little girl merrily glides back to her mother.

A pretty, athletic older girl in skinny jeans and trainers, 12 or 13 maybe, long hair down her back, animatedly chatting to her mum.

Two siblings in the playground, attempting the slide that’s intended for the oldest visitors… no words are needed, only a glance of “come on, let’s do it!” and they are off together. Moments later, the younger is hurtling down the slide followed quickly by the elder. They run off, giggling, a little knot of sisters together.

For a moment, each time, I see Cleo. The lift of joy once so often experienced by her presence is replaced by a sad smile. And then, beyond my control, I wish so much for each family I see that it won’t be them, it could be them, it might be her next, little do they know…

This sequence happens often.

My inner drive to fundraise is then reinforced. We just have to keep trying. Her daddy Alex and I have put on a few online Facebook live concerts recently, during the pandemic-related lockdown. It’s been really nice to have something creative and purposeful to work on, though each performance really knocks us out emotionally. I mean, why wouldn’t it? We’re performing… to raise money… in… the name of… our daughter, who died. That’s… that’s… big. Our hearts are invested in each note we play, we dig deep and we play for her, for every child, each family, and we hope beyond desperate reason that the money we raise might help… might make a difference. I don’t want anyone else to be next.

We miss Cleo’s presence so very much. But what is it that’s missed? It’s not just the individual, or the future once anticipated, that is lost. Loved ones are part of the very fabric of our lives, leaving a hole that can’t be darned or repaired. The whole structure of my family has changed, the dynamics between us all. Cleo was the mediator, the glue between her siblings. They’re doing so well to forge a new way of being together, but the edges are still sharp when they squabble without her soft moderating kindness. Not that she didn’t take sides, she did, but Cleo instinctively knew who was most in need of her defence.  

As with the ‘custard cream’ transformation, I recognise that I am now transformed. Sadness is part of me. My emotional responses are numbed. Tragedies happen, and I am no longer moved like I once was. I notice it. Listening to my emotional responses no longer tells me anything new – I feel nothing more, only consciously. Conscious mind, informing me that I should feel something, but I don’t. I laugh and smile and I do take pleasure in my life, while hurting constantly. The metaphorical bucket is full and I feel emotionally colder now, but it is possible to simultaneously both live and suffer.

Dr Lois Tonkin’s ‘growing around grief’ is a psychological model of grieving that I find helpful. Once, I used to teach it from a theoretical perspective. Now, I teach it from lived experience. It is a tool for talking about the ways in which grief is not something we get over, or something that diminishes with time, but rather something that our life grows around. Why would we want our grief to go anywhere? It contains our memories, our experiences, our love. I don’t want to lose that grief, but I do want to go on living. As Dr Tonkin explains, “living with the losses of life is not so much about getting ‘over’ them, as finding ways to live with them, and live a happy and full life that includes them. Grieving is an experience of making sense of our losses, of getting adjusted to a different life and different expectations; of growing around them.” I relate to this so well, and it helps me to sustain a healthy perspective. We are fortunate beyond words to have our baby – he is a beam of twinkling fun and happiness in our lives and has helped us to cope and to reconfigure our family, while ensuring Cleo remains alive in all our hearts. We talk to him about her. He knows her face in photos now, even those he hasn’t seen before. He will grow up to love her and to wish she was here, just as we do. He calls her ‘Kylo’; custard creams are ‘Kylo Cookies’. Who could resist smiling, even if their heart is still sad?



I’ll get to the point – it’s Cleo’s birthday on Friday. She should be 12. Not yet a teenager but certainly in possession of enough sass, sparkle and secret giggles to make it clear that adolescence is on the horizon. She’s always on my mind, of course, and I have begun to get masochistic enjoyment out of the painful squeezing of my heart whenever I notice it. But, as a birthday gradually looms (what a terribly sad thing that is, for a child’s birthday to ‘loom’) and I find myself compelled to thoughts of parties, cake, presents, joy, we find ourselves once again having to work out how to survive the day without Cleo at the heart of it all.

I rather enjoy fantasising about what Cleo’s birthday might have looked like. She’d be pretty annoyed that celebrations would need to be curtailed due to this pesky virus, though stoic. No doubt her Trump assassination plans would also now extend to PM Johnson – she was such a peaceable and loving creature, but Trump brought out a justice-seeking killer instinct that I was supremely proud of. I imagine that she’d make the very best of a lockdown birthday, What’s Apping all her mates, designing her birthday cake (she always talked about the one I made for her 7th birthday which had layers of caramel and chocolate cake, that one really stuck with her!) and being characteristically modest about her birthday gift wish list. Lovely girl.

Last year, the first birthday without Cleo and so soon after her death, we ran away, as far away as we could reasonably go. It was terribly hard, but we did get through the day with some shards of happiness – dammit, we were, are, a happy family. This year there’s not really anywhere to retreat to. Maybe that’s a good thing, I don’t know, I’m not overthinking or making any ‘plans’ (planning is banned in our house these days, far less painful when things have to change. We only aspire. Much safer).

I’ve called this blog post ‘Punctuation’. This is partly because there’s been so much emphasis on home learning/ home ed during lockdown, thoughts and opinions shared on the well-being of the nation’s children during the strangest of times. Like any family, we have done our best to juggle all the competing demands of work and learning. The measure of whether or not I feel we have done a good enough job is ‘are my kids ok?’ And they are. They already battle every day with a dimension that is mercifully rare; also the worst possible thing that any family can experience and endure. Lockdown is nothing. It barely moves us. Being able to stay home, not have to face the cheery, quickly-forgetting world and all its demands – what a bonus for us, ha! Big sis and little bro #1 miss their friends, but they still keep in touch with enough balance between frequency and distance for it all to be ok. The grown ups? We desperately miss family, friends, playing music, the pub! but we are faring well since we’re best pals, which is always handy.

The other aspect of punctuation is those moments where you are drifting along in one universe and something comes along to puncture whatever place you’re in and catapult you back into grief. Those experiences are fewer these days, but just as powerful. Half listening to BBC Radio 3 on Sunday as we often do (you never know when Kaufmann might turn up) an interesting programme comes on about a forensic scientist choosing her favourite music. The conversation turns from her working life to talk of her own experience of the death of a child; to paraphrase, I think she said the worst thing possible in life had already happened to her. The gear change, as you realise where the conversation is heading, is shocking; a punctuation. I found myself laughing briefly in horrified solidarity. What is there left to fear? The worst thing imaginable has already happened to us. So. There we are.

Cleo, in your honour this year I have adopted a llama in your name. And we’ve all got fluffy llama socks to wear on your birthday. We will light candles, we will make a cake and we’ll try to smile and laugh as much as we can for you. Your baby brother, temporarily resident in your room, has rather annoyingly picked off some of the stickers from your door sign that says ‘Cleo’s Room’. I haven’t really told him off, because I know you’d quickly forgive him. He knows who you are, my darling. He recognises your face even in pictures we haven’t shown him before. Sometimes he calls you ‘Kylo’ but he’s getting there. It means the absolute world to us.



Today feels like it should be big, but the reality is we have simply tried to muddle on through this one just as much as any of the other 365 days which have now slunk by. We muddle better on some occasions than others – today has just been low and grey, a bit chilly, trudging through the hours. Corona-chaos doesn’t help the mood.

Earlier in the morning I spent a little time watching some of the precious though all-too-brief video clips that I have squirrelled away and which include our Cleo. Rarely the main feature, but always there, adding sparkle and fun. One that really made me smile today was of Cleo, dressed in full sparkly Queen Elsa ball gown, gleefully standing on a skateboard and hurtling down the hill in the garden of our old flat, leaping off madly at the end with characteristic poise and then charging back to the hilltop to do it all over again. Soon it hurt too much to carry on watching. I cried, and then I got on with another day. That’s standard for me.

I found the strength to watch the clip that I feel is the most precious of all – Cleo holding her baby brother and the two of them giggling at each other in beautifully attuned bliss. How she would have loved him. How I need him to grow up knowing who she is. He has learned to say the names of his other siblings – of course he has, he sees them, he loves them. Cleo’s name, not yet. And why would he – bless him, he doesn’t know her yet, he can’t make the connection between the name I ask him to try to say and the static photograph of a smiling girl, the pictures of The Three together where baby points and merrily calls out “Ella! Oscar!” but looks at me when I say “Cleo”, gently puzzled. Nothing in response, yet, for our Cleo. Yet. I’m big on that word. It offers possibility.

Folks, I don’t have much to offer you today but I didn’t want to let it slip past. This morning, before the weight of the day pulled me down, I was determined to push thoughts of Cleo’s loveliness to the front of my mind. The danger in marking an anniversary such as the death of someone precious is that you focus on the manner of loss itself, rather than all the beauty and joy of their life. There’s so much there for us all to process, one day, gently, with time. We have spent much of the last two years caring about and managing the emotions and needs of many different parties, but in this I allow myself and her dad to have top priority. We were the ones at the heart of Cleo’s care throughout her illness and at the very end of her life. Us, her devoted parents, we were the ones who held her, kissed her, comforted her as she died. If I have got anywhere near to processing all that by the end of my own life, I will view that as a success.

The point is, I don’t want to focus on her loss. I desperately want to remember all the light that shone from her. Because the manner of her loss is so catastrophic, we are in danger of it overwhelming our precious memories. I need people who knew Cleo to share their photos with me, their anecdotes, their stories – there’s so much of her life that was not known to me. Remind me of songs she loved, remind me of the wild and wacky dances she used to do. Her clothes, her favourite toys – give the memories of them back to me. I am terrified of losing even more of her, of parts of her life fading away from me. She died a whole year ago, but she lived for so long, so vibrantly, full of love and carefree. I want to feel it all, gather the fragments of her life in my arms, breathe her in again.

i carry you in my heart

30.01.2020 – I am grieving more vividly today as it marks five years since my Dad died. I hadn’t done a very good job of coping with his death at the point when Cleo fell ill, and I recall a sense at that time of consciously ‘parking’ him and telling him I’d come back for him. The last two years have been Cleo. Now, today, I reflect on those 5 whole years and I think to myself that, just one year ago, we were gratefully enjoying the last of the very best times that we had with Cleo.

Me with Dad and baby Cleo in November 2008

I have not been able to write for a very long time. There has been little impetus to do so, whereas previous posts really were a compulsion. Perhaps we just needed a little quiet in our lives, just to feel our way through this new normality, try it on and get to know how it feels. And dealing with an unexpected consequence of grief – the inability to think. I don’t know why it took me by surprise how it did. The slow, lugubriousness of my mental cogs. Even simple tasks like putting in a password are laborious and I have to stop and talk myself through them. I don’t think it’s got any better over the last year, just that I’m getting used to it. I think I’m getting used to pain too. To begin with, after Cleo died, it was overwhelming. I have wanted to die too, so much, just to take it away. That is the truth. And it is still there, the physical pain, all the time, but I notice it a little less. I like to think we grow around the grief, almost protectively. My grief, borne of my love. It is part of me now.

I know how fortunate I am to have so many protective factors around me. I won’t take my own life and I always knew that I wouldn’t. It was just darkly comforting to know that I could, if I wanted to. If it all got too much. But it never did and never will, not while I have the love of my husband, my children, my friends, a lust for life, beer, music – that is what sustains me. It’ll always be here. I carry it with me. I carry it in my heart.


Both, and

9am on the Moray Firth and the sunshine is already almost too hot to bear. We’re so lucky. The sea shimmers, blue as my childrens’ eyes. I’m packing the kids and their dad onto a boat where they will go zooming out on the water together in search of dolphins, seals and osprey. Baby and I will have each other for company, firmly on dry land. Coffee and cake await us.

The boat trip nearly didn’t happen. It was planned for earlier in the week, on Cleo’s birthday indeed. It poured down, with high winds, meaning any outing into the sea would have been an endurance test at best. I have never before known it to rain on Cleo’s birthday. Never. Nothing more to say about that, it’s just an observation. I suppose rain added to the chilly strangeness of the day this year.

It was thrilling to watch my loved ones glide out into the sea. As the boat accelerated away and i waved them off, my heart swelled with complex, competing emotions. I was grinning with pride and shared excitement, while hot, heartbroken tears simultaneously fell. Whatever we do, wherever we go, there will always be someone missing. As a bereaved family, life is now about seeking a balance between holding our profound grief in one hand and striving for a happy life in the other. The two positions are compatible, it’s not an ‘either/or’ dichotomy. It’s ‘both/and’. Intertwined, inextricable. Living, actually living, alongside sadness.

Anniversaries, Mothers and Fathers days – they’re always going to cause pain. But we love our children, the four of them – we do have four… One of them rides unicorns through the skies, but we have four. We love them and relish thinking about them, sharing their talents, their quirks. There’s nothing to fear if mention of one of them in particular provokes a tear – it’s just borne of love. On this topic, I found this marvellous piece in the Washington Post by Jayson Greene, himself a bereaved parent, to be very touching and pertinent.

I am sorely aware that the flavour of this blog has changed. It’s become a record of the processing of grief. It is not very much fun to read, or to write; I’m sorry about that. But our resolve and determination to survive remains and I hope that there will be infusions of optimism and possibility within future words. A friend shared this image on Facebook the other day – it really touched me, because I hope that there will be something within all these words that will be of help to somebody, somewhere.

Cleo’s birthday, so soon, without her, was incredibly hard. But we made it, together. Mothers Day, Fathers Day, whatever; we survived. One little tiny step at a time, we will carry on and we will grow. Like a petunia. Or is that a turnip? Cleo always got the two muddled up, love her. Funny. Wonderful. Our Cleo.

Birthday babe

By the time I post this, it’ll be here. We’ll be hiding somewhere far away, secluded but together, working out our own way to get through it. I have passing thoughts about what we could do. Eat chicken nuggets, wear unicorn onesies, play ‘Game of Life’. But doing any of that without her is unbearable. Maybe next year.

A child’s birthday should be boundless fun; a chance to celebrate their existence and reflect back to them in bright, colourful sugariness just how much you love them. Not through gifts  – Cleo never asked for anything anway, always so modest with her wish lists – but letting them choose who to invite, what the celebrations will look like, the colour and contents of the party bag, the cake! What kind of crazy cake shall we have a go at baking this year? Animated memories of cakes, celebrations and parties past.

It would be a pity if we simply ‘got through’ this one. I mean, that just involves continuing to breathe and exist, doesn’t it. I think that would be rather miserable. Equally, we are in no way ready for some kind of collective celebration of existence, not yet, though that would truly honour Cleo’s vivacity and lust for life. Maybe next year, I don’t know. So I really don’t know what this day is going to look and feel like. But I have enjoyed fantasizing about what it might have been.

Last year we had a fantastic birthday party for Cleo. We really went wild. She invited her whole class and we had a full-on disco with posh afternoon tea-style cakes and sandwiches, elegantly displayed. She wanted all her guests to feel special and loved. Cleo was very poorly this time last year but squeezed all she could from her birthday celebrations. I have visions of her entire class dancing around her to riotously loud music, chasing bubbles and lights while she sat in her wheelchair like the royalty she truly was (HRH Princess Olec Woollybum), beaming with smiles and pure radiant joy. Quite rightly the centre of the universe, just for a day.

Thinking about her party last year brings to mind a short passage from The Great Gatsby. Over many years it has often drifted into my thoughts of Cleo. I do love the novel, despite it being a set work for A level English Lit, which you might reasonably expect would guarantee lifelong dislike. Thankfully, the book is too lovely for any amount of coursework to spoil. The passage is a little description of Daisy that I have always thought applied beautifully to Cleo (a far superior gal than Daisy, it must be said!). When you read it, you’ll understand. It goes like this:

She laughed again, as if she said something very witty, and held my hand for a moment, looking up into my face, promising that there was no one in the world she so much wanted to see. That was a way she had.

Well, now I’m crying, but that’s ok. The sun is shining on a beautiful morning, making the solar-powered crystal on the window spin around and spray rainbows all over the walls; it’s lovely. Baby is asleep beside me. I’m bound to cry when I indulge in thinking about Cleo in any depth. It’s just my heart overflowing.

This photo of Cleo popped up in my Facebook memories today:


We went up to the local shops; Cleo decided to travel all the way there and back,  and around the shop, with her arm outstretched ‘superhero’- style. I hope that’s made you smile. It makes me feel immensely proud of her. Cleo was the one who gave us the power and strength to cope throughout her illness, not the other way round. She was never afraid, always determined. Had I known we would only have this marvellous creature in our lives for a short time, I couldn’t have loved and cherished her more than I did. Does this thought bring me comfort? Of sorts. It is both sweet and painful to think about her; I want to, and do,  relive my precious memories, despite the pain. Cleo is just irresistible. Dolcissimo soffrir.

This year, Cleo’s 11th birthday celebrations would have been more characteristically modest than last year’s blow-out party. She started planning her birthday around Christmas 😂 Falling midweek, she’d have taken a batch of unicorn cakes to school to share, followed by a few pals coming round for pizza and a movie. On the weekend a group of them would go out somewhere suitably adventurous; trampolining or climbing the walls followed by a Maccy Ds. She’d take out her new bike; time to get her a decent machine of her own rather than big sister’s hand-me-downs. The girls would set off  excitedly, their mobiles and a few quid in their pockets, Ella leading the way. There are some beautiful, liberating bike tracks around where we live. Along the river, past the weir. The air is warm and smells of green with clouds of wild rose fragrance as they whip along, a little too fast to be safe. Exhilarating. Tantalizingly believable.

Of course I know she’s gone. But still, what has happened to our family defies belief. I mean, how, us, how, why?! I look into her room and whisper “where is she, where is she, where is she???” Her glasses are on her bedside table. Her keyring from our trip to Alton Towers. Where is she?

Trying very hard to pull myself out of this hole, I lean on my Tavi training once again; sometimes you just have to bear the ‘not-knowing’ and accept the messy reality. Sometimes there are no answers. One thing is terribly certain: no more happy returns this birthday. Just the tenderest of precious memories. Thank you Cleo, for all these gifts.


Early days

Every second of every day,  from waking till sleeping, and then all through my dreams, I miss her.

There are some difficult things to get through which are predictable; Cleo’s fellow Year 6s excitedly going off on a well-deserved post-SATs residential trip. Friends’ children turning eleven. Her own birthday is looming. Watching them heading off to secondary school in September will be tough. Savage though these things are on our poor broken hearts, thankfully it is still possible to be genuinely happy for others, though the envy is desperate. It’s the banal, the everyday basics of family life that sear the most. Missing her through all the usual typical stuff, small, in-passing shared moments. A pigeon lands on the roof of the building opposite, plump and faintly ridiculous. Oscar has chicken nuggets for tea after school. I use her green plate to feed the baby: she’s there, just there, everywhere.

She lost her mobile ages ago, back in January. She probably stuck it in a bag or a box or a pencil case or something;  it’s here,  somewhere,  I’m sure of it. Some weird What”s App anomaly meant that,  this morning,  she miraculously removed herself from our family Team Cleo group. The message simply read: ‘CleeBee left’.

I’m writing this here because then it is said and I can put it away and go on smiling again.

I am proud of how we have been able to carry on since Cleo died. It’s been seven weeks, which feels like both an Age and a few moments. Days feel long and laborious; I feel slow, as though time now moves at a heavier pace. But we get up in the morning, we go to school and work. We have a chuckle. We’re OK. There’ s a lot of music around, lots of activity. Seedlings and plants to nurture. Fundraising. I ran a 5K – is this actually me??

I think it’s healthy to be busy and occupied,  but it’s not about ‘taking your mind off it’. Even if there *was* a way to do that,  why would I want to take my mind off my beautiful daughter? Conversely,  I just want to think about her all the time. I love to talk about her, as much as it hurts.

I am terrified of forgetting. What if the images I treasure of her pretty freckly blue-eyed face were ever to fade? I’m dreadfully fearful of losing what I have left. I have a receipt in my phone case from the last time we ever went out to the pub for lunch together with her Nanna. She really enjoyed that meal. Apple crumble for pudding. That day was blissful. We didn’t know we only had weeks left, or perhaps we did but just couldn’t bear to look. Now I feel an urgency, a need to keep that little bit of paper safe. I’ve already retrieved it from the baby’s curious little fingers. I should get organised,  make a memory box or something. It’s all just so bloody hard and I am slow and tired and just sad.

I bought a bright yellow jumper to wear because it reminds me of Cleo. I look absolutely grim in it but it comforts me. I tried putting one of Cleo’s jumpers on once and instantly bawled; it was too much. I like to snuggle under her cat blanket, though.  That feels like a treat;  I don’t over-exploit it. Just now and then, a Cleo-y cat blanket snuggle.

It’s such early days,  isn’t it? And there’s no better advice to take other than to ride these waves as best we can. I do think that I’ll always feel this sad and what happened to Cleo and all of us will never seem real. To keep going now is a case of assimilating sadness and grief into my life,  rather than trying to avoid or evade it. You can’t escape grief. It will find you. And we must keep living.



There’s a custard cream in the pocket of my hoody. Though still in its packet, it’s getting very crumbly,  disintegrating as the weeks roll on. I’m not sure for how long I can keep it there, though it brings a sad kind of comfort each time I find it. She loved a custard cream, Our Cleo. She liked to dunk them in her tea, in anyone’s tea. This one was the last in the packet, there in my pocket in case she fancied one when out and about. It’s been there a while.

You see, the shift to the past tense is one of the aspects of ‘all this’ that’s hurting the most. One minute, there, with us. Another minute later, her life suddenly became located in the past. ‘Cleo loves custard creams’ versus ‘Cleo loved custard creams’. That’s really bloody hard.

Cleo died.

We didn’t ‘lose’ her, she didn’t ‘pass away’. She didn’t go to sleep to join the angels or whatever, she died. I feel harsh and bitter, but simultaneously soft and glad that the way in which she died was as beautiful as it was. Cleo died at home with us, her mummy and daddy, holding her gently, lovingly. She knew nothing, suffered no pain. She clung on so hard, so hard… Her wonderful fit healthy body just wanted to live so much.





I will miss you so much, forever. Forever. I’m so sorry that I couldn’t fix this for you.





It’s taken me what feels like a long time to write this. I really wanted to write. I wanted to tell it all. No pictures though, not this time. After Cleo died, I lay with her for hours. Family came in to see her and went again. I stayed, stroking her hair, her silky chestnut hair. The sense of freedom I felt was unexpected; freedom from slowly slowly slowly witnessing her slip away from us. Later, before the funeral directors had to come and take her away, I washed her. I washed Cleo’s lovely little body with the stuff from the ‘Body Shop’ (ha! I just realised that’s quite funny) that she really liked the smell of. What an extraordinary experience.

The last time her daddy saw Cleo was after so carefully carrying her little body downstairs, with all the strength and tenderness of a father’s love.

I went to see Cleo at the funeral directors a few days later. I wasn’t going to, I felt strongly so. She was dead, gone. I knew from losing my dad a few years ago that the last vision you have really will stay with you: did I want that? could I bear that? But a strange compulsion overrode my otherwise rational position. I wasn’t sure what it was, but I went with it and arranged to see her body, gently arranged in its casket. I made myself look, with care, and just take her in.

Glitter in her hair… unicorn nails… a rainbow of coloured sequins on her new yellow jumper… her shiny metallic pink earrings. So tiny… it’s so tiny… white, with silver handles that almost resemble little hands holding on, just like you held my hand. Just like you held on.

My beautiful girl. My treacle pudding. My precious. We’ll get a pug and we’ll call her Barbara. I’ll tend your cactus family, Bob, Jeff and Norman.

I knew when enough was enough. I even remember smiling, and feeling so definitively ‘she’s gone. She’s gone’. The experience of me being there with her was powerfully reminiscent of the nine months spent carrying her on the inside, time with her at the end of her life that was once again so deeply personal and intimate, as at the beginning. That’s what it was, the compulsion. To be with her once again in a way that could only be known consciously to me alone. I felt a sense of peace afterwards.

Let me tell you this: there is a baseline of pain that simply underpins everything. A constant, unending undercurrent of deepest pain. I believe that it will always be there and that I will grow to live with it. The pain does not exclude happiness – we have already tentatively gone back out into the world as my family slowly, carefully explores new ways of being and we have had happy times. We will have many more, I believe it, and I also believe that everything we do from now on will be underpinned by a sense of missing Cleo so much. It is terrible now, to go on with life, but not impossible. I hope that there will be a time in the future when I don’t cry multiple times a day. I don’t break down sobbing and wailing. It’s hot, silent tears that just overflow. Paraphrasing the wonderful Kurt Vonnegut, I much prefer laughter over tears; it’s a lot less messy.

As with the custard cream, I wonder sometimes about Cleo’s possessions. Her cosy bright pink jacket hangs by the back door. It seems to fit being there right now, but for how long will it stay? As her siblings grow up and fly our nest, will the jacket still hang there? Will it become an anachronistic symbol of a time long past? The accessible van has gone already, her wheelchair, her Blue Badge, that can all go. Symbols of her illness.  Leave me with her trainers, her teddies, her drawings, her writings. I guess we just go with the flow, slowly, gently.

Now, without Cleo, we are transforming. Changing state, both as a family and as individuals, from one way of being to a new one. Like Mike Teevee, floating up in the air, fragments of what we were, ready to re-form into something new. I am so sad that Ella and Oscar have had to go through this. Though I am proud of how we have all handled the myriad events of the last year, I am vigilant and fearful of the potential impact on them both. Ella was Cleo’s idol – one of her first words was “Awaaaaaaa!”, called out as she excitedly waited for her big sister to come home from school. In the last few months Cleo was just the same again, asking “when’s Ella back?” all afternoon and perking up noticeably once her mentor had returned. This love was by no means all one-way; Cleo was Ella’s best friend too. Not so much chalk and cheese as one being a big slice of smoked Applewood and the other a chunk of tangy feta; kind of the same, but so different. Equally delicious. The extraordinary compassion that Ella showed her little sister over the last year was just… stunningly lovely. I hope that she feels pride and comfort now and in the future. Fortunate are those who are blessed with a sprinkle of Ella.

It’s only been three weeks since Cleo died. I feel her everywhere, in the blue skies, in lines from a song, in the rebellious seeds of yellow and green which have escaped the farmers’ fields to settle contentedly in the hedgerow, growing tall to face the sun. They remind me of the warmth of her love.

In psychology, ‘transformation’ is where something changes so profoundly that it can never again be experienced as it once was. Reading this post has transformed custard creams for you; dunked surreptitiously in someone else’s mug or kept nice and crisp, you will eat them and you will think of Cleo. My gift to you.

One final gift, for now. Some words sent to us by a dear friend; author, alas, unknown.

A butterfly lights beside us, like a sunbeam…
and for a brief moment its glory
and beauty belong to our world…
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all.














Lost and found

The first day of Spring has passed; I wanted us to get here so much. True to form, my psyche has been singing to me – it has lurked for a while, but now it is looping around in my head. The end of Act III of La Bohème, set in Winterwhere the protagonists Mimi, a florist, and the rather jealous poet Rodolfo sing about parting, then decide to wait and stay together until Spring comes: ‘Ci lascerem alla stagion dei fior!‘ (we’ll part when the flowers bloom). It’s made all the more poignant because, by this point in the opera, we’ve fallen in love with all the characters, not least because of their flaws. While the lovers consider the unbearableness of parting, the other couple in the piece (Marcello and Musetta) are simultaneously pelting one another with a full-blooded, insult-peppered separation of their own. It’s poignant, funny and thoroughly human. And it’s all about parting in Spring.

Sunshine beamed into Cleo’s room yesterday, where she has now taken up almost permanent residence. It was glorious to have the windows open. I felt heartened when a humongous bee drifted into her room; gladder still when the buzzing beast glided back out from whence it came. Later in the afternoon, confident that Cleo was safe and comfortable, I briefly went outside and found myself resentfully cursing all the signs of Spring. Thankfully, I have maintained my skill at batting away unhelpful thoughts; thoughts such as her never again being able to go out to see the blossom, or look for catkins, or pick daffodils, or forage together for the first fresh dandelion leaves of the season to feed her guinea piggy. Unhelpful. Bat, bat, bat. The problem is, to be able to push them away, you have to have noticed them, and by then the thoughts have already left their wretched shadow on your heart.

There have been moments this week and last where the sense around us was that we were losing Cleo. She was slipping away from us. And then… somehow… she found us again. Incredible girl! Long, long periods without communication, of sleep without words, then… a squeeze of our hand… the raising of a finger… the slow blink of her eyes to say ‘yes’. A few mouthfuls of food, a few sips of water and a fleeting smile, sustaining both Cleo and us. Occasionally, words.

We spend long periods every day keeping our beloved girl comfortable,  warm and safe. When her baby brother snoozes, we gently insert him into his sister’s arms, where he sleeps blissfully in her warmth. Making sure she has all her medicine, dressing her, chatting to her, putting CBBC on for her to watch, finding something she might like and be able to eat – often through a syringe, these days, as chewing and swallowing is not so easy. I gladly attend to every need – a mother’s privilege. She trusts us to care for her, just as she always has. Though it is truly intense, emotionally and physically wearing, it’s an honour to do this for her.

There are bits and pieces of medical equipment all around Cleo’s bedroom, but I squirrel them largely out of sight. This is her room, a child’s safe space, and I want it to stay that way as best we can. Here’s her view:

2019-03-21 14.40.21

From left to right: a photo of Cleo with one of her besties, in better times. A tile Cleo designed and painted; a shiny pink Eiffel Tower (what else?!) from our trip to Paris last November. A pineapple picture frame with a print reading “You are a Magical Goddess Unicorn Queen”. A llama, a chocolate bunny, some emergency medicine in case of seizures – I sanction that being in view because we need to know where is it, should we need it. A bookmark; her ‘Most Courageous Pupil’ award from school. Poems and cards from dear friends, a photo of toddler Ella with Cleo as a baby. A strange stone with seaweed poking out of it that she found at the beach. Pickle, her little fuzzy toy that she’s so fond of. Balloons spelling out ‘OLEC’ (a nod to her true Royal identity; HRH Princess Olec Woollybum). Symbols of love, affection, warmth, humour and good times.

I’m fighting with a pull to write about the horrors of our life as it really is, but, as with that delightful scene from La Bohème, it’s all so much more complex than a simple dichotomy of good and bad can express. There’s pain in feeding Cleo with a syringe; elation when she enjoys a drink of apple juice and looks at you with her giant blue eyes. Doing a happy dance when she eats something. Such sadness when her sister asks her a question and gets long seconds of empty silence in return… then, a characteristic eye-roll; Ella mutters sardonically: “so rude”. The kind of banter only a loving sister can get away with. Oscar hasn’t quite worked out how best to cuddle Cleo goodnight. Just all so confusing and difficult to understand.

Cleo is safely at home with us. She’s lovely and comfy in her own room, where we all camp out through the day. When we’re feeling strong, we find ways to take her out and breathe in the springtime air with us. We successfully challenge the sense that it’s otherwise time to climb into our bunker, bed down and huddle away until it is all over. No. Not yet. This girl has much more living to do.


Sleeping tonight

I’m sleeping in Cleo’s room tonight. I hear her soft snore, like a cat’s purr. It brings memories of sleepovers in the living room to mind; watching a mutually acceptable movie all together, snuggled under duvets strewn across the floor. The nagging sense that I should be getting them all to sleep at some point but, what the heck, this is fun! Picking up bits of lost popcorn for days later. The children may not remember such times consciously, but experiences such as these are internalized as happiness, abandon; as love.

I’m sleeping in Cleo’s room tonight because I’m worried about her. My precious. She’s sleeping gently now, as she always has done. It’s lovely, rhythmical, comforting. Beautiful child.

I’m sleeping in Cleo’s room tonight. She’s not been right today, or yesterday. We can see and feel her decline. There’s a change in the family atmosphere. We’re silently hysterical, searching for glimpses of something daft to lighten the mood and sustain us. We’re on a kind of lockdown. It’s our time now,  our time with our girl, our sister, our daughter, our baby, our child.

I’m sleeping in Cleo’s room tonight; I’m breathing her in so that part of me is formed from her breath. We’re so lucky to have her, to have the whole gang. At times when I wobble, I stop and think of all my children. I hear them chatter and banter and gurgle (perhaps just one of them gurgles 😂) and I hold on to the sense of there being a future. Of vitality, potential and energy.

I’m sleeping in Cleo’s room tonight, beside her, and because of that,  I am the most fortunate person alive.