LPIN1 · My Journey · Uncategorized

What Lies Beneath

So after weeks of keeping it together, I cried at work…….. The mask slipped and a glimpse of what lies beneath was laid bare for all to see and I felt exposed and anxious.

A simple picture of a Minion with a Chiquita banana in a presentation triggered memories of Phoebe all dressed up in a Minion costume ready for a Minion themed 4th birthday party. Charlie’s party, born on the same day as Phoebe. “Banana!” she shouted doing her best Minion impression.

The trigger caught me unawares; Work, although challenging on lots of fronts, has still provided an escape. It has been a distraction, even though I work on Coco Pops and spend my working days talking about mums and children. When I first realised I’d be returning to work on this brand, it worried me a little, but I have, thus far, survived. Maybe it’s because Coco Pops is a brand I worked on before Phoebe came along. Perhaps it’s also because Phoebe wasn’t a massive Coco Pops fan, she liked them but on balance asked for Cheerios and Weetabix more, although I did get her onto Coco Pops porridge, or “chocolate porridge” as she called it. Ever in pursuit of consumer insight and an eternally indulgent mummy, I interviewed her eating it and videoed it on my phone. “Is it nice porridge?” I asked, she nodded, “Do you think you’ll ask for Coco Pops Porridge again?” and she nodded again but was perhaps more interested in what was on the TV than my DIY product test…………  I am in my 18th year at Kellogg, maybe Coco Pops are more part of my life, than they ever were hers.

But the Minions were, we went to see the film. We saw most of the big new films; Mummy and Phoebe trips to the cinema were a regular feature, a big part of our life and I always bought the DVD. Phoebe had the most indulgent collection of DVD’s any mother could buy her child.

minioncharlies party

Anyway, there it was, a large picture of a Minion. “Minions love Bananas” the presenter said, and in that split second I was catapulted in my mind to the bottom of our stairs. “Banana” I said spontaneously, just like Phoebe did and then it hit me like a truck, deep sadness, crashed over me like an emotional tidal wave. Perhaps I could have pushed it away; there are Disney images dotted all around the office and I even had a conversation about the merits of different Disney princesses with another colleague recently when I “happily” segmented Disney Princesses into: the original ones, the more modern feisty ones and Phoebe’s favourites and the ones she wasn’t bothered about. I love Disney, I love children’s films and have been to see almost all of the big releases since Phoebe died drawing comfort from the happy endings. I’ve continued to order to DVDs too as it’s a habit I’m not yet willing to relinquish. But this time, things were different, I let the flood gates open, I let the wave knock me over. I ran out of the room and slid to the floor in ladies in floods of tears… A colleague came after me, passed me loo roll, sat with me, there on the tiles and comforted me “I’m sorry” I said, “I usually keep things together”. “I know” she said “I don’t do how you do, you are amazing, you’re so strong…..”.

Almost 8 months since Phoebe’s death and to the outside world, I suppose that is how I must look, strong. I try so very hard to be strong, not necessarily because I feel that I must because the outside world expects, I have been more than ready to retort when challenged, that I don’t have to stay strong, I do it out of choice.  I do concede that there is a degree of societal pressure to keep it together and appear normal, but it’s not just that. I have described myself as a skittle that just won’t be knocked down. It is incredibly important to my self-esteem to stay standing. Perhaps I am setting my bar way too high, but that is me all over and for me trying to stay strong has been an important survival mechanism, just like the make up I keep buying and applying each morning. A carefully applied face of make up and compact in my handbag helps me feel stronger, prepares me to face each day.

But what the outside world usually sees and “what lies beneath” are two very different things and although uncomfortable, in light of my objectives for this blog, I think I need to be as open and honest as I can about the awful emptiness, pain, sadness and distress which are my daily and more frighteningly, my nightly companions. If I’m truly going to document my journey, then I have to lay bare the dark side; I have to drop my mask, lest other bereaved parents feel I am some kind of wonderwoman. This was said to me once, another bereaved mum said she was relieved when she saw me cry, that I wasn’t quite the wonderwoman she thought I was. I’m no wonderwoman, I might be doggedly determined, but truth be told and as much as I don’t want to admit it, I am as delicately balanced as a house of cards, just about getting through each day in one piece, breathing a sigh of relief as I close the front door behind me.

Being honest is scary. Firstly, one hopes the non bereaved will show compassion but revealing the anguish beneath makes me feel vulnerable. I felt so exposed at work when my mask slipped. I panicked when I realised I didn’t have my compact to fix my face, my anxiety rose uncontrollably and I couldn’t stop shaking. Would they think I’m not up to the job? Would they think I was unstable and that I should be more professional, that I should be stronger by now?  I have read blogs and writings by other bereaved parents, expressing frustration and as sense of alienation over time as others struggle to comprehend their slow “progress” and lose patience. I have had the most amazing support but it is still, in the world of child loss, early days, so I do worry that friends and colleagues will expect continued linear improvement. This is unlikely to be driven by impatience rather more out of concern for me. I know when a good friend of ours told me how lovely it was to see me and Ralph smiling and dancing at her party, that this came from a good place in her heart as it upsets our friends to see us in so much pain. I know my sister loves me deep down and this is why she expressed relief when she visited last that I looked much better than I did when she had last seen me on Phoebe’s birthday when we opened the Roundabout. She said that I had looked “ill” and I “looked better now”. I worry that people will want to see that I’m steadily getting “better” and making progress, while, in fact, in many ways I’m struggling just as much, if not more than ever…..

But it’s not really others opinions I fear the most. It’s my own. Being honest with myself about just how much I am struggling terrifies me…..

“Do you think you’re going backwards?” Ralph has kept asking. I haven’t wanted to engage, it isn’t a thought I have wanted to acknowledge but if I stop being quite so stubborn for just a moment I know he has a point although I would say that I don’t think it’s as much going backwards as things catching up with me. I have attacked the past almost 8 months with frantic determination and energy but given the size of the burden I carry perhaps it was inevitable that I would slow down at some point . I saw a great visual the other week showing early grief as a huge sack you have to lug around. When you look at that it’s no wonder it begins to take its toll and cracks can begin to appear..

grief in a bag

“Do you think you might need some help?” Ralph has also kept asking me. Again I have thus far resisted, determined to deal with things myself by trying to be positive. But perhaps this will only get me so far, perhaps I need to face up to it and be more honest with myself. However much I fight the pain, however effective my survival techniques have been so far, perhaps they just put a plaster over things. Perhaps I need to face the uncomfortableness of “what lies beneath” and admit my struggles, ask for help, not just to make sure I give a true account here but in order to truly attain the positive and purposeful life I want to achieve in order to honour Phoebe.

“What lies beneath” could be PTSD related: Post Traumatic Stress Disorder. This is not uncommon amongst suddenly bereaved parents. Ralph’s struggle and symptoms were apparent almost immediately but grief affects us all in different ways and at different times and as time has progressed, I have become concerned that I might be suffering too. It’s very hard for me to admit this as I desperately want to overcome. I know it’s irrational but if I’d broken my leg, I think I’d be more accepting that I need time to heal, but PTSD well, that’s a mental condition and my reaction, sadly, is one of disappointment in myself however much the media and even the young Royals with their Heads Together Foundation for example try to address the stigma and change perceptions.

Heads Together were the official charity of this years London Marathon and William, Catherine and Harry pressed the start button together and took part in the BBC documentary ‘Mind over Marathon’ which Ralph and I watched together. Among others they featured Rhian, a brave bereaved mum suffering with PTSD after not only losing her young son to pneumonia, but her husband too. He took his own life in the aftermath just 5 days later.  I identified with so much of what Rhian said in her interview with Nick Knowles. She spoke to my heart and tears rolled down my cheeks as she talked about the guilt and the anxiety she battles with and how she keeps busy in order to cope.

You see, I struggle with guilt too. I know Ralph won’t like me saying this, he constantly tells me what a great mummy I was. But I can’t help it and I know from talking to other bereaved mums that I am not unusual. I try to push these feelings away, but they haunt me. I was her mummy, it was my job to look after her, protect her and deep down I feel like I failed, that it is even all my fault, after all I understood the dangers of LPIN1.  I know it changes nothing and only hurts me but once I’ve let this thought emerge, the downward spiral is inevitable; I go over and over those last hours in my head. She was bright and breezy when I collected her from school, excited that she had been given the class monkey to take home, but I should have realised all was not well when she asked to go home from the park and then subsequently picked at her malt loaf. If it had been Soreen and not that pappy Aldi version I’d bought trying to save money would she have eaten more, got more of the sugar her body needed? If I hadn’t taken her to her swimming lesson, imposed my high standards on her rather than letting her chill after a busy week at school?….. If I’d made her a proper tea and made her eat it rather than getting her Smarties on the way to swimming and relying on the buffet at Sharon’s party? Maybe we shouldn’t even have gone to the party?… If we’d gone home earlier, if I’d given her some high glucose drink as well as the Calpol for her slightly elevated 37.4 temperature would she still be here? I knew the dangers of Phoebe’s condition, am I to blame? Of course there is an alternative answer: LPIN1, a rare genetic disorder about which doctors are still learning, took Phoebe’s life, it wasn’t my fault she had the mutation and deletion. I spent the evening encouraging her to eat more, “have some bread or some cake” I said, mindful of the need for carbs. Tiredness after school was a new thing, her temperature was barely elevated, the series of events and symptoms that morning weren’t any different to her other episodes and I got her to the hospital just as quickly and pushed and pushed the staff for quicker attention but even as I type I find it hard to convince myself. In moments of darkness I relive those events and the decisions I made with a self-critical eye.

So there we have it, perhaps this is evidence of symptom number 1 of PTSD according to the MIND website, “reliving aspects of the trauma”….. This also manifests itself in other ways. I am haunted by other “intrusive thoughts and images” both awake and when asleep. In particular I cannot get three conversations I had with Phoebe about death out of my head. I “flashback” to one bathtime when she said to me out of the blue “Mummy, I’m scared of dying”. I was rendered speechless as I wrapped her in a towel and cuddled her and told her she didn’t need to worry. A couple of weeks later in the car she said “So mummy, when you die is that it?” I always prided myself on being honest with her so I said “yes Phoebe, when you die, you don’t come back”. Then again just the Thursday before she died, I collected her from After School Club and she asked me “Mummy what happens when you die?”, I answered “well people believe different things, but in truth, no one really knows Phoebe”. I wish I’d said something else, something more comforting.. I am haunted by the fear she must therefore have felt, in those final hours and in the chaos of HDU…..

Sleep doesn’t guarantee an escape either, my dreams can be vivid, they aren’t straight flashbacks of that day but they often feature Phoebe and the consultant who treated her that night. Other dreams centre on the theme of being abandoned and alone. Whichever, these dreams put me through an emotional wringer and I wake exhausted and sometimes drenched in sweat before the day has even begun. Both nightmares and sweating also count amongst the symptoms of PTSD. Sweating isn’t the only physical symptom I have either, my digestive system is, to put it politely, “over active”.

I read further down the page, “alertness and feeling on edge”. Disturbed sleep? Yes. Irritability? Yes. Being easily startled? Yes. I  jump out of my skin at a sudden noise, in fact I’m super sensitive to noise full stop. When they decided to hoover at midnight in the hotel I was staying in with work the other week, I got myself so wound up. I complained, they wouldn’t stop, I couldn’t block it out and my chest tightened. I reached for a beta blocker, it offered little help and I only managed about 2-3 hours sleep that night. Lack of concentration? Yes, I have to fight with all my might to keep my mind on the job and in a straight line. I feel slow and distracted and I get very frustrated when my mind and mouth don’t work in sync and I sometimes struggle to find the words I want in meetings. This can lead to anxiety and panic and I worry that I’m failing so I sometimes end up staying later than planned or working in the evening to try to make up for my inadequacies…..

“Avoiding feelings or memories” . Many of these symptoms resonate too. In the immediate aftermath of her death I would go into Phoebe’s room every night and kiss her pillow in her unmade and never now to be changed bed, to say goodnight to her. I don’t do this now. I leave her bedroom door open and I can see in, the sight of her dressing up rail greets me every time I ascend our stairs, but I don’t go in often as the pain this triggers is unbearable. I felt I should be going in, so for a few Saturday mornings I scheduled grieving time and I’d go in while Ralph was at work and let myself crumble but I couldn’t cope, I couldn’t pick myself up for the rest of the weekend so I beat a retreat. I don’t want to change her room, it feels right that her ashes are there, but going in makes it all so real and I relive the feelings of trauma over and over again. Too much, it’s just too much.

Also on the subject of avoidance there are quite a few places I avoid because I find them overwhelming and because they make me feel anxious. The Trafford Centre, I keep trying. I like shopping and I suppose numbing the pain with a few new bits of clothing is better than copious amounts of wine although I probably have a glass of that a few times a week too. Anyway the Trafford Centre and also big supermarkets which are busy and full of families are stressful so I stick to peace and civility of Waitrose for groceries and stick to online or a quick click and dash to collect for other items. The airport is good for cosmetics although that too is not a stress free zone, each time I fly back from Dublin I have to face the arrivals hall and the absence of my beautiful girl in a random dress up holding a Kinder egg which her Daddy always treated her to each time they picked me up. I keep my eyes low and get out of there and into a taxi home as fast as I can hoping that I get a quiet driver who isn’t going to make small talk which may include the question I dread the most “Do you have kids?”….

“Keeping busy”  is another symptom. Rhian kept busy too; “I’m a doer” she said and she certainly has kept busy setting up the “2 Wish Upon A Star” Charity which honours her 2 boys and which provides badly needed support for bereaved parents in Wales and also with looking after her 2 living children.

2 wish upon a star

I guess I have kept busy also. I have definitely used work as a distraction. When I first tried to go back to work it was for the structure and the people. Being at home was too painful (guess that’s avoidance again) and still is. I often used to work from home, but I prefer the distraction of the office environment at the moment. The meetings, conversations and intellectual challenge soak up the days and often the nights due to the amount of travel I do. Even before I went back to work, I kept busy; the early weeks and months were dominated by raising money and then organising installation of Phoebe’s Roundabout. Socially, I have accepted as many invites as I could to fill up the evenings and weekends all to hopefully tire me out and send me off to sleep without medical assistance. But this is an exhausting strategy and more and more I find myself  retreating, not wanting to engage with others, close the door, hideout in the garden in my own company or in silent refuge with Ralph, evidence perhaps of “feeling detached, cut off” also mentioned in the long list of symptoms which resonate with me on the MIND website……

So what am I going to do about it? Well I would be lying if I said there wasn’t an ongoing temptation to just collapse in a heap. I feel like this every time I go to the ladies at work and close the cubicle door, or each time I get into my car to drive home from work or stand in the queue to board my flight back to Manchester from Dublin….. But I can’t let myself collapse completely. Although exhausted and in need of our forthcoming break, I will keep trying to pick myself up in positive pursuit of hope…..

willow tree hope

The morning after my hoover disturbed night in Dublin, I stumbled across a quote attributed to and subsequently a YouTube video of a lecture given by, Randy Pausch, an American professor of Computer Science at Carnegie Mellon University; “We cannot change the cards we are dealt, just how we play the hand” was the quote and the video I watched was an abridged version of his ‘last lecture’, usually a hypothetical testimonial from a great professor under the guise of what lecture would you give if you were going to die, only his challenge wasn’t hypothetical, he was losing his battle with Pancreatic Cancer. And yet he was so positive, “I don’t choose to be an object of pity” he said. His subject he said, was not about “death” but about “life and how to live”, “I am going to keep having fun everyday I have left, because there is no other way of life”,  “You just have to decide whether you are a Tigger or an Eeyore” he said ” I am dying soon and I am choosing to have fun, today, tomorrow and every other day I have left” …..

I want to be a Tigger. I’ve been relentlessly trying to be a Tigger but its tough to keep this up day in day out and my bounce is currently lacking spring….. Maybe Randy had off days despite his apparently relentless positivity in the face of such personal tragic inevitability and fear, so with this in mind the second thing I’m going to do is to try to be “Kinder to myself”. I’ve heard this said a lot since Phoebe died, “Be Kind to yourself” and I keep thinking I’ve got the measure of what it means, but in reality I think I’m only just even beginning to understand. It doesn’t necessarily mean treat yourself to a Skinny Hazelnut Latte everyday you go into the office (but I will do) or buy flowers for the living room every week and posh bubblebath and a bar of dark chocolate to keep in the fridge (but I’ll keep doing that too). I think it means give yourself a break! I agreed with my boss to start later at about 9.30am in the morning but I’d begun challenging myself to phase this earlier but why? It’s still really hard, especially after a nightmare and having to go through the realisation again upon waking that she is gone, I will never hear, see, smell or feel her ever again. I will dig deep for those unavoidable early meetings, but I won’t force myself to progress faster than I am able. I need to pace myself and I need to learn to forgive myself when I don’t live up to my own exacting standards. I am human and a human which has witnessed a tragedy so in fact getting up, showering and getting in the car each morning is in itself a major achievement.

I will try to worry less about what others may or may not think and not apologise or beat myself up if solitude is the respite I need at the moment. If people truly care about me they will understand that this is the self-care I need and be there when I have recharged my batteries and feel able to re-engage with social engagements and in conversation.

I will keep running and doing yoga. As discussed in the documentary, running releases endorphins and gives me a sense of achievement as I run further in purposeful preparation for this months Manchester 10K. Yoga clears my mind and relaxes me; I’ve experimented with a bedtime practice and it can help me achieve the restful sleep I so badly need.

downward dog

I will keep writing. Writing this blog helps me process my thoughts and feelings. It is one of the few things which completely absorbs my attention as well as giving me a valuable sense of achievement each time I complete a post and click publish. Thank you for reading and thank you to those who have sent messages, they mean a lot and help me feel less isolated on this sad journey.

Finally I will ask for help….. Googling for quotes again, there are plenty which allude to the fact that asking for help is in fact a sign of strength rather than weakness so there you have it, however uncomfortable it feels, I must ask for help. If I do have PTSD doesn’t mean I’m rendered helpless. I can still do great and positive things, Rhian has, she has set up a hugely worthwhile charity, she has run a marathon, she has simply kept on getting up and getting on and she has faced “what lies beneath”, her PTSD with bravery and humility and if it is PTSD I am also facing, then so will I…
















5 thoughts on “What Lies Beneath

  1. Hey Claire, I feel everything you have written. I lost my son nearly 7 months ago. He was a healthy fit 19 year old and died suddenly in his sleep of SADS. I relate to your blog so much, the work and holding it together, the vivid dreams and even down to the running! Thank you for sharing xx


  2. Claire. So beautifully written.
    You cannot compare what you have suffered with an adult who is facing their death. You would have coped with your own demise far better, although the worry of Phoebe losing you would have been traumatic. Having served for 35 years in the cops I learnt that the loss of a child is by far the worse thing that can happen to any person, especially for mothers who have felt that child grow within them and consequently feel at one.
    Do not worry about work colleagues reaction, those with children will be aware of some of the trauma you are suffering, they will shudder and be thankful it is not them. I often think how it must feel and I enter a very dark place, however nowhere near as dark as yours. You have to suffer this type of bereavement to really know, thank god I haven’t.
    Whilst rising through the ranks in the cops I dealt with some awful situations, I suffered anxiety and panic attacks occasionally, few would have known. I went for counselling on several occasions and benefitted enormously. I came back so much stronger. Not one of my traumas came close to the severity of yours, not even close.
    So is it a shock to me that you may be suffering PTSD, well not as much as if you were not. 😊
    Do not hesitate to seek counselling, but please research to discover the best on offer.
    If there is one positive that has come from Phoebe’s loss it is that it has made me value my children so much more and to count my blessings every day.
    Thanks for sharing
    Nigel x


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