Is Covid-19 Building Up Emotional Pain?

Well I finally had my first telephoned-based counselling session and I survived! When it comes to Skype and Zoom, I’m a bit of a luddite - Evie would laugh at me. The telephone session wasn’t as bad as I had feared though and I will keep going with it while this awful virus prevents face to face contact. I have to say that it’s a relief, as the prospect of no counselling was not something that I had relished. I had felt myself becoming more inward-looking as the days went on.

Covid-19 has had a massive impact on my work running a charity, as well as steering Evie’s Gift through these troubled waters as a fledgling charity. I am hugely busy as the income for both charities has dropped like a stone. I’m working 7 days a week and with no prospect of the virus letting up any time soon, rest from work seems like a distant dream. The upside is that my brain is in overdrive and as I don’t have time to sit and chill out, my short-term memory has improved and the deep lows of losing Evie are, for the moment at least, not causing me any major difficulty. As you might expect, there’s a ‘but’ …..

In her classic probing style, my counsellor soon figured out that I was now so busy pushing the fundraising work that I wasn’t having time to grieve, and that there is now a risk that when things ease off, it will all come rushing back in one mad flood. I have had the odd short moments of deep sadness over Evie’s death, but work always breaks through to gain my attention once again. We talked for quite a while about what this meant for my mental state in the longer term, but also what was likely to happen in the coming days and weeks.

In a previous work life, I have had incredibly busy periods and I know (knew!) that I can maintain this frantic pace for about 6 months before something gives and I keel over. But ……. what the counsellor said was that my previous experience didn’t have the death of a child and two years of immense stress and pain to carry as well, and so I couldn’t assume that my body would perform to the same model this time around. I had two choices: carry on at this rate and expect to hit the wall a lot earlier, or start easing off, and build in rest time. To add to the complexity, my blood pressure is now higher than Patsy’s and she’s on medication for it.

The trouble is, the opportunity for proper rest just doesn’t exist for two reasons. Firstly, it isn’t an exaggeration to say that the survival of both charities is at stake, and Evie’s Gift is not something that I am prepared to let fail; that would cripple me emotionally. Secondly, when I say ‘rest’ I’m not talking about sleep, I’m talking about putting a pack on my back and hiking 20 miles+. That hiking time is the only time when my brain stops, it empties of every pressure, every thought, and I can just ‘be’. The movement restrictions mean that I should only really be out for an hour and 3 miles isn’t even enough to get my legs warm.

I can go to bed early, get up late, or just chill in front of the TV. I can sit in the garden with a beer. But I can’t empty my head of the pain unless I’m walking. Little walks don’t crack it because I don’t get into my stride enough to relax. By the time the walk is over, I’m still mulling over the latest work problem.

So, what I know for sure is that Covid-19 is going to stress me out in more ways than one, and somehow I have to deal with that. Getting back into the counselling routine will definitely help even if it is over the phone. In a weird way, the virus is causing a reaction not dissimilar to burying your grief - something that I never thought would affect me.

You Never Truly Appreciate Something Until It's Gone

Now you might think I’m referring to Evie here, or a person. But I’m not.

I started counselling a few months after Evie died. For the first 4 months it was every week, and after that it has been once a fortnight with odd interruptions. But now the face to face counselling has stopped, and today it’s almost 4 weeks since the last session. And it feels really odd. Being truly honest with myself and the counsellor is absolutely crucial for me to challenge what is rattling around my head. She challenges me to think, to dig and understand the ‘why’ as well as the ‘what’. I don’t get that talking to anyone else. I have missed that interaction, it kept me sharp.

Since Evie died we’ve never really gone out to dinner because it just felt wrong without her here to go with us, yet now that I can’t do it due to the travel restrictions and the restaurants being closed, all I want to do is go out for a bite to eat. I miss having someone else do the hard part.

Most of all though, I miss the freedom of being able to just nip out and see Evie when I felt low. It would get to mid-afternoon, I’d be flagging at work and I would simply jump in the car and go and see her for a few minutes. I’d read her a poem, have a chat and come home again. Being next to her grave is somehow being close to her. I can’t explain why, but it just is. Now I have to plan when I am going to see her, to tie it in with something else like shopping.

The virus has changed a lot in our lives for the next few months, and I for one am missing some of the basic freedoms that I took for granted before. The big stuff like holidays don’t matter in the least. The things that I miss the most are the little things.

So, tomorrow I’m going to give telephone counselling a go. Fifty minutes talking to my counsellor to see what it feels like and to see if it helps; is it better than nothing? It’ll lack the connection (sorry!) but it’s the next best thing as I hate Skype and Zoom. I’ll have to wait a wee while longer for dinner out.

A Very Personal Plea for Help.

So here’s a little extra blog.

These unprecedented times are having a massive impact on small charities. For the benevolent charities like the Rainy Day Trust - those that give financial help to people in financial hardship - it’s a double whammy. Demand is increasing exponentially, while income has dropped like a stone. People on zero-hours contracts are watching as their salary disappears, or even if they are on PAYE and the government gives them 80% of their salary, if you don’t earn very much then you are now earning 80% of not very much. Companies aren’t making corporate donations because they either have other things to think about, or they are worried about their own bottom line. Individuals may be worried about their jobs or the thought of supporting charity has gone to the proverbial back-burner. So income falls.

For charities like Evie’s Gift where event income is the bedrock of our fundraising, the virus has already had a huge effect on us. While we can resurrect these events later in the year, that doesn’t help our cash-flow right now. Kids are still in hospital and because of the virus, a greater proportion of the parents now need our help.

The loss of income is common to all small charities, including those that helped Evie while she was ill at home, or are still helping Pats and I now. Julia’s House Hospice was absolutely critical in our ability to have Evie at home for those last 6 weeks. Without them she would have died in hospital, and would have died a lot sooner. We owe them a debt of gratitude that can never be repaid. The Compassionate Friends are a lifeline for us now. Being amongst other bereaved parents is a source of support that we so desperately need.

All are fighting a battle for income in a world where people are becoming increasingly selfish. None have swanky London offices to support, all have few staff and are vital. I know that I have asked for donations before, and I make no apologies for that, but the need now is immediate and crucial.

So … I am asking each and every one of you to support the four charities listed below. How many you support and how much you donate is entirely up to you. If you could support more than one, that would be incredible thank you. These 4 charities are very special to me - I wouldn’t work for a charity if I didn’t believe in what it does, so the Rainy Day Trust is as important as the others.

Please share this blog to your friends and family. If enough people give just a few £, it will make a difference. Below are 4 links to donation pages - now it’s up to you.

Thank you.

https://www.justgiving.com/eviesgift

https://www.justgiving.com/rainydaytrust

https://www.justgiving.com/juliashouse

https://www.justgiving.com/compfriends

So our strange new world continues. Travel restrictions, queues for prescriptions, food and pretty much anything else that people want. And after Boris’s announcement on Monday night, what was my biggest concern? How will I visit Evie’s grave? That was the only thing that bothered me. That I wouldn’t be able to go and talk to her for a while. Not food, medicines or anything else, but to sit in front of her headstone and talk to her. Put that aside and I still don’t care about any of the rest of it.

I feel surprisingly detached from the rest of the madness. Without a doubt i am disappointed at much of mankind for it’s selfish attitude; Evie would have been shocked that others didn’t think the way that she did. I think I have come to the conclusion that a significant chunk of the UK’s population just isn’t very bright.

It has been heart-warming too to see the community spirit that is being displayed though. Our local town council in Melksham has created a community volunteer programme to help with shopping, collection of prescriptions or just a chat over the phone for the most vulnerable. I can see Evie trotting off to the shops to help out.

The world of a bereaved parent is a curious one. Over the last couple of weeks I have been watching the Compassionate Friends closed Facebook page to see how others are facing the challenges that have appeared and the variation is remarkable: I suppose it is nothing more than an accurate reflection of the variety of people that we all are. Some parents are fearful, some angry, others anxious, while others like me are more ambivalent. But one thing binds us together, that the death of our child has changed our view on everything in a way that is beyond the comprehension of everyone else. For those with surviving children I wish you a virus-free few months so that the worry of your child’s health is something that passes you by. For the rest like us with no children, stay safe and if you have a fool-proof way of staying connected to your child if you can’t visit their grave, then please share it.

Stay safe everyone.

Resilience

Well this is a first - I am sat here writing this one straight off on the day of publication; the fog is still hanging around clearly!

While I was driving to work this morning it struck me how surreal the whole Covid-19 situation is: tens of thousands of people in the UK are self-isolating, the world is looking inwards, borders are closing, the Australian Prime Minister is telling off his population for hording, and a Conservative Government is throwing billions of pounds at the problem. You couldn’t make it up.

I was thinking about how I would react over the coming weeks, to whatever travel or life restrictions get placed on us, and I realised that, in actual fact, very little would change. As a bereaved parent, I’m pretty much already socially-isolated. Our address book is a shadow of its former self. We often cancelled events or going out because the pain of Evie’s death was too much to carry in public at that moment in time. We live in the moment, unable to plan or shop more than a couple of days in advance. As a bereaved parent community we have lived with the equivalent of the effects of Covid-19 since our child died, we just didn’t call it that; we called it grief.

Now take that thought a step further. Evie died 2 years, 2 months and 7 days ago. I’m still here. I’m functioning, albeit in a restricted way, and we deal with whatever emotional or practical problems that the loss throws at us. When you stop and think about it, as a bereaved parent, we have all clearly demonstrated the skills needed to ride the storm of the virus because we do it every day anyway. We have developed a resilience in coping with adversity. While half the world goes into meltdown and fills their garage with toilet rolls (Silly me, I hadn’t realised that diarrhoea was a symptom of the virus - oh no. wait - it isn’t!) we just carry on. But every day we get up, adjust our mask and face the world. We are equipped better than most to work through the impact of coronavirus simply because we live it every day.

So if you are worried about the virus and how it might affect you, don’t, because you already have the skills to deal with it. And you know what, if I catch it and it takes me, then I can give Evie a massive hug a bit sooner than I expected, and that is just fine.

Pragmatism Rules - Or At Least It Should.

It’s funny how losing your child changes your outlook on life. Take Covid-19 as an example. At a personal level, I don’t give a stuff if I catch it or not. I’m reasonably fit and healthy and should, all things being equally, shake it off quite quickly. My only concern is that I don’t inadvertently pass it on to someone that it could do some real damage to. If I catch it, I’ll self-isolate and work from home. Simple. If the government’s view turns out to be correct, most of us are going to catch it anyway, so there’s little that I can realistically do to avoid it completely, so why bother? I have a job to do running a charity, and chairing a second, and that doesn’t go away just because I have a cough. Looking around at the selfish, moronic actions of some people, part of me thinks that a quick bit of Darwinian “natural selection” might be good for us as a society. One phrase popped into my head looking at some of the Facebook posts of empty shelves “what a bunch of oxygen thieves”. Cruel? Probably. Fair? Probably. The trouble is that it doesn’t work like that; those that will suffer the most are the old and people with major health conditions. Not the toilet roll-hording idiots. The people that are too dense to figure out that they are artificially creating the very problem that they seek to avoid; a self-fulfilling prophecy. Thankfully, children seem to suffer the least from the virus which is heartening. With any luck, when they are adults, they’ll look back at our generation’s crass stupidity and avoid those same mistakes.

Pragmatism, and in this instance, good old-fashioned common sense, seems to be a life skill that gets enhanced after losing your child. It reinforces perspective. Putting everything into context. Evie’s death makes this whole situation pale into insignificance for me.

Yes, I realise fully, and appreciate, that my views are at one end of the spectrum, and if you want to, you can take it all out of context and say that I’m being heartless. But ….. we base our lives, our actions and decisions on our history, what we have lived through and how those things turned out in the long run. Taking a pragmatic approach to Covid-19 strikes me as being a sensible way forward, not just for the childless parent community but for all of us. It isn’t a time to score cheap political points, standing on the sidelines throwing rocks at those making - and taking responsibility for - the decisions around dealing with the virus. We can all do that. It is a time to stop, think and help others less fortunate or able than ourselves. To be sensible and realise that the world is still spinning. It will still be spinning tomorrow, next month and next year. We can all criticise others, but how many will actually do something practical to help someone else? Will you?

Would my opinion be different if Evie was still alive? Possibly. But I also know beyond doubt that she would be watching the news with incredulity at how self-centred people are, while she would have gone out of her way to help her friends.

So, how about we all adopt a bit of basic pragmatism and common sense. It might not mean that you have a garage full of hand sanitizer and toilet rolls, but it will most definitely mean that we get through it together, and will emerge in a better state at the end of it. Learn from a 13-year-old girl that cared for her friends and be there for others, your neighbours, friends and family. If you can’t manage that simple act, then maybe Darwin was right. Mother nature is taking things into her own hands (washed for 20 seconds while singing Happy Birthday twice)!

Groundhog Day

In the strictest sense, what I’m talking about here isn’t exactly the same events happening day after day, as in the film with the same name, but is similar. Since Evie died, each day has been following the same routine, no matter if it is a weekday or the weekend. We get up, shower, have breakfast, do stuff - be it work or shopping - come home, eat dinner and go to bed. The whole lot gets repeated over and over. In some ways, you could argue that when Evie was alive, it wasn’t that dissimilar, but we never really noticed it if it was.

These days, the purpose of the day is to survive it. To reach bedtime and go to sleep again. Each morning for a fraction of a second you forget, then the loss comes crashing back and you start the day. Just like you did yesterday. Just like you will tomorrow. Each night you lay in bed wondering how it all happened and how unfair it is. The same feeling of overwhelming sadness descends once again, and the old question of “Why?” appears once more.

But our Groundhog Day is different to yours if you have one. For not only is one day just like the next, but we are also stuck on 11th January 2018; we can’t move forward with time. We can’t evolve or grow. The memories of Evie’s death are as fresh today as they were on 12th January 2018. The moment that she died is as clear to me today as it has always been. For our friends, their children are growing up, becoming young adults. They are planning for GCSEs, wondering what life will be like when their kids leave home, imagining being a grandparent. For us, Evie is forever 13, never ageing. Having spoken to other bereaved parents, it is almost impossible to break out of that place, stuck in time. A groundhog day where the world that you inhabit is changing around you, but you aren’t.

It’s a weird kind of existence, like nothing else we have encountered before. The prospect of being 75, still with a 13 year old daughter that I can’t hug is terrifying. At least you wake up from a nightmare.

The Fog

For the first time in a very long while, I haven’t written this week’s Wednesday Wisdom in advance. Usually, on the day it is just a matter of minor tweaks, correct the odd error and hit ‘Publish’. Not this week though.

The fog has returned once again. The fog that stops you thinking ahead and planning. The fog that blocks creativity. It’s also a fog that saps your energy. Everything else is ticking along in the new ‘normal’ way, but thinking ahead eludes me and actually has done for a couple of weeks. The last two WWs, were pre-written, so I was fine. This one though is being written pretty much ‘off the cuff’. I’m not sure why I can’t think ahead at the moment, and can only presume that it will pass, and I’ll regain some traction again. Or not.

I looked back at some of the very early WWs for inspiration, or maybe to find one where my thoughts on the subject may have changed, but found nothing that produced a spark. So I decided to write about the fog itself. What I do know is that my approach to the fog has changed. Before, a year or so ago, it bothered me, annoyed me and I became frustrated with it. It felt like failure. I fought against it, achieving nothing apart from raising my blood pressure even further. Now, I just ride the wave, knowing that it will go in time and that eventually I’ll start thinking more clearly again. I’m calmer now, less angry, less frustrated at the minor failures or errors that the fog causes. I’ve learned to put them into the context of Evie’s death. Compared to that nothing else matters.

Don’t get me wrong, I still detest those people that have caused us pain through their self-centred attitudes, and I can still get angry at the smallest thing. But the fog isn’t one of them. It is now a part of me that I accept, a part of the new me. It’s not a part that I like that much, but I also realise that it isn’t going to change for some time, if at all, so getting frustrated isn’t productive.

So writing about the fog is me thinking outside the box. Sort of. Or at least it would be if I could see the box! It’s a bit foggy in here ……

Je ne regrette rien .... Or do I?

There are two parts to this blog. My thoughts regarding the treatment that Evie underwent while she was ill and what we did or didn’t do while she was growing up; hence the question at the end of the title. One of the things that is a huge relief is that I truly believe that we did everything that we could have done to make Evie’s last weeks as comfortable as possible, and I don’t have any worries about anything that we did. I know that we fought the system, called in every favour and made absolutely certain that she was given every chance, right to the very end. Given my time again, with only very very minor tweaks, I would do the same again. So …. I don’t have any regrets or overhanging doubts.

But …… I do have other regrets.

We have very few recordings of her voice, and even fewer videos or films of her. Like most new parents, we had bought a camcorder when she was born and then didn’t use it. Even with the advent of mobile phones being able to take video footage, we still didn’t do it very often. We literally have thousands of photographs, and for that I am truly grateful. But we only have a small handful of videos. A 2-dimensional image is all well and good, but a video is a very different beast. Likewise, listening to her talk, brings her back to me too. She did a short interview on the radio with Simon Mayo talking about country music, but she was a bit formal. Even so, just hearing her voice is lovely.

I was lucky with work when she was at school in that I could get to quite a few of her sports events and matches, although she was rarely in the A teams for the various activities. I looked around at the parents present and it was sad to see so few fathers there. I’m glad I managed to get to so many. We can’t replace those opportunities now. I still miss not being there for ALL of them though. We also attended all of her music events, both playing the saxophone or singing in the chamber choir. She was thrilled to be involved in the choir and when she went to senior school, she neglected to apply for the one there straight away and regretted it. She applied again as soon as she could and was selected; happy child again. She really enjoyed singing and I am so glad that we went to so many performances. Kids love to make their parents proud. Those moments are fleeting and when your child has gone, even when they leave home, your chance to be involved has disappeared. Don’t pass up any opportunity because I promise you that one day you’ll regret it. For me the old excuse of ‘I’m too busy working to go’ doesn’t wash. If you can’t enjoy your child’s performances, what’s the point in working in the first place?

Evie was an incredible girl - I would say that wouldn’t I? There’s a film called ‘Arrival’ and one of the themes running through it is that the woman knows the future and that her daughter will die, and has the chance to side step having a child and prevent the loss. She doesn’t take it. That’s a massive decision, and not one that I intend to explore here, but you know what? I think I’d do exactly the same thing. Whilst I would give anything to spare Evie the pain that the tumour brought, she also brought an immeasurable amount of joy and love into our lives, and to those of the people she met. You can’t regret that.

Being Kind

Before Evie died, I had absolutely no concept of what it felt like to be depressed, or so low that taking your own life became an option. Recent events on the news about Caroline Flack have opened up the topic to a wider audience. It takes a major trauma for us to truly understand what that level of depression feels like. As a bereaved parent, the balancing act that we all perform can be precarious for much of the time, all made far more complex by the volatility of our emotions, those unpredictable triggers that come out of nowhere, and the thoughtlessness of people that were once considered to be friends.

I have no idea what was going on inside Caroline Flack’s head that drove her to such a drastic course of action, but for her to have reached such a point must have been a dreadful situation to face. Facebook is full of posts of women extolling their friends to look out for each other, rather than be nasty. A laudable process but one which should not be confined to women. For every dead child, there is a bereaved father too. He may be at home, or living away. That doesn’t matter. His heart is equally broken, his life equally devastated, his soul equally torn apart. The fathers need to be cared about too, they need the support of friends and colleagues just as much. I work for a charity that provides support to people working in the home improvement industry, which covers many of the construction trades. Two men every day in that sector take their own lives. That’s 730 men every year who face a life so lonely and depressed that ending it is their only option for whatever reason. The pressures that take them to the edge of the abyss may be different from losing a child, but they are there nonetheless.

I’m ‘lucky’ in that I have an outlet, writing, that allows me to vent, rage or just talk about what is happening to me. I said in Eggshells that there have been 4 occasions when I have quite literally stepped back from the edge. For me, writing is truly cathartic and it means that my close friends are aware of how I am feeling and so can offer the support that I need. But too many bereaved fathers don’t have that outlet, they rely on friends and family to be aware, to watch and to intervene when it is needed. They don’t ask for help, and in many cases society expects them to just get on with it. Asking for help isn’t a sign of weakness, it is precisely the opposite. It takes enormous strength to admit to yourself that you can’t cope. It takes even more to admit to those close to you that you can’t cope and that it is all too much. How much effort then does it take to admit to the world that you are struggling?

It is all of our jobs to keep an eye on friends, whether they appear to be struggling or not. It is not just about being kind, but also about being ‘aware’, and then getting up off your backside and doing something about it. Don’t sit there and think that someone else will sort it because they are most likely thinking exactly the same thing. When a bereaved Dad has taken his own life it is too late.

BE KIND, BE AWARE.

I Can Write, But I Can't Read.

You’d think that you couldn’t do one without the other wouldn’t you?

On Monday 23 Oct 17, in the early hours of the morning, I was sat on Evie’s bed in San Sebastian, she was in a lot of pain. I started to read a story to her. The only suitable one on my iPad was ‘The Great Gatsby’. As I read, it became apparent that it wasn’t distracting her from the pain and so we took her to A&E. You know the rest.

During our 8 days in intensive care in Spain, Evie was in an induced coma and when I was with her I sat and read an enormous tome on Napoleon’s attack on, and subsequent retreat from, Moscow. Once back home, we focused on Evie’s treatment and I didn’t read anything other than letters or cards to her. Since that time, over 2 years, I have been completely unable to read a book. I used to read a huge amount, particularly books on military history. Now, I even struggle to read an article in the newspaper. For me, reading is associated with Evie in pain. I can’t do it at all. I picked up Anthony Beevor’s book on Arnhem, and managed two pages, that was it. I don’t know if I will ever read again for pleasure. Right now it is just beyond me. In fact it is more than that, it is almost impossible for me to focus on a book. My mind won’t let me do it. My eyes see the words, the shapes, but nothing else.

Yet here I am writing a blog, have been writing Wednesday Wisdoms for over a year, and have written one book and have started a second. I’m now more careful about what I write and that means that I proof read them again and again. How does that work then? I can’t read a book for pleasure, but I can write about the most painful event of my life. If I read a novel, my brain disengages and I stop ‘reading’ even though my eyes pass over the words. The words don’t go in. But when I proof read the book, I focused on every syllable.

Evie loved reading. She usually had several books on the go at any one time. She loved writing stories too, so you might think that reading might reinforce a connection to her in some way.

I’ve spoken to other bereaved parents that read to escape to another world, another character free from their grief, their loss. A world where they can live another’s life for a little while. I can’t do it. I can’t even read books on grief. Yet I have written one. There’s nought as queer as folk, as they say.

Answers on a postcard please.

Confused of Melksham.

Taking Control

Evie’s death changed me. It changed everything about me. It has changed me in ways that I would not have thought possible. I am a very different person now, my core values are different. Moreover, I realised that for a long time I had become reactive, rather than pro-active. Partly, I think that this was due to the lack of energy, the inevitable exhaustion that affects all of us that have lost children. But it was also caused by a lack of self-confidence. I failed to keep Evie alive, so my small-bear brain worried that my decision-making processes had been compromised, so I would wait until a decision had to be made before I committed myself. The rights and wrongs of that feeling aren’t the point of this blog though.

In the 2 years since Evie’s death, no-one has sought to benefit from my grief, or take advantage of the situation; until now. I won’t mention any names, but suffice to say that I should have seen it coming. I was discussing the particular incident that made me think about it with Pats when the penny dropped. That in turn got me thinking about the whole reactive/pro-active thing.

I have always been ready and willing to discuss death and grief openly, taking control of how I interact with others. Not accepting their willingness to hide form the death of my daughter. I’m open and honest about Evie’s death at all times, which I know can be difficult for some to read but try living it. It might even act as a barrier to their continued friendship, but I believe that I owe it to Evie to show the world what she meant to me; what her short life was worth. As I’ve said before, if people can’t cope with my pain, then that’s just tough. Try living my life for a day before you pass judgement. This blog is a case in point, so is Eggshells; the world doesn’t talk enough about the death of a child and needs to, especially where people need support or a shoulder to lean on. But I hadn’t really given any thought to taking back control of the wider aspects of my life because I hadn’t realised that they had been affected as much as they have; that I had changed in that way. I certainly hadn’t given any consideration to the fact that someone might deliberately choose to benefit from my weakened state.

Taking back control of my life is something that will not come easily as it will require energy and focus; things that I have to fight to maintain. I need to develop new routines and force myself to do things. Not easy, but entirely do-able. How grief affects everyone else will be very different from how it affects me, but the exhaustion and self-confidence issues seem to be common across the board. If we can overcome those issues, or at least make inroads into them, then we stand a chance of tackling the problem of lack of control. When you track the problem back to its source, you see that the whole ‘failing to keep Evie alive’ is the trigger. But by stepping forward a little, you realise that taking control once more solves a whole load of other related problems, one of which is that I frequently feel overwhelmed by work and things to do, even though I can sort it all out quickly with a little application.

The important point for me to make here is that it most definitely isn’t about getting back to the old me; I don’t want that as Evie’s death has changed me and I must acknowledge that. It is about strengthening the new me, and taking control of my own destiny once again, being responsible for the direction that I head off in. It is about developing ‘workarounds’ while I figure out a long-term solution. If I can do that, I can keep the workload and chores under control, I can fend off the feelings of inadequacy, and I can spot the folks out there that aren’t pulling their weight or are seeking to benefit.

It most definitely won’t be a quick fix. For the moment though, a certain card has now most definitely been marked. This person has made a fatal error - they have pissed me off and sought to benefit from my daughter’s death. Bad move sunshine, because now I’m annoyed.

A Satnav for Life

Driving up to work in Bromsgrove yesterday, I left home at dark o’clock as usual. Heading up the A350 towards the M4, I looked at a small row of cars ahead of me and through their back windows saw the gentle glow of green and blue satnavs sat on their dashboards. The drivers either following blindly, or maybe relying on the directions and instructions to reach their collective destinations. As obstructions, delays or road closures appear, these navigation systems recalculate the route and divert you here and there. Their aim is to get you where you want to go. It got me thinking.

Could you invent a satnav for bereavement, or more specifically, child-bereavement? You start at the beginning of the day, and your destination might be bedtime, the end of the week, month or year. Or it might be a lifetime. Wherever you set it though, it relies on information on delays or obstacles to be fed in to keep it up to date. In some cases that’s straight-forward enough; you plug in your child’s birthdays, anniversaries of your child’s death and Christmas. You can even have a rough idea of other less predictable things like her friends doing their GCSEs, or that block of 6 weeks of isolation called the summer holidays. The unpredictable stuff has to be dealt with as and when it happens, and just like a real satnav, sometimes you just have to sit stationery for a bit in a jam and let time sort it out for you.

One problem occurs to me though. If there is a blockage or obstacle, you have to know what the ‘roads’ around you are like so that the grief satnav can figure out where to divert you and here lies the problem. A grief satnav knows where you are and might know where you want to be at the end of the day or week. But it doesn’t have a clue what is on either side of you. It shows you the first few yards of a side road but little else; there’s no ‘mapping view’. To complicate it all further, those side roads change when you are on them and you can’t always predict how they will change. It’s like a computer game where all you can see is the road in front of you, and although side roads exist, you can’t see where they lead until you take them. It’s like driving in thick fog, without a map. So in fact, it wouldn’t be so much a satnav, as a visual, short-term representation of where you are at one moment in time, and will be in the next few seconds or minutes. That’s as good as it can get.

So even if you could invent a satnav for grief, it would be completely useless. You have to trust your own judgement, your gut instinct, and go with what feels right. Unlike most of us blokes when driving though, when you get it wrong, you have to admit it and turn around and go back. You can ask for directions, but quite often those that can really help are as lost as you are.

Welcome to my world.

It's Good to Talk

Talking about our children is something that comes naturally to any parent. When your child has died though, you quite simply run our of stories to tell as you aren’t generating new ones. But we still need to remember, to talk about those good times and remember them. In a much broader sense, we also need to talk about the loss itself and what it means for us. How it has crippled us. Not just a two-minute chat over something trivial, but a meaningful conversation that delves deep into our emotions. Friends, no matter how close, aren’t always able to understand this need which is why the bereaved parent community looks to its own members for help.

Being able to talk about Evie and her death without having to ‘censor’ what I say is incredibly important. It allows me to just ‘be’. To be honest and say the things that friends or family may not understand - or want to hear. When I wrote Eggshells, I still left out the detail of how her tumour grew and how it affected her. I did it because I knew that most of the world wasn’t ready to hear it.

Everyone out there carries their own baggage in some way or other, and that in turn impacts on what we can talk about to them. Our monthly group sessions with the Compassionate Friends offers a release that simply doesn’t happen anywhere else. Everyone in the room knows instinctively what we are feeling and can offer support and empathy - note: not sympathy. Being amongst like-minded people is the only time, and I mean the only time, that I drop my mask completely, take off the body armour that I wear all day, every day and relax. I’m not embarrassed about being upset in front of friends or work colleagues, but recognise that some are simply not equipped to cope with it. Watching your child take her last breath rips into your soul, and is a level of pain way beyond the normal world’s comprehension. Finding others who have experienced the same loss, is so so important.

Importantly, finding honest, open support is crucial if we are to survive this new world of ours. I missed one support group meeting in November due to a work commitment and then completely forgot to go to the December one; my short-term memory is shot. January came as a very welcome respite, just for a couple of hours. If you are a bereaved parent reading this, and haven’t joined the Compassionate Friends, then I cannot stress strongly enough that the help that they give is fabulous and well worth your time and effort. If you know someone that is a bereaved parent, then point them in TCF’s direction. We don’t need to face this alone, and neither should we.

Robins and Feathers

“When robins appear, loved ones are near”. It’s a phrase that we have seen time and again since Evie died. I really have absolutely no idea where it originated, although I suppose I could do a bit of research on the internet in an effort to find out? Likewise, the appearance of small white feathers with no logical explanation is also something that we have noted, usually at time of high stress, since she died.

Both events signify that someone that we love and has died is trying to communicate with us, offer re-assurance perhaps or just let us know that they are still around, keeping an eye on things. I have spent all of my life being a major cynic but now …….. who knows? More pointedly, do I actually want to know?

The thought of Evie’s spirit still being around keeping an eye on things, or trying to communicate in some way is incredibly comforting. It means that she isn’t completely gone, that something, her soul perhaps, lives on. That in turn brings hope. Hope that we will see her again, hold her again and that this world of ours isn’t just some random act of evolution. Hope keeps us going, fighting against terrible odds. Sometimes it is forlorn, or misguided, but we hold onto it anyway. I have found that I am looking for signs anywhere, that she might still be around. Those random acts that have no logical explanation; Ward Thomas playing their new album at a concert, then inexplicably playing Evie’s favourite song in the middle of the set. There were no other old songs at all in that concert.

Over the last two years, we have found small white feathers in odd places, usually at times of high stress or emotional pain. How they got there usually defies explanation. But they are there nonetheless.

Somehow, the presence of a robin when we are walking changes things. It brings a peacefulness that wasn’t there before. Am I imagining it? Does it matter? It gives comfort and that is all that is important. This new life of ours is tough enough so anything that helps has to be a good thing. Logic simply doesn’t come into it, and that’s the way it will stay.

Two Years

Two years ago today Evie died. Just like last year, we will visit her grave, read to her from the daily poem book and another written about inspirational women. We will place fresh flowers on her grave and gently caress the headstone. Today is the culmination of over three weeks of pain that started in mid-December as we approached Christmas. Today marks 2 years without you Monster Munch.

I heard a song the other day from Luke Bryan and he said that the ‘Days go slowly, but the years fly passed’. That sums it up pretty well for me. The days without Evie are slow and seem to take forever, yet here we are 2 years down the line already.

This isn’t a Wednesday Wisdom blog as such. It is a statement of love for my beautiful, amazing girl who I miss so much. I have said it before and I will say it again. Evie made me a better person. She taught me to love unconditionally, to put someone else ahead of myself in all things. She showed me that I could be a father, something that I had never thought possible; anyone can have a child, but you have to want to be a father. Being a parent brings with it not just responsibility, but also 100% commitment to love someone else more than yourself. Before Evie was born, I didn’t know what that meant.

It’s a cliche, but the world is a poorer place without you in it.

We love you Evie, and always will.

Why? The Question that Refuses to Go Away.

Why? Why her? Why did she deserve to have a tumour? I have asked myself these and other questions constantly since Evie died 2 years ago. There is no answer of course, but the question itself never leaves me. Even if there was an answer I doubt very much that it would quieten the noise in my head. It would just create other questions.

It is all part of the whole ‘acceptance’ argument I suppose. Accept that you will never find that answer and you are a step closer to living with the grief in a way that doesn’t split your soul. The type of person that I am means that I am always seeking answers. Answers to the trivial and the meaningful. Why did Evie love going to the Bishop’s Palace in St David’s so much? We had to visit it every time we came to Pembrokeshire. Why did she choose to help others so much from such an early age? And of course, why did she have to die so young?

‘Why?’ is a question that raises it’s ugly head every day when I watch the news. Why is a wonderful human being gone, and yet some seriously rotten people remain? It’s there every day when I wake. Her death, and the deaths of thousands of children every year, is fundamentally wrong. When we look around us at the wider world, we see the unfairness of it all. The question makes me deeply sad and angry all at the same time. But as hard as I look, I can’t find an answer, and so in turn I can’t find peace. I know full well that if I can put the question out of my mind, my own life will be easier. But to do that, it feels like I am abandoning Evie in some way, not doing her life justice. it somehow feels as if I owe it to her to understand.

Our nature as human beings is to find reason behind events, find someone or something to blame, which is why the ‘Why?’ question is so important. If I can answer the question, maybe I can blame Evie’s death on someone or something else, so it wasn’t my fault. We will never know why that first cancerous cell took hold and grew. We will never know how it got there, or what the trigger was, if indeed there was a trigger for it to start growing. The neurology team said it was most likely a chromosome fault. All that does is ping up another ‘Why?’ question. People have said that her death was no-one’s fault and that is true, as is the fact that it couldn’t have been avoided, but the ‘Why?’ question still remains.

Finding an answer to ‘Why?’ is incredibly complex from a mental health perspective because, like Evie’s cancer itself, it is has infiltrated so much of my mind. Would finding an answer bring peace? I doubt it very much. Will I just accept that there isn’t an answer to be found? Probably not, because to do so would feel like a betrayal of Evie. It makes no sense, but in a strange way, having a question to answer gives me a focus, something to cling onto; it means that I haven’t given up on her. It’s yet another double-edged sword.

So I will continue to look for the answer, knowing that it cannot be found.

A New Year's resolution - of sorts

In ten days it will be two years since Evie died. It’s a cruddy way to start 2020 but we can’t avoid it or hide from it as much as we might like to. Christmas is behind us thankfully. Now on 1st January it is time to look into 2020 and what it might bring. Our second year without Evie was horrible. Our second Christmas without her was far worse than the first. What will the third year be like, how ill it unfold and how can we influence it? A lot of what we have to deal with will be out of our control, and we will be purely reactive; the unexpected events or triggers that are always there. We can plot out many of the bad days as those dates or events are fixed. We can prepare in some small way.

But we can also influence a lot of things and setting some goals for the year, resolutions if you like, that may just take the sting out a bit. Setting those goals also gives you a bit of a target to aim at. Having a direction to head off in is critical for me, otherwise I’ll just drift. First and foremost I’m going to rest. A strange resolution, but a vital one. Despite having recognised early on that taking on more and more work was counter-productive, and putting measures in place to deal with it, over the course of 2019 I gradually drifted back into the same old routine. The consequence is that I’m knackered. The break over the Christmas period came just in time, giving me the opportunity to catch my breath at least in part. Both work and Evie’s Gift have eased off a little since mid-December, giving me time to catch my breath. For 2020, I’m going to tackle some of the jobs that I’ve been putting off, which will in turn give me some capacity back, and more importantly, might just give me my weekends and evenings back too.

I’m also going to book a holiday, maybe even two. A week away fairly swiftly, then a fortnight in the late spring or early summer. Time away from home is important because you don’t get tempted to do the hoovering or sweep the floor, you just rest. It also feels like a proper rest.

My third target is to step up the writing again. When I finished Eggshells, and then started on the second book all was okay, but then I lost momentum and it has been stagnant for weeks. That’s partly because I didn’t have the time or energy, and partly because my heart wasn’t in it. The knock-on effect of that was that I lost the cathartic nature of writing too, which when added to the fact that I have hardly done any walking either, meant that I had lost the two main avenues of healing; the last couple of months of 2019 were pretty miserable. So …. more writing and lots more walking. We are here in Pembrokeshire for a few days and have done some coastal path hikes already, but now I need to step it up and do a few 20-milers on my own.

My final target is to find hope if it exists. It is the central pillar of the second book and without it we are lost, because I can’t get the other crud back into Pandora’s box. What all of the above adds up to is that, collectively, my New Year’s Resolution is to look after myself properly; right back to the topic of my first Wednesday Wisdom a year ago. I don’t pretend for a moment that it will be easy, but it has to be done. Some of the things that I need to do will take careful handling, never my strong point, but I won’t be able to break out of this vicious spiral of fatigue and depression if I don’t. Evie’s memory deserves my best efforts and my fullest attention, because if I don’t do it, who will?

So I know what I’m going to do. What about you?

A Day to Remember Those We Love

Today is a difficult day for any parent who has lost a child. It’s one of those significant milestones in the year, like the child’s birthday or the anniversary of their death, that is set apart from all others.

No ‘Wednesday Wisdom’ on Christmas Day as such today, just the wish to remember our beautiful girl, and all of the children of those incredible parents that we have met along the way in this new journey of ours. The ones who fight on to remember their child, keep shouting their name, keep lighting candles. To Margaret, Clare, Kim, Sharryn, Carolyn, Sharon, Gina, Maria, Beth, Sam, Adelle, Anna, Sue, Jenny and so many others, we hope that today is a peaceful day for you. We hope that your child’s memory is vibrant and loving.

Evie made me a better person, she taught me lessons that will stay with me forever. I shall love her forever. Looking through the photographs of her opening her presents from years ago, she always smiled so brightly. She always ate everything that I put in front of her. She loved Christmas and she loved us.

Today we will be out and about in Bath, serving Christmas to other people that are lonely. Then home for a chilli and a bottle of wine. And we will light a candle for our gorgeous girl, remembering her smile and her laugh. For those of you with children, or surviving children, we wish you the very best Christmas that you can have, in whatever form that may take.

For those of you that have lost your only child, or all of your children, we light a candle for them too. Remember those that aren’t here to celebrate with us. Remember those we have loved and still love. Raise a glass later today to show the world that their memory burns brightly still.

We Support Each Other but we Journey Alone

The title of this blog was posted on a support group FB page just now. I read it and thought that it summed up our new world perfectly. Bereaved parents form a unique group within society, and although we understand each other’s loss, can be a shoulder for each other to lean on, and even empathise in a way that muggles will never understand, we still walk through life alone. You can be lonely in a crowd.

Even being part of a marriage or partnership doesn’t pull you together and it can have the opposite effect when you lose a child. Patsy’s journey through this hell is very different from mine. We’ve lost the same wonderful girl yet our pain is quite different. The language that we use, the pain that we experience, the emptiness that we feel is totally different no matter how similar it may appear to the outside world.

But ….. the second word in the title is the key. Support. We support each other. We listen, we talk, we cry together. And we can laugh together too. It isn’t a crime, nor is it wrong. We can laugh and cry all at the same time.

A strange world, that is as alien as Mars.