Three Years

Three years ago today, at noon, Evie died. The cancer finally killed her after 13 weeks of struggle. It is as raw in my mind today as it was then, I can remember that morning so clearly, who was there and what we were doing. I haven’t ‘moved on’. I’ll never move on, why would I want to? The more you love, the more you grieve.

I was asked the other day how these milestone days like her birthday and the anniversary of her death felt; were they the same? They aren’t. Milestones like her birthday or Christmas feel empty and have a deep sadness because she’s not here to celebrate or enjoy them. The anniversary of her death is something entirely different. The rawness of the pain of that day returns as sharp and piercing as it was in January 2018. I relive the moment she took her last breath; I can hear it so clearly even now. That memory sits there, in the front of my mind all day. But just like Christmas and her birthday, it is a day that I can’t avoid or hide from. I have to face it down.

As we have done in the past, we will try and do something meaningful today. We will talk about her, remembering the bright light that she was. We will take flowers to her grave and talk to her, telling her what we are doing.

Even now, 3 years later, it still feels like a dream, that it hasn’t happened and she will come trotting back from a school trip. But it isn’t a dream, it is very real. The pain of her death is very real, and I feel it physically too. My chest is tight, a permanent headache, the nausea, the exhaustion.

Today is a day to take slowly, with no expectations, and one that will be over in a few hours. It is a day that will be survived. It is a day when our friends will remember her, light a candle for her and say her name. It is a day when we will continue to find the best way to create a perfect legacy for her. It is a day when Evie’s Gift, the charity that carries her name, will still help other families through some pretty tough times.

You may have died Sweetpea, but I promise you that you will never be forgotten.

There are Two Types of People in This World

So aren’t there more than just two types of people? Probably. Alright, most definitely, but I would argue that it really depends on how you measure it.

For me it is simple. The world is split into those that have known real love and those that haven’t, or haven’t yet. That love could be for a partner, a parent or a child. Love means different things to different people, and I remember at the age of 16, over 40 years ago, becoming aware that I was in love with Patsy. If you compare that love then and where it is now, they are very different beasts. Love is a living breathing thing and as such it grows and evolves.

There is a cliché that says that you don’t appreciate something until it is gone. That may well be true, but it isn’t the case with me. In Evie, we created a person that could have made an enormous difference in this world. Evie’s death changed an awful lot about me, how I thought about other people, the world and where I saw myself fitting in it. My love for Evie is as strong today as it has always been. My love for her mother has not only grown even stronger since Evie died, but it has changed in that it goes far beyond an emotional state. I have always said that we are so much more than the sum of our parts.

But with love comes pain when someone dies. The grief of Evie’s death is so deep because I love (note not loved) her so much; her absence is a constant ache. The depression is hard to carry sometimes. This kind of pain is an invisible killer. But I have no fear of death. A good day for me, is like a cruddy day for you. Right now, I will gladly trade places with Evie, and equally will do whatever it takes to protect Patsy from harm. Love does that to you. I don’t have to think about it, it is instinctive. Nothing, and I truly mean nothing, is important compared to my two girls. Everything else is secondary. That love pervades everything in my life, down to a molecular level. It is why so many people will never grasp how a bereaved parent thinks or appreciate that they have nothing else to lose. You can’t threaten a bereaved parent, because they don’t know fear.

I look around at others and see people that have never experienced love to that degree. They go through life unaware of what they are missing. They do harm to others for the fun of it. They place their own rather insignificant needs ahead of others. I pity them. I pity them because the concept of love brings an enlightenment that puts the world into perspective. It gives you the knowledge that not everything in this world of ours is as important as we might like to think. It defines true value. It creates perspective. And it destroys the boundaries that we once thought were so important.

Love doesn’t make things perfect by any means. It doesn’t stop disagreements. It doesn’t give you a better mood. But it does allow you to understand things in a way that you will never achieve without it. I’m struggling to put this into words effectively, to get my message across in a way that doesn’t sound trite or corny. I think that the other parents that we have met through the Compassionate Friends will understand what I am trying to convey, as will others that have had a loved one taken away too soon.

This blog isn’t about some Disney-esque notion of romantic love and happy ever after. Fairy tales are exactly that, fairy tales; stories built around an idyllic concept of something that is almost impossible to find. This blog is about how love in its purest sense changes you to your very core. Too many people are labouring under the misconception that they matter to the world. I’m sorry to dispel the illusion, but you don’t. When we are gone, few will notice or remember. Love makes you realise that as individuals, we don’t exist in a vacuum, we are part of something more important; a family. If you have experienced that level of love, then you are truly blessed, but I have a feeling that if you really understand what I am trying hard to say here, then you too are nursing a broken heart.

Here We Go Again!

There are 2 sides to the ‘here we go again’ part of this post - our 3 year anniversary of Evie’s death and Christmas. Both bring unique issues and problems. We been through both twice before, know what to expect and how others will react. How so many people will hide from us, denying the pain that we feel so deeply. Even worse, there are a select few that will seek to take advantage of it. But previous experience of Christmas and the anniversaries doesn’t make it easier, just a bit different. The ride through the 3-year anniversaries began on 12 Oct when we hit the anniversary of Evie’s first blinding headache and they will run through to 1 Feb when it is 3 years since her funeral when 470 people showed how loved she was. In the middle is Christmas. Each little milestone triggers a memory of that day and once again we relive the whole experience again.

I say ‘here we go again’ because it is all as inevitable and unavoidable as paying tax. For 12 Christmases, life was fun. Full of energy, laughter and Evie being so excited. On her last Christmas, we gave her a Christmas dinner and she had forgotten it all by the next day. She couldn’t remember the presents, the cards, the dinner. Nothing. So we did it again. She had her presents all over again and she got so upset because she couldn’t remember anything. And the next day she had forgotten again, the surgery and cancer had destroyed her short-term memory. This will be our third Christmas without her. It will be a day like any other but with more poignant tears. Our biggest decision now is whether to have curry or chilli for dinner.

On 2 Feb 21 after the anniversary of her funeral, we will relax a little and start to gather our strength ready for the next round which will begin again just 7 short months later with what should be her 17th birthday.

If you know someone that is nursing a broken heart because of the death of son or daughter, husband or wife, sibling, or mother or father, then please cut them some slack. Watching the world have a great time when there is a black hole in your heart is the hardest thing to do. I’m not after sympathy, just understanding. While you may be moaning that you can’t give Great Aunt Nelly a hug this Christmas because of Covid 19, some of us will NEVER hold our loved ones again, ever. Too many people are taken from us too soon. Too many vile people survive to do their worst while too many gentle, kind people are gone.

So for now, the body armour is on, the mask is in place and I will smile when you wish me a ‘Merry Christmas’ knowing full well that we will be alone, not through choice but through circumstance. We know that most people wish us ‘Happy Christmas’ simply because they don’t know what else to say. Some, sadly, just don’t stop and think because quite frankly they don’t care. Christmas for us and far too many others will never be ‘happy’. So how about trying something else for a change like “take care of yourself this Christmas”. Or …. “we will light a candle for Evie this Christmas”. It doesn’t take much effort, so give it a go. Show you care.

Looks like my angry phase is back again!

A Cancer of the Soul

On 11th January 2018 I was diagnosed with a terminal illness; grief for a dead child. Sounds a bit melodramatic I guess, but true nonetheless. There’s no cure, and treatment is at best hit or miss. This disease eats away at you from the inside. It corrodes. It takes away so much of you, physically and mentally. Some of the effects are predictable. Anger, fatigue and sadness. Others come as a surprise; loss of motivation, self confidence and decision-making. Over time you gradually weaken, you never recover lost ground. At best you can hope to stand still for a while. Everything is two steps forward, three steps back. Talking in cliches is the worst!

Some people choose to pretend it hasn’t happened to them and hide from it. But the corrosion is still going on and eventually it will catch up with you. The grief is insidious in its effects. It is doing its work out of sight, quietly destroying parts of you. It is a cancer of its own. Just like the cancer that killed Evie, this one eventually gets you.

But ………. the worst part is that it doesn’t shorten your life. It just makes that life more difficult, more painful. It takes away self-confidence, inner resolve, energy and motivation. It accentuates the weaker areas of your mind, and hides the stronger parts, camouflaging them so that you can’t draw on them. Many parts of our physical selves will regenerate if damaged, heal sometimes with a scar, but heal nonetheless. The death of a child prevents that healing when it comes to your soul.

The death of a child causes part of you to die too. And then it takes your resistance, your ability to fight off ‘infection’. It’s as if the white blood cells of your soul have died too. So how do you fight this evil little cancer? What is the emotional equivalent of chemo or radio therapies? This is the tricky part. There’s no one size fits all treatment. You have to find your own way. For me it’s part work, part creativity, part walking. Covid-19 aside, it doesn’t cure, it just slows the progress of the disease. There’s no remission, no bell to ring at the end of your treatment.

To find the treatment that you need, you have to experiment, try out different things and see what works. Then you have to adapt them as time goes on to keep up with how the cancer is evolving, mutating as it does its work. Luckily there’s a lot of advice out there, lots of ideas to draw upon. Sadly, I’m not the only bereaved parent, and I won’t be the last either. I can draw upon the experiences of others to look for ideas. I’ve discounted more than I care to remember, but equally there are other things that can help.

The key though is that you have to want to do something about it, and that is harder than you might think. But you can do it. Friends, real friends, are the key. To those true friends that have helped us …. thank you.

The Biggest Lie

What’s the biggest lie that gets told? A politician saying “Vote for me because I promise to …..”? Nope. “Of course I love you!”? Nope. ….. It’s “I’m fine” . The answer that we give when people ask “How are you?”. It is made even more believable because we even smile when we say it. We know that it’s a lie, yet we repeat it time and again. What makes it worse, is that the people that we say it to know that it’s a lie too, yet almost never challenge it. What drives us to say it then? The answer to that is far more complex than you might think.

I’ve said here before that people don’t want to hear that we aren’t fine, that it still hurts. That they just want to park discussion around how we feel because they can’t cope with the answer. That is still true, but it isn’t that clean cut because we still say it to people who genuinely care. It’s my belief that they don’t challenge it because they want us to feel less down; they want it to be true. So sometimes they accept it at face value.

So why do we say it? Why do we consistently deceive our friends and even ourselves? Is it because we too want it to be true? Do we want the pain to be over so much that one day if we say it often enough it might just be true? Even when we know that we will never be fine? Sometimes I know that I fling it out there just because I’m too weary to tell the truth. That the body armour is locked in place and I’m just not going to take it off for anyone. There are those people that I know that don’t want to hear anything else, and if I said “ I’m rubbish actually” that they would change the subject faster than Donald Trump launching a legal challenge against a Biden win. These aren’t true friends, just acquaintances.

Don’t get me wrong, I have friends that reply ‘Really?’ and press for a truthful response, but they are few and far between. And as time goes on, more people gently shift from taking an interest to just bland acceptance. They’ve moved on so expect me to have done the same. We are working through the 3 year anniversaries of Evie’s illness at the moment, and to the majority of the world, that’s a lifetime and they can’t understand why we still hurt.

But deep down I do think that I sometimes say “I’m fine” simply because it is the easiest option. Maybe I’m being lazy, maybe I’m just worn down. There’s nothing insidious about it, but sometimes the truth is just too difficult to say. It draws the pain to the surface again.

What I am slowly learning is that it doesn’t matter what you say. The true friends that we have, the other bereaved parents, and those few individuals out there that have that wonderful life skill called empathy will know the truth no matter what you say, or how convincing you might be.

So …. “How are you?”

Pivotal Moments in Life

There have been two truly pivotal moments in my life. Not momentous occasions like marriage or graduating from flying training; getting my ‘wings’. Events that changed me as a person, and the direction that my life took. Events that changed me to my core. They are Evie’s birth and Evie’s death. Both affected me in ways that I didn’t expect, and, in effect, created a new person. Some might think that meeting Patsy or getting married would also be one of those moments but they weren’t ….. sorry. Patsy and I met at 12 years old and had been married for 33 years in September. We grew up together, and our lives moulded into each others’. We evolved together so it wasn’t a sudden change. Over the years I have lost my Dad and Patsy’s Mum and Dad. Those events were terribly sad and hurt, but they didn’t change me as a person.

Evie was something else entirely. Her birth brought another being into my life that relied entirely on Patsy and I. She couldn’t look after herself in any way. It’s a cliche to say that she awoke something in me that I never knew was there but it’s true. I had always been anti-children. Noisy, smelly little creatures that got in the way. It came as a complete surprise that I had any sort of paternal instinct. Her birth changed everything and I loved it. I went from being a man to being a father. Everything changed. My priorities, my focus, everything. It was a revelation.

Evie’s death brought the second pivotal moment. It was cataclysmic. It devastated everything that the previous 13 years had built, along with everything before that. The physical feelings are bad enough but the emotional ones, the change to me as a person cannot be over-estimated. The changes have been so deep that I don’t recognize much of what is left. It is an unnatural place and one that is still alien in so many ways. I take anti-depressants and have been diagnosed with depression.

To me, pivotal changes are ones that change you forever. Change how you think, how you act, permanently. I have definitely changed forever. There’s no going back even if I wanted to. My 18 year-old self would look at me now and be convinced that we weren’t related. Children’s births define us. Their deaths rewrite the rules altogether.

A Watershed Moment

This weekend was our 33rd wedding anniversary. Since Evie died, we have never ‘celebrated’ our anniversary in any way because it just felt wrong to do so without her there to share it with us. Having fun just seemed wrong, disloyal. Moreover, spending money on luxuries made us feel guilty because the only reason we could afford it was because she wasn’t here.

Over the last couple of months, we have been trying to get out more, visiting a National Trust property each Sunday, armed with the camera, to focus (sorry, lousy pun) on something else and be creative for a while. Taking photos has proven to be really relaxing for me as I have to concentrate on what i am doing for a while, yet it doesn’t intrude on the grief. Evie loved taking pictures too. It brings me closer to her again.

This weekend, as we had exhausted all of our local NT properties, we decided to go away a bit further and stay the night. Plan A was to book a Premier Inn or Travelodge, but we wanted to eat on site and have a decent meal so we booked a nice pub with rooms. The meal was beautiful and in a moment of weakness, I ordered an eye-wateringly expensive bottle of champagne, not to ‘celebrate’, but simply because I haven’t drunk Krug (the Dom Perignon I ordered had sold out) in a very long time and wanted to try it again. The food, service and champagne were all lovely and for the first time, we didn’t feel overwhelmed by guilt. We talked about Evie, the grief, the loss, us. The next morning, we had an enormous cooked breakfast and walked around Basildon Park and took photos.

It was the first time in over 2 1/2 years that we had gone out for a blow out meal. The bill was enormous but we didn’t care. We had figured out that we deserved the relaxing time. The chance to be together and walk, talk, hold hands and enjoy ourselves. Enjoy. A word we hadn’t considered for a very long time. We smiled a lot. We talked about how around 3pm, when we ended up at a Riverside pub on the Thames having a drink and ice creams, that Evie would have wanted steak and chips and that we would have let her have it because we knew that she would have appreciated it and eaten it all. Medium rare, plenty of blood of course. For the first time in a very long time, we smiled when we talked about her rather than cried.

It was a true watershed moment.

Cowards Beware

On 11th January 2018, we were with Evie at the moment she died. She was 13. We were holding her hand when she took her last breath. That moment rent our souls. When she died, our future died, and as we had created her from our love, part of us died with her.

A child’s death is something that no parent should endure and every day afterwards is one full of pain. Depression. Confusion. Anger. Searching for a reason ‘why’. Sometimes, very sadly, people seek to take advantage of your weakened state for their own advantage. These people are to be pitied because their cowardice shows them for the people they truly are.

For the last 930 days, we have got up, put on the mask to show the world, picked up the body armour, and got on with the day. Each day we face the complete lack of understanding in the wider community who simply don’t know what to say or do to help. But each day, you survive another 24 hours. Each day, you build a little more resilience. Each day you become, without realising it, a little bit stronger.

Then one day, the moment comes when it dawns on you that no matter what people might think, they cannot hurt you any more. You have fallen as far as it is possible to fall. You have survived the single most horrific event of your life and got up again and faced the world again. You understand that you can face down anything that these bullies try to throw at you, and that you have the strength to deal with it. You know that you have the terrier-like tenacity to dig, research, investigate forensically their best attempts to bully you. But most importantly, because you know that you have survived and thrived, that you will win this and that they now face a storm of pain, unleashed from 2 1/2 years of loss. Pain that had needed an outlet and now has one. Pain that will galvanize energy, strength and a determination to finish what you start.

Dear World, dear Bullies - you cross a bereaved parent at your peril. For now you have unleashed the whirlwind.

Time Off

Admitting that I couldn’t cope with life at the moment was a long time coming. I’ve been wading through treacle for months. Facing the problem was definitely overdue but ….. It heaped failure on top of failure. For two and a half years, I had been told how ‘strong’ I was. How inspirational, yet all the while I knew that I was barely keeping it together. Cancer had stolen my daughter from me. I needed something to go right once in a while, just to prove that I had value. The little wins that had buoyed me during the difficult times dried up once C19 set in and finally, having put off the inevitable for weeks, I gave in and uttered the words to my counsellor; “I can’t cope with this crap any more”. Life was too much. Work was too much. There was too little energy left in me to continue the charade. I dropped the mask that I wear every day, I took off the body armour that I carry to protect myself. I was just too tired to keep going like this.

I listened to my counsellor, and asked for help from both the doctor and my friends. I needed them to not only take some of the load, but also to do some of the thinking for me. I said on numerous times “Tell me what I need to do and I’ll do it”. I couldn’t think properly. I couldn’t work through the simplest problem. So many people said “If you need anything just ask”. I didn’t know what I needed, that was the problem. I couldn’t problem solve. I needed someone else to do that thinking for me.

So, I’ve taken some time off work, to give myself the time and space to rest in the short term. I knew that this was not going to be a quick fix, and that I had to do something radical. But that admission of being unable to cope has made me feel like a fraud. I wake up, feel vaguely okay and then want to get back to work. I should be able to sort this out, I always have been able to in the past, so why can’t I do it now? Then I feel relief. Relief that I can forget the work pressure for a while, ignore the budgets, the plans, the meetings. Then back I go again, feeling guilt that I’m not at work, that opportunities to generate income might be passing me by. Others appear to be coping, so why can’t I?

I know the answers of course. Massive trauma, exhaustion, stress, then pile Covid-19 on top of it. They’ve all combined to make a cruddy situation untenable. Patsy forwarded me a link to an NHS website talking about occupational burnout. I was showing all the symptoms and more. I don’t like this position of being down, unable to think. I want to get back to work; I’d rather have the pain of work and overload, than this feeling of being lost that I am nursing now. I keep telling myself that if I rest, I’ll gain the strength that I need to make a better recovery. It’s the means to an end. That to go back to work early is a mistake and will almost certainly lead to an even deeper dive at some point in the near future. Work was my last prop, the last anchor stopping me from drifting and I am finding it almost impossible to stay out of the work world. The feelings of failure are enormous, as bad as how it felt when I failed to keep Evie alive. There’s no logic in this at all and I know it. I can rationalize the problem easily enough, I just can’t believe it.

So this sick leave is Phase 1. Rest, recuperation and rebuild the coping strategies for dealing with Evie’s death that disappeared because of Covid-19. Relearn the trust I had in my instincts. Relearn the trust I had in my own judgement. Then think about Phase 2 for when I do get back to work. Things have to change. I can’t go straight back to that world as if nothing has changed, because if I do, I’ll be back here again in a couple of months. Maybe I’ll drop to 4 days a week, but the main thing is that others have to carry some of the load instead of standing on the sidelines throwing rocks. During the virus, I sent out 57 Covid-19 e-mail updates to work’s 14 trustees. That’s 798 potential replies even if it’s just ‘noted’. I got 11. I counted them. 11. I leave it to you to figure out what that feels like.

New rules start today. If you want me to care, then it has to be a two-way street.

Half Full or Half Empty?

Throughout my life, I have been an optimist. I’ve always managed to work through whatever the trouble was and come out the other side if not exactly smiling, then content that I had reached an acceptable compromise. I didn’t see problems, just a situation where the solution that hadn’t been found yet. Most definitely a glass-half-full kind of person. Patsy is the opposite; a glass-half-empty person topped up with toxic waste and nuclear contamination. My optimism has provided a foundation of strength to build on and to help carry me through the last two and a bit years without Evie. I have always ‘known’ that no matter how crappy I felt, that eventually, I would break out the other side and get back on an even keel again. It meant that I was a heart-half-full person. And so it was from 11 Jan 18 when Evie died until a couple of months ago.

Covid-19 changed all that. It took away all of my coping mechanisms; every last one. It took them away for just long enough to overcome the heart-half-full optimism and tip away the rest of the contents. Trying to run two charities, both under immense financial pressure, deal with all the usual home problems (why is it that all the electronics break at the same time?), keep half an eye on an elderly mother, deal with lockdown and just functioning day-to-day became too much. Father’s Day was the final nail in the coffin. It was the lowest that I have ever felt. I just wanted it all to be over. All of it. I found myself staring at the myriad of pills that we have in the bathroom running the calculation in my head. I did nothing because I had promised Patsy that I wouldn’t leave her on her own.

For five sessions with my counsellor, we worked through what was going on and why. I had doubled my anti-depressants with little effect. I wanted to double up again, but she said that wasn’t the problem. I was throwing myself at work, trying desperately to bolster the finances enough for the Charity to survive. A strong performance by Evie’s Gift during the 2.6 Challenge in April, and a successful Lottery bid bought us a 6-month breathing space, so I was able to park that for a while. The problem there hasn’t gone away, but I had bought myself some time. Time to focus all of my attention on work. The Rainy Day Trust was a different matter altogether. Bid after bid was turned down, including three to the Lottery. Even businesses that had supported us previously were ignoring pleas for help. Again and again I asked for help and was ignored. I couldn’t figure out why I was pushing so hard to get RDT into safer waters when no-one else seemed to care. I knew that I was putting myself under increasing strain and that I needed some serious time off; many weeks, not just a few days. My blood pressure went nuts, I had trouble sleeping, I had chest pains, headaches, I was angry and frustrated at everyone and everything. I was permanently shattered. I was running out of energy by late morning every day. Motivation was non-existent.

My counsellor explained that I needed to go off sick for a couple of months before something major broke. I knew she was right, yet I found excuse after excuse not to do anything about it; “one last push on trusts and foundations”, “what if I boosted the corporate partnership plan”, I had papers to get ready for committee meetings, there was the Lockdown Street Fayre coming up. They were all just excuses. I knew that she was right, but I couldn’t accept it.

She asked me directly “What will happen at work if you are off sick for a couple of months, will the Charity collapse?”. I hesitated. Not much really, the Board would be forced to find someone to cover and just keep things ticking over as they had done when Evie was ill. She asked if I was frightened of losing my job. I wasn’t. I’m not. If I lose my job, then I’ll deal with it. We attacked the issue from a number of angles, probing, digging, looking for an answer. After a great deal of discussion we worked out why I was still pushing so hard when I knew it was fruitless to do so, and that it was actually doing me harm. Work is the only thing keeping me upright at the moment. It gives me a purpose. It provides routine and structure. Without it I would buckle. Completely. It is the only anchor that I have left, but it is a self-destructive one. The more I hang on to it, the more damage is done. It is a balance of risk. Keep pushing at work to keep me upright, offset by the exhaustion and strain that it is causing, or take a lot of time off sick and lose the only support that I have, and risk a breakdown. How on earth would I get back from there? That’s what frightens me. I don’t know how I would manage to get back on my feet if I fell that far. I’m damned if I do, and damned if I don’t. I was terrified of hitting the bottom of the pit. Then realisation dawned. I was at the bottom of the pit.

Shedding the Wednesday Wisdoms for a while was a way to try and lighten my load. It had started to become an obligation, not an outlet. I felt compelled to get one out every Wednesday even though I had nothing to say, or I was just too tired to think. It just increased the pressure on me. WWs were supposed to be about me using writing as a tool to cope, exploring the pain and if possible, providing some solace to others as a side benefit. It wasn’t doing that any more, it had become work, a chore; another pressure that I didn’t need. I was giving more time and energy to thinking about how it would be perceived by others, than what it meant for me. Each week I would check the analytics to see how many people had read it. I started thinking about subject matter that might draw more readers than what I needed to express. I had allowed the comments of others to define and decide what I wrote. That’s the wrong way around.

What finally gave me the insight that I needed was when Eggshells was reviewed by The Compassionate Friends. It was clear to me that the reviewer didn’t really like it because it was too ‘angry’ and very different from their own experience as a bereaved parent. And that’s fine. We are all entitled to our own views. There were no derogatory comments, but no good ones either; damned with faint praise. But that doesn’t matter, it honestly doesn’t. As I said in the book, I didn’t write it for others to read, I wrote it as an honest, true reflection of how I felt as an outlet for me, a way of releasing the pressure. It was cathartic to unload that much pain in one place and then get it out into the public domain. Only the full end-to-end process of writing, editing and publishing was good enough to gain anything from it. I still don’t really care if other people like it or not, because it did the job it was intended to do. It helped me. The insight then is that I had forgotten the cathartic imperative when I was writing the WWs. I had been distracted by other’s comments on it. I needed to get back to the place where I wrote what helped me, what took the pressure away. I shouldn’t be writing to please others or make it palatable. If others gain from it, then that is a bonus. The tail had been wagging the dog and it had to stop.

So this post is going back in time, back to place when I started writing ‘Eggshells’. Wednesday Wisdom as such is no longer what I need to write to heal. From today going forward it is just plain Eggshells. It is me putting down on paper exactly how I feel, whenever I feel it . It might be on a Wednesday, it might not. It almost certainly won’t be every week. It will look at all sorts of things once again, some good, some not so good. How Covid-19 has impacted on me in a far deeper way than I had expected. How finally, I realised and accepted, that I could no longer cope. I was trying to do too much for the wrong reasons. Life right now is shit. It has never been worse. I can only imagine that the loss of my coping strategies, alongside the additional isolation that Covid-19 has brought, have, in combination, broken the camel’s back. I don’t have a solution, but at least I’ve recognised what’s going on. I am still working stupid hours, but I am slowly figuring out that keeping RDT afloat to the degree that I want simply isn’t possible. I can’t do it alone which is what I have had to do, and I have set the bar too high. I have accepted that if others don’t care enough about RDT to help, then I cannot do it alone. The impact of C19 on the Charity is too big a problem for me to tackle by myself. The wider economy’s problems are beyond my capability to fix.

What follows in my Eggshells posts over the coming weeks will be a reflection of what I really feel once again. They may repeat themes that have been gone over before, but that is because that problem is still an issue for me. If you don’t like them, then I’m sorry, but I am not going to soften them. The honesty is the key to healing. Somehow, I have to shed some of this pain, get it out of me and onto paper again in a way that feels like a release. Things have definitely taken a turn for the worse this summer but hiding what I am going through to make easy reading for everyone else won’t help me deal with it. If I write to make it easier for you to read, then not only am I not being true to myself, but I am also not being true to Evie. To do that would be pretending that her death hasn’t mattered, and that isn’t acceptable. If being honest costs me friends, then that is a price that I am prepared to pay. I’ll no longer post it on the Evie’s Gift or Compassionate Friends FB pages either; it’s either the wrong audience or not appropriate. If you follow a link on the TCF FB page to read the blogs, then you will either need to ‘friend’ me on FB or register to receive notifications from Square.Space when they are released.

I have to recover. I am not going to be a dinner party conversation piece - “do you remember Bryan? Poor bastard lost his daughter, then broke down and took his own life. Pass the salt please, did anyone see the match last night?”.

I’ve said that fixing the economy is beyond me. But more importantly, fixing myself is also beyond my capabilities right now. I don’t know how I’m going to fight my way out of this place of darkness. But I do know that I can’t do it alone. In a ‘first’ for me, I have asked others for help because my brain isn’t working properly any more. I’m going to write and see where that leads me. As in the original ‘Eggshells’, it will be raw, honest and true to my love for Evie. I can’t predict if the optimistic, heart-half-full version of me will ever return. Optimism or pessimism are irrelevant now because:

A heart half full, or a heart half empty is a heart half gone either way.

Just Another Day

Father’s Day is just round the corner. I was asked to write this piece for The Compassionate Friends newsletter, but felt that it could be repeated here for a wider audience. I have adapted it from the original to be more relevant to a ‘muggle’ audience.

“This year Father’s Day is likely to be quite surreal for the entire population. When I started this piece for the TCF in mid-April, we were locked down because of Covid-19 and looking at the calendar, I expected the travel restrictions to still be in force by Father’s Day on 21st June; the ‘bubble’ was a distant dream.  Even if restrictions had been lifted however, it was likely that the loss of life across the country would be so significant that it would dampen down the usual Father’s Day celebrations. 

For me, Father’s Day will pass just like any other day.  We never really marked it before Evie died; a card and that was it.  The kitchen is my territory anyway, so I’ll be cooking dinner as usual.  This year I have decided that no matter what the weather it will be roast beef, Yorshire Pudding and roast potatoes; one of Evie’s favourites, along with a staggeringly good bottle of wine. I’m not actually sure that Patsy knows where the kitchen is.  Sunday will be my third Father’s Day without Evie, and just like the previous two, I expect to feel utterly rubbish once again, a heightened feeling of loss on a day when I should be with her.  I’ve said in previous writings that I don’t feel like a father any more, just a bloke.  So, Father’s Day is a real contradiction, full of complex emotions.

I have sat and thought on many occasions how other bereaved fathers with surviving children may feel.  They must be truly conflicted.  I can’t offer advice or comment simply because it feels a world away from my own experience.

Father’s Day brings the feelings of loss into sharp focus for a bereaved father but in reality, it is little different from any other day of the year. The commercial aspects of the day shine a spotlight on it and serve only to ram the point home.  Evie’s gone, never to return. How do we survive it? Part of me wants to recognize that I am still a father, but another part just wants to push through and get the day over with. If I could go to sleep today and wake up on Monday that would suit me fine.

I do believe that whether we like it or not, the vast majority of people focus on the emotional impact of a child’s death on the mother because for generations that has been what we did. Men’s mental health has always taken a back seat.  Call it what you like, stoicism, stiff upper lip or just a societal expectation.  I also believe though that as fathers we are also guilty of perpetuating that view. Take a look at the TCF Facebook pages and compare the number of men and women on there.  Look at the paucity of posts from fathers compared to mothers. Why is that? Even the Bereaved Father’s page is ‘quiet’.  I’m not saying that it is right or wrong, just illuminating it – saying what most blokes are probably thinking but haven’t said out loud.  I think what that does is mask what fathers are really thinking and feeling, so we have no idea of the true position. Are we uncomfortable being open and honest? Do we see it as a sign of weakness? I don’t, but I imagine many do.

On an average day I will be wearing full body armour, keeping me safe from the outside world. It comes off for very few people because there is only a small handful of people that I can be open with, the rest will buckle under the pain that flows when I talk freely. Father’s Day will be no different, with the exception that I’ll keep out of everyone’s way.  I’m going to hide.

Thankfully, when I wrote this in mid-April, few children had died from covid-19 and now in mid-June that is still the case. That means that the number of new parents joining our exclusive club is not growing rapidly.  But thousands of families up and down the country are reflecting on the loss of a brother, husband or father and grandfather.  Father’s Day for many will be a different beast.  For us bereaved fathers, or at least for me, it is just another day to get through without breaking.  I’m not fighting for change, or trying to raise awareness of a father’s view. I don’t want to change the world. But I do want people to stop and think.  When you sit down to give your cards and gifts, spare a thought for the thousands of families across the country for whom Father’s Day will not be a celebration, but a feeling of loss.

If I can find an open church on Father’s Day, I will go along and light a candle for Evie.  I’ll go and visit her grave. Talk to her for a bit then go home for a G&T. And I’ll raise a toast to all bereaved fathers. “

Making the Right Mistakes

It there such a thing as a ‘right mistake’? Since Evie died, I have made a bucket-load of mistakes. At home, at work, anywhere and everywhere. I have found that the trick isn’t the mistake itself, it’s how you deal with the outcome or impact that matters. When your life unravels following the death of your child, it’s so hard just to get the simple stuff right let alone a complex decision.

Mistakes mean that we learn; hopefully. Mistakes mean that we add to our knowledge base and when other things go wrong in the future, we are better placed to sort them out because we have experienced it all before. When Evie died I had never experienced anything like it before. Now though, I have made so many mistakes that I feel much better prepared to confront anything else that crops up.

The right mistake though. What’s that about? From my perspective, it’s a mistake that does no long term harm, to anyone or anything. One that, largely, you can chuckle over a few years down the line. One where no-one else gets hurt. Before Evie died I was striving to get everything right first time. Anything else was failure. Not surprisingly, I set the bar too high a lot of the time. Now though, making a mistake is just an opportunity to learn. That sounds a bit like some poncy team-building bullshit doesn’t it? But I also believe that the depth of pain that we feel after our child dies means that we need to make easy mistakes and then fix them. That way we can build our self-confidence back up slowly. We can re-build our internal resilience after it was wiped out.

In some ways, it’s almost like being a child again. Evie’s death destroyed great swathes of me, my self-confidence, my ‘backbone’. By making mistakes, figuring out what I had done wrong, and then sorting it out, I was learning what my new environment was all about, where the boundaries are and what my new limitations are. Not much different from being a baby or young child. The main thing though is that you mustn’t let getting something wrong bother you.

Grieving for a child is so different from anything else in this world that we can only learn about it by getting things wrong. If we toddle along happily, then I think we have missed the point, or are burying our heads so deep in the sand that we aren’t going to cope. Some day, some time, the grief will catch you, and when that day comes, it is going to bury you.

So I’m quite happy to make mistakes. That way I can learn, without hurting anyone, take it on the chin and keep going.

A Letter to Me

There’s a country song called ‘Letter to Me’ by Brad Paisley and listening to it while driving home last week, it got me thinking about what I would say to the me, sat at home, broken, on 12th January 2018, the day after Evie died. What advice would I give, looking back at the last 2 and a bit years? There wouldn’t be any revelations, no silver bullet and certainly no cure. But what pitfalls would I warn about? What would I say?

Dear Me,

With the fabulous benefit of 20/20 hindsight, can I help you avoid some of the excruciating pain that you know is coming? Can I protect you from the hurt of others, from the bewilderment, the exhaustion, the utter confusion? Can I save you from yourself sometimes? As much as I might like to, I can’t because even if I manage to head off some of the pain, it will only be replaced by something else. But what I can do is try to convince you now that you are truly not alone, that every step of the way, someone will be there when you need them. I can also tell you categorically that you are going to make mistakes, lots of them, and that’s okay, just learn from them. But most of all, I need you to understand that your love for Evie will carry you through everything. It will give you the strength when the darkness is overwhelming, when there seems to be no point carrying on, when the black dog sits with you, begging you to follow him. No father has loved a daughter more and that love will stay as strong forever.

You will undoubtedly throw yourself at work, trying to convince yourself that you can still succeed at something, anything, trying desperately to compensate for the fact that, in your mind at least, you failed to keep Evie alive. That you failed as a father. You won’t believe me now that there was nothing that you could have done to change the end result, but that’s a lesson that you are going to have to learn for yourself. You’ll get things into perspective after a while, be calmer, and then you’ll forget and slip back into the abyss again. That’s just the way it goes. Don’t set the bar too high.

You are going to find out very rapidly that you’ve caught some horrendous disease and that it is ‘contagious’. A lot of people that you currently consider to be friends are really no more than just acquaintances, that much is true. They are going to abandon you. You know what though, you don’t need them. They are that piece of chewing gum stuck on your shoe, and now you can scrape them off. But to compensate, there will be other friends that you are going to lean on and they will stand with you, shoulder to shoulder. You will see that some of them are amazing people that genuinely care for you. They are going to show you that they care deeply about you, and when the darkest times come, they can be called upon. They can’t take the pain away, but they will listen to you when you need to talk, and will tell you the truth when you need to hear it, no matter if you want to or not. Listen to them.

At some point quite soon, guilt is going to slam into you, making you feel like you don’t deserve to be alive when Evie is dead. But you will figure out that you need medical help and that will give you the capacity to focus again. Don’t be afraid of asking for professional help, both medical and for counselling. It isn’t an admission of failure, it’s reality. If your body is ill, you go to the doctor, so why is it any different if your mind is ill? The trauma of Evie’s death is going to affect you in ways that you can’t yet imagine, but at each step you will find a way through. I won’t lie, at times it will be tough going, but with the help of friends, you will find a way. A way that you have to find for yourself, because this journey is one that you are going to have to travel alone. Patsy can’t help you because she is just as lost as you are and is travelling on her own journey. I would counsel now that you don’t try to ‘make her better’, because that is impossible. It doesn’t matter how much you want to help. I know that you would give anything to take on her burden, but you can’t. There is no cure for this level of grief, no vaccine, no book to read with all the answers. Your usual behaviour of pushing hard to help her will have exactly the opposite effect and you will be wasting your time. Just be there for her. Listen, listen again, and listen some more. What works for you will not work for her.

Time will not heal you. Time will remind you that there is a gaping hole in your life. The person that made you whole has gone. Time is cruel. But time will show you that, if you write down how you feel, that as each month passes things do change. They evolve. They aren’t ‘better’ but they are different. They can become more manageable. You can look back at what you wrote and see how things have changed. The best that you can hope for is that after enough time has passed, you will be at peace with Evie’s death. You won’t ‘accept’ it. You’ll never ‘accept it. ‘At peace’ is as good as it gets. Whoever wrote about the stages of grief and put acceptance as the last stage, clearly didn’t have the faintest idea of reality. But you’ll live with it.

The path to that place is long, and I can’t tell you how long it will take because so many things change, and just when you think you’ve reached it, something will kick you in the face and send you back into oblivion. But you’ll come out the other side, wiser and a little stronger each time. Those significant days of her birthday, Christmas Day and the anniversary of her death will be bad. But nowhere near as bad as the days leading up to them. Don’t fight it. You need to experience it, so that you are ready for the next one. Contrary to what you might expect, they won’t get easier, but you will know that you’ve got through it in the past, so you can get through it again.

You will have to find a number of ways of coping because some won’t work when you expect them to. There will be days when you need a large drink and that’s okay. There will be days when you just want to sleep and that’s okay. There will be days when you rage at the world, and at God, and at anyone that happens to be in range. And that’s okay too. There are no right and wrong answers, just what is.

But the biggest warning I can give you is that this journey, this pain, is yours and yours alone. Only you can work through it, but the love of a wonderful wife and your friends will help you. You are going to have to be resilient, to accept that some days you will just wish it was all over, and others when you are almost normal. The things that you had accepted as ‘right’ or ‘normal’ have changed for you now. Your boundaries and values will change, your attitude to life and others will change beyond belief. You will lose the colour in your life; everything will become black and white.

In the coming dark weeks and months you are going to feel utterly lost. You aren’t going to fell numb, just becalmed. You are going to have to create a direction for yourself, to force yourself to have a goal, something artificial. But you know that because it’s your default position, but what you don’t yet realise is that those goals need work, and will need to be refreshed every now and then. You don’t solve these problems, you just make them quieter for a while.

Like I said right at the start, there’s no cure, so don’t waste your energy looking for one. Get used to uncertainty, indecision, and a lack of motivation that will scare you. But know now that each time when you slide downwards, it will eventually stop, and you will crawl back up again. I can tell you that you have the toughest finger nails in the business. You are going to have to ride it out each time, don’t try and fight it. When a wave of sadness comes, let it break over you and it will pass. Sadly there will be people that try and take advantage when you are at your lowest. Again though, you’ll figure it out and rid yourself of them.

Finally, the feeling that you have had about your marriage will be proved right. I say ‘feeling’ because you’ve never worked together, so you’ve never seen it in action. Together, you are greater than the sum of your parts. 1 + 1 = 5. Together you will overcome a staggering amount of pain. Learn very early on that because you were so different before Evie fell ill, it shouldn’t be a surprise that you are different after she died. But that means you have different strengths, different skills and together, you can deal with anything.

So I guess what I am trying to tell you is that I can’t help you to avoid the bear traps, those painful times, because they will define how your grief changes. You are going to have to go through it regardless. Just don’t try to go through it alone. You don’t need to. Ask for help, because it will be there when you need it.

Me x

For Better or For Worse

Marriage vows. How many people have trotted out the words in front of family and friends and never expected that the ‘worse’ bit would become the dominant part of their married lives? We certainly did. Every marriage or partnership has its stresses and strains. Money worries, extended families, job hassles, health problems, kids. They all add up to a mix of problems that apply tension over time. It’s normal and all things being equal, we breeze through it. Sadly, some marriages don’t survive these tensions. Some go on for ever.

On 11 January 2018, Pats and I were with Evie at the moment of her death. In that moment we became a couple again, not a family, and our grieving began. Over the next two years, 4 months and 9 days, what became massively apparent was that we have grieved in completely different ways. We each built walls to protect ourselves from further pain. We each faced the trauma alone for a long time, unable to help the other. We would each have given the earth to help the other, but simply didn’t know how. Moreover, we probably didn’t have the energy or mental capacity to help either. The stress has been incredible. Evie’s death did incomprehensible damage to both of our mental states. The strain that it brought was something that we were both unprepared for. We have known each other since we were 12 years old, we got engaged when we were 18. But I have seen parts of Patsy’s character that I have never seen before, both good and not so good. The pain in the house was enormous. But …….

Evie’s death tested us and our relationship to its core. There is nothing else in this world that could place more strain on it. We’re still here. Together. It has brought everything else into stark relief. Everything else, and I mean everything else, is trivia. Looking around us at what is happening, it would be easy to be swept up in it all. But you know what? It simply isn’t important. Like everyone else, we worry that our jobs might not be secure. We worry that one or both of us could catch Covid-19 and be hospitalised. We can’t go on holiday. We can’t be with friends and family. Life’s normal stresses and strains continue. So what? The tension of all of these things is fleeting; it will pass. Evie’s death won’t pass. It will never leave us. The pain will never subside. I can see Evie’s last breath as clearly today as I did then.

We have survived watching our wonderful, beautiful girl’s death. We have survived because although we cannot help each other, we understand each other. And all the other crap is just that - crap. It doesn’t matter, so there is no point getting worked up about it. In the 26 and a bit months since Evie died we have learned one thing - perspective. There’s no point wasting energy on things that you can’t influence. Why get upset about something that will be forgotten in a few days? As one of our previous employers learned (expensively), watching your child die is the very worst thing that can happen to you, and there is NOTHING that you can do to us that we can’t ride out together. Nothing compares to seeing your child die. Live through that and you can live through everything else. Our little family was a perfect three-legged stool. One of the legs has gone, but somehow, the stool is still upright - balancing. For better or for worse. We are a family.

Learning from Lockdown

Life in lockdown continues into week 9. Even with the recent easing of some travel restrictions, the basic premise remains the same - life is still far from normal. It still has its enormous frustrations, but also brings opportunities to learn. Without Evie here we aren’t faced with the rigours of home-schooling, or the worry of whether or not we would be sending her back to school on 1st June. Looking at some of the comments on social media about parents grumbling about having their children at home all the time makes me bristle as I would give anything to have her here. I watch with incredulity at other parents who play Russian Roulette with their children’s lives, merrily mixing with non-family members. Either they don’t care enough or don’t understand enough. Children may be less susceptible to the virus, but to my mind, it is still an unacceptable risk. But hey, if that’s what they want to do, then it is their risk to take. I have learned from the pain of losing a child, so have the benefit of a weird kind of hindsight. Others don’t seem able to learn from another’s experience.

Being a bereaved parent, I have a very different outlook on the impact of the virus compared to the muggles out there. The social isolation that it has brought to the country is no stranger to me. That’s my world. We’ve spent two and a bit years living in what feels like a leper colony. Following last week’s WW, another bereaved parent commented that what she experienced was ‘compassion fatigue’; people just ran out of energy on how to deal with her and drifted away getting on with their lives. The isolation is a known problem for us, so we were probably better placed to deal with lockdown than many others. But it has certainly compounded the problems and pushed us that little bit further down the path of depression. Last week I doubled my dose of anti-depressants to try and take the edge off. The lack of choice is what does the damage. But at least I was able to recognise what was happening and do something about it. The anxiety that is now hitting the wider community is completely unknown to them and has come as a surprise. Have they learned to ask for help? I fear not.

With the wider economy in turmoil, we have all had to do things slightly differently. We shop local now, we take more exercise and we help others. Each day around 4pm a couple of volunteers from Melksham’s Community Volunteer Hub arrive here and drop off 20-30 prescriptions collected from the half dozen pharmacies in town. I sort them out into their delivery routes and at 6pm another batch of volunteers turn up to collect them and deliver to the vulnerable people that can’t collect them for themselves. The system has been honed over the last couple of months and runs smoothly. But beyond the practicalities, I think we have learned to think about others again. Our group of 6 houses routinely pings a Whatsapp message out when one of us is out shopping to see if anyone needs anything. Being able to do something to help someone else is important for our mental well-being, it gives us a sense of worth. That is something that we lost when Evie died. It also costs us nothing. We are learning to look outside our little bubble for a while.

What the long-term impact of the virus will be is anyone’s guess. But maybe, just maybe, we can learn to think of others for a change, to help those that need it and to talk openly about how things are affecting us. Every day I wonder what Evie would be doing to help. I know for sure that she would be in touch with her friends, talking to them, encouraging them. Looking out for them. She wouldn’t allow them to become isolated and lonely. Sometimes we need to learn that it takes effort to think of someone else and keep doing it. Showing you care isn’t a box you tick once when you’ve sent a text asking how people are doing. It’s about following it up and then to do it again and again.

The virus might just teach us to regain our humanity.

Writer's Block or a Public Health Warning?

For the last few weeks, I have been writing these WWs on the day as I have had difficulty coming up with a new theme in advance. Today is no different. Finding a topic to work through, that hasn’t been done before, or isn’t unpalatable is becoming increasingly difficult. Patsy asked me last night if I have ‘writer’s block’. My reply was that there are plenty of things that I ‘need’ to write about to unload, and think about how I feel. But I can’t. For many of them, I have covered them before, and although things have moved on, they haven’t moved on far enough for me to make it interesting or relevant for everyone else. It doesn’t matter that I still need to unload around these subjects. What I don’t want though, is readers sitting there thinking “There he goes, banging on about loneliness and isolation again”, and then the reach of the posts starts to dwindle. From my perspective, seeing the number of visits to this site has a positive impact on me. It proves that I have worth. At the end of the day, the posts don’t just serve to give me the opportunity to unload, and explore what’s happening inside my head, but they are also there to give other bereaved parents the chance to understand that they aren’t alone and others feel the same way that they do.

In terms of what is palatable to a wider, non-bereaved audience, I am butting up against the hard core of topics that would have a place in a book, but I’m not sure about writing them down here. Ironically, these are the topics that I need to explore the most. The ones that deal with the darkest depths of the pain. There are various reasons for not covering them here; the audience is wider than just the bereaved parent community, the impact they will have on those that I love, and the subject matter itself that scares the sh*t out of me. The internal conflict is huge. For some of the subjects, I need to explore them but am terrified of what I will find if I do. Is ignorance bliss? I can work through the logic of it all, but emotions aren’t logical. And there’s a strange attraction to those dark places, one that is hard to ignore. There’s another problem too. It would open up the darkest places of my soul to public view, and that world is so alien to most that it will serve to push the few friends that I have left away. It will scare them as much as it scares me.

In time, I may come up with a solution to this dilemma and either make the decision to park it forever, or just crack on and deal with it. Last autumn, I started a second book, aimed at being a self-help guide for the newly bereaved, combining the thoughts of two dozen other bereaved parents. It was supposed to offer insights into this world of ours that weren’t just mine. But I’ve shelved it because it wasn’t giving me what I needed; the forum of honesty. I ran the risk of pouring my own feelings into it at the expense of everyone else. I had thought about writing the second book to reflect how I am feeling now, but it is probably going to end up being ‘more of the same’, and few would want to buy it and read it. One of the biggest benefits of the first book was that my feelings were out there for all to see and read. It was incredibly cathartic. It was also a prayer, one that asked for others to understand what my new world feels like, and get a glimpse into the rage that I live with every day. I could write a second book, but not publish it, but then the true benefit to me would be lost.

I know that I’m not ignoring those darker topics because I’m thinking about them all the time. I’m frightened of the response I’ll get if I put them out there. I’m also not entirely certain that this blog is the right place to explore them. Counselling is incredibly helpful, but writing here gives me a very different resolution to those troubling issues. Finally, whatever I write, won’t just impact on me, but on my family too. The TCF community will understand what I am writing and why, but the muggles almost certainly won’t. Maybe I should write them with a public health warning?

Are we Going Backwards?

The body armour is on again. At the moment, life is in a seriously weird place. The additional isolation brought about by coronavirus is impacting a lot of different areas. After Evie died, we developed a series of coping strategies, honed over time, to help us deal with the emptiness that each day brought. In some ways they were just a distraction, but in others, an important way to give our brains a rest from the pain. Most of those strategies have now gone because in the main they involved contact with other people in some form.

Throwing myself into work, both for the Rainy Day Trust and for Evie’s Gift is all well and good, but even that has now lost its efficacy. It has become routine, and because my attention is focused almost wholly on fundraising, I’m not getting the variety of input to keep it interesting. The lack of contact with others and the overall isolation are reminiscent of the time a few months after Evie died, where people just drifted away. It feels like someone has hit a “Reset” button. The difference this time is that I know what works and what doesn’t. The problem is that I can’t enact the stuff that does work, so that is almost worse.

Have we gone backwards? It absolutely feels like it. Back to the spring and summer of 2018. That’s probably not the best analogy though. But it certainly does feel as if we have jumped back in time, and that all the work to learn how to cope has been wasted. How we overcome that change, I’m not really sure. Being patient and just waiting for it to blow through isn’t an option. The mental toll is mounting. Frustration is rising at minor things once again. The metaphorical fuse has most definitely shortened again too.

Losing your child makes you feel as if you are stuck in a time warp anyway, so what is happening now serves only to heighten the awareness of that problem. I’m back to feeling lost again, unable to find a solution as I was when I was desperately trying to solve the puzzle that was Evie’s death. A whirl of brain activity going nowhere, achieving nothing. I seem unable to detach my brain from the problem, to allow it to just ‘be’. I know that given time, we will come through the crisis and that things will get back to normal. The trouble is that for us bereaved parents, ‘normal’ is pretty sh*t anyway, so it isn’t much of an improvement.

I don’t have any answers or solutions to this one. The ‘reset’ button has been pressed and somehow, I have to figure out a way to work with that. For the moment though, I am back in the dark room without a map.

Technology to the Rescue?

The isolated world that we as bereaved parents know so well, is now familiar to the vast majority of the nation. I say vast majority because a small minority still seem to be oblivious to the dangers of Covid-19 and insist on having house parties or going out in groups even now. Before the virus took hold, as a group we were not quite ‘unique’ in that we felt alone in the world, but it did seem that way.

Now; however, a new word has entered our collective vocabulary - Zoom - but not in the sense of a rocket flashing passed us, but a virtual meeting where we can see the faces of those we want to talk to. It was always there of course, as was Face Time, Whatsapp and other electronic video conferencing technologies. We can now do our counselling sessions by Zoom, talk to friends and family, have pub quizzes and a multitude of other things too. Technology has presented a solution to isolation, but it does, of course rely on you having the technological capability to take advantage of it. Not everyone has a computer or tablet.

For me, working from home was always part of my normal routine, so now it just happens a bit more frequently, but there were still meetings and days in the office. So in some ways, Covid-19 hasn’t brought a wholesale change to my way of life. It has deepened the feeling of isolation though. I use Zoom for work meetings, and Whatsapp for family interactions, and it is great to be able to chat to family members who are many miles away.

But there’s something that is sat behind the technology itself, and that is the desire and ability to use it to its best advantage. Without doubt, chatting electronically is not something that I am particularly comfortable with. Am I the only one who finds myself shouting all the time? I also get distracted very easily. I somehow feel disconnected (ironic really) from the person or people at the other end. I’m certainly not a technophobe though. More importantly, it is all too easy to not bother answering a call when you are feeling low. When a friend knocks on the door to take you out for a coffee, it is much harder to turn them away. A red and green button on a phone or iPad showing an incoming call is all too easy to ignore.

We have to make extra effort in these strange times to stay in touch with friends and family. We, as bereaved parents need to break through the loneliness ourselves to make the call in the first place and give Zoom a go. Personally, I prefer to do my counselling over the phone rather than by Zoom or Whatsapp, but chatting to our TCF Support Group by Zoom last week wasn’t too bad. We all managed to talk over each other, but it was still lovely to be able to take openly and freely about how we felt to like-minded people. Maintaining that contact with others in the same boat is crucial in my view. We have to offload sometimes in a safe environment, an environment that just doesn’t exist with everyday life.

Has technology come to the rescue? I don’t think so, but I do think that it is there for us to take advantage of. It is not a solution, but it is something that can help reduce the feelings of isolation and loneliness that dog us throughout our new lives. And staying in touch with other bereaved parents is top of the pile for me, because we can’t be fully truthful anywhere else.

Listen to Your Body

The last week has been weird, I’ve been incredibly tired amongst other things, fighting to think and work productively. But for once, I know exactly why.

On Wednesday last week we went to the funeral of a dear friend who had died far too young. For both Pats and I, it was the first time that we had been back to the crematorium since Evie’s own funeral and we reacted in completely different ways. Patsy got through it without any impact at all. She realised afterwards that during Evie’s funeral, she had been in shock, unaware of her surroundings and she didn’t even recognise the interior of the building. For me though, the effect was very different.

Almost immediately I felt uneasy being there. When the service began I locked down completely; I could feel a physical wall building around me, blocking everything out. All I could see was Patsy stood at the front, as she had at the end of our service, her hand on Evie’s pink and purple, butterfly-covered coffin. Nothing else broke through. I stood when others stood, I sat when others sat. For a while at some point during the pastor’s sermon I cam back long enough to say ‘goodbye’ to a wonderful man, but soon the wall was back and I closed down again.

Even when we were outside, I couldn’t break out of it. I felt confusion, isolation and something that I can only describe as being ‘lost’. We went home and I slowly got back to normal, or at least my new normal. Ever since though, I haven’t been able to focus properly, and have been so tired. Yesterday, I finally gave in to it and took a day’s leave to putter around the garden, walk and chill out. I needed that space after a gruelling few weeks with manic workloads due to the virus and its impact on the 2 charities that I’m running.

There’s a moral to this story. When your body tells you that something isn’t right, listen and do something about it straight away rather than try to plough on.

Living Two Lives

A few days ago, I was asked by The Compassionate Friends if I had a piece of writing for their next newsletter, something that dealt with Father’s Day and how fathers coped. I had a look back through the blogs, and also at all the other previous Wednesday Wisdoms and, then went to the relevant sections of the book. There wasn’t anything specific that worked so I wrote the piece from scratch. I wrote an honest perspective of what Father’s Day feels like for me, and has done since Evie died. After I had sent it, my initial reaction was that I had a ready-written piece for the blog in mid-June. Then I read it again and changed my mind.

The life that I now live is a world beyond what I knew before and even though the piece isn’t particularly raw or angry, I realised that the muggles out there wouldn’t see it for what it was. It was at that point that it dawned on me that I still censor what I do and say for the benefit of others. It used to be that I did this to shield them from the pain. To protect them from a world so alien that they couldn’t possibly understand it. Now though, my reasoning is very different. Evie died 2 years, 3 months and 4 days ago. To me it could have been this morning. The image of her in bed is as strong today as it has ever been. But for the rest of the world, life has moved on. We’re ‘old news’. Yes there’s sympathy, understanding and even empathy, but that’s where it ends. So when I write a piece for this blog, or anywhere else that is for wider consumption, I am censoring what I feel to make it palatable for the majority. It isn’t about me being angry or ranting, it is about the fact that unless you have lost a child, the subject itself simply isn’t digestible. Like the Doctor Who episodes when you were a kid that made you hide behind the sofa, the facts of a child’s death make you squeamish.

What that means for me in real terms is that the audience that I can be open with is quite small. The bereaved parent community ‘gets it’ but needs a break from their own pain. Listening to someone else carries its own pain for them. Time is my worst enemy because I am stuck on 11 Jan 18, unable to move with time as everyone else does. While my ability to carry the pain has changed, that doesn’t mean that it has lessened in any way. But the way that I communicate what this world of mine feels like has changed too. Censorship is all too alive.

Is there an answer? I doubt it, I have to accept that I now live two lives; a real life at home and with my new friends within the Compassionate Friends, and a public life that is a filtered me, a me that others can now live alongside - all socially distanced of course.