To Tree or not To Tree? That is the Question.

Evie absolutely loved Christmas. She loved everything about it, not just receiving presents. To her, choosing and giving presents was just as important, and she was thrilled when she got it right. She loved the time off, the celebratory atmosphere and the overall fun that it involves.

Without her here, Christmas seems pointless. Pats and I will buy each other small presents, and as I’ve already mentioned we will be having a chilli for dinner when we get back from Bath Open Church’s volunteering on Christmas Day itself. Evie always put our tree up and decorated it. When she was ill, she sat in her wheelchair and told me where to put all of the baubles. Last year, one of Evie’s friends decorated the tree instead. This year though we’ve decided not to put a tree up. It isn’t some bah humbug thing, and we aren’t trying to make a point. It just feels wrong to put one up. We’ve put a pink wreath on the front door and that will be the extent of our decorations.

But because Evie loved it all so much, I felt that I needed to do something, but what? So we’ve bought some small decorations for her grave, and have decided to put up a pink Christmas tree in her bedroom. We won’t go overboard as we used to do, but at least it is something. We’re now just crossing our fingers that the ones on her grave survive the weather. It all seemed the right thing to do as she loved it all so much.

So we’ve decide to tree - a bit.

Blue, Red, Orange, Green or Yellow. Who Cares?

Now that all the shouting over the election is over, I can honestly say that the whole shebang has been of no interest whatsoever. Looking at social media over the last couple of days, an awful lot of people are getting very worked up - either angry at the result or exuberant. But you know what, I don’t actually care. Evie is dead and won’t be living in this new world of ours. Whether Mr J keeps his promises and commitments just doesn’t appear on my horizon. Evie was my horizon. Evie was my future.

But before anyone gets all indignant and erupts into another politically-based diatribe let me explain something. Evie was a 13 year old young woman, and right from her Reception year when she won the ‘Kindness Cup’, she helped people. She did it in that quiet way that made a difference but didn’t attract a fanfare. It didn’t matter to Evie if the person she helped was a boy or a girl, had wealthy parents or not, was older or younger than her. She just saw a need and got on with it.

So whether or not Mr J and his merry band actually deliver on their promises, or if the Labour Party take a long hard look at themselves to understand why it went so badly wrong, there are still loads of people out there that need help. Evie’s Gift was set up after Evie died to look after parents in those critical first few days when their children are admitted to hospital far from home. We will continue to help those parents no matter how things turn out. We would still have been helping people if there had been a Labour government or a hung parliament. What is important is that Evie’s Gift and the thousands of other charities out there will continue to work no matter what colour the government is - blue, red, orange, green and so on. So you see, I really am not fussed about who won, who lost, by how many votes or reading the rants on FB about how fabulous or unjust it is. What is important to me is that Evie’s legacy of helping people lives on.

My challenge to the 650 newly elected MPs is a simple one. How about you now focus on what you were elected, and are paid, to do? Look after the interests and needs of your constituents? Help them. Help those in need. Help those less fortunate than you. No matter who you are, there is always someone else out there who has it worse than you. We have gone through the single most devastating event of our lives, yet I know of families in a worse place than us.

For those of you who have felt the need to vent your anger at the system over the result, or those that are jubilant at it, here is a challenge for you too. Channel that anger or joy into helping someone else. Do something, without being asked, to help someone else. Collect their wheelie bin, do some shopping for an elderly neighbour, or drop in on someone unannounced for a cuppa to break the cycle of isolation. The British population is about to stuff itself silly in a couple of weeks, while some won’t be able to afford much at all. So as my old dad used to say “Put your money where your mouth is”, instead of taking to social media, do something. Prove to the world, and to Evie, that you are prepared to help someone else. Because without actions to demonstrate your true worth, your words are no better than those of the politicians you are belittling; just hot air.

Evie’s Challenge to everyone who reads this is simple - do something over Christmas to help someone else. Put aside your Red, Blue, Orange, Green, Yellow or multi-coloured political rhetoric for a while because quite simply, it doesn’t matter. Christmas for us has lost the magic without Evie, so we will be in Bath all day, helping to deliver Bath Open Christmas to those who are ill, elderly, isolated or homeless. What will you be doing? Go on, take just a few minutes of your time and do something to help someone else - I dare you!

Isn't the Second Year Easier?

Evie died on 11 Jan 18 and we are now nearing the end of the second year without her. A year ago, I sat back and thought “well we’ve come through the first year, and experienced all of those ‘firsts’ so we know what is coming next year and can be ready for it, so it should be easier to get through”. I was very very wrong. Last week I met the most wonderful lady for a coffee who cared about Evie as much as any non-family member could. She had become so proud of Evie’s achievements and the kind person that she had grown into. We talked about loss, and how the second year without her had gone. It is quite different from the first year, and contradicted a lot of the perceived wisdom.

Most folks kind of assume that having gone through it all, the second year will be easier to carry. It hasn’t turned out that way at all for a number of reasons and in fact has been harder. The biggest reason is that it is just plain different. The ‘firsts’ keep coming from places that you don’t expect, and the ‘shock and awe’ of year one is replaced by realisation and affirmation that it isn’t a dream and you won’t wake up any time soon. In the first year, those significant dates came suddenly, hurt deeply, and then subsided again. This year, there has been a kind of ‘build-up’ to each in the 2 or 3 weeks beforehand. For me that has felt like a steady decline into depression, interspersed with a black sadness. Each time, I have come out the other side and headed back towards the new normal. In a way, having survived each one I know that I can survive the next and that does at least put a time limit on it.

The hardest part to deal with with is the realisation. The acknowledgement that it isn’t a dream after all and that it won’t change. Like many bereaved parents I spent a lot of time in that first year offering God my own soul in place of hers; a straight trade. That doesn’t happen so much now, but I would still gladly trade places with her. Firstly because she had a life to live, to contribute to society and would have been a fabulous person. But secondly, and selfishly, I just want the pain to end. There’s only so much you can absorb.

As we come towards the end of our second year without Evie, looking ahead to the third year, I don’t know what to expect. Will it be a repetition of the second or something else altogether? Will it be the beginning of a transition towards being at peace? I hope so. But I do know that it won’t be easy. The biggest question still remains unanswered. Why?

So I suppose looking into 2020, I can safely expect the unexpected, carry on looking for answers that don’t exist and pour my love into that little girl as I have always done.

Your Child Doesn't Matter to Me

‘Your Child Doesn’t Matter to Me’. That’s the message that we got with this morning’s post. A Christmas card with ‘To Bryan and Patsy, hope you have a wonderful Christmas, love from X, Y and Z’. To paraphrase an old saying “Blog in haste, repent at leisure”, but for crying out loud, how hard can it be? How many times have I posted here and on FB that Evie’s memory is the most important thing to us? How many times do I have to write about remembering Evie in Christmas Cards?

My first reaction on opening the card was one of pure rage, now it is just deep sadness. Someone that we have known for decades, that Patsy saw not long ago, has just churned out a card along with hundreds of others without a thought to the real message that it sends. The perception from the recipient, a parent whose world has ended, is that you have forgotten their child or that they don’t matter. It doesn’t matter to a bereaved parent that it wasn’t intentional. It doesn’t matter to a broken heart that they may not be very active on FB or Twitter. It doesn’t matter to a soul rent in half that others remember. Evie is dead. Each card that doesn’t mention her name cuts that bit deeper at a time of year when the pain builds to a crescendo on Christmas Day and is followed shortly afterwards by the anniversary of Evie’s death on 11th January. The coming weeks are going to be hard enough without this to add to it.

So …… one last time …… in your Christmas Cards PLEASE PLEASE write ‘Remembering Evie’ or “To Bryan, Patsy and EvieAngel”. Take 5 seconds out of your life to stop and think. I feel another book coming on, devoted purely to rage!!

Rant over, where’s the gin?

What About Christmas?

Christmas is a time for families. When it is just you and your partner, with no children charging about the place, Christmas takes on a new meaning; emptiness. That emptiness is made worse by the fact that the rest of the world is steadily going crazy and you can’t join in. I’m writing about it now because I won’t be able to manage it in 3 weeks’ time.

This year, as last, we will be volunteering all of Christmas Day at Bath Open Christmas, serving lunch to the old, vulnerable and homeless. If last year is anything to go by, the morning will be vaguely manageable, a visit to Evie, lay some flowers on her grave, then to Bath to start the day’s work. The hard part comes when we get home to an empty house. I’m thinking about a chilli this year rather than turkey. And a decent bottle or wine or three. For those bereaved parents with surviving children, I can’t begin to imagine the conflict that must be going on in their minds. Coping with the hole in their lives left by their dead child, yet trying to remain upbeat for surviving children. For those of us who are now childless, then we will almost certainly want the day to be over as fast as possible. It has become a day to survive rather than to enjoy.

The other day I put a post on FB asking people to remember Evie if they send us a Christmas Card. Last year over half didn’t and that cut very deep. It sent us the message that she had already been forgotten, exactly the opposite of what we want. It’s all part and parcel of the whole deal whereby the vast majority of the world doesn’t get that we won’t ever move on. Someone asked me the other day why I keep repeating that message. Why? Because no matter how many times I say it, people still don’t take it on board. I would dearly love to free my mind of the urge to remind people that she was the very centre of my universe because they remember. I’m even starting to sound like a broken record to myself.

We’ll buy Evie a present this year and decorate her grave for Christmas. I’ve painted a stone for her asking Santa to stop there. Evie made Christmas special for us. The excitement, the fun and the fact that she could out-eat both of us from a very young age.

So - be prepared for an image of Evie on FB on Christmas Day. As for us, it’ll be body armour on, mask up and on with the day in Bath.

Double-edged Swords

This morning at dark o’clock I did an interview with BBC Radio Bristol about EvieOwl being unveiled at the Royal United Hospital in Bath. It then went on to talk about Evie’s Gift and the work that we do. Ali, the presenter asked me what it felt like helping people in Evie’s name. At the unveiling in Bath yesterday, Ben Prater, BBC Radio Wiltshire’s breakfast time presenter, asked me something similar. Helping people and doing good is a well researched and well known way to heal.

When Ali asked me the question this morning, I wasn’t quite expecting it, but I gave her the same answer that I have always given. It hurts. The Charity wouldn’t exist if Evie was still alive. But providing a little comfort to other parents when they are going through the same pain that we experienced makes a difference. Being able to sleep and eat properly for a few days while being bombarded with highly technical medical information is important; your child’s life and their treatment rest on your ability to think straight.

Every case that we assess and every family that we help is a good thing, but it is also a sharp stab that Evie is dead. The toughest ones are the other brain tumours.

The same theory applies to EvieOwl. She is now in her new home in Bath and hundreds, if not thousands, of people will see her, and in time once some table and chairs are in place, they can get up close and read the plaque that is dedicated to Evie. Laura Fearn did a beautiful job painting the owl. The paintwork has the right balance of humour and accuracy, with Evie’s cuddlies looking great. But the owl shouldn’t exist at all. Evie should be here with us still. So many of these things are beautiful reminders of the bright and bubbly human being that Evie was, but equally they are an ‘in your face’ shout that she isn’t here.

This is our new world, double-edged swords at every turn.

What Social Filter?

A while ago, another bereaved parent posted a link on the TCF Facebook page to an article that an American author had written on why other parents are ‘frightened’ of bereaved parents. I was curious about the title, so I read the article. While I agreed with the observations contained within in it, I didn’t necessarily agree with the analysis and conclusion. Frightened is a strong word with a definite meaning, and even if you soften it to something like ‘wary’ I don’t think that is right either. Fear isn’t the issue.

The points that the author was making in the article were completely valid and reflected accurately the world that I live in. I’m not going to debate the whole article here, but rather just lift a couple of key points because events over the last few days have reminded me of them. The first point is around ‘social filters’. In normal day to day conversations, relationships or work situations, in the micro-second between our brains having a thought and the words spilling out of our mouths, the social filters within our brains have a quick think and stop us from dropping ourselves in it from a great height. My social filter is not only ‘turned off’, I think it might have been surgically removed. Writing here is my ‘safe place’, I can express what I am feeling because you can choose to read it or not. Equally, the book (first proof copy has arrived!) is even more open because even kids can read this blog easily without supervision, whereas the book doesn’t have that barrier. I temper the language used here. In real life though, there are many occasions when I have adopted the same attitude of being honest as the social filter isn’t there; the subject might not necessarily be to do with being a bereaved parent, but also everyday things. I speak my mind, am totally honest and don’t pull that many punches either. The problem is that our society isn’t used to honesty any more. People have spent so long worrying about stepping over PC lines, or maintaining peoples’ self esteem that they take the sting out of everything and I truly believe that we have lost the ability to cope with honesty or even constructive criticism as a result. We’ve got used to being pink and fluffy. As a bereaved parent, with no social filter, the truth comes out whether I want it to or not.

That leads me into the second thought from the article; why do we do this. The author talked about a lot of things that have changed with regard to how we relate to others. But they didn’t make the connection that has occurred to me, or at least, didn’t print it if she had. Why has the social filter been turned off, or why doesn’t it work properly any more? My theory is quite simple. Evie’s death was the most horrendous event in my life. Losing a child is the absolute worst thing that any parent can experience. It questions you in a way that other events only hint at. It questions your very existence and your purpose in life itself. Being sat here typing away, nearly two years after Evie’s death, I have survived. I have survived the worst thing that God, fate, or life can throw at me. Nothing else will ever come close. What that means is that if I have survived this, I can survive anything, and therefore, nothing else holds any fear for me. Even death doesn’t bother me any more. Whatever the result of me being honest may be, it doesn’t frighten me because quite simply, I know that I can deal with it or its consequences. I’m not saying that I am invulnerable in any way, far from it, just that at a social level, my attitude to truth has changed. Unlike the rest of the world, I seek out honesty even if it is hard for me to hear.

As I have talked about before, when people change the subject when I’m talking about Evie, I will change it back again, and keep doing so because I am no longer afraid of the reaction. The added benefit is that we all learn by experience, so if I do it frequently enough, people will realise that I won’t be a blubbering heap on the floor. They will also realise that your child dying isn’t contagious. Pats and I were talking about it the other night, we still feel like lepers, unapproachable and isolated; the unclean. So with my social filters gone, I’ll still keep stating what for me is obvious, telling the truth and making the rest of the world aware of what it feels like to be a parent whose child has died. We are a huge minority - thousands of parents join us each year.

Evie was, and still is, an amazing loving caring person and I am going to do my very best to educate the rest of the world about what this life of ours, and thousands of others, feels like, because you know what - it can happen to you too. Are other parents ‘afraid’ of bereaved parents? I don’t think so, but some almost certainly have trouble hearing with the truth.

Connections

Connections can come in strange shapes and sizes. Last night, we had some of Patsy’s ex-colleagues round for dinner. For a reason I haven’t yet figured out, I decided to open a 2004 Guado al Tasso, a wine from Evie’s birth year. Evie’s birthday is in late September which for the northern hemisphere is right around harvest time in the vineyards.

At 15 years old the wine was still wonderfully fresh and vibrant, all of its elements in perfect harmony. It was bright purple in the glass without the slightest hint of age. I’ve drunk a lot of Tuscan reds over the years and can say without doubt that this was up there with the very best. As none of the others particularly liked red wine, I drank most of it - well it would have been rude not to!

Having a wine on the table from Evie’s birth year was lovely. It introduced her into the conversation in a natural unforced way, It had evolved and grown just as she should have done. And like her it was subtle, elegant and truly beautiful. I’ll keep the empty bottle as I have done with so many other 2004’s. This was one of the wines that would probably have been handed over to her when she was old enough to drink it, but now it has gone but left a memory in its place. Friends sat around a table, talking and laughing, enjoying a meal and remembering Evie through the connection of a bottle of wine.

Symbols

It’s funny how we attach importance to certain things or actions. Some very simple items take on a level of significance that must seem strange to the muggles out there. Each has its own meaning, perhaps a link to our child, a memory or just it creates a feeling of hope. For me, one of the most prominent of these is a candle. We light a candle to Evie every night, even when we are away when we can. Before Evie died, we never really ‘got’ candles; we didn’t particularly want a live flame in the house with a small child and two active cats floating about. Now though, each evening it has become a sort of ritual to light a candle to her. More than that though, whenever we are out, we will go into a church looking for a candle to light. Every fortnight I have a counselling session in Corsham which is right next to a church, and I now go in each time and light a candle for her, leaving a small prayer in the book next door to it.

When out hiking we look for robins. I’m not entirely sure what the meaning is here, but now we keep an eye open for what we call the “geocaching robin”; whenever we see one, we invariably have a good day in our geocaching hunt. On a recent hike in Cornwall, one brave and friendly little chap got quite close for a few minutes and it felt nice.

The symbology of a white feather, found out of place at home or in the car carries a strong meaning, being seen as a message from Evie. We have found a number of feathers in the house since she died and each time it has been quite difficult to rationalise it, with no logical explanation as to how it came to be there. Again, like with the robin, it seems to demonstrate a connection to Evie, a message of some kind.

Sometimes, we create symbols of our own, maybe to fill a void, or artificially create a connection. Mr Cookie Monster is a case in point. He was bought after Evie died, yet he has taken on a place of importance in our lives as we now take him round with us, like a mini representative of Evie. It’s as if Evie can’t travel with us so he can. Mr Monkey who was with Evie in bed has take on an almost reverential status now and we are frightened of taking him away in case he gets left behind. A couple of pounds of material and stuffing, yet he represents so much more. He is a physical representation of Evie, a permanent connection to her. He still smells of her a little bit. Evie’s favourite bear, EvieBear, is buried with her so that he can look after her if she is frightened. But before we buried him with her, we took a series of photographs of him, and had them framed.

These symbols bring comfort, connection or just warmth. It doesn’t matter that they are small things, or that no-one else particularly understands. They work for us and that is all that counts. There are two pictures today because we think that the world needs to remember EvieBear too.

Beauty and Sadness

Pats and I are at a Home hardware Conference in Woolacombe this weekend for my work. On the Saturday afternoon, during an extended break before the Gala Dinner we decided to head off to the Coast Path for a hike. We covered 8.81 km and felt very virtuous, especially as we had eaten the mother of all cooked breakfasts earlier in the day. We turned the corner at Morte Point, the Point of Death named because of the rocks and the danger to shipping, and were greeted by a gorgeous view, shown below. The light was perfect and I cursed not having my camera with me, so just used the phone to capture the moment.

We continued our hike and quite by accident stumbled on a beautiful little churchyard overlooking the Bay. It was peaceful and tranquil; a beautiful spot to rest for just a few moments or eternity. Patsy found a lovely gravestone to a young woman called Harriet who had died at the age of 15. On the reverse was a quote that was truly beautiful. I took another photo which is also below. Walking back up the path to the gate I was reading those words again on my phone and broke. I sat and sobbed, I couldn’t move. The pain of Evie’s loss back at full power once again, but also the pain for another set of parents somewhere nearby mourning the death of their own teenage daughter.

This afternoon’s hike had shown us the beauty of our countryside, the tranquility of a man-made graveyard and the bitter sweet words on a gravestone. Beauty and sadness all in one.

You Can Still Smile!

About a year or so ago, we made a donation to the Crane Academy in Kenya through the Royal High School in Bath. The Academy is the school’s main charity. We had received a chunk of money back from the pension that we had set up for Evie and wanted to use some of it to do some good.

The Crane didn’t have separate changing facilities for the younger girls, and they used the money to build some. Quite unknown to us, they painted this tribute to Evie on the wall. Evie would have thought it was hilarious that she had a set of toilets named after her. On Facebook this morning, the memory from a year ago popped up and it made me smile and laugh. Those toilets only exist because Evie isn’t here, but it still made me smile. I can still smile. The ludicrousness of it all would appeal to Evie’s sense of humour.

But more than that, the younger girls at the Crane don’t have to play second fiddle to the older ones any more, and that makes a difference. It in no way compensates for the loss of our beautiful daughter and I would still give anything to have her back. But at least it is something positive, and permanent. A bunch of girls in Kenya, who until the Summer of 2018 had never heard of Evie Clover now see her name every day.

And that is most definitely worth a smile. Even though tears are rolling down my face while I write this.

SSDD?

Wednesday Wisdom

SSDD.  When I was in the RAF we used the ‘phrase ‘SSDD’ to describe those times when little changed – ‘Same Sh*t, Different Day’. I even had a badge with it on, that I kept hidden under my lapel.  That one phrase perfectly describes my new world without Evie. One where no matter what I do, or try, it still feels the same without Evie in it – empty. There are moments when things brighten for a while, the clouds part a little and we can glean some enjoyment from something, but it always ends up the same; me wishing Evie was still here.  The evenings are the worst.  Quiet and lonely; you don’t have to be alone to feel lonely.

The trick now is to find ways of parting the clouds artificially, letting the sunshine through for longer. The weather may be grey outside but we can still help ourselves to put some colour into our lives again. The cork bird boxes have been fun to make and now I am experimenting with Christmas decorations made from Prosecco corks which are larger – I need to figure out a better way of propping them up while the glue dries as they keep sliding off.  Anyone got a competent twelve-year-old I can ask for advice? Preferably one with a Blue Peter badge!

Using the creative side of my brain helps in a number of ways. It makes me focus on what I am doing for a while and during that time, it stops ‘raining’ in my world.  When something actually works, the sun comes out and I can feel a sort of warmth. Evie had the creative gene in our family, it seemed to skip both Pats and I, but every now and then something works well and I feel a smile of approval from Evie.  Although, let’s be honest, she has probably been giggling her head off at my useless attempts for most of the time.  Having started the photography stuff again, that’s two creative routes that I am working on to give my brain a rest.  The writing though is a very different beast. 

Writing fulfils two roles. Firstly, it is sort of creative, although not in the same sense as the cork bird boxes.  I’m not trying or learning a new writing style, nor am I particularly aiming to write a best-seller.  But it is creative in a way. Its main purpose is still to unload, explore and understand. It sits neatly between the head space and the heart space. But it is evolving too. The next book will be much more of a head-space effort, and I have deliberately decided to go down that route.  I’m actually planning things out quite carefully which is pretty rare for me.  

By pulling all of these different things together, I can get a break every now and then, and dip in and out of various activities when I need to.  Evie is never far from my thoughts, but now it feels as if I am doing something with her; I have entered her world in some small way.

So today is still SSDD, but it could morph into something more manageable. More like SSSoTT,DD – Same Sh*t Some of The Time, Different Day.  And that’s a good place to start.

This One's For You

This morning I was reading a Facebook post from Maria Ahern, the Chair of The Compassionate Friends (TCF). It was about how she had tumbled off a stage at a TCF gathering and hurt her head quite badly. She talked eloquently about how complete strangers had come to her aid, some cupping her gouged, blood-covered head in their hands. The unprovoked help from strangers.

That got me thinking about the help that we have received since Evie died, not so much from strangers, but from people who were really only acquaintances, or from our real friends. I said at Evie’s funeral that she had shown us the meaning of true friendship. My small-bear brain then followed that line of thought to the next step which was to thank them. We have thanked our close friends many times, but there have been many small acts of kindness as well that need to be recognised. As you will know, we like country music and a rising star is a guy called Luke Coombs. He has written a song called ‘This One’s For You’, and it is about people who are there for you when you need them. The words in this song work pretty well for our situation, so follow the link below and listen to the words. Crank up the volume too!

To all of our wonderful friends, “Thank You!”, this one really is for you.

https://www.youtube.com/watch?v=IPcgIgVy1Dg

Snap Happy

Wednesday Wisdom

I was uploading the photo for Photo Saturday on the The Compassionate Friends FB page at the weekend, and the image of Evie as a toddler made me smile and sad at the same time.  The innocence in her eyes, the trust, the love that she exuded were lovely to see.  We had no idea what was coming and that brought back so many painful memories of two years ago when we were given the final diagnosis that her tumour was terminal.  I sat looking at that picture wondering how it could all happen.

Every image that I put on Facebook is tinged with sadness.  They are all a double-edged sword for me.  I love looking at pictures of her, yet at the same time, they prick my heart and I feel the loss more acutely.  We are lucky in that we have hundreds of photos of her, but sadly few if any videos, and almost no recordings of her voice.  These photos bring back the good memories for me now and make me smile, though they always follow-through with sadness that I can never take any more.  I know that many bereaved parents struggle with looking at pictures of their children, but for me I could lose myself in the albums for hours.  Saturday mornings are spent sat in bed with a coffee trawling through the portable hard drive, looking for the right image. Patsy can’t do it. She lays there waiting for me to make the decision.  Saturdays were always a laugh with Evie in between us, playing around.  Even when she was a teenager, she still enjoyed that time with us at the weekend.

For all of our friends out there with their children charging about, making a nuisance of themselves, take more photographs, take more videos, record their voice.  You can never have too many pictures.  Now that we can store thousands of photos on our phones, we don’t have the faff or cost of getting films developed and filling photo albums, there’s no excuse.  I don’t wish to be morbid, but accidents and disease don’t discriminate between rich or poor, colour, gender, sexual preference or religion. It can strike at any time, without warning, so do yourself a massive favour and get the camera out at every opportunity.  I’m glad I did.

You can never have too many photos of your kids, so snap away!

Something for the Heart Space

About a year ago, my counsellor said that I needed to find something for my heart space, to help with the healing process. Working and doing productive things helped the head space, but I needed a relaxing pastime or hobby to help me heal. Something to occupy my mind but in a way that didn’t wear me out in the process. I started writing which has been great, and then exercised my creative side by making the cork-covered bird boxes.

Today though I finally returned to my second favourite hobby after wine - photography. Evie’s Godfather David is a damned fine photographer and agreed to take me out and show me how to get the best out of the camera, and even take it out of automatic mode! David and I spent a few hours mooching around Hinton Ampney House photographing various vistas and plants, looking at composition and generally experimenting with taking the same shot in different ways. My natural urge was to push on and snap away, but he convinced me to slow down and ‘wait for the light’.

It was sunny, rainy, and cloudy all in the space of ten minutes at one point and that gave me the opportunity to take the same shot under different light conditions. The photos that I took aren’t particularly good, but that’s not the point. For a few hours I was able to immerse myself in something where I didn’t have to block out the pain, but let it run with me. The sadness almost helped me look for a certain image to reflect that mood. There’s a small church there and the gravestones and trees were beautiful; I lit a candle for Evie in the church too to say ‘hello’.

The creative side of my brain was engaged, I got to remember why I used to enjoy photography so much and David is pretty good company too. I can safely say that my heart space was well and truly looked after today. David and I chatted about photography, our families and remembered Evie. Next time we are going to find some architectural photos to take and I’ll be tackling exposure compensation ………... Looking forward to another day of healing the heart space. David Bailey doesn’t have anything to worry about though.

The best bit for me though was that I didn’t feel guilty about enjoying myself. That’s an important ‘first’. Evie isn’t here, but somehow she was involved or nearby and that was a comfort.

Do You Believe in Ghosts?

Do you believe in Ghosts? Following on from last week’s WW, I am going to have a think about where Evie is now.  On several occasions since Evie died, I have sensed something, a presence perhaps or an arm-tingling coldness.  I’ve never given the prospect of any form of afterlife much thought before but now it has taken on a different level of importance.  The thought that Evie has gone in every sense is too painful to accept, so having a hope that her soul is there somewhere, still in touch, gives me in turn the hope that I will be with her again.

Religion aside, I have always thought that there is so much in this universe that we can’t possibly understand that there was a chance of some form of life after death.  I’ve always felt that our brains are simply too ill-equipped to figure out all the facts and science.  Could it be an existence where time doesn’t exist?  Two years ago, the subject was nothing more than a topic for conversation over a pint of beer, but now it is something that I want to believe in.  Want to believe in, and need to believe in.

Over the last 21 months, I have sensed something that suggested that Evie was nearby. The most recent was a noise upstairs, not the cats who were out, and when I went to investigate, I was suddenly very cold and covered in goose bumps.  I talked to Evie and the feeling went.  For me, the thought that she is around is very welcome.  I love those moments when they happen.   It gives me a glimpse of being connected again.  It’s funny in that I have never considered faith to be the link or connection.  Faith and hope would seem to me to be intertwined, one supporting the other.

A while ago I had a chat with the vicar that held Evie’s Celebration of Life about faith.  He asked me what the opposite of faith was and I said ‘doubt’.  He disagreed an offered an alternative view.  He suggested that the opposite of faith was empirical evidence that God didn’t exist, because if you can’t prove that something doesn’t exist, then your faith is right.  You can argue the pros and cons of such a view all day long, but to me it indicated that if you cannot, categorically, prove to me that Evie’s soul has gone forever, then my faith that it is there somewhere is sound. Am I cherry-picking the argument? Probably, but if it helps me then that is good enough. 

Likewise, as I said last week, I have considered going to a medium, but in a way I don’t want to because if it was a bad experience, it could harm those lovely moments, and I’d rather be clinging to something that I can’t explain as a positive experience.  Hope is a powerful emotion and gives me some degree of strength.  The strength to face down the pain of her death.  And right now, I’ll accept the strength in whatever form it takes.  Evie’s soul is out there somewhere and one day we will all be together again as a family.

Hope

Now that ‘Eggshells’ is with the publishers for type-setting I needed to keep writing, but I couldn’t find a topic or title. Then I had a counselling session that opened the door for me. I couldn’t just write some random stuff, it had to have a purpose. So, I’ve started writing the second book “Waiting for Enlightenment” and here’s the first couple of paragraphs as a taster:

WAITING FOR ENLIGHTENMENT

Chapter 1

Hope.  The last element that came out of Pandora’s Box.  Hope is an incredibly powerful emotion and tool, and gives us the ability to do incredible things.  It may be a false hope sometimes, but that isn’t important.  It exists, it is almost tangible sometimes, and is there waiting to be found.  Hope transcends all else and is a uniquely human emotion.  Without it we are lost.

When Evie our daughter died from a brain tumour, hope was the last thing that I thought I might find.  I wasn’t even sure that I wanted to find it.  I just wanted it all to end. Everything. Life, the pain, the emptiness.  I wanted it all to be over.  I wanted to be with Evie again. Those first few months were terrible, the following ones little better.  Year 2 was far worse than year 1.  As time went on, how we carried our pain changed, and not always for the better. Patsy and I grieved in entirely different ways, and dealt with the pain in different ways too.  Likewise, when it came to trying to heal, we sought out different routes.  Mine started to focus on writing.  Firstly, short pieces called Wednesday Wisdom that were posted on the Facebook page of The Compassionate Friends, a charity that supports bereaved parents, and then as time progressed to my first book, Eggshells, a blog and then a second book.  This one.  At the core of this book is one thing: hope.

Staying Connected

Wednesday Wisdom

Staying connected.  Finding ways to stay connected to Evie is extremely important to me. We talked about it at our last support group meeting, and a common set of connections came out.  Patsy has a pendant with Evie’s fingerprint on it which she wears every day, and subconsciously holds it during the day; I have the same thing but on a key fob.  Photos of Evie are everywhere in the house.  Her bedroom is as she left it the day we went on holiday to Spain in October 2017: we go in there all the time.  Other parents that I know hold or even wear their child’s clothes as a metaphoric comfort blanket.  We listen to Evie’s music.  But these are physical things, not emotional.  How do you stay connected in an emotional sense?

I talk to Evie a lot, especially when I am hiking.  I say ‘Good Morning Pickle’ and ‘Good Night Pickle’ every day.  We light a candle for her every evening, even when on holiday, and also light a candle in every church that has them.  Simple things like ‘Photo Saturday’ on Facebook maintain a connection and also ensure that her memory is out there for all to see.  In a way, this WW process does something similar.  We have tried to stay in contact with her schools, but the change of heads at both has weakened that connection a little.

But how do you ‘feel’ close again?  It is something that I have tried to work out for a long time, but never quite managed.  There have been times when I have sensed her presence in some way, but those times have been infrequent.  Without doubt I want her near me again, but don’t really know how to achieve that in an emotional sense.  I have toyed with the idea of visiting a medium but haven’t yet done anything about it.  I have read others’ experiences of these visits on Facebook and there seems to be a full spectrum of results: good, bad and awful.  My rational self says it’s a waste of time, my emotional need says that it might just give me some form of reassurance. But at heart I am ultra-cynical, so it could end up being a lose-lose situation because even if I hear the things that I am so desperate to hear, I won’t believe them. 

As time passes, more of the nice memories come back, forcing their way through the painful ones, though at this time of year as we approach all of the 2-year anniversaries, they are struggling a bit.  I still haven’t worked out how to feel like a Dad again, and for me that is at the core of the emotional connection. 

Answers on a postcard please.

Why Should I 'Move On'?

One of the toughest things to deal with if you have lost a child is everyone else’s expectation that at some point you will ‘move on’ and be back to your old self, as if nothing has changed. This expectation comes from a position of true ignorance. The rest of the world has absolutely no concept of what losing a child feels like, so they just compare it to their own experiences such as losing a parent or friend, and set their paradigm there.

I can say without doubt that I will never ‘move on’ because to do so would be to belittle Evie’s death, make it appear unimportant in some way. But that doesn’t mean that I can’t adjust, and cope. It does, sadly, mean that I will wear a mask for most people, hiding the agony that I feel every day. More importantly, I don’t want to move on, or do anything close to it either. There’s a word that I have used many times since Evie died and that is ‘honour’. Not honour in the samurai sense of the word, but honouring her life, her existence. I will spend the rest of my life honouring Evie’s life, finding ways to mark and celebrate the wonderful person that she was, demonstrating to the world that she always cared about others and for someone so young, she set the bar incredibly high for everyone else.

Does this refusal to move on, and the wearing of a mask mean that I will be living a lie? I don’t believe so. To me it is a simple acknowledgement that the vast majority of my acquaintances just can’t imagine what is going on in my head, and if they really did, they wouldn’t be able to cope anyway. It is a realistic compromise to help lead an acceptable life. Those around me that know me, will know the true me, the broken me. For the rest there will be something in between and their expectations are something that I am just going to have to manage. I also think it is down to me to ‘educate’ them. That doesn’t mean some headline-grabbing protest like Extinction Rebellion, but a slow steady process of information being made available. The worlds of bereaved and non-bereaved parents are poles apart and to try and influence that ignorance will be a tough challenge, but to honour Evie’s life it is something that I feel I need to do.

The Wednesday Wisdoms are one way of doing that amongst the limited audience of family and friends, but it also needs to extend to a much wider audience including work colleagues and even total strangers. This blog is a beginning and it would be helpful to the entire bereaved parent community if readers of this blog would advertise it within their own friendship groups.

Seventy four years ago the Second World War ended and hundreds of thousands of parents were mourning the deaths of their sons and daughters, many of them teenagers or children. A collective mourning and awareness that the country seems to have forgotten. I’m not inferring for a second we need another war, or that we need to return to the days of hiding emotions completely, just that we need to open the eyes of the public in general once again to how totally different the death of a child is to losing a parent. My father died in 2001 at the age of 78, my wife’s parents were 84 and 86 when they died just 5 days apart, so I have those experiences to draw on. Though painful even now, they were ‘in the right order’. Evie was 13 when she died. That, in my view, is just plain wrong. Patsy and I face potentially 30 more years living without her. Thirty years to be in pain. To ‘move on’ as if she had never existed, or just park her memory is dishonourable; she deserves better.

So is the concept of moving on to the benefit of us bereaved parents or everyone else? I think that it is the latter. I have watched many parents who have lost children hide from the pain, in effect moving on, and in every single case it has returned in spades to bite them. Badly. I have seen people who can no longer cope or function because they haven’t dealt with or acknowledged the grief. Their efforts to move on, quite possibly for everyone else, have resulted in a resurgence of the grief when triggered further down the line. The pressure cooker of corrosive pain coming in a wave of emotional destruction.

So I won’t move on. Why should I? I don’t want to, and believe strongly that to do so would be to dishonour Evie’s life. But ….. I will work to find a way to function better, to adapt to this new life that I don’t want and, vitally, to educate those around me on how to deal with someone in this position. Thousands of children die in the UK every year, so that means that there are thousands of parents going through the same trauma. That in turn means that there are tens or even hundreds of thousands more friends, relatives and work colleagues that need an insight into how to cope with the person who is hurting in a way that they don’t understand. They are the ones that need to understand what is happening to us and why, it is not for us to change for them. The trauma of a child’s death results in a mental illness like depression and should be given the same respect. This is going to be a slow burn, but a burn nonetheless.

You can do your bit by asking about a child who has died. Say their name. And then listen when the parent responds. HR managers should make the time to seek out information to help them deal with the problems that losing a child can bring. The more you look after a bereaved parent, the more they will repay that support. For many of us, the compulsion to run, move house, change jobs is strong because it takes you out of the pain zone, at least you think it does. For every bereaved parent that leaves a job, that business loses their corporate knowledge and has to recruit a replacement - cost and loss in productivity while a new person beds in. So why not help the bereaved parent in the first place and save yourself the hassle? It’s not rocket science, just good business practice.

Let’s be brutally honest here - motor accidents or cancer don’t discriminate between rich or poor, left or right wing, race, gender or religious preference. It can happen to you and you can’t do anything about it. If it does, it is going to devastate your life in a way that you cannot possibly imagine right now. You cannot hide from it. So why not show some compassion, get to understand what someone else is going through and do something to help? If you work in a big firm, get someone in to talk about it. Only by learning can we open up the communication channels.

You can comment on this blog below if you wish to.

Mr Angry from Melksham

Wednesday Wisdom

I figured that it was about time that I tackled anger.  I don’t know if this is a phase that I am going through, or something more permanent, but I am certainly angry, and have been for some time.

Last week, I received the edited version of my book back with all the usual corrections to syntax and grammar, but there were also a lot of comments on the content, its contradictions and inconsistencies.  My initial response was one of anger; how could this person comment on how I felt?  Having calmed down, I gave it some thought and it occurred to me that the book was being edited by someone who had absolutely no concept of what this type of grief felt like and was commenting from a position of ‘ignorance’ in its truest sense; he was entirely ignorant of what this feels like.  The impact of Evie’s death on me is something that the editor could not comprehend because he had never experienced it, and my comments at the beginning of the book that emotions relating to this type of grief are volatile, didn’t sink in with him.  The point that I had been trying to make was that all of the perceived ‘norms’ disappear for us bereaved parents.  I was angry that he couldn’t understand that.  I was angry that the death of my daughter hadn’t connected with him.  I was angry that there was no comment on the loss itself.  But…….  Why would there be?  I had written the book as a way of unloading the pain, using it as a way of examining my own feelings and healing at least in some way.  The editor was just doing a job in an objective way.

The more I thought about my anger at him, the more I realised that at my core, that I am angry at everyone because Evie has gone and the rage that I feel needs an outlet.  Just like all bereaved parents, I am angry that Evie is dead and yet so many others continue to do evil or wrong.  And I am angry at myself because I can’t change it, I can’t bring her back.  I’m angry that fixing things is what I do, and I can’t fix this; it is beyond me.  Her death is brutally unfair.  I lose my temper at the simplest thing.  Whatever triggers me isn’t the problem, it is the fact that I don’t have an outlet for it.  I can’t vent that rage anywhere.  Relaxation techniques don’t work for me.  I need to direct the rage somewhere and release the pressure.  I suppose that I need the world to understand what this feels like, all day every day.  As each day passes, more people step back.  We struggle to fit in with a world that doesn’t understand.

Basically, I want Evie back. I want her here in my arms. I don’t understand the unfairness of it, and that makes me angry.  Worse, I have no idea how to tackle it.  Another topic for counselling?