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Good Grief Gregory

Evie’s dad Greg writes a blog over at Good Grief Gregory where he tries to come to terms with certain aspect of grief.

You can check out the latest posts over on the site but they are also here!

Sliding daughters

So, tomorrow is a very strange one to get my head around. It is the day that our second daughter Imani reaches the exact age that Evie was when we lost her… and then with every passing day she will get older than her older sister…

It is another date which brings up those feelings of “This is completely wrong and shouldn’t happen!”

The natural order of things is being messed with. Firstly no parent should experience the death of their child. Now we have two baby girls who’s ages are going to be mixed up…

One thing is for sure though, Evie always had a special look in those beautiful eyes, a seeming wisdom way beyond her years, and no matter what happens I have no doubt that every day Imani will have Evie watching over her.

I’ve always said that I don’t judge people by their age; none of this getting worked up about birthdays, or saying someone will be rubbish at a job because they are young.

And my daughters will be no different. Imani is always going know Evie as her big sister who  smiles down and looks after her.

And that’s how it should be, even when she is old enough to whinge about turning 30, 40, 50…

There is always hope

I recently listened to the Tom Hanks episode of Desert Island Discs. For the record, some of his choices were pretty poor… he also seemed to suggest that he thought Clinton was going to win the election… so it wasn’t all accurate, good stuff.

But it wasn’t his taste in music or his political insight which resonated with me, it was something he said about the film Forrest Gump.

Hanks explained the idea behind the plot; that even though the main character loses many of the important people in his life, he survives and shows that there is always hope.

This got me thinking. It is incredibly accurate that concept. There IS always hope;

  • There’s always hope I can make Evie proud
  • There’s always hope things will get easier
  • There’s always hope we can help lots of people in Evie’s name through our charity
  • There’s always hope that we will be together again one day

I guess not everyone chooses to see the hope. Some are clouded by anger, by questions of ‘why?’ and many more of the complex web of emotions of grief.

But through our incredible daughter, every single day of her life we saw that there was hope. When the doctors doubted her, she proved them wrong. When she looked like she wouldn’t pull through situations, she did. Evie only knew one way, positivity.

We managed to keep going through all those tough days in hospital with Evie by holding onto the hope that things would be OK…
And I suppose the only way to keep going with Evie not physically here is to do the same.

Hope.

Thanks Tom Hanks.

A year in the life

So, today is the day.

It is a year since we had the chat with the doctors and they told us Evie would not make it. It is a year since I held my wife close to me as we stood with our daughter knowing that we weren’t going to win our battle. A year since I had to call my parents to tell them the news. It is a year since our Evie left us to gain her angel wings. A year since the hardest day of my life.

Looking back over the last 12 months I thought it would be useful to reflect on how it has been, what it has felt like, what I have done etc… So here we go.

It all started with the most overwhelming amount of emotion you could imagine, disbelief, heartbreak, emptiness… and in the beginning it is very raw. People talk about child loss as the worst imaginable experience, and I think they are right. But we made a very important decision a year ago today – Evie’s life will have a positive impact on the world, there won’t be moping and complaining!

Your life changes forever when you lose a child – a numbness falls over you. Nothing is the same again. And those first 6 months I really felt it. Even down to the simple things in life which usually provide a distraction from anything; TV, radio, music  – a waste of time. I had no interest. It is almost as if your life changes from being in full colour to being in black and white.

So what kept us going? The positivity I spoke of. That’s what. Evie brought us all positivity, hope and strength. And through setting up the charity in her name we set out to help her make her mark – to help others. Through all the work this took we were focused – and it really helped. I often comment on how important it is to us that people speak about Evie, and through the charity people talk about her every day. This has been a huge help to us.

Then our second daughter, the beautiful Imani, entered our lives. She is amazing, gorgeous and has helped us so much. I thank our lucky stars, and Evie, that we are lucky enough to have her in our lives. But I will be honest, it is sometimes confusing and difficult to have two daughters, but only hold one in your arms.

It has been a tough year. But Jill tells me that she always remembers some words I said right at the beginning:

“I don’t want people to look at us and think ‘There’s that couple who lost their baby’. I want people to look and think ‘There’s Evie’s mam and dad.’”

I really hope we have achieved this.

There are more challenges to come, of that I am sure. And how will I face them? With a smile, like Evie taught me to.

And I am a lucky man. I must never forget that.  I have an amazing wife, a beautiful baby girl in my arms, and I AM EVIE’S DAD!

And as hard as it gets I must never forget that.

Rid yourself of wrong’uns

I think everyone has had that moment in life where they look at their phone and it says “376 contacts” – it’s time for a cull!

That guy you met on a course that day…the girl who sang in your band once…that bloke you bought a car from…that lifelong friend who has hung you out to dry since your daughter died.. What?! Wait?! Surely not?!

It’s incredle how bereavement can change every aspect of your life, including who is important in it. And strangely this can be as therapeutic as the old phone book cull.

Now I don’t want to lump everyone who has disappeared from my life since Evie died as horrible people who don’t care – as that simply isn’t the case. But I’ve tried to think why it has happened, why would people do this?

1. They can’t handle what has happened and don’t know what to say. Maybe this is true for some people. What do you say to someone whose baby has died?! Well, what do you do if you lose your baby?! I don’t know what to do, so we are all in it together…unless you choose not to be in it with me. “Confirm delete? Yes.”

2. It’s an awkward situation. Yes it is. But if you see my previous post I will own the awkwardness. But I need you to be there in order for me to do that. “Confirm delete? Yes.”

3. The ‘head in the sand’ crew. What a horrible situation it is when someone loses their child. Maybe the best thing to do if this happens to someone you know is keep out of the way until they are ‘over it’ or don’t mention it any more…a sort of ‘wake me up when it’s all over’ approach. Well, the truth is we won’t get over it, we will never stop talking about our Evie. Also, the saddest part for us is that of any time in our life when we need you, it is NOW! “Confirm delete? Yes.”

There must be other reasons too. And some people just maybe don’t have the time. I don’t know, maybe I don’t make the effort I should…

So, through this journey we call grief I seem to have cut out a lot of people I clearly didn’t need in my life. But it can be a lonely old world with the challenges grief brings.

Luckily I have added some incredibly positive people to my life, who will survive any cull of the phone book.

And some of my friends have been truly incredible in their support – as well as friends from years gone by who have suddenly re-entered my life and been tremendous, listening to me, offering support and simply being there.

I guess my message is that sometimes it takes a huge event in your life to make you appreciate those around you.

Hold the nice ones close.

And the wrong’uns? Delete.

Eternal Blame

Here’s a question…when someone dies who is to blame?

There is a constant niggle to any parent who loses a child which makes them think they are to blame. Endless questions; What could I have done differently? Should I have…? What if…?

In our situation with Evie we gave consent 14 times for her to go to the operating theatre… We were by her side every second of the journey. Could we have done something differently? Should we have intervened to stop something happening? Could we have made a difference in any way?

My own feeling at this moment is that we did make a difference. We were nothing but positive with Evie and showered her with love and care and I honesty believe without that she would not have been with us as long.

The reality medically for us is that Evie could not have coped and her body was not able to manage, no matter how hard the incredible doctors and nurses tried using all their phenomenal skills.

Maybe I am having a moment of clarity, but the times will return when I ask myself yet again; What if? Should I have…? And I think they will return endlessly throughout my life.

The thing is it was not just us who lost Evie. Yes we lost our daughter. But my parents lost their granddaughter. My sister lost her niece. My nephew lost his cousin. They all feel the grief of losing her, and will all have questions…

Are they to blame?! (That sounds ridiculous doesn’t it?!) Are the others? My friends and other family who have been effected by Evie’s death?

The simple facts here are that no one is to blame. No one caused Evie to be poorly. In fact the only people who had any influence on Evie were showing her love and trying to help her or make her smile.

Maybe it is just human nature to feel responsibility for things we can’t actually control, especially when they involve our children. And if you don’t agree, wait until next time you child does something amazing and try not to think ‘they got that from me!’

All kinds of tired…

So, when we were in hospital with Evie there was a section of time, around 3 weeks, where Jill and I got 2 hours sleep a night. This came after 5 months of being with Evie 14 hours a day and hardly sleeping when we left her at night in intensive care. We managed, as you do for your children… But we always commented that people don’t know what tiredness is!!

It turns out there are all kinds of tiredness that challenge you in this life of ours… And the tiredness of grief is certainly a big hitter.

An actor takes on a role for 2-3 hours during a play and finishes each night exhausted from the sheer effort of keeping a front of something they are not. A grieving parent, and dare I say it more so a dad, has to put on this act all day at work, when out with friends, around a lot of family. It is huge, and really takes its toll.

I often finish a day and think ‘why on earth am I so tired, I’ve only…’

The emotional state of grief is also a great energy drainer. Just being ‘OK’ takes great reserve and attempting to balance your emotions is a subconscious, never ending battle…

I’ve tried an approach since losing Evie of ‘Healthy body, healthy mind’ (more on this in a future blog) and smashed the fitness routine, lost a few stones, toned up, got the fittest I have ever been… Turns out I am still exhausted. So I don’t know how I would manage being unfit. Gripes.

But I always have my hero. My daughter. She was tired. She was bloody exhausted. She faced more than I ever will, and never once did she give up, stop fighting or whinge about it…

I’ll see you for the 5.30am alarm.

Bring it on.

Kindness is magic

My word it is tough dealing with the loss of your child. It is impossible to explain, to anyone. But what is easier to explain is what makes coping with the pain a little easier.

All too often there is negativity, everywhere. And this is not for me. It never has been.

Since losing Evie I have encountered so many incredible, thoughtful and kind people. People I haven’t spoken to for 20 years, people I have never met before… they are everywhere, the world is full of kind people.

We set up Team Evie  to help other people and ensure that Evie’s life is remembered positively. And the response we have had is nothing short of magical. People have really taken to Evie’s story and done some marvelous things to raise money and awareness.

But I have seen more than just fundraising. The people who mention Evie’s name when no-one else will. The people who put their arm round me at just the right time. Those people who treat me like they always have. I could go on. And on.

While sitting pondering the wonderful people in the world and how they make life worth living I remembered a quote, from Ricky Gervais:

Kindness is magic because it makes you feel good whether you’re the one handing it out, or the one receiving it. It’s contagious.” (Derek)

And then I thought… Yep, I am right. There are some brilliant people out there, and I love them.

Own the awkwardness

It often feels as a bereaved parent that you can divide the human race in two – those of us that have lost a child and the ‘others’ who haven’t. We can often feel disconnected from people, friends, family and that they don’t want to connect with us about the loss we have suffered.

In between us sits a barrier. That barrier is the awkwardness. I mentioned in my first post that our culture seemingly can’t deal with death. This is the very epitome of the issue.

 “What if I offend them?”

“What if they aren’t ready to talk about it?”

“What if I put my foot in it?”

All questions I am sure run through the mind of people who enter a conversation with a bereaved parent…

The reality is that we could never be more upset than we already are. And nothing you say will change that.

So, from now on I am going to own the awkwardness between me and everyone else. It’s mine. I have it covered.

“Evie” There you go. I’ve said her name. She is my daughter, always will be and I love her with everything that I have. Let’s talk about her. Let’s talk about everything she did in her life. Let’s talk about how we lost her. Let’s talk about what she would be doing now. I’ll start, so you don’t have to.

I hope this approach makes a difference. Tackling it head on.

The reality is that these ‘others’ us bereaved parents view as the lucky ones will be carrying their own burdens too. A lost partner, parent, friend. Perhaps broken marriage, a lost job. They may feel exactly the same facing us in a conversation.

Maybe we all have awkwardness.

Let’s own it.

But you can’t have mine. I’ve taken it.

The First Post

So, this is the world of blogging…

I think I should start by explaining who I am and why I am starting a blog. My name is Greg Johnston and in September my wife and I lost our daughter. Evie was born in March and died 6 months later, and she was amazing. She has changed our lives forever and every day we try to make her proud.

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During the time since Evie’s death we have started a charity to help people who face similar circumstances to us (www.teamevie.org). This has helped us greatly and every day we get to talk about Evie through our charity work. I am sure I will talk lots about the charity in my posts…

Since September some other things have also become very clear to me…

  1. Our culture is crap at dealing with death. We do not openly talk about it, it seems when someone dies we try to sweep their name under a carpet as quickly as possible and ‘move on’. In our position this simply isn’t an option. Every one talks about their children all the time, so why shouldn’t we? Just because my daughter isn’t here any more it doesn’t mean she is less a part of my life than anyone else’s child is theirs…
  2. When a couple is grieving for the loss of their child the natural response of everyone is to comfort the mother and check they are managing. The man will just cope, won’t he? Well, actually, no he won’t…

Through my blog I hope to share my experiences of the process of grief, and more specifically a fathers grief.

It is clear from our experience since Evie’s death that people either ‘get it’, support us and empathise with the challenges we face, or…they don’t.

We don’t need answers, we need people to be there.

Hopefully through sharing my thoughts I can make a difference to those experiencing grief, and those who hope to support them.

I guess we will find out…

G x