Dads Grieve Too – Evie

Hi everyone – I’m Greg, Evie’s dad.

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I want to start by thanking Chris and Hannah for inviting me to write a guest blog on here, for many reasons…

I love talking about Evie and sharing her story, and I also know how important it is that we talk about baby loss – our culture is crap at dealing with it  – but also, for forcing me into writing a blog! I started my own blog a few years ago, and find it very therapeutic, yet never get round to writing content for it due to one reason or another… having a deadline to hit for this guest appearance has made me sit down and do something…

In 2015 when my wife Jill became pregnant with our first child I was living in a different world. My impression of the process of having a baby was based on nothing more than what I had seen on the TV. You get pregnant, it all goes smoothly, the baby pops out, you take them home and everything is absolutely perfect, right?

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We were so thrilled to be expecting our first child and already had big plans for how we would decorate the nursery and all the things we should buy for the baby when we went for our 20 week scan not long before Christmas in 2014. It was then that everything changed, the horrible moment when the sonographers turned their back and clearly discussed that something was not right… we were referred to the specialist team at the RVI in Newcastle for further scans and this is where we found out that Evie had problems with her heart, a combination which they had never seen before. Our world fell apart, yet we decided that what we had to do was be positive and do everything we could for her.

Throughout the pregnancy there were some problems and the doctors suspected that Evie may not be able to swallow and that they did not know how well she would be until she was born.

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On the 30th March 2015 Evie made her way into the world, and she was beautiful! The doctors assessed her and confirmed that she was unable to swallow – she was a TOF baby – a life threatening condition which required an 8 hour operation on the day she was born. They also confirmed their diagnosis of the heart problems she suffered. She would need a minimum of 3 major heart surgeries and possibly a heart transplant…

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We lived in hospital with Evie for 6 months, during which time she developed many complications with her digestion, her breathing and her heart. She had 14 operations all together, but still had the strength to get home for 3 precious weeks in July.

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Chris has asked me to stick to around 1200 words – even if it was 12,000 I don’t think I could do Evie’s story justice… she faced so much and she was an incredible little lady.

On the 27th September 2015 Evie grew her angel wings. Her body had simply had too much and she decided that enough was enough.

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We made a very important decision the night that Evie died. She WILL make an impact on the world, and everything surrounding her needs to be positive. We used the wonderful world of social media to keep family and friends up to date with how Evie was doing each day during those 6 months and called the community that developed around her #TeamEvie. Every day Evie made progress of some sort, and when she passed away we knew we needed to embrace her spirit and do the same…

We created the charity ‘Team Evie’ (www.teamevie.org) for our little lady and set about making a difference for others in her name, and we are incredibly proud of the impact Evie has had on the world!

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In less than 3 years we have raised over £160,000 and helped thousands of families… we support families during their time in hospital, looking after their poorly children at home in the community and also support bereaved parents on this journey we call grief…

How I like to look at it is that every day when Evie was here with us, we did everything we could for her; now she is not physically here with us, we STILL do everything we can for her through her charity. Every day I get to hear people speak Evie’s name, not with awkwardness because they are afraid of upsetting me, but with positivity and pride because of what she has achieved…

I am a positive person and I try to look for the best in every situation… but grief is bloody awful, and what a challenge it is to make that seem positive!

Yes, I have changed irreparably because I lost a child. But I am Evie’s dad, and that is amazing. No-one else gets to say that. There are parts to how I have changed that I don’t particularly like; such as having days where I feel awful about nothing in particular, struggling with worries (which is a new emotion for me), taking things too personally sometimes… BUT, I am also now more aware of the experiences of others around me, more open to talk to others about difficult subjects, more supportive to others, and a whole host of other positive changes, for which I can only thank Evie.

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Yes, I have lost friends because I lost a child. That is mental isn’t it?! But then, some people who had drifted out of my life over the years very quickly arrived back in it to lend incredible support to me – and that is what I focus on. Those people know who they are, are there are many different reason why they are so good to me – mainly that they are wonderful people. I have described the process as like clearing out your phone book, losing a child soon gets rid of all those people who don’t care, and fills your phone book, and life with good eggs that will only bring you love, laughs and a shoulder to cry on.

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I’ve also learned that it is OK to not be OK. And that is massive. I am aware that sometimes I need help. Sometimes I need to talk to someone. I am a lucky man really; I have an incredible wife who always supports me, an inspirational daughter looking over me all the time, two beautiful daughters at home keeping me busy, and I get to work each day for the charity we created helping others. But some people aren’t so lucky. Some people have nowhere to turn. And that is why we need to talk about the things we face as bereaved parents more openly…

It turns out I was wrong about the process of having a baby. It doesn’t always go like it does on the TV… in fact quite the opposite. Everyone I speak to seems to have some experience of baby loss – yet it still remains a taboo subject.

We are all in this together. So, let’s face it together. Let’s talk about it.

Greg’s blog: https://goodgriefgregory.wordpress.com/

Greg’s Charity: www.teamevie.org

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