Child Bereavement UK basically get it. You're very aware of all the assault that has happened to you, but it’s a revelation when you sit down with someone who is talking about it in a way that shows they fully understand how extreme the set of circumstances are and that here is a programme and a mechanism for actually dealing with that. 

Michael’s son Christopher died when he was six due to a congenital heart defect.  Michael talks about Christopher’s death and how he has been supported by Child Bereavement UK in Glasgow.

“Christopher was diagnosed before he was born with a heart condition at the 12 week scan.  I can remember the moment as it was a young girl doing it and I don’t think she'd done it very much, so she got a bit of a fright as she saw the heart was fluttering. And you could see she didn't know quite what to say so she went off to get somebody.  It turned out that Christopher had a genetic flaw. So, we had bizarre conversations that we know there's a gene flaw and we know the heart isn't working properly but we have no proof to say what that means.

“They could see the heart was misfiring and it was affecting the sodium channels in the heart which was causing quite complex heart problems both in terms of rhythm and rate. There wasn’t a single treatment and he was on a lot of medication.

“Christopher had to go into hospital when things went wrong and that tended to happen when his drugs were being juggled. It would take a week to get him stable, but he never felt anything or suffered or felt any pain.  He was in hospital running around and I had a conversation with him saying ‘Could you look a little bit ill because they're giving us a bed?!’. One day, the consultant came in and looked around and said ‘Where is he?’ at which point Christopher ran up the corridor.  So, he was never really troubled by it.

“The doctors said that later in life the anti-arrhythmia drugs would cause problems with his kidneys and so on.  But they said that ‘Kids can tolerate this one really well, it'll be fine till he's in his teens’. And that was a lovely moment, as I can remember just thinking we can just get on with this. But they always didn’t think, in truth, he'd make it into double figures. 

“After Christopher died, I personally felt the need for something, I was looking for support but there’s wasn’t anything automatically available. I went to another charity about eight months after my son died and that was a great moment, actually sitting in a room with other bereaved parents, but they had a meeting once a month, which was OK, but it was just not what I needed. 

“I made other friends out of that, but I never felt I’d arrived in that place where I felt comfortable enough to talk about things.  It was through a combination of doing charity work and getting to know the Glasgow Children's Hospital Charity that I found what I needed and then providentially Child Bereavement UK started working in Glasgow. If Child Bereavement UK had existed in Glasgow prior to my son dying, there’s no question I’d have been straight through the door; that would have been the perfect scenario.

“I had one-to-one sessions at Child Bereavement UK. There are a number of differences with the support I received from them compared to what I’d experienced before. First and foremost, Child Bereavement UK basically get it and are almost more aware than I was of just how damaged, in a sense, I was. I wasn't unaware of the damage but you're not fully aware of just how damaged you are. 

Child Bereavement UK basically get it. You're very aware of all the assault that has happened to you, but it’s a revelation when you sit down with someone who is talking about it in a way that shows they fully understand how extreme the set of circumstances are and that here is a programme and a mechanism for actually dealing with that.

"You're very aware of all the assault that has happened to you, but it’s a revelation when you sit down with someone who is talking about it in a way that shows they fully understand how extreme the set of circumstances are and that here is a programme and a mechanism for actually dealing with that.

“The biggest change in me has been through the connection with Child Bereavement UK, partly because that programme has been about trying to address issues that have been very targeted to me.  You get the sense there's very much a ‘no one size fits all’, I get the impression that it’s very much driven by the person.  You understand that when you're grieving or mourning, everyone is subject to all these different sets of situations; their life situations, their background, their culture. A whole range of things are going to affect any individual.

People grieve differently, and I can see there are gender stereotypes to a certain extent and there are certainly cultural expectations. My daughter said it quite simply, she said ‘I'd happily watch my mother cry, but I can't stand to see my Dad cry.’

“People grieve differently, and I can see there are gender stereotypes to a certain extent and there are certainly cultural expectations. My daughter said it quite simply, she said ‘I'd happily watch my mother cry, but I can't stand to see my Dad cry.’ 'm not saying it's right or wrong, but you can understand why someone might say that. And all these things are going to affect any individual so it’s good to know that Child Bereavement UK looks at each person case by case, that’s so fundamental.  There will obviously be common patterns but there isn't a single sticking plaster that's going to fix everybody.

“There’s a couple of things people said to me that stuck with me, things I needed to hear. I have repeated this to other people I've met subsequently who have lost a child.  A friend who lost a child 20 years ago said something to me that just gave me a sort of light.  She said ‘There is a peace,’ and no one else was saying that. I was grateful to hear someone in the know say something positive. A friend of my mother, who had lost two children and who was suffering from terminal cancer, left a message that it does get easier.

“I've heard other bereaved parents say ‘It’s awful and it never gets better,’ and I think ‘Why would you say that? That's not going to help anybody.’ So, it's maybe about the mentality of who’s talking to you.  But none of us in this situation are trained, we're just people who are facing it.  The distinction with Child Bereavement UK is that the people talking to me know what they are talking about, that is the huge, huge difference.  They know the distinctions between the trauma and the grief and how to deal with those things.

The biggest change for me has being able to work through the trauma because that was causing all sorts of problems and things I couldn't shake.  I used to get really assaulted by all sorts of things that I found really difficult to deal with, lots of anger and resentment, bitterness and anxiety.  And I had no mechanisms at all to deal with them.

The biggest change for me has being able to work through the trauma because that was causing all sorts of problems and things I couldn't shake.  I couldn't shake what I used to think of as demons (I used to call them cherubs).  I used to get really assaulted by all sorts of things that I found really difficult to deal with, lots of anger and resentment, bitterness and anxiety.  And I had no mechanisms at all to deal with them.

“The work I did with Child Bereavement UK caused those ‘cherubs’ to realise that they don't live with me anymore.  They don't own me the way they did and that has released all sorts of other things. The other really, really big thing was coming to terms with the idea that the mechanism was about taking the lead and that conversation happened a lot. I hated it at first, taking the lead.

“There's a really primal wish that someone would come along and fix it all.  There's obviously something really deep that says ‘This should never have happened and something is very, very wrong and that needs to be fixed.’ What took me a while was to realise that I had to take the decisions about how to deal with the trauma.

During my sessions with Child Bereavement UK there was a build-up of trust, there was patience, persistence and great tenacity.

“During my sessions with Child Bereavement UK there was a build-up of trust, there was patience, persistence and great tenacity. My perception of counselling was that you meet once a week and have an hour and it hasn't been like that. That's where you realise that the people who are doing this get it and that it’s not going to work like that, that it shouldn’t, and it couldn't.”