Denise’s niece, Rosie, died due to neuroblastoma in January 2019, aged seven. Denise, who is a paediatric nurse, talks about how she was supported by Child Bereavement UK in Glasgow.

Rosie was diagnosed when she was fifteen months old. She managed to do quite well after the first lot of treatment but then relapsed around two years after her first period of being unwell. Then she was better for a very short period, but it came back with a vengeance.

Everyone loves their family and thinks they’re the best, but she was just one of the most unique children. If you went into the hospital and met anyone who knew her, they’d just say she was fabulous; she was just such a special kid.

I found out about Child Bereavement UK because I’m a paediatric nurse at Glasgow Children’s Hospital. What makes it a wee bit more challenging is that is where my niece was treated. Initially, I didn’t think I needed support, I thought I was going to be absolutely fine. But then I suddenly thought: ‘I can’t do this, it’s just too exhausting’.

After Rosie died, I had to go straight back to work as I’m doing a course at the moment, so I didn’t have time off. Something had to give, so I just decided to phone up and make an appointment to give myself some time for me. I needed the freedom to talk as well, I suppose, because you don’t want to say things to people that might upset them.

When I made the call, I felt totally fed up, exhausted and a bit lost. I was trying to do the work-related course, I’d also helped to care for Rosie, palliatively, at the end and I had looked after her with her family. I had totally lost my confidence, which I thought was a really strange thing, but when I spoke to Child Bereavement UK, they said it was a really common way to feel.

You think: ‘Did you do all the things right by her?’  I had to guide her family to make some decisions at the end.

I just didn’t know or have a great grasp of what my identity was at the end because I knew exactly what I was doing before but now I didn’t know what was wrong with me. Coming to Child Bereavement UK was a good place to start, to speak to someone who was independent of it all.

 The best thing about coming to Child Bereavement UK; the freedom to talk and be open and honest in a safe environment. I didn’t feel judged and that really helped.

I came to Child Bereavement UK; initially I didn’t know how I was going to find it and how it was going to go. However, the freedom to talk about Rosie was fantastic. People ask you how you are, but they don’t really want to know how you are, not the rawness of it, because it’s horrific. And that was the best thing; the freedom to talk and be open and honest in a safe environment. I didn’t feel judged and that really helped.

It’s never going to be the same, the best person you could ever meet is not here and there’s just no fun anymore. You can pretend to have fun but it’s not really fun, you just miss her so much. While she was unwell people would say you need to make time for yourself. But I started saying to my friends, at the moment, there’s nowhere else I’d rather be because soon I’m going to have lots of free time, and I don’t know what I’m going to do with myself. I’m so glad I spent as much time as I did with her, but it makes it so much more obvious that she’s not here.

She was the person who made you feel better when things were bad, so things are really bad now and she’s not here to make us feel better.

There were some horrific times when she was in such pain and discomfort - that haunts me. I try to push it to the back of my head but now and again I just think: ‘Oh my God, what did she go through?’

The support from Child Bereavement UK makes me think about the positive rather than the negative. We talk about what was really good at the time, an appreciative approach: ‘That happened but this happened too and that was good.'

The support from Child Bereavement UK makes me think about the positive rather than the negative. We talk about what was really good at the time, an appreciative approach: ‘That happened but this happened too and that was good. That was awful but try not to fixate on that awful thing’. I told my practitioner that certain episodes haunt me. Rosie must have been in so much pain yet, the week before she passed away, she was dancing at my house. She said, ‘Think about how she was dancing.’

When I go for my support it’s like my ‘Rosie Day’, if that makes sense. It’s a positive and a negative, I feel a physical pain when I come and think about her, it’s a chance to take off that coat of ‘I’m OK’ and I can truly feel the way I feel - the good stuff and the bad stuff.

When I go for support it’s like my ‘Rosie Day’, if that makes sense. It’s a positive and a negative, I feel a physical pain when I come and think about her, it’s a chance to take off that coat of ‘I’m OK’ and I can truly feel the way I feel; that’s the good stuff and the bad stuff.

If you think you’re the person who supports others, if you don’t look after yourself you won’t be able to look after anyone else.

I would say to another bereaved person who was wondering whether they should get support: ‘If you think it, do it.’ I’m one of life’s copers and I didn’t think I needed it until there was just one day when I thought: ‘I can’t do this anymore’. If you think you’re the person who supports others, if you don’t look after yourself you won’t be able to look after anyone else. I thought if I don’t start doing something for myself, I’m not going to be able to support my family the way I want to.

Before I came to Child Bereavement UK there was a dark cloud over me constantly, but now the sun’s just poking through. Without coming for support, I don’t think that would have happened. 

Before I came to Child Bereavement UK there was a dark cloud over me constantly, but now the sun’s just poking through. Without coming for support, I don’t think that would have happened.

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