Sara and her children were supported by Child Bereavement UK in Milton Keynes after her husband, Ben, died from a brain tumour.

My husband Ben was a very intelligent, fit, athletic person who loved his children very much and loved sport. We were devastated when he was diagnosed with a brain tumour, from which he died ten years later. 

Over those ten years, he gradually deteriorated as the tumour got bigger. He had more health problems, including epilepsy, and our family life basically revolved around his illness. He came first and we had to fit in. 

Eventually he was bedridden; I became his full-time carer and members of our family had to move in to help care for the children  In his last year, Ben wasn’t able to speak at all, so we didn’t know what he was thinking, what he knew or what he didn’t know. It was very hard. 

I remember my daughter, who was four when he was diagnosed, saying that she never remembered Daddy being well. There was always something, from having the disabled badge and not being able to go swimming because of his epilepsy, to being away when he was in hospital. There were lots of small things that on a regular basis had an impact. Towards the end of his life he was in and out of hospital through different illnesses. 

I had to maintain a level of normality for the children, because I wanted them to have a normal, happy upbringing. I had good family and friends, but it was hard. You just get on with it because there isn’t a choice. I think it’s only now, when I look back, that I think, yes, it was hard; I’m not sure how I coped.

When he died, for me, it was relief. It wasn’t going to get better, and the person who died wasn’t my husband. It was time for him to go and to be without pain. At the time we were just existing, and we needed to look forward - the children needed to live. I felt guilty for thinking that, but it was a relief that he wasn’t in pain anymore and that we could look to the future. 

One of the hardest things was telling the children that their dad had died; that was tough.

One of the hardest things was telling the children that their dad had died; that was tough. I decided I wanted to spend as much time with Ben as possible, so I spent some nights at the hospice and my parents looked after the children. I arrived at my parent’s house to drop them off, where I received a phone call to say that he had gone. I was disappointed as I’d wanted to be with him when he died, but it wasn’t possible.

I decided not to tell the children there and then. I went to the hospice to see Ben and say my goodbyes. Then, the following morning I went to my parent’s house, sat down, and told them that their Daddy had gone. There was no easy way to say it, so I said it straight. They both cried, but it’s really hard, because you just don’t know what to do. I had no experience of it and nor had my family. 

I knew that how I dealt with their grief, if I got it wrong, would affect their adulthood, and I didn’t want that. 

I felt totally on my own. I was grieving and I had two children who were grieving too. My grief had to go to the back of the queue because my priority was making sure my children were OK. I knew that how I dealt with their grief, if I got it wrong, would affect their adulthood, and I didn’t want that. But I knew I wasn’t coping; I didn’t know if I was saying the right things, doing the right things. It wasn’t getting better and I needed help.

Our doctor put us in touch with Child Bereavement UK, where both Charlie and James attended the Group for Young People. They felt comfortable there; they didn’t have to explain their situation – there were no awkward questions and they knew the people that they were with were also bereaved. If people wanted to talk about their bereavement they could if they felt comfortable, and if they didn’t, then that was fine too. 

Getting support allowed us to start functioning as a family and made life easier. We were able to start having fun again, and just start living as a family.

Getting support allowed us to start functioning as a family and made life easier. We were able to start having fun again, and just start living as a family. I think you don’t go through an experience like this without growing and changing, and your perspective on life is very different – it’s to live for now, enjoy it and have fun because you don’t know what’s round the corner.

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