Jessica’s son, Harry, who was autistic, died aged 19 from cancer. Jessica talks about Harry’s death and the support that Child Bereavement UK in Milton Keynes gave Jessica’s daughter, who was fifteen when Harry died.

“It was on Boxing Day that Harry, who was then fifteen, first became ill. Within a couple of hours, our lives had changed. I said to my husband “It just doesn’t feel right. I’m going to take Harry to the hospital”’. We didn’t come back as a family for a long time.”

We left my daughter, who was nine, with her grandparents and I thought: “Let’s not tell her yet, let’s not bring her to the hospital”. She told us a while later that that was the hardest thing. She said: “Don’t do that to me again, you’ve got to tell me what’s happening, I’d rather be involved.”

We had an extraordinary four and a half years with Harry. We went from being told within three months of his diagnosis that Harry was terminal and would die imminently, to a different doctor telling us he’d been cured by the chemo, to being told: “Sorry we were wrong, but we’ll try”’. By October he got the all clear, but then by the following January he was terminal.

As a parent your main job is to look after your children; to keep them safe, healthy and hopefully happy. I was very good at that, I loved being a mum. But when Harry became ill our whole world changed and we were fighting to save his life.

As a parent your main job is to look after your children; to keep them safe, healthy and hopefully happy. I feel I was good at that, I loved and love being a mum. But when Harry became ill our whole world changed, because we were fighting to save his life.

We tried very hard to make sure that our daughter was considered and at the centre of our lives but on reflection it was never going to be easy. She was at primary school when Harry was first diagnosed and then later at secondary, studying for her GCSEs. A few of her friends knew Harry was ill. Yet often she came home to a hospital situation.

We tried very hard to make sure that our daughter was considered and at the centre of our lives but on reflection it was never going to be easy. She was at primary school when Harry was first diagnosed and then later at secondary, studying for her GCSEs. A few of her friends knew Harry was ill. Yet often she came home to a hospital situation.

The complication was that Harry was autistic; verbal, happy, lovely, sociable, very loved, but with additional needs. He didn’t understand what was happening. He knew he had cancer, he knew his aunt had died of cancer two weeks before his diagnosis, but we told him we were fighting, that he would be okay. He didn’t want to die and didn’t want to know anything other than positivity. However, we did tell our daughter as we learned quite early on that it was important, even though she was young and we wanted to protect her, to tell her the truth.

This often meant she knew more than Harry who didn’t really understand the seriousness of the situation. It was a very unusual situation in which we were trying to keep Harry alive and having to tell our daughter things that went against a parent’s instinct to protect children from difficult things.

We thought every Christmas would be the last. It was becoming tiring, trying to appreciate every moment, but we did appreciate that Christmas. Harry began to go downhill, and he started sleeping upstairs with us. Then he couldn’t go upstairs so we set up a bed in the kitchen; I managed to get a double hospital bed so I could lie next to him.

For the last couple of weeks, my husband slept on the floor in the kitchen so that we were all together. Our daughter was there right at the end. We sat there, on the end of Harry’s bed, and held his hands and stroked his head. She held his hands and although I didn’t see her do it, she slipped his watch off, put it on and has never taken it off. She saw it all, which was such a lot to deal with.

I couldn’t save Harry and then I’d look at my daughter and think: ‘‘Oh my Goodness! What on earth is going to come of this?’. 

I couldn’t save Harry and then I’d look at my daughter and think: “Oh my Goodness! What on earth is going to come of this?”. She’s such a lovely girl, so grounded but quite self-contained, which I think may be a result of everything she’s gone through.

 I thought ‘How am I going to make sure that she doesn’t become a totally mucked up adult?'.

My daughter had some counselling at primary school and that was good, but I thought: “How am I going to make sure that she doesn’t become a totally mucked up adult?”. So, I suggested about three months after Harry died that we should look for some other counselling, which she was open to. I felt I only had one chance to get it right as she isn’t a talker. I did a bit of research and then Harry’s doctor recommended Child Bereavement UK. When I brought my daughter along for the first appointment, we were both so nervous. We didn’t do family sessions as I wanted her to have something for herself. I’m good at talking and I’m good at crying but she isn’t that way inclined.

I felt guilty that my daughter’s brother was autistic and then died. I thought that maybe she’d not had the sort of jovial, bickering, bantering, sharing sibling relationship that other people have. However, she started talking about her memories of Harry and how they used to put notes under each other’s door - I didn’t know any of that. I felt a huge sense of guilt leave me and it was really nice to see her talking about her brother in a very knowing way. There was stuff that went on between them about which I had no idea.

Probably the defining moment was a session in which we talked about the Languages of Love. At first, I thought it sounded a bit off the wall, but I think it’s changed my approach to life. The Languages of Love are the different ways that we as individuals express our love and our feelings. We both had to answer a series of questions and then looked at our scores. Not surprisingly I came out as somebody who likes to talk, to touch and who is quite expressive. So, because my daughter wasn’t hugging me or talking to me, I was thinking: “I’m doing such a bad job”.

My daughter's result was completely different. She likes acts of kindness such as being dropped off at her friends, bought some flowers, or just considered, but she doesn’t like touch particularly. We came out of the sessions and I thought: “You know what, I think everything is going to be OK”. I’d thought that because she wasn’t letting me talk to her, to cuddle her or sit next to her that I was failing her, that she was going down a path I didn’t understand. That session helped me understand we both just approach the world differently; just because she’s my child doesn’t mean that she has to operate and function like I do. She learned about me too and after that session she started hugging me.

I think the way you and your family need to be supported is very personal. My husband and I have approached our grief very differently. I don’t feel any sense of companionship in grief, even though he’s gone through the same thing as me. Equally I can’t pretend to fully know what my daughter is going through.

I feel a great sense of relief that we found Child Bereavement UK. I feel I can say to myself: ‘You did your best; you found your daughter some support. You couldn’t save your son, but you’ve done what you can to hopefully pave the way for my daughter's future.' 

I feel a great sense of relief that we found Child Bereavement UK. I feel I can say to myself: “You did your best; you found your daughter some support. You couldn’t save your son, but you’ve done what you can to hopefully pave the way for my daughter's future.”

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