Ten things parents say about grief

Grief is a different experience for everyone, but a parent’s loss is one which is unique and can be especially isolating. We worked with mum Sarah, who experienced the death of two of her children to cancer, to come up with ten things she’s learned as a bereaved parent.

1. It’s different with cancer

While your child goes through treatment, you live in changing states of anxiety, hope, fortitude, resolve and despair for months or years. Lots of parents say that they were just getting through and running on adrenaline for all this time. This can leave you feeling utterly exhausted before you even begin – and so your grief can differ from what you or others might expect.

Many parents are able to brace themselves for their child’s death or start grieving beforehand – and some feel a sense of relief when it finally happens. The main thing is not to judge yourself against anyone else. There really is no normal when it comes to grief – anything you feel, or don’t feel, is natural.

During their illness, you’re likely to have had a strong network with the hospital, charities and hospice rallying round you. Often afterwards, when you’re back in your home environment, this can feel like a great loss. You can’t simply pick up the threads of your life because they aren’t there anymore. At this point, it’s extremely important to talk to people who understand. There are bereavement organisations that can help but often the best thing you can do is to talk to other parents who have been through it. You aren’t alone.

It’s a different kettle of fish losing a child to cancer. So much of your life is taken over by illness and treatment. You channel so much energy into getting them through that when they die, you’ve lost part of your identity because that’s what you’ve done for so long. Your ill child is your absolute focus and then you’re left with a great void.

Sarah

2. It helps to talk to other parents who’ve been through it

We’re not saying that all bereaved parents can really understand what you’ve been through, but they will come closer to it than anyone else. They’ll know that it’s different with cancer. They’ll get that you might desperately want to talk about your son and daughter, while others might avoid it. They’ll understand the shockwave it can have on your family and your life.

Sharing what you’re going through can make this time a little bit more manageable. You can join our private Facebook group for bereaved parents and carers where you’ll find positive support and shared experiences. Or get in touch to see whether there’s anything going on in your area.

The best support is other parents, so you don’t feel isolated and alone. They provide the best kind of support for each other.

Sarah

3. Bereaved parents wear masks

Whether they realise they’re doing it or not, many parents conceal the pain that they’re in. They talk about putting on another ‘head’ or ‘face’ when they step outside their door. This is quite a normal way of coping with what’s happened. Also, we’re conditioned not to burden others with our feelings so if you find the words “I’m fine” slipping out a lot, it’s understandable.

It’s important is not to bury your feelings though. If you really aren’t feeling fine and you’re with someone who’ll understand, say so. You could also try to notice your feelings and thoughts as they come before letting them go again. This will get easier as time goes on.

You put on a mask for the outside world but underneath the mask it’s still real and hurts.

Sarah

4. Grief is an invisible ailment

The rest of the world seems to carry on as if nothing ever happened. Meanwhile, you have to keep interacting with it, whilst carrying an overwhelming sadness with you. If you had a broken leg, people might change how they communicate with you – acknowledge your ailment or ask if you need some help.

But there is no badge for grief and this can be infuriating. Simple questions such as ‘how’s your day going?’ could leave you feeling angered or distraught. You might snap, or feel like you need to get out of a situation or environment quickly. It’s ok. You can only do what you can do at this time. Be patient with yourself and seek support if it’s all getting too much.

The Victorians had it right when they wore a black armband to show they were grieving. Inside you are absolutely crippled but outside there’s nothing to show it. People can’t see it and are being pleasant and you just want to tell them to shut up. You’re carrying that pain around with you but no one can see it. Everyone talks about birth and babies but no one talks about dying – we need to.

Sarah

5. Anything you feel is normal… even if you feel you aren’t coping

We don’t want to tiptoe around it – some parents feel that they simply can’t go on without their child. If you feel this way, try reading what other parents say helps. It could be that you turn to your faith, seek professional help, pour yourself into voluntary work, go on holiday, try out a bereavement group or spend time with your other children. Many parents who are further down this road say you will learn to cope over time. That’s not to say that you feel the loss any less but you will grow around your grief.

Likewise, there is nothing wrong with you if you feel that you’re coping well or if you don’t feel anything at all. It can depend on the way things were during your child’s illness. For some there is little time between diagnosis and death, whereas others have a long time to think about it. Feeling that your grieving begins before your child has died is common to a lot of parents.

If you’re struggling, call the Samaritans on 116 123 and speak to someone now. Sometimes a listening ear can really help.

It hurts like hell. You do feel like you’re falling apart but that’s normal. I sometimes thought that I just wanted to be with them. But you won’t be in this terribly dark place forever.

Sarah

6. Grief doesn’t diminish, you build your life around it

In those first weeks or months, it’s hard to escape your feelings of loss. They’re there first thing when you wake up, they’re at the back of your mind as you go about your day, and they’re there in your heart when you go to bed at night. It’s hard to imagine you will ever feel any different. If you imagine your life as a circle, when your child dies your life becomes completely shaded by your grief. Many people believe that, over time, their grief will shrink and become a smaller part of their life.

But something else happens. As time goes by, your life grows around your grief. You slowly find yourself taking pleasure in things and feeling enthusiasm for life again. It’s not that you “get over” it or forget your child. It’s more that their life and death become part of who you are. Most days you live in the sunny part of your life but there are still times when something can remind you of your loss and you find yourself back in the shade for a while.

As time goes on, you build more around their death. Grief is like an onion – you build more layers of your life around the core of your grief. The grief is always there in the middle and it’s intrinsic to who you are.

Sarah

7. Grief hits in all sorts of places

At first, you might feel a constant gap there. Everyday things like going to the supermarket or having one less place to set at the dinner table mean that your thoughts are constantly with your child. As time goes by, strong feelings of loss can creep up on you. You might find yourself going about your day when a song comes on the radio, or a memory pops into your mind.

You can never really avoid this but the pain will ease. Memories could start to feel happy and comforting, as well as painful. You’ll reach certain milestones, like walking past a certain place without crying. It’s something that you learn to get used to, rather than get over.

Once I abandoned a shopping trolley in Tescos. I kept seeing stuff in every aisle that reminded me of my child. Like Coco Pops. Stuff I didn’t need to buy anymore. And I just thought, I can’t do this. I was hurting too much.

Sarah

8. You might end up comforting others

Dealing with other people’s anxieties and grief can be incredibly tough. It can range from actively supporting other family members or close friends who are struggling, to trying to talk with people without making them feel uncomfortable. Unfortunately, the latter never really goes away. The loss of your child will always be a part of you. Years later, parents still struggle to answer questions like, “how many children do you have?” partially for fear of creating awkwardness. One bereaved mum said, “I can really bring a dinner party down if I want to!”.

Again, it’s time that makes the difference. At the moment, it might feel very emotional to talk about your child and you might feel guilty for becoming upset mid-conversation. But as you become more able to talk about it, you might feel far less apologetic. This is only right – you are not responsible for other people’s reactions. If they feel inadequate in responding, it’s not your fault and you shouldn’t carry the burden of having to make everyone feel ok.

As for being there for others through their grief – it’s natural to help each other as a family if you have a partner or other children. But make sure you get the support you need as an individual too. If someone else is putting their feelings of loss onto you, there’s no shame in saying that you can’t help them right now. You might want to direct them to one of these organisations if they need to talk to someone.

I used to go out and about and there were always people who didn’t know and that’s hideous. You have to explain and you have to make them feel ok because they’re shocked and they feel bad that they didn’t know and they’ve said something now.

9. There is no timetable

Grief does not begin with your child dying and get better after a set amount of time. Nor do you go through a series of stages in a particular order. As you’ll know, it just doesn’t work like that. Year two might be harder than year one. Coming to terms with what’s happened can take a long time and it can continue to stay with you for the rest of your life.

If you receive insensitive comments from other people, remember that this is probably because they are very unlikely to have experienced the sort of grief that you’re going through. It’s just impossible for some people to comprehend. What you decide to do is up to you – some parents have ended friendships with people who pressure them to ‘get over it’ or can’t understand why things aren’t getting back to normal. Or you might want to show them this section so they can get a better understanding of the realities of life after losing a child.

Society tends to put a time limit on grief and you feel like people are thinking “aren’t you back to normal yet?” – so there’s pressure not to talk about your child and then you feel like you’re failing.

Sarah

10. It doesn’t get easier but you learn to live again

Parents say that the loss never really ‘heals’ – life just becomes more manageable. You’ll pass certain milestones along the way that show that your grief is changing over time. You will find ways to live with it. But there’s no right or wrong way to get there.