The 'Club'

People are hardwired for connection. We seek for bonds that provide us with a sense of community, of belonging and support.  Often that presents itself as a shared love for something in particular. People feel connected through their love of a game and rally behind a sporting club. Others enjoy a specific style of music and end up dancing together in concert venues. Others gather in a shared faith that brings people together for prayer.  The list goes on.

These are positive communities that people volunteer to join. Grand finals are cheered for, the encore is applauded and people converse and share about how their God has lifted them up. Friendships are built, memories are made and joy is abounding. 

There are work and school communities where a common purpose brings people together. Your colleagues – whether they are your sort of people or not – are the people you spend a good portion of your week with. 

If you work in a particular occupation you may even find a deeper sense of comraderies. As teachers we might all dread the rainy Friday afternoon lessons at the end of term, predicting the craziness that awaits us. Emergency Department nurses must have to steel themselves for the oncoming injured and inebriated crowds after New Years’ celebrations. Those who work in security careers like the armed forces, where their very life is on the line would feel even stronger links to those colleagues who they must trust implicitly and rely on.

Then there are the communities that no one ever wants to join. Their time together is something that is needed or perhaps forced upon them, but it is not usually spent in excited and animated conversations of delight.

The most well-known of these might be support groups for people facing addiction. Alcoholics, gamblers, drug abusers who never thought they would end up in that room surrounded by others struggling to survive but need to be there.  Here, the achievements are measured in the time spent on track. A ‘One Year’ chip is like climbing a mountain but still a fragile milestone for many. There are setbacks for some, there are challenges and triggers and sometimes, people don’t return. While in their best interests to stay, many have the freedom to leave the group if they choose.

On the 9th January of 2019 – I joined a club. It’s a club that no one wants to join. It’s a club that you are forced into and can never leave. It’s a club with a very clear and specific criteria. I hate it but there’s nothing I can do about it. When I lost my son – I joined a wider community of grievers – some silent, some known. When I lost my son, I joined an even more specific club. It’s the ‘Club’ of bereaved parents and we all agree, it’s like no other.  

While I will always rail against my membership, I absolutely believe that there is an unwritten understanding between people like us. I have seen it in their eyes, I hear it in their recollections about their child and the challenges we all face surrounding our grief.

I am so fortunate to have a strong support network, full of beautiful, compassionate and patient friends and family. People who I love deeply, who I have known for most of my life, who want to help me desperately. I lean on them and ask much of them still when I need support. I also have people in my inner and looser circles who support the legacy projects and events when I put out the call. Those who make an effort to remember Tom, who contribute to the fundraiser, who pick me up on a broken day. I am so grateful to have them in my life.

A different relationship builds between people in this ‘Club’ though. When speaking with another grieving mum, I know they fully grasp the depth of my loss, the guilt of every perceived failure, the struggle to keep going. With parents who have stood by their little one bravely fighting cancer, these parents have also been through the horrendous journey of treatment and we reminisce over side effects, hospital life, ‘scanxiety’, helplessly watching them suffer and then the final agony of watching them die. Losing your child sets you apart.  

Someone on the outside might say; Why go looking for someone else in pain? Why go through it all again and again? Why focus your attention on the past devastation by surrounding yourself with other broken mums and dads? I don’t know why – but it helps.

Whether it is a case of sharing your feelings, which can never feel ‘normal’ is such a relief when you know they have felt the same thing. This validation means you feel less alone. Isolation in your grief, as people around you experience it differently, can make it even harder to comprehend and survive. Perhaps it is the knowledge that you can still be feeling this way 18 months in, or 7 years, or decades down the track and they completely ‘get’ that you haven’t stopped grieving. 

I was talking to a bereaved mum the other day and we were discussing the differences between our expression of grief in comparison to our parents’ generation. Death and grief are still a taboo in many families and modern-day societies, but in the past, it was even more so. Losing a child in years gone by would have been a silenced topic, whispers and averted eyes. Mothers would be expected to put on a mask to shield others from the pain she still carried. Fathers would not be allowed to cry for the child they would not see grow. No ‘Club’ to lean on makes it even harder.

This uncomfortable and forced silence brings with it a festering wound which cannot be seen or healed. If questions about this child are not answered, if memories are not shared, if grief is not expressed, then another horrible consequence follows – the child who has died appears to be forgotten. A child’s death is
hard enough to bear, let alone for it to feel like they were never there.

I so appreciate that I can talk openly with my mum about losing Tom and I think as part of that she has learned to share her grief with me. I keep him alive by sharing him with fellow bereaved parents and they keep their children alive with me.

Since losing Tom, friends and family I know have been diagnosed with brain cancer. Since losing Tom, I have more people talking to me about their friends who have lost children, whether through accident, or illness. People ask me questions as if I am an expert. I am not. I am only an expert on me and on Tom. But if a bereaved parent talks to me – I feel like we learn from each other.

There have been times when rage or guilt or exhaustion or sorrow or fear or any number of emotions have been the focus of my heart at any given time. Bereaved parents can see that and don’t judge. We have all gone through each one (and more) and we see it for what it is.

I think what can be really hard is if you really need someone to blame. You can’t blame your child. Cancer is a disease that is completely uninterested in your sense of injustice – it takes who it wants without apology or thought. Blaming cancer doesn’t get you very far or any satisfaction. So then you think, it must be someone’s fault. You think – it’s the doctors, its’ the drugs, it’s the researchers not working hard enough, it’s the politicians not spending the money on a cure.  But really what you think deep down is that it must be your fault.

When I say this to my friends – they discount it immediately. They are fierce in their assertions that blaming myself is completely wrong. I realise that it might not be rational or accurate, but it doesn’t change my mind. Now if I say the same thing to another bereaved parent… they will accept that I believe this. They will also assure me that it was never my fault, there was nothing that could be done – but they have all felt this worry at some point after losing their child and so they will just let me feel it. It is because I know they have all felt this guilt once – I am more likely to believe their assurances that no fault lies with me. I believe them over my closest supporters. And so I feel the burden ease a little.

So that is what the ‘Club’ provides, I guess. This ‘Club’ we all hate does have an important purpose. It let’s us feel truly understood, validated and closer to normal – when nothing feels like normal is even a possibility. It gives us people who don’t tire from hearing us talk about our child or our grief. This ‘Club’ gives me a sense of community even though I’m not surrounded by them physically. Knowing they’re out there is enough.

So, if you are a bereaved parent and you’ve read this – I hope it helps. We are in this ‘Club’ together and even though we are trapped here – at least we are not alone. I am learning to accept my membership bit by bit.

If you support a bereaved parent and you’ve read this, I pray you don’t feel unappreciated or unvalued because you aren’t in the ‘Club’. I pray you are forever refused admission. Your role and your compassion are very important! There are just many ways grieving people can feel support from different avenues and for different reasons.

So to all the communities that I have been in over my life: my family, workplaces, school/university friends, my sporting teams, my mates, my fellow authors, my oncology world, and every other aspect of connection that I have built – this is just another ‘Club’ I have had to join. And thanks to you all for having my back.