‘This will be our final session.’ This is what I heard just a couple of weeks after my sister died. I was ten years old.
My sister had a disability for the whole of her life, so the entirety of my childhood. Because of this, I was entered into therapy for children with a disabled sibling, but she was happy, and it felt unnecessary at the time. I had seen the same ‘person’ throughout primary school without fully understanding why I would be taken out of class to speak to someone. The older I became, the more I understood it was because of her, but the struggle was never then. The sessions felt like fun. When it is all you know, a child cannot recognize the impact having a sibling with a disability has on development and childhood. I did not understand what was happening or how losing her would affect me. Growing up, I loved my sister, and the only inconvenience she posed was her allergy to latex, which meant I could not bring my balloon back from McDonald’s.
But one day, she became sick enough that there was no return; she came home from her hospice, and all we could do was make her comfortable. I am filled with regret from those days; often, I felt like I did not see her enough or love her enough. Losing my sister was the most painful experience of my life; almost immediately after, my therapist, who was meant to be there to hear me and listen when I spoke about how it felt, left me. I had never felt more abandoned or alone; I was a child, and my parents had lost their daughter. This meant the focus was on them because the trauma was considered more significant, and the subject was too taboo for friends to be emotional support. We were in year 7.
I was forced to cope by suppressing my emotions. I was filled with grief and guilt. I understood that her job was over, but I did not understand why my therapist left when I needed the most support. My final session was the first time I cried in therapy through sadness and confusion. I say this not as an attempt at gaining sympathy or at all trying to equate my experience to someone else’s, but as an identification that children are too often overlooked after a passing of a close family member.
Children are often overlooked or assumed not to need the same amount of focus as the parents, but children do not understand. I am fortunate enough that Chase Hospice, where we spent a lot of time and where I grew up from the weekend trips, allowed me to paint a stone in her memory and have one last visit. It must be recognized that the child’s upbringing is often in the same place, the death brings about the loss of their sibling and the failure of the life they knew. I needed to grieve the comforts I had developed from growing up in a hospice as a sibling and not a patient. At a young age, I didn’t understand why I couldn’t go back because it felt like my place as well as hers. An allowance was made for my family; she was supposed to receive a Make-a-Wish before she died, so we were offered a trip to Disney in her memory. At ten years old, you don’t understand that this is the reason: you’re not taught about death or how to grieve. Naturally, we shelter our children; death is for adults.
I recently had a conversation with a family friend about this topic. I told him that I was struggling with no help. I felt like collateral damage, and he admitted, regretfully, that they never thought about its impact on me. I had seen the pain of my parents and learned to mask my feelings, thinking it was unnecessary. It has produced long-term emotional dysregulation, but it has never been assessed. There is no grief period in England, and unlike other countries where they weep for days and get it out, we have a day. Then emotions are taboo, and strength is shown in feeling nothing.
According to Child-Bereavement UK, 1 in 29 5-16-year-olds has experienced the death of a parent or sibling. This amounts to at least one child experiencing grief in each class. Therefore, as a society, we should equip our children with empathy and knowledge of supporting their peers. It is easy to avoid a child known to be grieving or completely exclude the loss from the conversation. This is because the subject is feared and considered best packed up and shipped to the furthest part of the brain.
The avoidance and lack of understanding in all young people around grief is not their fault. If you haven’t been in the position, it feels impossible to know the best method. Often, the children who have experienced a death of a loved one will feel lonely and not know what to do, but offering space for them to talk about their loved one would help a lot. Identifying that they are not alone and allowing them to continue without feeling awkward will give them the support they need to comfortably come to terms with what has happened. This is because the loss is still actual: they were here yesterday and gone the next. The person existed and affected their life that cannot be ignored or neglected. We want to speak about them and remember them even when it hurts.
I know that it would have been more of a comfort to have her mentioned and not speak about her than to feel like I wasn’t able to speak about her at all. 26% of adults wish their friends would say the one they lost; understandably, this is a low number, but it is still a fair amount of people. Therefore, it is essential to understand the grieving process and recognize that it is different for everyone; we should put more effort into understanding how people need to come to terms with their loss. This was one of the most impactful events of my life, yet I have had close friends for over five years who only recently found out about her. There is no doubt that this is because growing up with death is not something you share, as it was an uncomfortable topic. It meant I learned to internalize most of my emotions in my life because I never learned to share how I felt when I felt the worst.
Children suffer every day, and as adults, we are required to recognize the impact it is having and will have if children in grief are not supported correctly. A child may play and appear to have fun, but it does not mean they are not hurting or need a conversation. Playing and smiling does not mean there is no more grief. Few studies have been done on the ability to regulate negative emotions in children compared to adults, which is shown through the lack of recent data. This itself demonstrates the lack of attention shown to children regarding their feelings. Furthermore, the few conducted show that their prefrontal systems are not fully developed enough to decrease a current sense. Therefore, a child’s grief could and should be considered more significant as they can scientifically not dampen negative emotions like an adult could.
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