Almost every family we support describe how their world changed in the blink of an eye when their child acquired a brain injury, and how they yearn for normality. It struck me in these unprecedented times, with everyone now facing change to their normality, how much better we can start to empathise with families affected by childhood acquired brain injury through our own experiences of the pandemic, and perhaps learn how to cope better by the examples of the families affected by ABI.
Sadly, it is true, when a family experience childhood acquired brain injury (ABI), their world does indeed turn upside down without notice. That is exactly what happened to every family here in the UK when our Prime Minister made the announcement about working from home, and social distancing; all of a sudden our normal daily life as we knew it changed in an instant.
For most of the world we had the advantage of a little foresight into the potential issues that lay ahead and the enormity of what was happening with the pandemic; for so many families affected by ABI this forewarning was just not there. In an instant, without prior notice in most cases, family’s worlds are changed forever. The “normal” carefree life they had experienced before their child’s ABI had gone.
Suddenly a family is faced with traumatic medical experiences, with lots of clinical terms, jargon and new language that they had never heard before. It is the start of coming to terms with their changed circumstances and is often accompanied by anger and grief for what has been lost. Once that initial acute phase has passed families have to adjust to their new “normal” whilst longing to return to the life they had before. In some cases, families face denial about the reality of their situation and coming to terms with it can be very difficult.
Adjusting to a new normality and overcoming the grief and loss of how things were beforehand is the next stage. Often the changes are not ones they would normally want to include in their lives, but circumstances have changed, and they now have no alternative but to make the most of what they have.
As the adjustment phase is completed, a family’s new normality comes into being. This does not mean that they are in a situation they have chosen, but one they have come to terms with. As they settle into the new normality, they start to find the positives and make the most of their changed circumstances, accepting that the situation itself is completely out of their control. However, what is truly within their control, is their attitude to their changed way of life; we know that so many families and indeed children and young people who are affected by childhood ABI have an incredible inner strength to help them cope. Their resilience to move forward inspires us all at the Child Brian Injury Trust and keeps us focussed on our objectives and to ensure that our purpose continues to put families at the centre of all we do.
So as we look at that journey how similar is our experience and perspective of the COVID- 19 pandemic?
Each of us were suddenly presented with traumatic stories of illness and tragedy. We had the benefit of gradually coming to terms with the enormity of the situation and adjusting to the new way of life, new language and vocabulary – Coronavirus, lockdown, social distancing. We too have had to adjust to a new enforced normal, and at the same time grieve for the way of life that has been taken away.
Perhaps you should re-read the text and think about is terms in the pandemic rather than childhood ABI, and see the similarities – it may help you understand the plight of families better, and maybe have greater empathy for their journey.
As we move towards an end to the current restrictions in place across the country, perhaps we should follow the example of families affected by ABI and adjust to our new world as stoically as they do.