‘Simply sit with me in the dark’

'Please let me know if I can do anything' – the well-meaning phrase that my husband and I heard repeatedly during the darkest days of our lives. It has love at its heart, and is often said in the absence of knowing just what to say. I wish I had known what the 'anything was'. I think I have a better idea now.

In 2017 the unbelievable happened to us. We started the year a happy family with two healthy children, our youngest just turned a year and our eldest, three and half. I was muddling my way through my first year of an educational psychology doctorate and although my mantra was one week at a time, we were by all measures living a good life. In February, my half-brother died suddenly, but this devastation was just an appetiser for what was to come. 

In April, our youngest's development suddenly started to regress. He stopped being able to hold his own weight and could not sit up. After many visits to the GP and A&E, an MRI was suggested. Less than 24 hours later, my husband and I were sat waiting for our son to come round from an 8-hour brain surgery to remove a brain tumour. 

We had been thrown into the world of childhood cancer, which is not for the faint hearted. In fact, it's much worse than you could possibly imagine; a heartbreak endurance contest or a 'let's see how much sleep deprivation and cortisol you can take' competition. I limped onto the end of the first year thanks to the love and support of our family.

Just three months later, after the loss of a friend and my father in law's cancer diagnosis, lightning struck again. The same pattern, the same fruitless visits to the doctor and the same anguish. Our eldest was also diagnosed with cancer, this time a soft tissue tumour in his neck. The worst was yet to come – he would have to be treated in America, while our youngest had his best chances back in the UK. Not only did we have the impossible task of managing a dual cancer diagnosis in two children under the age of five, but we would have to do it in different countries. How were we going to do this? The sense of community and compassion we had from our friends and family was nothing short of incredible. It was months before I cooked any dinner. We were gifted meals, chocolate, hotels, flights, wine and much more. In my already heightened emotional state of fear and exhaustion, the third overriding emotion was undoubtedly love. Our blog, Arthur and Freddie's adventure, helped us to document how we were feeling.

Fast forward to January 2018, and unbelievably the boy's separate chemotherapy schedules finished within hours of each other, this time at the same hospital. They walked out hand in hand. We left the hospital that night hopeful and grateful to be all together. 

This beautiful peace did not last. By May our eldest had relapsed, his insidious cancer had grown straight back – this time in his brain. He was given weeks to live.

Looking for a roadmap

Waiting for and watching your five-year-old slowly decline and die is excruciating emotional torture.  That summer was a slow breakdown of everything, our hearts cracking under the weight of having a piece ripped out. Friends and family continued to flock around, cushioning the nuclear bomb of what cancer does to the brain. Some asked if there was anything they could do, some just gave whatever they had; time, food, care, love, presents. We all coped in different ways at different stages.  Something that really helped me was reading and finding out more. I searched urgently for a road map.  As the darkness seemed to be creeping in, it felt familiar but had such a different shape to any darkness and fear I had experienced before. Amongst the pile of books that a close friend sent me I found the roadmap I was looking for.

As I lay next to our darling fading boy in our bed, in the same place he had been born five years earlier, I inhaled the words of wisdom from Bearing the Unbearable by Dr Joanne Caccitore. Whereas all the other books I had read about grief eventually came upon the possibility that you may lose a child and acknowledged how deeply painful it was, there seemed little hope in them – almost shrugging it off as the worst thing that could possibly happen. Believe me, that really resonated. However, I needed more, some sort of authentic lifeline. That's what Dr Caccitore's book did for me. Joanne writes from her own deeply painful experience of child loss and years of experience in working alongside grieving parents and families. She explained how grief is not something we can push away but something we must gently habituate to, first by turning the heart inward and finding a way to be with the pain with fierce compassion. 

Joanne's words allowed me to find the bravery to literally and figuratively 'get into bed' and find the space inside of me to turn towards my pain. Her words allowed me to sleep every night next to my dying boy for six weeks. They allowed me to wash and dress his frail body when he had passed. They allowed me to speak my truth at his funeral. They allowed me to do more than I can express here.

Being held in our grief

But you cannot sit in the dark alone. 'Can I do anything?' was still a question my husband and I were asked a lot. At this tormenting juncture in our lives, what we needed, and still do sporadically, is for people to be prepared to sit in the dark alongside us. We needed people to witness and hold our grief and not give false platitudes of positivity, or push these deeply uncomfortable and unsettling feelings away. Not everyone has this superpower. Those who have, and those who have used these skills to support us, are heroes of the heart and have enabled so much beautiful hope for our family. I am always humbled by their gift to us. It is everything.

Six years on we still require the bravery to sit in the dark. We enact this in so many ways and alongside so many people. Every year our beautiful boy is memorialised and celebrated at school, where they have named a day after him. His name is said every day by so many that knew him, he is part of our everyday in more ways than you could imagine. He drives my work with children, young people and families. I have now visited Dr Joanne many times for support and education which has bolstered and sustained my work as a trustee at the children's cancer charity, Alice's Arc, and has inspired the development of my own practice – Holding Hearts Psychology. 

My work with Alice's Arc is informed by my values as a psychologist, which are about living authentically, facilitating coproduction and supporting people to recognise the capacity and resilience they have in their lives. Together with the other trustees and families we have developed a unique participatory model for the charity which we call 'The Arcs'. This model allows each family to support a greater cause under the name of their child and do something meaningful, collaborative and hopeful in their name. My own son's arc was one of the first, and to date we have raised over £100,000 in his name.

I also espouse the fierce compassion of Dr Jo and run support groups within the charity to support families 'bare the unbearable'. I have visited Dr Jo's carefarm in Arizona numerous times now to learn about how she educates and empowers grieving families to find hope beyond the unbearable and eventually find meaning and purpose. My next step is to work towards collaboratively creating this space in the UK with my knowledge and skills as a practitioner psychologist and my lived experiences. 

I am proudly passionate about working alongside grieving families. It's a tragic privilege. I will end with a quote that says what I am trying to convey in more elegant simplicity:

Let everything happen to you

Beauty and Terror

Just Keep Going

No Feeling is Final

Rainer Maria Rilke