Some 604,000 people died in 2020, the highest number in a century. One of those was Fred, my 14-year-old son.

When Covid-19 began appearing on the news, Fred was six months into his treatment for acute lymphoblastic leukaemia. His cancer had not responded to chemotherapy, and he was waiting to receive Car T Cell therapy at Great Ormond Street Hospital. 

While our friends panicked over loo roll and wrestled with Joe Wicks and fronted adverbials, we tried to make sense of how these lockdown rules could possibly apply to us.  We ran through the hospital equivalent of the fox, the chicken and the bag of grain as we tried to work out how we could be a family when our younger son was no longer allowed in the hospital. The visitors, the communal areas, the school teachers, the youth workers, all no longer allowed on the ward.  Even the parents’ accommodation at the hospital closed.

Fred died in ICU on 3 May last year.

Ten people were allowed to attend an outdoor burial in our village churchyard.  However, people lined the streets as his motorbike hearse drove through the village.  His little brother and a group of his friends rode their bikes behind him, and messages and memories were hung on the tree outside our house.

Food was left on our doorstep, we were overwhelmed with cards, but people had to watch from afar. Grief is a lonely place at the best of times, but even more so when it’s illegal for people to hug you.

It’s been hardest on our son. We are well aware that in another life, lockdown would have consisted of arguments, hijinks and tension. Instead, he has had a crash course in how to exist without his partner in crime. He can’t spend time with friends, his football team, schoolmates, just his heartbroken parents. Needless to say, we have given up on screen time limits for the time being.

At times it has seemed jarring, with the world looking in the opposite direction to our grief. Sometimes it feels that his death has become lost in the crowd. The public grief for Captain Tom was undoubtedly well meant, but he wasn’t a symbol for our loss. He didn’t represent our energetic, boisterous child who would never get the chance to amass such accolades, or to see his achievements celebrated. The thousands of deaths that were reported and mourned didn’t include our son. 

In reality, grief is not a competitive sport. Although the wounds and scars that result may differ for everyone, pain is pain. Where there is love, there is grief, and it can’t be ranked. Every death, at whatever age, should be one of dignity and love. 

Like an exposed nerve, we know what death is. We know what intubation looks like. We sat with our son in ICU as he died, we held his hand and stroked his head. When people talk of loved ones dying without their family, or an inadequate iPad call, we know exactly what that means, and what has been taken away. 

For all our isolation, Covid has made our grief more bearable. All the clocks stopped when Fred died, but we weren’t forced to watch the world carry on as normal with their happy carefree lives. All of those events in the calendar which will soon become markers of our loss, didn’t happen. His favourite places locked their doors. Christmas was miserable for everyone. 

We have been forced to retreat and rest, too. We have been able to hold our grief quietly and give it attention, rather than rushing back to life at full speed. Secretly, I don’t want lockdown to end.

Like everyone, we have walked. We have walked through woods, over fields, along canals, around reservoirs. There is something incredibly reassuring about putting one foot in front of the other and fresh air really does heal the soul. In the initial months after his death, meeting one other person for outdoor exercise was my salvation. I can talk more freely when I’m walking, when I don’t have to look someone in the eye, so I had a long line of friends to meet and I would repeat my story to each one. I didn’t need fixing, distracting or cheering up, all I needed was someone to walk beside me and listen.

As a nation, we’re not very good at grief – not out of unkindness, but mainly out of panic and awkwardness. “I don’t know what to say” is usually an excuse for saying nothing at all, which feels horrible. 

However, Covid has washed away our normal routines and habits. In times like these you realise that some people come to you on the tides, and some are tied with deep sea cables; steadfast and resolute. These are the people who keep turning up, messaging, telling you that they are still there, that you haven’t been forgotten. There are now millions of people who need the same.

My darling boy was a force of nature, and his death caused such a fundamental disturbance in the force that the world will always remember before Fred and after Fred, even if they don’t know it. However, there will come a time when we all emerge, blinking into the sun, and we will have to learn to grieve all over again. As everyone else goes back to their lives, we will learn to build a new life around our loss. We will not be alone.

Louise Dillon Bennett set up Fred Bennett’s Don’t Look Down Fund to raise money for research into ALL. She writes about her experience at dontlookdown.blog.

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