When Grief Equals Love

Chapter 4: Life Lessons

In some ways I was aware that our appreciation of life had been changed and was even enhanced by what was happening to us. Our world had caved in and yet our grief-stricken state allowed us to appreciate the smallest things, the truest friends and the unconditional love of our family.

Some friendships didn’t stay the distance and others proved to be strong. Throughout my grief I was aware of the privilege I felt in looking after Harry and I realised how much we were all learning from him. I have always had a huge awareness of the fragility of life – maybe due to my miscarried and stillborn siblings. As a teenager I read war poetry and prose avidly, Testament of Youth and Primo Levi from cover to cover, and had a fascination with illness and death rather than a fear of it.

I remember when I was fourteen, one of my parents' closest friends, Lionel, had suffered a slow and early death in his fifties from Alzheimer’s. On the day of his funeral, I asked his widow Gwen if I could stay with her that night. I realised that she was going to be alone and desperately wanted to be with her. Thank heaven my parents allowed me, and that evening we sat up, the pair of us crying, laughing and talking about life, death, the universe, the bigger picture, and also about Gwen’s son who had died years before. How she would never recover from her son’s death and how even her husband’s death could not hurt her in the same way although they had been happily married for years.

I suppose that was my first hint of the pain of the death of a child, straight from the mother’s mouth, yet here she was now, on her husband’s funeral day, allowing me, a fourteen-year-old, to be alongside her and share it with her. It was a night I would never forget.

I have also always believed that nature will continue to outwit us and this has never been more evident than in 2020 with the advent of Covid19. We live in a society where so many people are driven by money and status, people don’t have time for death anymore; it is seen as failure, rather than part of life. The unthinkable.

Cures for disease are quite rightly being sought, but there is scant care for those who are long-term, terminally ill, those who can’t be cured. That is left to the many families like us to administer behind closed doors, at least that is how it can seem when you are in that position. People are frightened of this horror amongst them, especially when it is a child who is facing their mortality. Death is hidden now in the UK (with the exception of Ireland) – even pre-Covid, bodies were hurriedly taken away by undertakers, nobody given time to say goodbye, to linger over and accept the benefits of grief. We fight illness until the final moments, a denial of what is inevitable, rather than celebrating the life that has been lived.

So in facing Harry’s death, once we were able to think coherently we wanted to make the most of every second, to love him and relish our time with him, however painful that was going to be. We were also determined to give him as normal a life as possible, to appreciate friends and family and have fun.

We were inundated with letters from friends during the early weeks of Harry’s diagnosis and they truly lifted us. They were proof that there were people who were prepared to join us on this terrifying journey into the unknown.

Part 2: Grief Diaries

My diaries illustrate what we went through 21 years ago, and also tell our story, which mirrors that of many other bereaved people whose grief starts on diagnosis, and carries on beyond the death of their loved one. At the time I felt the need to write and remember, partly for my own peace of mind and partly for Cam and Emilie should they wish to know what they had lived through when, due to their young ages, they might not remember it all. I wanted them to know that they really grieved and honoured their love for Harry. Writing, with no pressure or timescale, and only when I felt like it, was cathartic. In some way it helped me to make sense of what was happening to us, when at times it felt like an out-of-body experience.

5th October, 2000

Harry’s lung collapsed this morning. It has been a long day. We decided under guidance from the staff at Helen House to put Harry on IV as soon as possible. Yet again we have come straight here rather than consulting our GP or the hospital. We are now at a stage where there is no point in going anywhere other than Helen House – we do not want Harry resuscitated or put on life support. An impossibly hard decision to make, but one we both feel strongly about. Harry has been depressed this summer about not being able to join in everything with his friends and some of his friends are not around as much as they were. They are fit and active. This is so hard for him. This situation can only get worse and worse and the thought of him deteriorating with a bright mind but failing body is horrendous.

I have a constant sick feeling in the pit of my stomach, a nagging reminder of what we are facing, a reality check. It’s the pathetic knowledge that we have no hope. As a parent I would do anything to protect my child - to make him better - but I can’t. I suppose that’s the main thing that parents at Helen House Children’s Hospice have in common; we cover a whole host of different illnesses, but in order to walk through the doors your child has to have no hope of a cure. We have had all hope taken away; they are incurable, untreatable and terminal. We are stripped of our maternal or paternal rights to protect our children.

Harry is breathing quite well and is in a deep sleep, I feel relieved and know he is in the best possible place. We seem to be entering a new phase with Harry as his lungs collapse more frequently and with less notice.