I grew up in the village where Ninette and her family lived, so when she sent over her list about losing her son Tosh, I was utterly heartbroken for her. The death of a child is incomprehensible and, as she says, it’s not the correct order of life, no matter their age. He was still her beautiful baby boy.
Ninette has written 27 bullet points, one for each year of Tosh’s life. And I’m honoured to share her precious words.
1. “Well, he has a broken leg but that’s the least of his problems. He has suffered some trauma to his head. In this country we…how can I put it? …we would say he is brain dead.”
2. In the early hours of the morning, on the 13th of January 2011, my twenty-seven-year-old son Thomas, was rushed to intensive care in Porto, having fallen through a skylight whilst searching for somewhere to paint graffiti.
3. I took a phone call, the call no parent wants to receive, from a doctor in the hospital, and when I asked her how bad it was she explained his injuries to me. Her English was good, but I couldn’t quite take it in. I existed in a state of denial and numbness for a long time.
4. His death was a devastating shock for the family and for me. The loss of a child is something you can never ‘get over’ but I think you learn to live with the grief and accept that they are gone.
5. The family talk about Tosh (his nickname) all the time and I often talk ‘to him’ if I want to tell him something important, when I’m out walking the dog. I sometimes even discuss things with him. Not that he ever gives me an answer.
6. I had so much to come to terms with after his death and over the following weeks, months and years. I have never stopped grieving. It’s a horrible road that nobody wants to travel but grief is a path most of us will walk down one day.
7. The ‘organ donation’ was a massive issue for me. It was probably the most difficult thing I had to deal with. I knew it was the right thing to do. I knew that he would want his organs donated so that others could live, but the thought of them cutting him up and taking part of his beautiful body to use as spare parts was unbearable to me.
8. We discussed it as a family and then gave permission. But I couldn’t get over the fact that they weren’t going to anaesthetise him. Mrs Hartley, your son is in a far deeper sleep than any anaesthetic could put him. That’s what the doctor said and I had to believe her. It was hard though. I had visions of him being able to feel the searing pain of the surgeon’s knife. Screaming in his head and me unable to hear him.
9. I’m saddened and upset that when I said goodbye to him in the intensive care unit before they took him away for surgery, I didn’t shake him vigorously to make sure that he was ‘gone’. Also, I was never given the opportunity to go with him into the operating theatre and turn off the life support machine myself. I understand that in the UK this can happen.
10. Tosh died because he was doing something dangerous and illegal. I think — in fact I know — that some (many) people feel that he deserved what he got and that my grief is not as deserved as the grief of a mother whose child had died from other causes. I want to shout at them. ‘The grief is from the loss of the child and nothing to do with how they died!’ I can visibly see the reaction on their face, when I tell someone how and why he died. They try to hide it but they can’t. I’m almost over that now. It’s their problem not mine.
11. Although Tosh was 27 years old, and a grown man, that doesn’t change the fact that he was still my baby. He was a beautiful baby, a wonderful boy and a handsome caring man. But people seem to think that because he was not a ‘child’ then I shouldn’t be so upset and should ‘move on’. They have no idea. When your child dies, at whatever age, it’s not the correct order of life. I don’t think it matters if you’re eighty and your child of sixty dies. The pain will be just as bad.
12. I can’t understand why people think that because I had five children, losing one of them isn’t so bad because I’ve got four others. It’s like talking about a set of chairs or something. Ridiculous! I have never thought like that. What I did have was the reciprocal support of the other children. We got through it together.
13. Once a mother always a mother. You never stop worrying about your children and you’re always there for them when they need you. I don’t think that ever changes or maybe when as a parent you become too sick, old to look after yourself, then there is perhaps a role reversal. But only then.
14. I never had any counselling about the organ donation, or the loss of Tosh, or how to deal with the overwhelming grief that sucks the life out of your own body. I was a wreck inside, although I tried not to show it. I did a great deal of crying in private. I carried on, but I didn’t keep calm. Then quite soon after his death I felt the need to keep in touch with him. So. . .
15. I began writing him a letter. I told him everything that had happened in Porto and then carried on to tell him things that had happened since he left. Writing became my therapy. I wrote thousands of words on my computer in a word document. The writing became massively important to me and I started taking online courses in creative writing. Poetry became my thing. Short stories flash fiction. I wrote every day. I could lose myself in the words and all the time writing a little bit to Tosh; keeping him up to date with everything.
16. I felt that only other bereaved parents would completely understand how I felt. I was obsessed with finding other bereaved parents. When it first happened, I thought I was alone. I thought no other person had ever experienced what I was going through; or so I thought. Then I found the Compassionate Friends. An organisation for bereaved parents. Suddenly I wasn’t alone, there were hundreds of others who were suffering just like me.
17. There’s not a great deal written about bereaved parents. Especially those of us who have lost adult children. It’s as though, because they’re grown up and the umbilical cord was cut many years before, then apparently, it’s not the same as when the child is under eighteen. Bollocks. As I said before, age is irrelevant.
18. The older the child the more memories you have to draw on. This can hurt so much but at the same time it is good to remember the happy times. Tosh was no saint but I treasure some wonderful times when he was small. Then the teenage years of angst and revolution. Then the adult Tosh, the kind caring man who would always have time for the man begging in the street. He would give them some change or a sandwich or something but most importantly he would speak to them and listen to what they had to say.
19. I have photographs and paintings of his graffiti. I have videos, although sadly a box of videos with the children growing up: Christmas, birthday parties, outings, holidays etc., was lost a while ago. I would give anything for them to turn up somewhere.
20. Unfortunately, so many people don’t know what to say to a bereaved parent. They don’t understand that we have a need to keep talking about our lost child. We want to say their name. We want to ‘keep their memory alive’. Some people would rather gloss over our loss and talk about something else, anything else, the weather, holidays, politics but they won’t mention…the child that died.
21. As a family we never stopped laughing. Even though our hearts were and are broken, we know that Tosh would find so much to laugh about in any situation. And it is okay to laugh. It takes a while, because at first you feel guilty laughing. You feel guilty for smiling and perhaps having a good time when you go out. But I know that Tosh would not want us to remain miserable all the time.
22. We celebrate Tosh’s life twice each year, for his birthday on the 30th November and on the anniversary of his death on the 14th January. He has two nieces now that he never met, but they know all about him. They bake him a cake on each of those anniversaries. A birthday cake, of course, and then a death day cake. We certainly laughed about that when the girls came up with the idea.
23. ‘Celebrate the good times. Think of all that he achieved in his life and don’t dwell on what he didn’t do.’ Says my eldest son.
24. Tosh didn’t have children. Whether that is a good thing or a bad thing I do not know. There isn’t a young Thomas or Thomasina in the world who are missing their dad. In some ways I would have liked the legacy of a grandchild. But in reality, that might just have made things harder.
25. It is the lot of a bereaved parent to remain bereaved. It’s an invisible and incurable condition. All that you can do is learn to live with this loss. It’s never going away. You can’t bury it, throw it in the bin or dispose of it. It’s there for the rest of your life. You also can’t catch it. It’s not contagious, even though others might behave as though it is.
26. On a lighter note. Because there should be a lighter note. One thing that arose from losing Tosh was my writing. I have found writing to be the most wonderful therapeutic tool. And for the tenth anniversary of Tosh’s death in 2021 I published a book Dear Tosh in which I tell him about the world ten years after he left it. I think he would have been proud of me and that makes me happy.
27. Twenty-seven points in my list for twenty-seven years of his life. In my book there are twenty-seven letters written to him. Thomas Anthony George Hartley. Where are you now? I’m not a religious person so I don’t believe he’s anywhere ‘up there’ but I do believe he’s kept alive in my heart and in the hearts of all our family and our friends. If you know someone who has lost a child of any age. Please take the time to speak to them about their loss. Open up the opportunity for discussion and for memories to be shared. Make them cry or laugh. Any emotion will do. Just keep the memory of their child alive.
** Thank you for reading my list. You can see more about me and my book at ninettehartley.com **
** Dear Tosh is available at Waterstones, Amazon and any independent bookshop **
Compassionate Friends: tcf.org.uk
Mind (bereavement): mind.org.uk
The Good Grief Trust: thegoodgrieftrust.org
FANCY SOME MORE?
– READ What Death Has Taught Me by Anna, who is an end of life doula and wants to improve the entire dialogue around death.
– LISTEN to Griefcast host and comedian Cariad Lloyd on Honestly podcast as she opens up the conversation around death and dying.
– READ Georgina Lucas’ painful list about the death of her baby boy at three weeks old My Baby Son Left a Legacy of Love
– READ This Is Grief, a list by Vikki Muston whose capacity for survival is unbelievable after she lost 10 people in two years. It’s full of helpful ideas and suggestions.
– LISTEN to the episode of But Why? podcast where Stacey Heale talks about her experience of death and grief, and how to really live.
OR HOW ABOUT WRITING A LIST?
Find submission guidelines here. All writers and topics are welcome.
** ‘But why don’t I feel happy all the time?’ ‘But why do people die and are they just sleeping?’ and “But why do adults drink beer and what does it do?’ are some of the tricky questions I tackle in my debut book BUT WHY? which is available to order now and also on audiobook.**