A year ago, Claire Prosser's teenage son died suddenly of an undiagnosed heart condition. Here, she explains what helps her cope - and what not to say to a grieving parent.
We're invisible. You can't tell just by looking at us. There isn't even a name for parents who have lost children.
And there is certainly no easy answer to a question that used to be harmless: "How many children do you have?"
I'm still working on that one. At the moment I say: "Two, but one died a year ago."
So how do you cope when your child dies? And, as in my case - when it happens completely out of the blue?
One minute I had a cheerful, talkative 14-year-old son called Tom, the next he was dead, from an undiagnosed heart condition.
At first we simply clung together - me, my husband Paul and our 13-year-old daughter Ellen. There was a deluge of post, e-mails, texts, endless knocking at the front door.
Then I looked on the internet and found myself immersed in the utter misery that is parents dealing with the death of a child. I read heart-rending personal stories and looked at chatrooms until my head was bursting.
The next thing I tried was books. Most were American with dubious titles like A Broken Heart Still Beats and I Wasn't Ready to Say Goodbye.
A friend gave me The Bereaved Parent by Harriet Sarnoff Schiff. Its easy-to-read chapters show their age in the treats it suggests, like a new eye shadow or giving your husband a Scotch after cooking his dinner.
But it pretty much tells it like it is, in chapters headed Bereavement and Marriage, Bereavement and Grieving, Bereavement and... the rest of your life.
The British books that stood out were Michael Rosen's Sad Book and his memoir, Carrying the Elephant, both of which refer to the death of his 18-year-old son from meningitis. Both spoke to the very core of me.
But, like my son, I'm a people person and sensed from the beginning that I would need the support of others. I quickly learnt that some of my friends were to cry with, others to laugh with, still others just for listening. Only a very small few could supply the lot - and what a big ask from me.
I've also found comfort - and Tom - in unexpected places. One of my friends introduced me to a healing masseuse, whom I have seen regularly throughout the year. She helps me relax but also connect with my son in a way I hadn't imagined. He feels very close when I am with her.
A silent hug
Another friend took me singing at Questors, my local theatre. Our exuberant teacher, Vanessa, explained that singing helped express the emotions churning away inside.
Most of all, a silent hug has said more than any words, certainly more than some of the things people have chosen to say, such as: "We all think it could have been me." (But it wasn't.)
And "I think of it first thing at night and last thing in the morning." (Only then, lucky you.)
And "Are you feeling any better?"
We soon realised that we couldn't do it all on our own. It was a relief to find that there was an organisation that could help us - CRY, or Cardiac Risk in the Young.
They campaign to raise awareness of sudden death in young people from heart conditions, and also offer bereavement counselling which I have found helpful.
And they organise an annual event walking over London's bridges to raise awareness. We were joined on a sunny July day by about 140 family and friends.
I was impressed to see so many of Tom's teenage friends turn up bright and early on a Sunday morning. But seeing them is bittersweet, as they are at an age when they change rapidly, and it reminds me again of the life our son has lost.
The house is still too quiet: I haven't yet learnt to cope without that noisy boy of mine crashing through the door, throwing his school bag down and shouting out hello.
The memories of the life Tom enjoyed are what sustain us. We will be dealing with his loss for the rest of our lives but I will always hear him in my head urging me to laugh and carry on.
A selection of your comments appears below.
We are coming up to the anniversary of the death of our younger son and its been a roller coaster year. Probably the hardest comment I had was that after three and a half weeks I 'should' be getting over it. The best and most helpful thing for me was people saying 'I don't know what to say' - that's totally fine; at least the situation has been acknowledged but PLEASE don't tell me you know how I feel! You don't know. Any more than I know how you felt over any loss of your own. Basically though we do the best we can and sometimes we'll all get it wrong and that's fine and part of the human condition.
Hilary V, Leeds
The season now appears to be rapidly accelerating towards Christmas, the day we effectively lost our little boy Joshua, born on Christmas day, the fools at the hospital did not realise he was in trouble until it was too late. He was born with severe brain damage and survived for six weeks. We have had all the comments "God chose you because he knew you'll cope", "I know exactly how you're feeling", "least you had six weeks with him", as well as friends crossing the street or darting back into shops to avoid us. One friend even avoided us until she wanted my wife to write a reference about a year later, she never even attended the funeral. Six years on, gone are the text messages from my brother telling me "he's thinking of us" on the anniversary of Joshua's death, they must all think we're over it, if only they know the tidal wave of despair still gets us; roll on Christmas
As for how many children do I have, I always include Joshua, he's part of my life if not part of anybody else's.
I can only just begin to imagine how the loss of a child would feel as I have only been a parent since July after ten long years of waiting. We adopted our daughter from China and are so lucky to have her. She has to have surgery at the end of the month though and although we expect the outcome will be good you just never know. At last though I have a happy answer to the question 'How many children do you have?' - for so many long childless years the painful answer was none. Thinking of you and all others who have lost children - I lost mine before they were born but that is still painful a decade later.....that child would now be nearly ten, what would they look like? are they a boy or a girl? what would they be doing? I'll never know......
My brother died 20 years ago this May. I still can't answer the question 'have you any brothers or sisters' in a way that works. My step-son died recently at 21, and I was equally at sea in terms of trying to find words to comfort my husband. I have come to the conclusion that there probably aren't any. I can only hug him and make him feel loved.
Caroline Gardner, London
Irene died a day before her 16th birthday. When anyone asks if we have children my wife says no, but I want to say YES, I have a beautiful daughter. When people ask that question I say no, because it unsettles them and the conversation dies. We had Irene for a lot of years. I feel for those less fortunate.
Michael Simpson, Glasgow
I have a friend who died aged 18. When I went to see his parents I was so afraid of saying the wrong thing that I almost didn't go. Then I remembered my mum telling me about a friend of hers who had lost her husband. She'd told my mum the worst thing that happened after his death was that people crossed the street rather than talk to her because they didn't know what to say. I went to see my friend's parents and said: "I know I can't say anything to make you feel better, but I just wanted you to know that I was thinking of you and that if you want to talk then I'll always be here." They cried and talked and it was hard to hear some of the things they had to say, but I am so glad that I did it because I never felt bad when I saw them in the street afterwards. I would always ask them how they were doing - not specifically about losing their son, but in general. If they wanted to speak about him, then they would, other times they would just say "today's not a good day" or "not so bad today". But they always felt they could talk to me and I could talk to them too.
Julie Pask, Norfolk
I send you compassion and the strength to get through each day. I lost my daughter, Sarah, just eight years ago in a white water accident in Peru. Her body was never found. Like you, I turned to books and read the same ones you mentioned. My husband and I then wrote our own book about coping with that first year, about the anguish and the gradual easing of pain which never quite goes. But one does cry less over time, and life without our most treasured child does become more bearable.
Barbara A Wilson, Bury St Edmunds, Suffolk
Claire's thoughts about Tom echoed many bereaved parents, my own included. The pain, hurt and loss coupled with a desire to want to talk about your child whilst being treated normally by your friends and colleagues and not shunned by fear and awkwardness that surrounds our society's understanding of death and bereavement. For many years I worked as a volunteer on a helpline under the auspices of Great Ormond Street Hospital. It aims to lend a listening ear to the hurt, confusion and pain that surrounds the death of a child. All the volunteers are bereaved parents and they offer no magic cure, just a friendly ear where you are not ignored or given an empty platitude. My time on the helpline was an invaluable period for me and helped me look at the death of my own daughter, Joelle, in a new light, a light that now produces smiles and not tears. Claire I hope, like me, you always answer that question with "I have two children". Love, light and peace.
Mike Foskett, London
I learned a few important things when my son died. A big life can be very short. The dead don't take their love with them in the same way that they don't recall all the birthday presents they gave you when they were alive. Not every death is a tragedy and not every life is wonderful. But a wonderful life no matter how it ends and no matter how short it was is never a tragedy. We all have to die. You won't forget the good stuff, so don't worry that you will. You are supposed to forget the bad stuff - so don't dwell on it. Never say, "why me" - just say "why not me".
Sam Phillips, Dundee
Most of us have no IDEA what to say at times like this. These people are doing their best to try and let her know that they care. Some of us know there is nothing we can say but also know that we can't say nothing. We say those things that you don't find adequate because we want you to know that we care, that we're thinking of you, that you're not invisible, that we feel for you. NOT because we are trying to cure your pain, or make you feel better. When I lost my aunt last year it was incredibly hard. But I never held it against people that didn't know what to say. Maybe the things we say when someone is grieving don't help, but how would you feel if everyone disappeared and said nothing until you "got over it"? This is another thing I often hear (and have experienced) during grief - friends disappear because they don't know what to say. I'd like to translate what Ms Prosser's friends are saying here: "We all think it could have been me." Translation: "I have children too and the thought of losing them terrifies me. I don't know how you're feeling but I do know how devastated I would be if I lost my child, and how devastated you must be now that you've lost yours. I don't know what to say but I want you to know that as a parent I feel for you. This is every parent's worst nightmare."
I know what you mean, Arianne, it is a minefield. I still don't know what to say to other grieving parents. However, I think what Claire Prosser is trying to say was that if you want to avoid inadvertently saying something hurtful, sometimes it is better to say nothing and give a hug. The trouble is that everyone's different. Some people don't like being hugged by people they barely know. You do also get the impression that some people feel that they have to say something to you, anything almost, so that they can carry on their day with a clear conscience. Which is also fine if it helps them cope, but can be confusing to the parent. So there are no rights and wrongs or simple answers, we just all need to have a bit of understanding for each other's feelings, grieving parents included.
Rachel's Dad, England
I lost my sister 14 months ago and believe me there is no right thing to say to a bereaved person, so anything you say can't possibly be wrong. The worst is when people say nothing about it to you, as if it hadn't happened, even the clumsiest statements are well meant and from the heart. Please don't let this prevent you from speaking to a bereaved person - there is absolutely NO WRONG THING TO SAY.
I, thank God, have not lost a child, but friends of ours have lost two - one as a child and the other as a teenager. There still seems a gap in the house when I go there, I still expect to see the "wicked" smile he had. At the time he died aged 14 he was beginning to develop into a lovely teenager with the glimpse of the adult he would become. We still talk and laugh at incidents that occurred while on holiday, like my sons and their friends tying him with dishcloths to the awning pole because he kept pestering them. Even though we were not the parents, it still felt as if a huge hole had happened in our lives that would never be filled. As you state, it is the memories of a life enjoyed that is remembered and talked about - and still talking about years after the sudden shock of his death is not only important to parents, but also those who used to know that person.
Carys Williams, Penygroes, Caernarfon
My brother died in 1990 very suddenly, he was 15 and I was 12. It was an asthma attack, probably brought on by peanuts (nut allergies weren't really heard of then). The shock of it, they're there then they're not, is probably the hardest thing to get over. I hope that Ellen is coping OK at school and that she is also getting counselling. I didn't go at the time, and now at 30 I realise that it was a mistake to ignore my feelings.
Lindsay Munley, Hampshire
Only people who are in the same situation as you will understand, others will say they know how you feel but they don't. My wife and I lost our young son 30+ years ago. In 30 years time, you will still remember all the good times. All I can say is be very very strong you still have each other.
Alan White, Littlehampton, West Sussex
The only thing you can do is to try and stop this happening to any other child, any other family, by working with that particular medical condition's support and prevention group. It's the only way to keep sane.
"And there is certainly no easy answer to a question that used to be harmless: 'How many children do you have?'" Oh how this strikes a chord. This is not a harmless question - thousands of parents have lost children, babies. It is horrible, six years on from losing our first child. Please, anyone reading this - never ask this question. It has caused more tears than the innocent conversation-makers have any idea about. Do I say two and have to go through explaining, or do I say one and feel racked with guilt at denying my dead child? If you must ask anyone this question then try: is it just (child's name) at home then? Or is it just you and your partner at home? The bereaved parent then doesn't have to explain any absences unless they want to.
I never ask people any more how many kids they have. It turns out so many wanted more, had miscarriages... Comforting people with these losses is very difficult. When told bad news I have learned to conceal my distress for them. This is empathy they don't need, your sorrow and fear when they have so much of their own. The unspoken solidarity of a hug, or a touch, or a simple "I'm sorry" is best, unless you are a close friend.
Our daughter Rachael died 25 years ago due to a heart defect, she was two. I've always been in a quandary about that dreaded question, however I don't think you can expect people not to ask it. When I'm asked, my mind races, do I say three or do I say four. Saying three meant I was doing Rachael a disservice, however, when I do I always cry. I've come to the conclusion that it's a good thing, she was and is much loved. It's also lovely to remember that I will always have a beautiful two-year-old. For some reason that gives me some consolation.
Pauline Lowery, Newcastle upon Tyne
I lost my sister, some 17 years ago now, in a car accident. She was 17. Although I will never forget my baby sister, but if anyone now asks me if I have any brothers or sisters I always say "it's just me". Partly to spare the person's discomfort with presenting them with the truth and then the awkwardness that follows when they don't know what to say. I still think about her a lot and I am sure she is never that far away - keeping an eye on us all. Sounds cliched but time is a great healer.
Julie G, Christchurch, Dorset
My older brother Neil was knocked down and killed by a drunk driver 12 years ago in Birmingham. The other day I was approached by someone I didn't recognise, but who recognised me. He had rowed in the same crew as my brother at university. The fact that Neil made such an impact on the lives of those who knew him that they remember and recognise his little brother 12 years later is comfort. My own memories, and being able to talk about my memories and those of friends is comfort. Grief doesn't end, you just get more practise at dealing with it, and controlling when and how you express it. Scant consolation, but all we have.
Ian White, London
As a doting father of four, you have my deepest sympathy. What a gorgeous son. You can see the kindness and happiness in his face, and you evidently made his short 14 years very, very happy ones.
CJ Smith, Belfast