Everyone will grieve in his or her own individual way – it is important to remember that there is no ‘right’ or ‘wrong’ way to grieve. There are ‘patterns’ of grief, often referred to as ‘stages’ (we will not go into these in detail as there are so many books that do this very well already, some of which are recommended in our booklist) , but many grieving parents will not go through these ‘stages’ in the typical order described in many grief books. Max’s mother Sonya says, ‘I know that I often felt that I was going through many ‘stages’ all at once, and that one day I seemed to be in one stage, and another it seemed that I had gone back to what was supposed to be a much earlier stage. It was frightening to feel so lost and out of control. I could feel brave and strong one minute, looking to the outside world as if I was coping well – and then suddenly find myself in floods of tears for no clearly apparent reason. Likewise, there were times when I wanted so much to cry openly, when a kind friend was being supportive and I wanted to open up about how utterly awful I felt – but I couldn’t take off my brave face.’

It is also important to stress that you have to grieve as YOU feel you need to – no matter if others might expect something different or might consider you selfish for not following their expectations or customs. Daniel’s mother Stefanie says, ‘Often the bereaved are expected to follow with tradition and do certain ‘stuff’, but if that is not right for you, do what is, and don’t feel the need to follow on as tradition dictates. Others CAN NOT understand, so don’t worry about fitting their agenda. It is hard to defy common practice and family rituals but the family has likely not experienced this loss before. Do things in your time and do what you see fit.’

Memorials provide an invaluable way of staying connected with your child, of acknowledging them and remembering them with love. Memorials can be private or public, and have many forms of expression. Max’s family have a bench at the Zoo, at one of his favourite exhibits (the chimpanzees) with a small plaque with his photo, and their friends at home in the UK planted a tree for him. Friends of Grace’s parents have named a star after her. Grace’s father made a compact disc with special music and photos. Edward’s parents keep his footprints, and planted a fragrant white flowering bush in the front of their house. Alexandra’s uncle placed a memorial plaque with her name in a new church in London, and her aunt planted a tree for her in Scotland. Friends of Alexandra’s parents raised money for a new incubator at the NICU where she died. Another friend has written a cookery book with her daughter’s favourite recipes. Both Jordan’s parents and Jakob’s parents have set up websites with their children’s stories and pictures. Sascha’s parents make a donation to a different charity every year on his birthday to honour his life and the goodness he would have brought. Others have established special scholarships, commissioned statues, donated a special item (like a stained glass window to a church, or a work of art to a school, or a special book to a library). We all keep favourite framed photos.

Friends can also help with memorials. A few months after Alistair died his tennis group organised a special tournament in his honour, and made a beautifully engraved “Alistair Cup” as the trophy. This allowed all his friends to join in and remember him together.

One of the most difficult parts of dealing with your grief for your lost child is to try to explain things to surviving siblings, and to help them to understand what death means whilst not frightening them. Ryan’s mother Jeanne talks of how difficult it has been to try to protect his 8 ½ year old brother Russell from her own pain, putting on a ‘brave face’ when all she wanted to do was collapse in tears. She and her husband Nicholas worry that Russell has had to mature early. Another bereaved mother, Gracie, talks of how she and her husband involve their older son Marco in their weekly ritual of tending Luca’s grave, and how they make it a family outing and visit nearby farms. Jordan’s mother Adriana always talks to her 2 year old daughter Charlotte about her special baby brother – every night before she goes to sleep Charlotte goes to look at the stars and says she’s saying ‘Good Night’ to Jordan. And five years after his death, Sascha is still very much a present member of the family. As the only member ‘in spirit’ he has a very special place in everyone’s heart.

Rebecca and Fabian were told at 4 months of pregnancy that their baby son faced severe developmental problems and that he would not live long – so they had a long time to prepare their 2 year old daughter Ashley. They talked to her about it, and explained to her that her baby brother would not look ‘normal’ (he had a very small head). Baby Lyndon lived for 9 months, and Ashley loved him very much. Even though she had been warned that he wouldn’t stay forever, she was shocked and saddened when he died, and screamed, ‘No! I want God to give him back to me.’ She missed him so much from her daily life, and was very unhappy. A child psychologist who was an acquaintance suggested they let her write a letter to Lyndon – so with the help of her mother she decorated a card with hearts and stickers and wrote that she loved and missed him, and drew a picture of them together under a rainbow. They put it in an envelope, addressed it ‘To Lyndon, Heaven’ and posted it in the postbox. This has given Ashley some peace, and helped her to feel a connection to the baby brother who was such an important part of her life and whom she misses so much.

Even with younger children, it can be a challenge - when Max died, his brother Lukas was only 4 months old, so his mother didn’t have to worry in the same way as Jeanne about putting on a brave face for him, and could cry openly. But she recounts how he quite obviously picked up on her sorrow and on the changed world that he lived in: ‘I will never forget the look of delight and recognition on his face the day we saw our friends’ son (who looked a lot like Max and was around his age) about a month after Max’s death.’ Now, nearly 3 years on, she says that Max is an important part of Lukas’s life – ‘We talk about him, look at his pictures and videos of him. Lukas doesn’t yet have a mature understanding of what death means, but he does know that he has a brother who is dead, whom we still love and miss, who can’t ever come back, and that we’re sad about that. I believe that it’s very important to talk openly about Max to Lukas and to my younger children – I want them to grow up with a slowly deepening understanding, and never to remember the moment they were first told about their dead brother.’

There are many excellent books on grief: guidebooks written by counsellors and psychiatrists as well as personal accounts by bereaved parents (see our booklist for recommended readings) . Max’s mother Sonya says, ‘When we could finally force ourselves to venture out into the world we went to scour bookshops for books that might help. I found reading these books hugely therapeutic – I could identify with so much and realised that I was not alone in this frightening new world, that there were many others who had walked this rocky path before and survived, who had felt all the heart wrenching things that I was feeling. In the many, many long lonely hours late at night when we couldn’t sleep, I would read chapter after chapter of these books aloud to my husband.’

We have also found support through the many excellent websites on the internet, particularly reading other bereaved parents’ accounts of their own experiences (see our links for a select list). Some of us have made good friends through these sites and their organisations. Ning’s mother Val talks of the comfort they found from realising that other people had ‘survived’ their losses and were coping in various ways: ‘These bereaved parents bear testimony to the saying “life goes on”, and that it was possible to find new routines, develop new interests, engage in new activities, and be happy again eventually. It seemed almost impossible to imagine this in the initial weeks/months/years of our loss. But each of us have our silver lining somewhere and we mustn’t lose hope.’