HOW WE HAVE COPED - by parents in the CBSS network

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The awful reality of losing a beloved child is something we face with extreme difficulty. But it is possible to cope with it and to keep on living, slowly learning to accept it and eventually finding some kind of personal peace or closure. It is very important to remember to take one day at a time. From our various experiences we have gathered together some thoughts on things we found helpful to keep us going – or things we wish we’d known at the time:

 

He/She will always be your child

You will never stop loving your child, nor being his parent, just because he is no longer with you - this brings both pain and comfort. It means that you live with the pain of your child’s loss forever, and that your heart will always yearn for him to come back. But it also means that you have a very special bond with your child that stays with you always. No one can ever take away your memories, your dreams and your love for your child.

 

No ‘right’ or ‘wrong’ way to grieve

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’ 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 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.”

 

Allow yourself TIME

One thing that is very important is to be patient with yourself and give yourself time to grieve. It can be very damaging to feel that you ‘ought’ to have got over it and to have ‘moved on’. Experts agree that it takes many years for a bereaved parent to work through the grief process. So much will depend on the particular circumstances and so many things can complicate the process and serve to make it harder and longer. Added complications and sources of pain include babies that are stillborn, where the mother has had to give birth to death; children who have died particularly painful or horrific deaths; death of an only child or much longed for and difficult to conceive child; and parents who suffer guilt over their child’s death – maybe they felt they failed to spot symptoms, failed to protect their child, should never have let them go out on their own…
 

Go with the flow

Grief is a frightening new universe. You might be used to feeling ‘in control’, feeling confident in facing the world, proud and strong and invincible – and now suddenly you might feel totally lost, powerless and terrified. Try not to worry about feeling out of control – allow yourself to go with the flow.

 

Alexandra’s mother Marina tells of how she hid away under the covers in her darkened room, taking a long time to emerge very slowly into the outside world.

 

Max’s mother Sonya recalls how she took to wearing glasses instead of her usual contact lenses – so that she could take them off and ‘zone out’ the world, sending everything into soft focus. She says, “ I felt as if I wanted to hide away in a dark hole and not look anybody in the eyes ever again.”

 

All this is OK. Grief for a lost child is agony – there is nothing wrong with howling, crying hysterically, hiding away – do what you have to do to get through each moment.

 

The only way is THROUGH it

There are no shortcuts to grieving – it is a natural, unavoidable process, and part of life. Taking medication may be a temporary fix but it will not solve the problem and one day you will have to face life without that help.

 

We have to face up to the reality of our child’s death, and to go through the pain of grieving their loss, if we are ever to find any kind of resolution and be able to move on with our lives with any kind of meaning. Facing up to the reality means things like seeing and touching your child’s body, putting their possessions away, and talking openly about your child and about how you feel. In Jerry Sittser’s book, ‘Grace Disguised’, the author relates a dream he had where the sun was setting and night was coming and he was running towards the sun trying to outrun the darkness. He ran, terrified, realising he couldn’t outrun the darkness. Then he realised that the only way to get past the darkness was to turn around and run directly into it -- that through the darkness was the fastest way back to the sunlight.

 

Pace yourself

While you have to go through it, you don’t have to deal with it all at once. It is equally important to ‘pace’ yourself over your loss. If you don’t feel you are strong yet to pack away his things, or look at his video, you don’t need to do it now. It took Ning’s mother Val two years before she could watch a music video of Ning. And some parents prefer to leave their child’s room intact instead of putting away their things. Remember that you can revisit these issues when you feel stronger, even if it means taking years to mull over them. It’s OK. But you will need to go through it at your own pace.

 

Be patient and kind, and nurture yourself

Whatever the circumstances, you must be patient and kind with yourself – and with your partner. The death of a child can put unbearable stress on the relationship of the parents, as you have both suffered an unbearable loss and so in many ways are both unable to help each other, whilst both needing love and support more than ever before.

 

Try to nurture yourselves, give yourselves little treats, no matter how small – anything to make life a little easier or more comfortable. Take care of yourself physically – try to eat properly, to rest and sleep.

 

Many of us have found it very difficult to sleep for a long time after our child’s death – Max’s parents Sonya and Chris sought the help of their GP who recommended a mild antihistamine tablet (as it is non addictive and is out of the body’s system after 12 hours so doesn’t leave you feeling groggy the next day) and say it really helped.

 

Divert your energy

You may suddenly feel that although you have a lot of free time on your hands, your life no longer has meaning or purpose. Ning’s mother Val is not alone in saying that she would often just stay in bed and spend her energy crying. With nothing to do, it can be all too easy to fall into what she calls a ‘spiral of sorrow,’ leaving you exhausted from crying and heartache. Falling into a lethargy of despair could be damaging to you physically as well as psychologically, if left unchecked. It may then be a good idea to divert this energy elsewhere.

 

Many of the parents in our network have found great comfort from volunteering at places like the Assisi Hospice (pediatric palliative care for children with terminal illness) or the Rainbow Centre (a day centre for children with special needs) or helping to paint rooms at the KK Hospital NICU. Alternatively you can do small acts of kindness like helping your mother or the old lady next door do their marketing.  Or if you feel up to it, go window-shopping or to the museum or to your child’s favourite parks.

 

If you can muster the energy, it can also be very beneficial to be physically active – many parents have found running, or long early morning walks, therapeutic - this may have the added benefit of reducing insomnia. Many people feel that by pouring their energy into physical activity, particularly if it helps others, they are helping to expel their own emotional pain.

 

Memorials – remembering with love

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.
 

Talk about her, tell your story

Most of us will find it immensely difficult to talk about our child’s death, particularly in the early weeks and months. But it can be very therapeutic. Ning’s mother Val says, “It took me a while, but I now believe that telling my story about Ning’s death helped me manage the reality of my loss. The repetition at first left me miserable, but the more I told my story, the stronger I felt. I am still heartbroken every time I relate it, but not in despair. And I would mention her name if it comes up, and this may sometimes surprise people. I remember replying to a question ‘I have 3 kids, 2 boys and an angel’. I felt good that I did not deny having 3 children.”

 

Many people, friends and acquaintances and maybe even relatives, might be afraid that if they mention your child’s name that it will cause you even more pain. It can help you as well as others to let those around you know that it is OK to speak of your child – that remembering your child is painful, but not as painful as NOT remembering your child. Others will be put at ease by your instruction, because they also do not know what to do or say to help you.

 

Help siblings to remember without fear

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 goodnight 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.”

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Siblings keep the continuity

You may have lost your only child now without knowing if you will have another. Or you may already have other children. Whatever the circumstances, it may be helpful to allow some continuity to help in your grief process.

 

Keep some of his things with you for his siblings (present and future). You would be amazed how a simple object can connect you to your lost child. Ning’s parents had no other child when she died, but they kept many of her favourite toys and clothes with the hope of having other children in the future - and today her brothers wear her tees, play with her cooking sets, tent, soft toys and other things. Her parents feel that this underscores the little life she had with them, short as it may have been.

 

Sascha’s mother kept a small trunk of his special toys, shoes, clothes, books and artwork, as well as his birth and death announcements. She plans that her other children will in time be allowed to choose what they would like to keep themselves from his trunk.

 

But remember that you must pace yourself and go slow if you need to – Max’s mother Sonya says, “I know that in the first months after Max’s death I could not cope with dressing Lukas in Max’s clothes or having Max’s toys out to play with, and in fact I found it far easier to make things as different as possible – but in time, all the boxes of Max’s clothes and toys have come out, and his younger brothers all get to share his things, and now I love it – it helps me to feel that Max is part of the family. I still keep some special things away though, just for me to remember.”

 

You are not alone – journey with your spouse or partner

Remember that you have your spouse to journey with. He or she feels the loss as intensely and feels the heartache as deeply. You may need time on your own, but allow time together too.

 

Both Alexandra’s parents and Ning’s parents found that going away on a trip together, away from ‘normal life’ and the distractions of work and family/friends, really helped them to understand each other’s feelings, regrets, hopes and fears.

 

Ning’s mother Val says, “We talked and discussed each other’s needs and raised the difficult question of whether we would have another child. We found it important to plan our days and weeks together, to be accommodating with each other, and to draw strength from each other. One thing I am always grateful to my husband for was his tact in telling me when I should stop wallowing in my grief. ‘OK, enough for the day,’ he would say jokingly, or, ‘Ning’s watching…she wouldn’t want to see you like this.’ We would then go for a walk, and it made us both feel better.”
 

Use resources

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.”
 

Religion/spirituality

Parents who have a religious faith have often found that is has given them enormous strength – and some say that they do not think they could have survived without it. Others have turned away from their faith, feeling ‘let down’ by God. Some have turned away in anger only to turn back to find comfort once again. Some parents have felt that their faith in a loving God and in an afterlife gives them hope – most importantly, hope that their child is in a happy place, and that they will be reunited once again after their own death. Religious rituals have been enormously comforting to some parents. And parents who might not have any religious faith have found comfort in spirituality, believing that their child’s soul survives and that there is a deeper meaning behind their child’s death.

 

Tiny steps

So give yourself time, allow yourself to ‘go with the flow’, and don’t set yourself great expectations of how you ‘ought’ to be facing the world. Take tiny steps as you move through this unfamiliar new world, congratulating yourself (and your partner) for just getting out of bed and getting through another day, and not giving up and hiding in a darkened room.

 

You will never ‘get over it’

Remember, you never ‘get over’ loss. You only learn, ever so slowly, to live with it. Many other people will be expecting you to move forward at an astonishing rate of recovery. Be kind, gentle and patient with yourself while your broken heart tries to learn to accept the unacceptable - it is by nature a very slow process, full of setbacks and challenges.

 

NOTE: This piece is taken from our book, Farewell, My Child (2nd edition), published in 2012. If you wish to receive a copy please email us.

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