“Don’t you like us anymore, mommy?” Mirjam Louwen was asked that question about four years ago. It came from her eldest daughter, then five years old, when Louwen placed a photo of her deceased son on the sideboard. “The umpteenth photo,” she clarifies. Florian was one of twins and died when he was four months old, he had Down syndrome and a heart defect. A virus killed him. In the first period after his death, Louwen was not aware of how her grief affected her two eldest. “And I guess I didn’t really realize that I filled the whole living room with just pictures of him.” She laughs: “It was a bit graveyard-like.”
That question from her daughter was – admittedly – a slap in the face, but at the same time a wake-up call with the following: the realization that she and her husband also have other children, who also suffer from grief. It was one of the reasons for Louwen to set up the Nooit Voorbij foundation in 2020 to support families with a deceased child. The foundation publishes books and organizes writing camps where people write about their grief.
The book arose from one of those camps, organized especially for young people Our bond is never over. Louwen has bundled the eighteen stories that were written that weekend – the youngest author was 12, the oldest 24. For every family member who has to miss a child, but also for the people around the family.
This is how Vince (12) tells how his sister died of cancer:
Ninthe has been in the box at our house for a few days. We put stuff in it, that felt nice. Then was the funeral. The funeral was sad, but also very beautiful. Ninthe’s coffin was placed on a carriage with horses. Everyone who came along had to cycle, because Ninthe always said: “I always have to cycle to school, even when it rains.” So we went cycling and what happened? It started to rain. I had to laugh to myself a little. This was what I missed so much. My annoying sister…
Doutzen (13) tells about her brother who died of a metabolic disease:
After the funeral it was quiet in the house, there were no more sounds from Jitze. No wheelchair, no sounds from the tube feeding pump, no more his sounds, even the voice of his speech computer was no longer there… But also the sound of the cooling plate that had been there for the past week was gone. I still like this sound. When I hear it, I immediately get the image of Jitze lying on his bed.
“Adults sometimes shy away from the details, the pain, make things more beautiful, express it in a veiled way, but children throw it out like that, especially if they are allowed to write,” says Louwen. “So I think that is quite a relief. That children, if you give them space, just name it all. The beautiful, the ugly.”
For example, Nova (13) tells how she lost her sister because she committed suicide:
Gaia lay behind a curtain. A nurse opened the curtain and then we saw her. She was black and blue, with bruises all over and a few bruises. There was a large bruise on her eye. My mother asked me to hold her hand. I didn’t want that. It was very scary and I didn’t know what to say. I wanted to say something, but the words wouldn’t come out. In the end I did hold her hand, but it took me a while. Gaia was in a coma, so she couldn’t talk. I wanted to go back in time to help her and to stop her.
While reading, Louwen discovered a common thread in the stories: “Children ignore themselves. Dad is distraught, mom cries a lot, it’s not so cozy at home anymore. Then you see that the remaining child will care, comfort, perhaps walk on eggshells. No one asks of them, they do it on their own.”
‘Dad is distraught, Mum cries a lot, the remaining child will take care, comfort’
Children do that because they depend on their parents and want to see their parents strong again, says health care psychologist Carine Kappeyne van de Coppello, who also contributed to the book. “That worry is often very subtle, by keeping their own pain away and doing extra things around the house.”
She believes it is good if parents have room to realize that there are other children who, in addition to the great sadness in the family, are also developing further. “It is important to them that there are streamers, presents and balloons on their birthday.” In addition, through their development, children begin to understand new things about death, and can give more words to their grief. “That way they can start ‘remourning’. And that is not a problem, it is only important that parents keep in touch with their children.”
Zahra (18) lost her sister Mariam to a metabolic disease:
Family was in the living room crying and then talking. I remember sitting with my niece and not knowing what to do. Another two-way. In between all the crying people I sat leafing through a book, knowing that I couldn’t cry that day because my tears had run out, and hoping no one thought I was heartless and didn’t care. A third feeling came up. Guilt towards myself and Mariam for not crying. I knew well that I wasn’t crying because I wouldn’t care, but that it was because I couldn’t cry. But what if I wasn’t sad enough? What if this meant I didn’t love Mariam as much as everyone else did?
‘Survival guilt’ is what psychologist Leoniek van der Maarel-Stordiau, who specializes in mourning, calls it. She also contributed a chapter to the book. According to her, many children struggle with this: why is my brother or sister no longer alive and can I still live? “You therefore do not want your parents to watch you as a child,” she writes, “with the result that the story is locked up in you.”
Guus (13):
Because Saar passed away, I notice that I have become grumpier. I also get angry at others more easily. I do notice that I have fewer arguments with my brother, because I am afraid that I will lose him too. I learned about myself that I am brave because I called 911 when I saw Saar there. I am very sorry about what happened. But Saar is no longer in my eyes but always in my heart.
Louwen also saw it in her own family: the care gene that is suddenly fully activated in the remaining children by the loss. “Suddenly my daughter Elinde asked things like: ‘Mommy, do you want something to drink?’” And Louwen answered immediately: “You don’t have to take care of mom, it’s my job to take care of you.” But still: Elinde felt that need. What Louwen also saw was that Elinde was taking excessive care of Celeste, Florian’s twin sister. “Reading lots of stories, comforting immediately when she cried, almost obsessive. When I asked Elinde if she also wanted to write something for the book, her piece was mainly about Celeste. I found that so typical of her sensitivity and concern.”
Elinde (8):
When my little brother Florian died, he was in the playpen. His hands were old and his heart stopped beating. His eyes were closed. Mom and dad were very sad, they still are sometimes, but my little sister Celeste was also very sad, she missed her twin brother Florian very much. She cried very often. She cried all over. I thought that was very pathetic. When she started crying again I put my arms around her.
Sadness: is there. Always. But life, the family: that is also there.
In the book, the authors are introduced as if they were writing in a friend’s book, with questions such as ‘eye colour’ and ‘favorite food’ – and then the question of who they lost. “You don’t have to make it hard. Children especially do not want to be seen as an exception. Just by putting that question among the easy questions, the loss simply becomes part of the child, just like someone’s favorite food.”
George (12):
Before Keet died, it was very cozy in the house. Of course also on vacation and weekends away. I always had someone to play with and tell everything to. It was nice to always have your best friend with you, to laugh and have fun. On holiday with the family, eating out or sailing on the boat… Keet was always there, until she passed away. We always celebrated Sinterklaas with lots of presents or a nice dinner with the family at Christmas. We sometimes put on a song about a tree at home, then daddy, Keet and I would dance with our arms spread and up and down, like a tree. Keet was sweet, cheerful and sometimes a bit sloppy. She had once taken a lipstick and made not only her lips, but also everything above and below pink. She had beautiful blonde hair and brown eyes. Keet and I had a lot of the same clothes: cardigans, dresses and shirts…. I miss Keet and having such a good girlfriend. Then I didn’t realize how nice it was that she was always there.
Parents can also learn from it, says Louwen. “There are parents who have not celebrated Christmas since the death of their child. I understand it so well, but I find it harrowing at the same time. Those children already have a fuller backpack than their peers, if they no longer celebrate the holidays, they are completely ‘different’. And I wish it for the families: being together, celebrating Christmas, and at the same time reflecting on the loss.”
It is, says Louwen, a matter of balance. Sadness: is there. Always. Grief has no expiration date. But life, the family: that is also there. Always. “Florian has been dead for four years now, and he is still part of our family. We talk about him, we cry for him, we celebrate his birthday and there are still pictures in the living room.” But: photos of all the children. Louwen only has a photo of only Florian on her phone. He looks curiously into the camera. When her children see it, she explains to them: “I can see you every day, and with Florian on my phone screen, I can also look at him every day.”
You can talk about suicide at the national helpline 113 Suicide Prevention. Telephone 0800-0113 or www.113.nl