Inseparable: What a sick child means to the family
They have a very special connection: Gustaf and his sister Alma on a trip.
© Mindjazz Pictures / PRWe have heard from families over and over again that they have wanted such a movie as 'inseparable'.
Not just being a victim, not getting lost in the disease? This is the wish of many families when a child is seriously ill or disabled. But how can that succeed?
Living with a sick child: four families, four destinies
How much a sick child changes a family, which the families especially suffer and what helps them, shows the director Frauke Lodders with her very touching film "Inseparable" (from 17 January 2019 in the cinema). She accompanies four families with sick children in their everyday lives, focusing particularly on how the siblings deal with the illness of their brother or sister? and how they experience the everyday life "in the shadow" of their sick siblings.
For example, Gustaf, whose sister Alma is disabled and numb several times, initially found it "slightly annoying" that his sister needs so much more attention, but by now he has got along well with it. He cares lovingly for Alma, just like her mother learned the sign language to communicate with his sister? and is very happy, "if she rarely hugs me". Without his sister, Gustaf says, he would not "understand many things in life the way he does now".
Why the families have decided to show their life with the disease in front of the camera explains Frauke Lodders here in an interview with ChroniquesDuVasteMonde.com:
ChroniquesDuVasteMonde.com: Dear Mrs. Lodders, What diseases have the children of whom you tell in your movie?
Frauke Lodders: The children have very different diseases. Svea's brother had lymphatic dysentery and has been free of therapy for two years. This means that he no longer receives any medication but is not yet considered cured. This is only the case if you are cancer free for five years.
Selin, the sister of Eray and Eymen, has trisomy 18. This is a rare condition, most affected children die in the womb or shortly after birth. Few children are older than three, but Selin is already 13 years old and, as one of the very rare cases, can even walk and communicate in a building language and in a few words. Max's sister Judith had NCL, that's an incurable hereditary disease, which unfortunately killed Judith.
And Alma, Gustaf's sister, has a multiple disability that is unclassified. For example, she can only communicate through hereditary language, has problems with the lungs that require her to be ventilated at night, and various other symptoms. It was interesting for us that although the clinical pictures or the disabilities of the children are very different, there are still topics in all families dealing with them that overlap.
Why did the families agree to tell their stories in front of the camera?
I think they were ready because they realized that we want to help and encourage other families with our film. We have heard from families over and over again that they have chosen such a movie as "inseparable" when they themselves came into the situation. If you get the diagnosis "sick or handicapped child", the world will first of all face all family members, time will become a luxury item. In the new situation, it is often difficult for families to read whole books, for example about the effects the disease can have on their siblings.
You can watch a film about this topic sooner. In addition, issues such as illness and death, especially when it affects children, are still taboo and, above all, treated within the affected family. For example, this also leads to outsiders not being aware of what's going on in families, in our case especially in siblings.
This then leads to stressful situations, such as when siblings in affected families are suggested that they should not stand up and hear them, "Just be glad that you're well," as if they're not Part of the situation at home and sometimes suffer from it. The protagonists have therefore also recognized the opportunity to use their stories to sensitize outsiders for their situation.
What do the affected families suffer most?
That is very different. The siblings have often told me that, of course, in addition to worrying about their sibling, they are primarily struggling to keep their concerns and worries low. Having to deal with the impending loss of his brother or sister can be distressing for a child. Therefore it is important to tell the children: "You are not alone with the situation". There are, for example, sibling groups to which the children can turn and get help.Children's hospices and children's hospice clubs also offer sibling work. There, parents can also find help if the situation requires it.
In your film, the focus is on the connection between the sick children and their siblings. It is very touching to see how sibling children care for, help and care for the sick children and how they focus their own lives on these experiences. why did you choose this perspective?
As a filmmaker I am always interested in watching where nobody else or just a few people are watching. In my life, I have always encountered affected siblings and their stories have touched me a lot. But I also noticed that very few people know what it means for the siblings to have a disabled or diseased sibling, so I wanted to share their perspective.
You have called your film "inseparable", referring to the strong connection between healthy and sick siblings. What is your impression: does the illness of a child have a positive or negative effect on the brother or sister?
That's certainly quite individual and difficult to say. During the research for the film and the filming I have both cases met. Life is also constantly in flux and there are certainly times in most affected families where siblings often find the situation more of a burden and other times when they realize that they are also benefiting from the situation at home. Because often these siblings are very reflective, have a high level of social competence, are self-sufficient and recognize very early the value of family and life. Of course, it is also burdensome to back up again and again and to confront the issues of illness and death.
One must not lose oneself in the illness so, one must try, nevertheless to stay with itself. You still have life.
One of the sibling children, a young woman, says it's important not to lose the disease as a family. How can this succeed?
In the beginning, this is certainly very difficult, but especially in chronic illness or disability someday also creates an everyday life and I have observed that it is important for many families to find moments here, in which the disease or disability is not the focus. For example, I know many parents in whom one parent sometimes only does something with the healthy child or in which the parents have regained space for themselves and their relationship and, for example, go out once a week for two , For example, Svea, who said the sentence, needed to treat her brother the way she did before the illness. She says that everything in his life has changed anyway, that he was not allowed to go to sports and school any more and that she wanted to keep him at least that bit of normality in the situation. But surely every family has to find out for themselves. What we wanted to show with the film was that each family handles the situation differently, but eventually finds the right way for itself.
Which moments of the shoot have you kept in mind?
There are many. I was especially touched by the days in the children's hospice. Before filming, I had already thought about how my team and I will go there, but was positively surprised with what good feeling we were there and went home from there. The filming of Judith's grave with all her friends and her family was also emotional. Really great was the sugar festival, because so far I have not participated in any before and I found it exciting to see how this holiday is celebrated. Otherwise, it is rather trivialities, gestures of the children to us, which have remained in my memory.
In your film, you show in a very beautiful and ingenuous way how much a children's hospice, for example, can help care for a sick child. Why was this important to you?
When you hear the word "hospice," you immediately think of illness and death. I used to think that you only go to a children's hospice when a child dies soon. I was not at all aware that families with life-threatening children can drive regularly to a hospice for many years. The ill child is then cared for there 24 hours. The parents finally have time for themselves and the healthy siblings, for which there are many great offers in the children's hospice. This intense, shared time, without being in the nursing commitment, helps many families very much. I wanted to show that because the family we accompanied to the children's hospice "Regenbogenland" had these "prejudices" before their first visit and had to overcome the first time to go to a hospice. I hope we can help reduce this inhibition.
Her film gives a very special feeling of how hard it is to endure, lose and miss in a child's worst condition, and makes it clear how precious each moment is with the family, how precious every single moment of our lives is and that We should not wait with anything that we dream about, because life can be so short. Is it this message that you, as a director, particularly valued?
We approached the shooting without any impact on results, but I am delighted that this message has emerged in working with families. Personally, I am convinced that we should never be afraid to follow our dreams. We only have this one life, and if we get the opportunity to do our dream, we should seize the opportunity, who knows if it will turn out.
"Inseparable"? from 17 January 2019 in the cinema? all information about the film here: //mindjazz-pictures.de/filme/unzertrennlich/.
