When a child dies, the world stops for the family. Often, serious illnesses are the cause, such as leukemia, severe metabolic disorders or heart defects. When a child is diagnosed with such a serious condition, nothing is ever the same again – not for the sick children, not for the parents, and just as little for siblings and other relatives.
Life in a state of emergency
For months, sometimes even years, life moves between hope and despair. For the families, this often means constant commuting between the clinic and home. In addition, the daily routine, the care of the siblings, and the family’s own job have to be organized. The nervous tension wears many families down, because they live a life in a permanent state of emergency.
More life in the day
When, in the course of a life-threatening disease, the last hope of a cure is extinguished, it is time to rethink. In official jargon, this is called a change of therapy goal. In other words, it is no longer a matter of giving life more days, but of giving the days more life. This is often best achieved in a familiar environment, which can also provide extraordinary relief for parents and child.
Experts are convinced that every bit of normality is good for children. Being at home again gives them the security and safety they desperately need. Depending on the type and severity of the illness, however, some children may be better off in the protection of the clinic because all the medical options are available there.
Shattering children’s souls
Siblings also benefit when the sick brother or sister comes home. Some of them feel unloved or less loved by their parents because everything revolves around the sick child. At the same time, the siblings feel guilty about their jealousy. This emotional ordeal can manifest itself, for example, in school failure, bed-wetting and other behavioral problems – alarm signals of a child’s breaking soul.
If the sick child is cared for at home, the siblings are no longer left out. They can play an active role, for example by bringing the sick child ice cream or reading to him or her or performing other small acts of kindness – and laughing or playing together with him or her. In this way, the siblings experience themselves as an important part of the family.
Unimagined resources
However, many parents do not dare to take the step of bringing their sick child home: they are very afraid of doing something wrong. In many cases, this worry is unfounded. With professional help, most parents manage this task – especially if they realize that there are many resources they can tap into:
For example, friends who take the sick child’s siblings to the zoo in the afternoon. Or the neighbor who mows the lawn so that the parents have more time for their child. The social network can provide a lot of strength. That is why people in the environment of the affected families may calmly have the courage to overcome their shyness and offer support.
And this support can sometimes only consist of an open ear: Parents of seriously ill children often feel immensely relieved when they can pour out their hearts to someone. The importance of conversations with friends and relatives is also emphasized by a mother who lost her young son years ago: Parents who are alone carry an unimaginable burden, she said at a conference at the University of Munich on the topic of pediatric palliative medicine (medical care for dying children).
Message of the butterflies
Children are often the first to accept their illness and approaching death. Children intuitively know when they have to go. They express this knowledge symbolically, in pictures or poems. Many paint butterflies over and over again – metaphors for the transition into another world. They often have very specific ideas about death: about angels eating Nutella, about seeing their beloved grandma again, or about heaven where there is ice cream every day, as one eight-year-old leukemia patient knows. What burdens the children most is the despair of the parents. Therefore, the children need to know that it is okay for the parents to leave. When they say goodbye, the children often comfort their parents: I’ll sit on the cloud and wave to you.
Orphaned parents
Orphans are children who have lost their parents. For fathers and mothers who lose their child, there is no term in German. Perhaps because such a loss cannot be put into words at all. The pain, says Luft, cannot be taken away from parents. But they can learn to accept death as part of life. Perhaps it helps to know that the child spent his or her last days as beautifully as possible. The last two weeks with my child, says another mother, were the best in my life.
