How can you manage to endure the almost unbearable? “It works,” says Marion Getz, “with support”. The social pedagogue and trauma therapist accompanies families with terminally ill and severely disabled children with her “JoMa Project”. She and her colleagues stand by parents in crisis situations, for example shortly after diagnosis or during the dying process. The association also offers the families educational-therapeutic seminars that help stabilize the family system, which is often thrown out of joint due to illness, fears and worries. “We’re doing something really good,” the 49-year-old is convinced.
The association, which was founded in 2000 under a different name in Germering, accompanies around 70 families in southern Germany. For many years, this includes Petra and Daniel M., who prefer to talk anonymously about their experiences with their now 19-year-old severely disabled son Paul. A life that has largely isolated her because it is determined by Paul’s intensive care care. “You won’t be invited with children like that,” says Petra M. And you don’t meet other parents in the playground, in the day care center or at parents’ evenings. Petra M. is grateful to be able to attend a mother seminar of the JoMa project once a year. “This is my vacation, otherwise I won’t be able to leave.” With the seminars offered, she can breathe a sigh of relief away from the structured care routine and exchange ideas with women in similar situations. However, the seminars are not purely leisure and relaxation programs; intensive work is also being carried out in the conference rooms, among other things on concepts for being able to continue to cope with the exhausting everyday life. Or strategies to deal with the impending death of the child – otherwise there is hardly any time. The demand for the seminars is great, the association is continuously expanding its range. There are also seminars for fathers, siblings or the whole family. In the latter case, care beds and caregivers must also be organized. That costs a lot of money; a family seminar for eight to ten families can easily add up to 25,000 to 30,000 euros.
The association does not want to and cannot burden the families with the exception of a small contribution. “Because often only one parent can work, their room for maneuver is limited anyway,” says Getz. There is no state funding, so the association is financed through donations and cooperation with foundations. The advent calendar for good works of Süddeutsche Zeitung supported a four-day mothers seminar in Riederau am Ammersee in the summer.
It is estimated that there are around 50,000 families with terminally ill children across Germany. Most of them suffer from genetic defects or metabolic diseases, around a third have cancer. What worries these families the most? “The stones that are put in their way,” says Getz. As a rule, everyone involved would learn to accept their fate. But the fact that they have to wrestle with health and long-term care funds for approval of a nursing service or aids is grueling. “It’s a constant struggle,” says Getz. She herself cared for her terminally ill son Joshua for 13 years before he died in 2011. He was one year old when doctors diagnosed leukodystrophy, which was devastating the boy’s nervous system. Getz, who was still studying at the time, felt quite alone in a world in which sick and disabled people are barely noticed in public and end up in parallel systems early on, “as if sorted out”. So she founded the association together with parents, whom she met while doing physiotherapy. Joshua was three years old and Getz was looking for support for his brother, who was six years older than him. “There is a lot of the children in the club,” she says. From Joshua more than just the first letters of his name. Likewise by Maren, the daughter of a founding colleague, who has also died in the meantime.
Getz has now written several books about life with terminally ill children, one of which tells Joshua’s story. The therapist benefits from her personal experiences in dealing with other affected families. “I speak the same language.” And much more: “I survived.” Getz and her employees – two social pedagogues and an assistant – know what is important: listening, enduring the fainting, being there. They also give families a tool to help them cope with difficult situations. With the sick children, for example, they invent a power animal that stands by them in traumatizing or particularly painful situations. Parents learn to act step by step in unknown, difficult situations. “You have to make decisions all the time. And they have to be good,” explains Getz. After all, the parents should be able to go on living with these. So: stop. And one after the other clarify the questions: What is? What do I need? Where can I find this? “The answers lie in the families themselves, they are just difficult to find in the emotional chaos.”
As sad as the accompaniment may be for Getz and her team: “We can laugh together too,” she says. Laughing and crying are very close together.