In a strange way, we are happy. Our daughter was able to die without fear, without pain, at home with us. It tears me apart to write this line. And yet it is true.
To lose a child is unimaginably cruel. No word can offer comfort. Nothing can take away the pain that is always accompanied by a sense of boundless injustice.
Nevertheless, there is something that leaves us as parents at peace in a life without our daughter Helen: the way in which we were able to say goodbye to her. It has shaped every single moment we have continued to live since then. We owe this to our decision to leave the hospital and go home - and to a children's palliative care team that made this path possible.
When our daughter Helen was only five, a bone tumor was discovered after a harmless fall from her balance bike. Very rare in children - but what good is that statement when your own child is affected? For exactly four years we lived between chemotherapy, operations and radiotherapy. The hospital became our second home; for a study we even went to Paris for a time.
We managed to drive the tumor away, but it returned. We had exhausting, fearful and burdensome times, but also long phases full of joy and serenity. With imagination, creativity and the pursuit of the greatest possible normality, we wrested small moments of happiness from life even under the most adverse circumstances. Carried by these moments and strengthened by our cohesion as a family, those four years of illness also became beautiful years.
For all the happiness we created, we also witnessed the terrible aspects of this illness. Although our daughter was mostly spared, we saw many children in the hospital suffer things that imprinted themselves on us forever. We were certain that Helen should never have to experience anything like that.
After four years of hoping, the moment came when the doctors told us that our child would die. It came completely unexpectedly during a phase of supposed light-heartedness.
That same day my husband and I decided that we did not want any further treatment for our daughter. No radiotherapy to keep her with us a few weeks longer. Helen's well-being, without pain and unnecessary strain, was the center of our thoughts and actions. We wanted to go home immediately and spend the remaining time there, where we would have peace and could shape the days or weeks away from hospital routines according to our own wishes.
The search for a mobile palliative care team for children was difficult, because there are simply too few. Thanks to the commitment of the pediatric oncologists, we nevertheless found one and were able to leave the hospital two days after the final diagnosis.
The palliative care team took time. They explained what we would probably face, showed us possibilities, took us seriously and strengthened us in our own path.
As a family, we wanted to be by ourselves, with as little outside influence as possible. We wanted to care for Helen, give her the necessary medication and be there for her - self-determined, according to our own rules, but reassured by the knowledge that a safety net of professionals would be available at any time.
We were allowed to say goodbye to our daughter Helen as we wished: she died without fear, without pain, at home in our arms.
Moving and encouraging at the same time, Nicole Heinrichs describes the loss of her daughter and how she and her husband found their way back into life. Her book "Konfetti & Tränen" was published by Droemer.
