«Mummy, what's it like in heaven?»
Nothing has been the same since 14 January 2015. On that day, our then six-year-old daughter Lina was diagnosed with glioblastoma. With this particularly aggressive brain tumour, WHO classification grade IV, there is currently no chance of recovery. It was clear that Lina would only be with us for a limited time, perhaps a few weeks, perhaps a few months.
We expected Lina to do what she thought she could do and gave her the freedom she needed.
Our son Tim was almost four years old at the time. We were incredibly sad, we cried and cursed. My husband and I didn't gloss over anything and didn't play the strong ones either. Right from the start, we were open about Lina's illness and communicated openly with our family and friends. Because we didn't have the time to answer all the questions, we set up a blog to keep our family, friends and neighbours informed.
Chemotherapy cancelled
One week after the emergency admission to the children's hospital, the doctors tried to remove as much tumour tissue as possible by means of an operation. Lina's condition had deteriorated dramatically in the days beforehand. At this point, it was not clear whether she would even live to see the date of the operation. The glioblastoma had grown into the brain tissue. This meant that only a third of the tumour could be removed. If the doctors had removed more tissue, we would not have got back the Lina we knew.
After the operation, Lina received chemotherapy. The additional radiotherapy was discontinued because the tumour was so malignant that it was not even affected by the radiotherapy.
Infinitely precious time together
Three weeks later we were allowed to take our daughter home. Lina accepted her fate incredibly bravely. Although she was physically weakened, she was able to lead a reasonably normal life again. We expected her to do what she thought she could do and gave her the space she needed.
Lina always knew very clearly what she wanted. She had retained her independence despite her cancer. Surprisingly, she no longer wanted to go to nursery school, but wanted to spend the rest of her time with us parents, her brother and friends.
It's not the big things that count, but the shared moments of togetherness.
Six weeks later, complications arose. Another brain operation was discussed to alleviate Lina's symptoms. I asked her if she wanted to stay on earth with us and if she had enough strength for another operation. Lina wanted to live and decided with us in favour of the operation. A few days after the second operation, we brought Lina home. It was very important to us that we could stay together as a family and accompany our daughter on her journey at home. My husband was very supportive.
The time we had left together was infinitely precious. If Lina's condition allowed it, we did things together. We went pony riding, visited an aquarium or invited Lina's friends round to our house. We even went on a camping holiday in Ticino, which was made possible by the Sternschnuppe Foundation. However, it's not the big things in life that matter. It can be just as valuable to enjoy time together at home on the sofa. Because it's the shared moments of togetherness that count.
A moment of pure love
When Lina's condition deteriorated further in April 2015 and she no longer wanted to play outside with her friends, she became very sad. For me as a mum, this was the most difficult time because we couldn't replace the time our daughter spent with her friends.
Tim also felt that his sister needed him. He wanted to stay with her rather than do things with friends. Although Tim was only just four years old at the time, he supported his big sister with everyday things, adapted his pace to hers and conjured up a lot of light-heartedness in her everyday life and ours.
When Lina asked me what would happen if the lump in her head continued to grow, I told her the whole truth. I explained to her that the time would come when she could decide whether she wanted to go to heaven if life on earth was too exhausting.
Leaving the decision about her fate to her was a moment of pure love for me. Never before had I felt a deeper connection with our daughter than in that moment. I believe that this is what all-encompassing love feels like. After that conversation, our daughter knew that she was going to die. She accepted it and embraced it.
Lina often talked about guardian angels. The worse she felt, the more guardian angels were with her.
Tim also knew what had happened to his big sister. But the extent of her fate was incomprehensible to him. It wasn't for us parents either. We knew just as little as Tim what it would mean for us if Lina died. We didn't have time to think about it either, because everyday life with our children demanded our attention in the here and now. And that was a good thing. Both children helped us a lot to tackle life in the moment and appreciate it.
- Every year, 400 to 500 children die in Switzerland; around half of them die in the first year of life.
- Almost 40 per cent of all deaths occur in the first 4 weeks of life. Newborns die because they are born prematurely or with severe malformations.
- Disease-related deaths after the first year of life occur due to incurable diseases. Neurological diagnoses are in the foreground, followed by cancer and heart disease.
- Accidents account for almost half of all deaths in children over the age of 2, especially schoolchildren and adolescents.
Source: pallnetz.ch
Lina's guardian angel
One day, Lina wanted to know what it was like in heaven. I suggested that the following night we could all dream about heaven and then imagine what it looks like there. That night we all dreamt of our favourite places in the world. We also believe that Lina saw the sky. She told us about relatives she had never known. She also often talked about her guardian angels. The worse she got, the more guardian angels were with her.
Lina doesn't live on in my heart, as is often said, but I can feel her next to me.
In the weeks that followed, the cancer took its course. Lina's condition deteriorated drastically. She decided to stop taking the medication. One week later, on 2 May 2015 early in the morning at 1:15 a.m., Lina died.
Twelve hours earlier, she said her last words: «Bye mummy, take care». Then she closed her eyes and fell asleep.
Lina's presence in everyday life
At some point, she simply stopped breathing. I sensed that her soul had gone on its way. I'm sure that something good awaits us after death. Lina could never have died so calmly if there was nothing more to come afterwards. Death no longer scares me.
My basic trust has not been shaken. I believe that there is a force within me that looks to me and accompanies me on my journey.
Lina is still very close to me now. She doesn't live on in my heart, as is often said, but I can feel her next to me. Not a day goes by when I don't think of her. Lina is also very present in our family's everyday life. Our love for her accompanies us like a treasure that nobody can take away from us.
Although there are still difficult days today, we have accepted our fate. The fact that we were able to accompany Lina to her death at home and write our own story is a great comfort. We wish people who accompany their loved ones as they die the courage to go their own way.
