“Sina wanted us to keep on living”

Interview with Patricia and Benno Schnarwiler 

Patricia and Benno Schnarwiler lost their 17-year-old daughter Sina to a rare form of bone cancer in 2023. In this interview, the two of them talk about how they try to cope with their grief, what they wish for and what might help other parents in a similar situation.

 

When she was diagnosed with cancer, your daughter was not quite 15 years old, so she was right in the middle of her teenage years. How would you describe her?

Patricia: Sina was a very loving and positive person, full of energy and with a real zest for life. She really blossomed in the years before her diagnosis, and she also grew closer and closer to her sister, Mona. As their mother, watching them grow together over time did me an incredible amount of good.

Benno: Despite her diagnosis, Sina wanted to live as normally as possible and never allowed everything to revolve around her illness. She loved music. We often played music together, played games and laughed a lot, even in the more difficult moments. Humour was very important to Sina. Until the very end, she was making plans: she wanted to train as a carpenter and play the cello in a youth symphony orchestra. Sina was also a really good listener and often motivated others, encouraged them to be brave, even when she wasn’t feeling well herself.

 

How did you find the last few weeks with Sina?

Patricia: We knew we didn’t have much time left, but we wanted to make the most of every moment we had. Sina herself wanted as much normality as possible. She didn’t want the situation to revolve around illness, but around life. Once we brought her home from hospital, she wanted to spend most of her time in the living room. That was where everyday life took place, with everything that goes with it – including visits from grandparents and friends. That was really important to her.

Benno: Sina didn’t want to be sad, mope around and have depressed people around her. There came a point when we had to accept that and we did everything we could to make her wish come true. It was maybe because everything seemed so ‘normal’ that we didn’t give up hope until the very end. In our heart of hearts, we knew it was not possible, but as parents, hope is always the last thing to go. That might sound irrational, but it certainly helped me.  

 

Sina died at home. Whose decision was that? 

Patricia: We were closely supported by the palliative care team at the clinic where Sina was being treated. The relationship with the doctors there was very personal. We could have gone to a hospice, but Sina said to us: “I’d rather be at home, but if it’s easier for you, I’ll go to a hospice.” The palliative care team made this wish come true for her and for us. They organised everything we needed, helped us with transport and were available at any time, even at night. Knowing that made it easier for us to deal with things.

Benno: The palliative care physician treating her also spoke to us about the dying process. We didn’t really know what exactly we would all be facing, Sina included. Looking back, I feel that the decision to say goodbye to her in the family and within her familiar surroundings – as horribly sad as that was – was the right decision for us. This physician also told us that when people are dying, they consciously let go and choose the right time for themselves. And that was the case with Sina.

 

What helps you cope with your grief over Sina?

Patricia: Rituals and certain places are very important to us. For example, our neighbours planted a tree on the lawn in front of our house and Benno put a bench underneath it. Now we invite everyone to a special festival under the tree every year with coffee and cake, and Benno lights a candle there every evening. A fire pit in the forest, which we redesigned with friends, is also a place we visit regularly. This way, Sina is always there – for us and for others.

Benno: Sina loved celebrations, she wouldn’t want us to be sad all the time. Rituals such as lighting a candle or visiting her grave help because, despite our helplessness, they give us the opportunity to show that we are thinking of her. Especially in the beginning, we received a lot of support from friends and family. Friends would come over and bring something with them or would invite us round to their place. Knowing we weren’t alone in this difficult time helped enormously. It is often the small, seemingly trivial gestures that give you comfort.

 

How is Mona coping with the grief of losing her sister?

Benno: I think she’s almost in denial to protect herself and us. Like Sina, she tries to focus on the positive and enjoy the beautiful moments. She also knows that she can talk to us whenever she wants to. Sometimes we can tell that she is suffering more than she would like to show – and then it suddenly all comes out. But luckily, she has many friends and hobbies. We are so pleased that she is integrated into such a positive environment.  

Patricia: I think she’s trying not to be a burden to us because she understands how challenging the situation is for us as parents. I don’t think she feels or ever felt neglected, either now or back then. In addition, we both have jobs that allow for a lot of flexibility in terms of working hours, so Benno and I were able to take turns caring for Sina during her illness and Mona was never left alone. But she too is grieving. Just in a different way from us adults.

 

Loss, especially the loss of a child, remains a taboo subject. How did those around you react to the news?

Benno: The reaction tended to be one of awkward silence. I fully understand that many people find a situation such as ours difficult to talk about. Nevertheless, it’s amazing how rarely I am asked about Sina’s death. Even in my professional environment, people rarely asked how I was actually doing. I would prefer more openness and interest. If I can’t cope with openness at a particular time, I can always say so. And even if it is sometimes very painful, talking openly about the situation usually does a lot of good in the end. It’s a shame really that death is still a taboo subject in our society, especially when it concerns a child.

Patricia: I’m afraid that Sina will be forgotten about if we don’t talk about her. That’s why I really appreciate it when friends and other people ask how we are and we can tell them about her. It works well with my parents: they are happy to talk about the situation and it does them good that we can laugh together. As sad as it is, Sina’s story is part of us, part of our lives. And that’s why I want to talk about it. As long as we remember her and talk about her, she lives on.

 

What else helped you?

Patricia: Various things, and that certainly includes a good environment. In my view, the question of inner attitude, of how you view life in dark moments, also plays a major role. I believe you always have the choice to either give up or keep going. Sina wanted us to carry on with our lives. She told us: “But you’re not always going to be sad, are you?” She didn’t talk much about death, but this was very important to her. Her positive attitude to life still carries us forward.

Benno: What also helps us is talking to other parents who have been through something similar. Childhood Cancer Aid Central Switzerland, for example, provided us with a lot of support during Sina’s illness and they also organise bereavement support groups. These meetings give me the opportunity to consciously deal with my grief without having to explain myself because the others are in a similar situation. I really appreciate that. 

Patricia: Work also helped me because it gave me a bit of distraction and brought some structure back into my daily life. It gave me short breaks in which I didn’t have to think about Sina. All these brief positive moments have given me a sense of lightness again and the strength to carry on. Step for step.

 

What advice would you give to other grieving parents?

Patricia: Sometimes there are days when you have to force yourself to do the things that need doing, even though you would rather just stay in bed. But that doesn’t help anyone, least of all yourself. Grieving is a process: you have to face your feelings and move forward step by step. You can give self-pity free rein or not as the case may be. Without our bereavement support group, we might have believed we were the worst off in the world. But in the group, you realise that you are not alone with your pain. That takes the wind out of the sails of self-pity and that is good because too much self-pity robs you of your strength.

Benno: I would consciously create spaces and places of remembrance. These can be rituals, such as lighting a candle, a memorial service, like our festival under the tree, or special days. For example, we celebrate Sina’s birthday every year and go to church together on the anniversary of her death. These moments connect us to her and make her very present. The particular forms of remembrance are very individual. However, I know from experience that rituals can help to integrate something so painful into your life. And even though it changes over time, the grief is still there every day.