Love, life, death, and a price. Worth a Ventafridda Award?

Vittorio Ventafridda was a palliative care pioneer and in 2007, the Maruzza Foundation established an award in his honour. It is given each year to a clinician who has demonstrated outstanding initiative and enterprise in the paediatric palliative care sector and this year it was awarded to Natasha Pedersen. Natasha, among many other achievements, is the founder and Chief Executive of the Norwegian Association for Children’s Palliative Care. For today’s blog, Natasha tells us about her work and what this award means to her.

 Elvira Silvia Lefebvre D’Ovidio, Maruzza Foundation’s President, presenting Natasha Pedersen with the 2022 Ventafridda Award.

In May 2022, I received the Ventafridda Award. It is hard to put into words what this means to me on a personal level. But I hope it will also mean something for the visibility of our continued work in Norway. I want to underline this, especially since Norway is an incredibly wealthy nation that takes pride in our health system. That’s why we really mean it when we allow ourselves to say that we are building history one stone at the time. On a personal level, it is extremely hard to describe what this work means to me, since Norway’s very first children’s hospice and palliative care centre is named after my beloved daughter Andrea, who died thirteen years ago.

This award is marking a milestone as we are slowly, but surely, approaching the realisation of a legacy of such magnitude. It makes me proud to be able to say that Andrea’s House will be ready for our first guests by the beginning of 2023. The list of people that I have met on this road and who have helped and inspired me is far greater in length. I would like to mention Ann Amstrong at Children’s Hospice International; Joan Marston, Sue Boucher, and Julia Downing from the  International Children’s Palliative Care Network (ICPCN); Julie Ling, Chief Executive, Christoph Ostgathe, President, and the Children’s and Young People’s Taskforce team at EAPC; Katrina McNamara; Lizzie and the entire staff in Together for Short Lives; Dr Richard Hain, Sue Fowler Kerry and Dr Ross Drake. To the people at Regenbogenland for inspiration and learnings. To Sabrina Kraft, to Anthony Foskett, Anja Hermann, and friends at Kinderhospiz Sterntaler for their motivation and guidance.  And of course, a big thank to The Maruzza Foundation with Silvia and her amazing colleagues, Ken Ross and Dianne Grey. They all, along with so many of our inspiring and international colleagues, have purposefully contributed to our work with knowledge and true passion. Their burning desire to share and exchange experiences has served as inspiration, motivation, and guidance. For that, I am profoundly grateful and blessed.  

The progress and initiatives we have seen in other parts of the world has meant everything for children’s palliative care in Norway and the work at The Norwegian Association for Children’s Palliative Care. Looking back at it all, I have learned that it is a heart-warming reminder of the importance of knowledge exchange.  Without the sharing of knowledge, nothing of what we have achieved would have been possible.  

It makes me proud to see that the number of people who want to join our work and our journey grows every day, regardless of whether they specialise in medical work, volunteering, construction, organisational work or simply express their wish to contribute in any way possible. 

This road we have walked together has been filled with demanding work, with battles, pain and tears and with what feels like an infinite amount of work over the years. At the same time, you all have contributed to making the road easier to walk.  

There are those who have contributed to my journey on an even deeper level than all others, and who deserve a special place. My daughter, Bella. A true rock in my life who has been through it all along by my side. And whose understanding of our cause is deeper than most others. As she put it herself:  

‘My life as a sibling would be completely different if there existed a children’s hospice at that time.’ 

Bella, who despite her youthful age, has experienced so many of the darker sides of life, and yet manages to be the light in so many other people’s lives. And who has always kept fate and positivity, even when ‘Mom just has to work for just a little bit longer’, because she knows the meaning and importance of our work better than most.

The personal pain I have felt along the journey can never be made up for by any award, but the award strongly stands for what the pain has led too. It was painful both to Isabell and me to see that Andrea did not receive the care we would have wished for from our medical system in Norway. Her death was the start of this entire journey for us. It was the spark of what has since become a big fire. We have worked tirelessly ever since to make sure that this pain, and everything we learned from it, at some point could turn into something good for others. Both of my two daughters, Andrea and Isabell, have been my guiding lights all along the road, and I pray that I will always have them with me to guide me further on. Dying children are and should always be our true teachers – and sharing is also about caring.

Natasha Pedersen, and her daughter Isabell, at the ceremony to mark the foundation of Andrea’s House Hospice.

Links and resources

About the author

Natasha Kjærstad Pedersen is a theologian and health worker and has completed a whole range of international courses and e-learning in palliative care. She is the founder and Chief Executive of the Norwegian Association for Children’s Palliative Care and is a member of the EAPC Board of Directors. Natasha is referred to as the ‘Mother of children’s palliative care’ in Norway.

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This entry was posted in BEREAVEMENT, CHILDREN'S PALLIATIVE CARE, INTERVIEWS & TRIBUTES, PATIENT & FAMILY CARE and tagged . Bookmark the permalink.

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