"Levend Verlies" or 'Living Loss' is the term that Manu Kierse introduced to describe the lifelong grief that you experience when you or a loved one is affected by a chronic illness or disability. It is about the sadness that can always flare up, expected or unexpected, and that sometimes worsens over the years.

You can experience Living Loss in all kinds of areas. For example, if you or a loved one gets cancer, if you care for a parent with dementia, if you or your partner develop a psychiatric condition or if an accident leaves you with lifelong disabilities. We focus on (grand)parents and practitioners of children with a chronic condition or disability.

The process of living loss is tough and intensive. Especially when you are confronted again at milestones with what your child cannot yet do or will never be able to do, when sadness overtakes you again or when you, as a spider in the web, are completely through it.

However, living with living loss is not just about the experience of loss. We also see that it is a process that gives strength. As a parent, you do everything you can to allow your child to participate. You become more creative in coming up with solutions, you have enormous perseverance, you become increasingly assertive, especially when it concerns your child, and you can enjoy the little things that really matter more.

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For parents who are looking for online help, support and reflection and for professionals to get a better understanding of the parents of children with severe life long disabilities, you can get more information on this website:

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https://levendverlies.com/wat-is-levend-verlies

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