When parents have long-term medical care, they often put their personal, social and professional lives on the back burner. In the longer term, this can lead to questions. Supporting parents to continue to develop themselves in addition to their parent/caregiver role without depriving them of either can help them.

"I put my own life on hold so that I could take care of him. But I keep asking myself: who am I besides that care? I no longer want to live after him, but live next to him."

Parenting

The way in which parents fulfill their role as father or mother changes due to the illness of their child. For many parents, parenting consists of a dual role in which they are a father or mother, but also a caregiver for their child. As a result, parents are sometimes searching for ways to combine those roles and enjoy the closeness of their child

"I just want to be a father and let him be a child. A teenager who does teenage things. But the fear of the disease is so in it that it is sometimes very difficult. I still stick to that role of protector."

When families face serious illness or possible death, old dreams and expectations about the future often need to be let go. Ensuring that a possible death takes away all of their child's future often plays a major role, even though parents often find it difficult to express this. But after a period of loss and letting go, parents often manage (sometimes with guidance) to find new goals and new meaning for themselves and their family, more often focusing on the here and now, and experiencing valuable moments within their family.

"Then I danced with her in the room. And actually cried all the tears I had, because she could never walk. But then I said: we're going to give you the best life there is."

Direct and release

Many parents feel that they have to give up control during the disease process.
They feel powerless because the disease invades their lives without them having a grip on it. In addition, they do not always feel sufficiently involved in decisions that are made. It can help parents to regain control in other aspects of their lives.

"You just don't have a grip on it. I put a perfectly healthy child to bed, her backpack was ready in the hallway in front of the preschool. The next day she was in a coma. You can plan what you want, but life lives itself. "

While caring for a seriously ill child, a large part of the parents' experience is focused on the sick child. But parents are also part of the world around them. Sometimes they can draw support from this, but it can also lead to a feeling of loneliness or misunderstanding, because they get the feeling that the world around them no longer matches what they experience themselves. In addition, the confrontation with healthy families can emphasize their own 'being different'.

"Sometimes I'm in the park with friends who are all busy with their healthy children and then I feel very alone. They have no idea what it's like for us to go through this."

(In)certainties and beliefs

During the illness, parents have to deal with many certainties, but also uncertainties about the illness and the future prospects of their child. They have to relate to this. Would you rather know or not? Can you still hope when the disease is so serious? What does it mean if you are faced with a possible death? For some parents, beliefs are important.

"The science is always there in the back of your mind. You do have blue skies, but there's always that thundercloud at the back, so there's something you know is coming, but you don't know when yet. And that's going to be very exciting So you always carry that with you."