My grandmother always told me that it was the greatest honor to be with someone when they took their first breath and when they took their last breath. She was a very wise woman. However, when managing this whole life and death journey, the life part seems infinitely easier and full of joy and we dread the death part, preparing ourselves for a journey of great sorrow, guilt and loneliness. But, it doesn't have to be that way.
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The diagnosis of a chronic and/or life-limiting illness in a child can overwhelm a family. While parents are coping with their own grief and fears, they also have much to learn and many decisions to make. One of the biggest challenges they face is how to talk to the child about the illness.