Family and Community

Many parents feel a sense of isolation as they care for their medically complex child. Their time and energy are limited. What they are experiencing isn’t easy to explain, even to those who want to be supportive. Connecting to others through a disease group can be enormously helpful. Finding a way to involve family and friends in the journey can help reduce the feelings and be beneficial in other ways as well.

Along the journey you will be meeting clinical specialists and other professionals who are there to guide you through the systems you will learn to navigate, and the decisions you will make.

Many families also develop close relationships with these professionals and come to see them as part of their “family,” or community. In fact, some of these relationships endure beyond the illness journey.

Some relationships may shift at this time. Some will grow stronger, and some will fade. You may experience some pleasant surprises and possibly some disappointment. This is all part of the journey, and sometimes things shift yet again. Be gentle with yourself and others during this vulnerable time.