Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant.

Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether.

It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support?

In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships.

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A big, big thank you to everyone who contributed thoughts and suggestions to this episode: