Greta is a typical 11-year-old 6th grader who wants to go to school dances and hang out at her friends’ homes, but what is different for Greta is that these experiences always include a parent or nurse to accompany her. Greta lives with Nemaline Myopathy, cruises in a power chair, breathes via a tracheostomy, and needs suction to ensure her airway isn’t blocked. Greta’s parents, Lyn and Kate, were vulnerable and explored with us some thoughts on secondary grief - the struggle that comes with witnessing grief over limitations, barriers, or independence. While they don’t lament on this grief, they keep a “make it work” attitude to navigate life and even give listeners a few tips on how they have built resilience and independence into life with a medically-fragile pre-teen.

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