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Gifts and testimonies: sharing of experiences and memories among mothers of children with complex health conditions

Abstract:

The American online journal Complex Child, written by and for mothers of complex children, has documented an important collection of personal experiences since 2008. We analyzed 126 editions of the journal, in which our approach was to search in the writings for positive (and thus counterhegemonic) meanings, based on an experience that has found little room in the social imaginary except for that of personal tragedy. Assuming the position of these mothers as politically and historically situated, we identified the dimension of testimonies. Marcel Mauss’ theory of the gift, as well as the notion of social suffering in Veena Das, provide this study’s theoretical framework, organized in essay format. After organizing and reading the collection in light of our references, we identified four niches for discussion. The maternal constructions of happiness appear to be grouped around the ideas of “gift” and “legacy”. The notion of gift is associated with gains originating from the existence of (and care for) the complex child, while the idea of legacy refers mainly to a child or youngster who has passed away. Once the mother can see her child and the opportunities from caring for her child as gifts, she feels a practically imperious need to give back to the world.

Keywords:
Child; Chronic Disease; Personal Narrative

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