Issues

Parent of child with Down syndrome shares the value of human life

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Shelley Burtt, who had a child with Down Syndrome, wrote about why she was grateful for the time she had with her son:

As the parent of a disabled child, I have experienced firsthand the transformed perspective on life possible when one is given the opportunity to live with those who confound our expectations, who have too much or too little of a range of expected human traits, who experience life in a way that must remain opaque to the majority of normally functional human beings.

What my parents’ generation would have called Declan’s “mental retardation,” we termed his “developmental disabilities.”

But what was neither retarded nor disabled was an infectious enthusiasm for life which illuminated any interaction with him, and ability to give and receive love that was uncomplicated by the egoism, self-awareness, or self-consciousness of a “typical” child.

Parenting this child forced us to reconsider our conception of what qualities and capacities made life worth living; the joy my son clearly took in life and the joy he gave us compelled such a reevaluation.

Shelley Burtt “Which Babies?” Tikkun January 2001

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