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Chronic Disease, Parenting

“I’d rather bury my child than leave him behind”: Mother of developmentally disabled child on redefining parenthood

"I'd rather bury my child than leave him behind": Mother of developmentally disabled child on redefining parenthood

As a mom of two, I found myself doing a double-take when I came across a recent Huffington Post headline: “Bury My Son Before I Die.” In the moving, difficult-to-read (and, presumably difficult-to-write) piece, the mother of a boy with lissencephaly who is “developmentally… like an infant in a 15-year-old body” describes caring for him and worrying what might happen to him as he grows older. “It goes against everything we believe about motherhood, but I’d rather bury my child than leave him behind,” she writes, before going on to explain:

I used to worry about Benjamin dying, but now, 15 years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.

I have learned to embrace motherhood with brutal honesty. I don’t actually want to see my son take his last breath. I don’t want to know life without him. For as long as I live, I will do whatever I can to keep Benjamin healthy and give him the best possible quality of life. His happiness is my happiness. He is no less than anyone else, deserves every right and consideration. As Benjamin’s advocate I can guarantee a strong proactive force. When I’m gone, I can do no more.

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