Robert has cerebral palsy, and he has weathered multiple complications in his seven years. I don’t know what that’s like, to mother this beautiful boy through every hour of every day. I knew how to sister an amazing brother for thirty-one years longer than the doctors thought he’d be around. But much as I loved my brother, sistering is not mothering.
I think of my own mom, Mengia, who loved Duane so fiercely and proudly, who still gazes at his photo every day ten years after his death with a look that says, “I got to be his mother.” She’s an honorary grandmother to Rob too, and an advocate for the disability community in our neighborhood. “Of course it’s hard,” she’ll say. “But it’s hard in a different way than people might expect. And it’s much more wonderful than they can imagine. I’m sorry for people who are scared of suffering. I don’t think they will end up knowing how to live.”
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