Following up on my previous post, Finding Meaning in Suffering: Washington Post: What Is Suffering For? After My Sister Died, I Found the Answer., by Helen Andrews:
My sister was born with profound disabilities, the result of a genetic disorder. She never learned to talk. I don’t think she could even recognize the faces of her own family. She could react to people and things, like music, which she loved dancing to, but each moment was completely new to her and never connected to the past or future.
Like many other families in that situation, we received advice on how to understand my sister’s disability. Sometimes a disabled sibling makes life harder, we were told, but that’s true of every sibling. Focus on the positive, the things that make your family unique. My sister was praised for the purity of her joy and the innocence of her love. The rest of us could take a lesson from her, people said.
Though the advice was well-intentioned, I later saw that it was wrong — about what it meant to live with disability and about the purpose of suffering. …
Sometimes, focusing on the positive becomes a way of denying reality. Yes, there were joyous moments. But changing diapers gets a lot harder after 18 years, when the person weighs as much as you do. My sister threw tantrums and acted out. My parents couldn’t leave her alone in the house even to run to the store. It was like the most labor-intensive parts of infant care extended for years with no end in sight.
Hardest of all, the object of all this sacrifice couldn’t give anything back. My parents worked hard to give my sister a good life, and it wasn’t even clear that she knew who they were. …
Of course, loving a disabled child brings meaning to many people’s lives precisely because it is so difficult. I have heard many parents talk about this sense of meaning, and I have seen it with my own eyes in their daily acts of service. But this self-sacrifice can sometimes become an expression of vanity. …
Thinking about heaven helped me make sense of my family’s experience and the purpose of the sacrifices we made for my sister. The result wasn’t supposed to be a sister who could talk. That wasn’t what would await us on the other side. My sister would be the same. The transformation would be in the rest of us. We wouldn’t have to minimize the reality of her condition or justify it through a vain embrace of suffering. We would accept my sister just as she is. That is the perfection toward which we should strive and toward which our suffering on this Earth should be oriented.
Washington Post, Blessed by Pope Francis, a Boy With Cerebral Palsy Became a Symbol of Grace:
Michael Keating made headlines as a child after the pope picked him out of a crowd in 2015. He died this week at 21.
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