Emily Rapp talks to Terry Gross about how her Christian upbringing informed her response upon learning that her son Ronan had Tay-Sachs disease:
I was definitely not identifying as a Christian long before Ronan was born. I think having that kind of a diagnosis, which really feels straight out of the biblical Job— I mean, it really does — it’s like you feel cursed and what Job does in TheBible is wander around asking everyone, ‘Why this is happening?’ because he doesn’t understand and I think that’s a little bit how I felt. People come around Job and they sit with him for a while and then they try to explain it and that’s when it all kind of goes horribly wrong, because what they should just do is sit and witness and say, ‘We don’t know. We don’t understand. It doesn’t make any sense. This is chaotic and crazy and I can’t believe it’s happened.’ So I think I didn’t want to pray, but I definitely felt that impulse that many religious people feel: that I should, you know. I had that whole I-want-to-broker-a-deal. I went to shamans in Santa Fe. I tried to find anyone who could give me some kind of answer, not to save [Ronan] but just tell me why this was happening or if he would be okay or what would happen to him when he died, which is something I was thinking about constantly and still do.
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