Motherhood's Heaven and Hell

I have never believed in Hell in the traditional Christian sense. This is in part because I am a Reform Jew and I was not raised to believe in any afterlife at all, but also, because I just can't picture any kind of afterlife where fire is the most horrible consequence. To me, Hell would be more like Dante's version, where at the very core of Hell was ice. The more Satan struggled, the more stuck he was. My Hell would have to be about being utterly limited, stuck in one way for eternity.

Being limited might not sound scary, but it is. And an insurmountable limitation imposed on your child -- a feared diagnosis for example -- well, that is probably among the worst of things. I learned what true Hell was the day that I was told by a doctor that my autistic son Nat was also "retarded." The word fell like a boulder dropped on my heart.

Up until that moment, I had been able to escape that dreaded word, and simply employ (relatively) easier labels, like "language-delayed." I had always run from Retardation, and in doing so, I could believe more things were possible for Nat. But when that doctor announced Nat's IQ test performance and told us this very big thing about him, it felt like she had stopped our movement forward. It was as if she had cut off our hope. I walked out of her office, wanting to kill her, my heart breaking.

Despite how sad it made me feel, I began to wonder if she was right, and what it would mean that Nat was retarded. Nat had always had terrible difficulty with talking, even saying the simplest things. He didn't seem to understand so many words spoken to him, or concepts like time, basic math, or even to look when he stepped off a curb. He showed a real lack of social skills, like laughing hysterically and loudly for no apparent reason, at the worst moments.

In fact, one day he was doing that horrible loud laughing, and I was so worn down with it after weeks and weeks of it, that I just sat there on the couch next to him, hating him, suffocated by hopelessness. Then, all of a sudden, I don't know how, I summoned up the energy to just tickle and poke him, saying, "What's so funny? Huh? Huh?" making him laugh for real. Maybe it was just from being tired, but before I knew it I was laughing, too. I looked over at him, and he was so goofy and cute, so obviously happy, that I just fell in love with him all over again.

Soon his laughter died down, and so did mine. It was over, and he was quiet, but I felt connected to him in a way that I never had before, in all his thirteen years of life. I understood then that there was a whole person there, and that nothing else mattered. He was not a mere label determined by a psychologist. The diagnosis had not changed him; he was still Nat. Our little flash of connection had lit up an entire world to me, full of potential and hope. So I guess that Hell might indeed exist, but then again, so does Heaven.

Susan Senator is the author of "Making Peace With Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts," and is working on her second autism book.

By Susan Senator |  October 7, 2008; 4:16 PM ET
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