On the first day of my Religious Studies course I tell my students that I have had two religious experiences in my life. The first was the birth of my daughter. The moment I saw her, my world dissolved and I felt profoundly a truth “this is how much my mother loves me.” Two and a half years later I delivered my second child. I anticipated the moment and wondered what epiphany would greet me. There were perhaps two minutes of complete joy but quickly it was evident that something was very wrong. The pediatrician whispered questions, the doctor looked nervous, something was said about oxygen and his heart, and my son and husband were whisked away. Everything became quiet. Rudolph Otto the German theologian defined “the holy” as a numinous experience: a mysterious sacred moment of both fear and fascination. This transcendent instant can bring either bliss or terror. After the birth of my son I have come to understand the numinous in its most vital sense: truth holds opposites in tension.
Eight days later the kerotype confirmed that our son Joseph had an extra chromosome on the twenty-first pair. By then we were already planning for his open-heart surgery. The diagnosis was a blow but we were so worried about the pending surgery that insensitive questions such as “will he ever go to school?” filled me with rage, I soon dismissed them for more pressing concerns. Joseph did poorly after the surgery and was in the ICU longer than expected. He was hooked up to a respirator and heart monitor when the electrical grid in the north went down. That was the worst day of my life. Two children died while we sat with Joe. And then suddenly, he was better and we checked out of the hospital. Driving home I knew we were the luckiest people in the world.
That was four years ago. Since then my son has had a team of therapists to help him. Well-meaning people often remark about sacrifices we make to assist our son. It is true. Raising a child with special needs is difficult. The paperwork alone is daunting. And when he struggles or I see the way people look at him, it kills me. But, it is also true that the smallest milestone achieved is a triumph. No gain, no matter how tiny, goes unacknowledged in our family. It wasn’t always that way with us. As so many people predicted, our lives have changed dramatically. We have slowed down to keep pace with Joe. Soon after his diagnosis I remember a parent took me aside and said that my marriage would suffer from the constant strain of caring for this child. I believe that the opposite is also true. Driving home from the hospital, scared and teary I knew—more clearly than my wedding day—I was married to the right person. And to all those people who insist that everything would have been easier if I knew ahead of time, I had the chance to meet my son as the perfect being that he is, not as a diagnosis. That will never change for me. It is true that there was fear and sadness with the arrival of my son. But it is also true that we are lucky, loved, and filled with joy by the most ordinary achievements. Based on my experiences raising Joe I believe that sometimes the opposite is also true.
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