happened. Some part of you is still way back at those first stagesâdenial and anger.â
âI wasnât asking to be analyzed.â
âOf course, you were.â
Grief canât be arranged in stages: at least not when it comes to autism. What is intended to be most comforting about Kübler-Rossâs blueprint for overcoming lossâthe predictability, the linearity, the end in sightâis not available to the parent of a child with autism. Yes, you experience anger and denial and bargaining and the rest of it, even acceptance, I suppose, but you experience it daily and in no particular order. With autism, forget stages, think revolving door: everything comes and goes. Think rollercoaster: youâre up, youâre down. In On Grief and Grieving, Kübler-Rossâs long-anticipated 2004 sequel to On Death and Dying, she writes: âI now know that the purpose of my life is more than these stages. I have been married, had kids, then grand-kids, written books, and traveled. I have loved and lost, and I am so much more than five stages. And so are you.â
JONAH WAS BORN nine days late. As Cynthiaâs due date came and went, there was time to think about the usual things, the important thingsâhow our lives were going to change, what kind of parents we were going to be. But we were fixated, instead, on what Jonah was going to look like. We lay in bed that last week staring up at the light fixture on the ceiling above us. It was round and translucent and had a rather large, lumpy protuberance in the middle. With the room in shadow, it resembled an extremely goofy-looking person. We called it Ziggyâa nickname for zygote.
We had reason to worry. Just the thought of my nose and my wifeâs nose amalgamated in the middle of our poor, unsuspecting babyâs face was enough to give us recurring and matching nightmares. There was also my height or lack of it to consider; and Cynthiaâs bad eyesight, her questionable taste in sweaters. Weâd lie in bed, spinning out tales about how our beloved four-eyed pipsqueak would somehow manage to overcome his parentsâ nebbishy genes. How he would somehow not suffer through childhood and adolescence the way we had. How heâd make do with my self-deprecating sense of humour and Cynthiaâs implacable backbone. But all our musings ended the same way: with little Ziggy unable to find a date for the junior prom, with him being picked last for basketball. We couldnât have been more of a cliché.
A while back, Cynthia and I had a single session with a family therapist, a couples counsellor reallyââCall me Jeff,â he said, shaking my handâwho told us that the key to happiness was managing expectations. The problem was simple, according to Jeff: the more distance you allow between what you want and what you can reasonably expect, the unhappier you are bound to be. German philosophers had a word for this: Weltschmerz. Jeff was a nice fellow, about my age, the kind of guy I might have gone to school with or played softball with. But I was looking for a breakthroughâ In one session, sweetheart? ânot the kind of information Iâd already read in a few thousand novels and poems, from Emily Dickinson to Philip Roth. Life is disappointment; expect less. Thatâs it. âCanât they tell you something you donât know?â I asked Cynthia in the car on the way home.
The thing is, before Jonah was born, weâd done exactly what Jeff was suggesting; weâd managed expectations. In fact, we were experts; we were Weltschmerz -free. Or so we thought as we braced ourselves for an extraordinarily funny-looking kid. Then Jonah was born and he was beautiful. I know every parent feels this way and that every parent canât, objectively speaking, be right. There have to be mousy, unpleasant, irritating kids. Where do mousy, unpleasant, irritating adults come from? But we were being