When we received Julia's diagnosis of autism, my wife kept repeating, like a mantra, "There must be a reason for this. Everything happens for a reason." Not being the religious type, I felt insulted by this implication. A reason for such tragedy? Impossible. Julia was such a happy, complacent baby. True, she came six weeks early, but she was a big preemie, almost six pounds, and healthy in every other way. And she quickly put on the needed weight, her cheeks puffing up like little pillows -- she had the softest, most squeezable cheeks. And a smile to go with them. I remember thinking, on a regular basis, How could you be cross when a little person smiled at you like that?
Her brother, 20 months older, seemed a dynamo of feelings -- angry, ecstatic, morose, irate, excitedly happy, excitedly wretched -- none small. Julia would stare at him like a baby Buddha, in wonder and tolerance. She stared at all of us that way.
It was the stare that wavered, around her 15th month. Not so much with us, but strangers. At the time, we thought it was just her personality. She was particular about whom she paid attention to.
One night our babysitter confided that Julia looked sad. I was astounded. A 16-month-old sad? Yet in the following weeks she would gaze into space with what indeed seemed like profound melancholy -- like the sorrow of a traveler grimly set for a journey from which she might never return.
At 18 months Julia had about 50 words in her vocabulary, normal for her age. But instead of using them to tell us what she wanted, or even pointing, she would grab our hands and tug us over. Her ability to point had disappeared.
At her 2-year birthday party, attended by relatives, her distress at being the center of attention became so unbearable she ran out of the room. We found her sitting in a dark corner in her bedroom. No promise of presents or treats could coax her back.
At our insistence, and despite his initial skepticism, our pediatrician referred us to a developmental pediatrician, who told us Julia fit into the "autistic spectrum." The prognosis? Severe behavioral delays. Possible repetitive, self-stimulating, self-destructive behavior. The distinct chance she might never converse, or be able to live on her own, or emotionally connect or relate to us. To anyone.
It was at this time that my wife started repeating, "Everything happens for a reason."
I fell into a bottomless pit.
Bob Berger is the author of Beating Murphy's Law.
When fate deals an unexpected hand
When colleagues or acquaintances told me how great their kids were, I'd brag repeatedly about my son and not mention my daughter. In the playground when Julia clenched her fists and shrieked ecstatically -- symptoms of autism known as perseverating -- I would cringe with embarrassment and drag her home. In the privacy of our home, I'd position my face an inch away from hers, hoping to engage her, but she'd wriggle free of any eye contact.
I felt she was rejecting me.
I began hating other families with normal children. Pregnant women with their dreamy, hopeful looks made me mad. I wanted the perfect little girl who stared up at me with curiosity and wonder just six months ago.
One night while away on business, I called home and asked my wife to put Julia on the phone. Her therapists were teaching her to repeat the words "I want," and then add the object of her desire, usually "milk" or "cracker." But that night, after I said hello, she replied haltingly, "I want...Papa."
I broke down in tears.
A year passed. At 3, Julia worked harder than any child her age, sitting for hours at a time doing drills for a therapist. Her persistence amazed me.
And slowly, my perception changed. I remember a playdate Julia had with a boy with cerebral palsy. Legs in metal crutches, he hobbled toward her. Poignant as this scene might appear, it drew no sympathy from me. His struggles to get what he needed from life were, to my mind, no different from Julia's.
I think about what my wife said, that everything happens for a reason.
Perhaps the reason is after the fact. Perhaps it's ourselves. Fate may randomly derail our lives, but what we learn supplies the meaning. We become the reason that things happen.Julia had to slowly relearn to speak, like a stroke victim whose speech has disappeared. She is very different from what I imagined, but I'm different, too.
Maybe if she continues to make progress, she'll read this one day and understand how she altered my perceptions, stretched my comprehension, and inspired me with her persistence in trying to get what she wants.
And we hope and pray that we may be privileged one day to read what she got out of the hand of cards life dealt her. How she made sense of it. How she used it to learn and grow.