The Still Point Of The Turning World Read Free Page A

parents in much of the world.
    Parenting advice is, by its very nature, future directed. I learned to avoid the magazines in the pediatrician’s office that were full of articles about optimizing a child’s sensory and language experiences in order to fire the right cerebral neurons; cures for colic; the politics of playdates; clothing “lines” endorsed by this or that ridiculous celebrity spokesmom.
    Future, future, future. During this time, just before I boycotted parenting magazines, I came upon this quiz in a popular magazine that was marketed for people of my age, educational level and “life stage”:
    What’s the hardest challenge for parents today?
    ~ Supervising cell phone and Internet use
    ~ Kids’ friends raised in more permissive homes
    ~ Helping kids deal with more tests and pressure in school
    ~ Kids today are growing up too fast!
    Here’s how the options might read for the parent of a child with Tay-Sachs or another terminal illness:
    ~ Waking up every morning dreading the next stage of this disease (paralysis, blindness, deafness, spasticity, seizures, death)
    ~ Learning who your friends are, and how sickness makes people uncomfortable
    ~ INSURANCE
    ~ Kids with Tay-Sachs will never grow up!
    But in the months following Ronan’s diagnosis, after the initial shock had worn off, the day-to-day routine with Ronan was peaceful. A typical day included cuddling, feedings, naps. He had water therapy and acupuncture. I worked during his naps. There was a baby dinner (peas!), bath-bottle-sleep, dinner for adults (takeout). Not so atypical of a family juggling schedules and running a typical baby day. We did our best for our kid, fed him fresh food, brushed his teeth, made sure he was clean and warm and well rested and . . . healthy?
    Well, no. The dreadful hitch in this otherwise middle-class and privileged domestic snapshot was this: Ronan would never benefit from any of Rick’s and my efforts beyond what he received
in the moment.
I told him I loved him and so did his father, even if Ronan never understood the words. I encouraged Ronan to do what he could, although he was without ego or ambition. Babies aren’t investments that accrue interest. They’re not stocks or bonds or diversified portfolios to be reorganized in “these tough economic times.” They’re people, and, like all people, they can and will eventually die.
    I didn’t always think like this. During my pregnancy and throughout those first nine months of Ronan’s life, I devised an ambitious list that I hoped would lead to important development outcomes for him: I would talk to him in different languages (language development); pick him up when he cried (attachment issues are crucial in the first year of life); breast-feed exclusively for a properly developing brain (I took herculean and often expensive and painful measures to do this). Like his father he would complete crossword puzzles in record time. Like me he would be physically fearless and an adventurous eater. He’d be fun but levelheaded, loyal and fair and smart. I would teach him how to ski and read and travel on a bare-bones budget. Maybe he would invent something world changing or build space rockets or become a fashion designer who made clothes from recycled trash. He would be generous and gorgeous. Women or men would be falling all over themselves to go out with him. I was not above my own prodigy dreams.
    But no matter what I did for Ronan—organic or nonorganic food; cloth or disposable diapers; attachment parenting or sleep training; breast milk or formula—all decisions that mattered
so much
to me in the first few months of his life, he was going to die. End of story. Or was it? As I pondered these questions in the early hours of the morning and late hours of the night, I began to understand that the story of my son’s life would end but that what he had to teach me was as epic and mythic as a creation story. To prepare throughout a child’s whole life for the