nineteen

Nineteen years ago today—six weeks before his due date, two weeks after a sonogram revealed an alarming absence of white matter in his brain, and a week before a scheduled cesarean at Boston's Children's Hospital—Calvin came into the world during an emergency cesarean at Portland's Maine Medical Center—in the middle of an ice storm. I guess that's how he rolls.

Seven weeks passed before we brought Calvin home from the hospital. At the time, Michael's employer did not offer parental leave (oh, how we could still use some) and, while Calvin was in the neonatal intensive care unit fighting to thrive, the college asked Michael to take on an ill colleague's course of classes in addition to his own. Thankfully, for our sake, he said no.

Every evening after work, Michael made the thirty-mile drive to Portland to be with me and Calvin in the hospital before spending the night with me in the nearby Ronald McDonald House where parents of sick children are provided meals, a comfortable place to sleep and, for some, a private place to grieve.

Halfway through those heart-wrenching and difficult first seven weeks, when Calvin became just strong enough to be transported via ambulance, he and I took up residence in our local hospital's labor and delivery ward. Every night for three and a half weeks, Michael brought me a home-cooked meal, which we ate together at a little round table in the corner of the room while Calvin slept. Our friends, Ta and Jerry, and Michelle brought us meals, too.

I hear parents remark, often lamentably, about how quickly their children grow up. I get the sentiment; I feel the fleeting passage of years in my life, too. In some ways, yes, Calvin "grew up" in a blink. But his nearly-imperceptible and in most ways halted progress has had a way of slowing time to a crawl; I mean, I'm still changing diapers after nineteen years; that kind of thing can have the affect of stunting time. But the protracted passage of time has led me to be mindful of every moment of the past eighteen years, and to have felt them deeply—beginning with the tragic sonogram, the fear, the feelings of grief and loss, the hopelessness and uncertainty, the joy and surprise, the frustration and resentment of raising a child like him. I've done and been through some difficult things in life, but nothing compares with this marathon. At the same time, I've felt the most extraordinary love for my nonverbal, legally blind, autistic, enigmatic, impossible child who has virtually been joined at the hip with a me for nineteen years. Suffice to say, it's been a wild ride; I'm exhausted and proud.

Last year, instead of celebrating Calvin's transition into manhood, I began his eighteenth birthday by cradling him in my arms like a baby again, my eyes stinging and welling up after four days of seizure-related worries, woes and sleep deprivation. The world looks blurry through watery eyes and wet lashes, and I thought about how much easier it would be to raise him if it weren't for relentless seizures and drug side effects that make him so irritable at time, and impossibly restless. 

This year, the day began as most do more recently, which was with a long and strong embrace from Calvin, including mutual back rubs, as he stood in his pajamas after I helped him out of bed and before I changed his soaking diaper and onesie and got him dressed for school. It has been nine days since his last seizure having avoided one on the full moon, so we have that to celebrate, too.

At nineteen, my sweet Calvin still cannot utter a word, put on his own socks and shoes, eat independently with a spoon, follow most instructions, turn a door knob, read a book, choose items at the grocery store, calm his body or be by himself. Still, there are moments of joy with my heartbreak kid, who can both exasperate me and melt me into a mess of motherly love. I guess, in that sense, we're no different than any other mother and child.