There is a whole host of people who take care of my son: his incomparable nanny, Gloria; two aides, ten therapists, three teachers; a pediatrician, a surgeon and six other specialists who oversee his eyes, heart, lungs, and brain; the provider who coordinates his social services; and the agency that sends us Gloria. The list goes on and on, and each Christmas I find myself remembering yet another generous soul who has contributed that year to caring for my son. A child like Evan can't get through a moment of his day without someone at his side, guiding him, helping him to eat or to use his communication devices, zipping up his jacket, and getting him on and off the swings. I dream of the day Evan can do it all by himself, but for now, due to his needs, he's a boy with constant companionship, and never-ending care.
When my daughter was born, I learned, as a first-time mother, just how all-encompassing the caretaking of motherhood could be. A friend, watching me breastfeed Josie as an infant, said to me, "I can't believe it. Everything she is right now at this very moment has to do with you. Your body grew her, now your body is feeding her. It's incredible." Indeed, my daughter's health, comfort, safety, happiness -- so much of it -- had more or less to do with me, and her father, of course.
And yet, as my daughter grew up, began to walk and talk and see to her own needs over time, the caretaking diminished. Soon enough she could dress herself, brush her own teeth, and make herself a snack. Not so Evan. With Evan, I have learned a different kind of caretaking, one that seems to come with a deeper vigilance. With my daughter I will always worry, but with Evan there is always more work, and constant concerns. He's not the kid I send off to school in the morning and catch up with at the end of the day or when he comes home. Instead, I wonder about his day: the interventions and instruction, the progress or not, the good mood or bad. When he's not home, I'm writing about him, or making calls about his therapy or care, or scheduling appointments with doctors, dentists, and hospitals. It's not a job that ends when he's in bed, or off at school.
Because of all the caretaking I do, over the years I have also had to learn the art of taking care of myself. It wasn't easy at first, listening to all the encouragement -- "Take a break, give yourself a rest, spend the day doing nothing." My first trip out of town after Evan was born happened to coincide with a severe setback of his in the NICU. "Go, go," the nurse said, literally pushing me out the door. "You can't do anything for him here. Go!" I called the hospital five times a day during that trip, and didn't schedule another until Evan was safely home. It seemed like a hidden message. If I were to leave, and stop taking care, things would not turn out well.
When Evan was in the hospital the caretaking took on a kind of vigilance unlike anything I had ever known in the years of caring for my daughter. Sure, I was always careful to keep a close eye on my daughter; my fears for her safety were palpable from the start. When she was a newborn, I awoke to her smallest cry. But with Evan, the vigilance took on epic proportions. If I didn't learn how to change his two-inch square diaper, who would? To relieve myself, even for a moment, of duty, felt like life and death, and in a way it was. "He seemed to get worse when we lowered the steroids," I remember telling a doctor about that same setback. "What if we increase them again?" Indeed, a day later the crisis had abated, my son's breathing had improved and it looked like he'd pull through.
Amidst all that vigilance and hard work, I did learn to take a break -- a day off from my hospital visits, or a night out with my husband. Lunch with a friend, a movie by myself. As Evan's caretaking has evolved, so too has my own ability to pull back, and away. This happens when I hand my son over to his teachers, therapists and aides, allowing them to step into the essential moments of care.
With my vigilance eased, I've been able to reconsider my own care as well. Sometimes it feels selfish to read a book or watch a movie, knowing all that Evan still needs. I should get out the braille books, or teach him how to button, zip and snap. I should play pattycake and sing, "Row, row, row your boat." Like any mother I feel guilty about all I neglect. And yet, if I allow myself, I also see how all the care we have taken -- me, his father, glorious Gloria, ten teachers, two aides, half a dozen medical specialists and more -- is on display right there, in Evan himself. He is happy, healthy, loved. He's learning and growing. These truths permit me the luxury of taking a break, the other side of taking care.