You realize you don’t have a baby book for your son. What if something happens to you and there’s no baby book? For 22 years, you’ve kept the photos, footprints, and plastic hospital bracelets in a box, somewhat organized. Still, there are no dates or milestones written on the back. You remember why, what survival feels like. And you remember that you didn’t want to remember.
Now you arrange his pictures across the dark wood of the kitchen table like a three-foot-by-five-foot memory game, images face up: respirator stage, oxygen hood stage, incubator stage. Not-yet-sure-if-he-would-live, dying, recovering.
You’re surprised to see a pattern in the pictures. It’s his hands, fingers in different poses, waves, pointing, like maybe he was trying to send a message. His hands were the only part of him that didn’t have a piece of equipment attached, so maybe he just liked the freedom. Then again, he’d throw them back against the blanket sometimes in what the nurses explained was a startle reflex. He startled a lot in those days and also stopped breathing when you talked to him. The nurses said not to take it personally, but you sat and (quietly) cried next to him anyway. You began to detest oak rocking chairs and white linoleum. But you never hated the equipment.
When you tell his dramatic birth story, you always make sure you say you did everything right in pregnancy. Your doctor neglected to show up for the emergency surgery. You never found out why and what would it change anyway, except you could sue. Your energy turned instead toward a tiny human being. Years later, you see your doctor on television being arrested for spray painting graffiti on her neighbor’s garage.
You stop going to church because you blame God. You develop a surreptitious mean for perky mothers who brag about child development, milestones, and how easy things come. Rolls of baby fat on healthy babies disgust you. You keep praying, in case it isn’t God’s fault. Then you realize it’s your body that failed your son, not your god.
The parent support coordinator stops by the elevated bed one day (your baby’s jacked up like a car that needs work) and exclaims that your son’s fingertips look just like yours. Of course, his eyes are blindfolded to shield him from the lights, his lips are taped to the respirator, his nose has a feeding tube in it, and his ears aren’t fully formed (you have to roll them out when you arrive each day) so it’s the only body part she can drum up a comparison. You’re suspicious of everything. Still, you like to put your fingers next to his. Later, the coordinator gives you a business card for a marriage counselor. “Only half the couples make it,” she says without emotion.
You wonder why the intensive care nursery doesn’t have privacy curtains for each baby. You ask if you should leave when families gather to say goodbye to their one who won’t make it. You are told to stay and you don’t have the nerve yet to disagree, to stand up, to walk away. You watch four babies die within 15 feet of your oak chair; four families’ worth of rubber legs melting into grief.
When he comes home after 72 days, you answer the front door to the old lady across the street. She stands there, smelling like hair spray and body odor, holding a red rose, which is tucked into a damp paper towel and aluminum foil. You invite this woman to peek at your sleeping baby because you are proud, but she gasps when she sees him and hurries away faster than you knew she could move. You believed four pounds looked enormous.
You find the card and go to the marriage counselor at night, since days are now filled with occupational and physical therapy sessions. You are given a workbook about how to be sensitive. One evening you rip the workbook in half while your husband stands at the bathroom sink and watches you go psycho in the mirror. You tape each page before the next session. You use packing tape.
Your baby’s muscles are very tight. Maybe he has cerebral palsy, maybe not. You drive to Tampa to meet with an Iranian surgeon who gives faces to babies born without faces. He has before, during, and post-surgery photos of these infants decorating the hall, plus an extra one of an adult whose head was crushed with a baseball bat. He says the cracks in your son’s skull closed early and now his head is too narrow for his brain. He might do surgery; he might not. His accent is hard to understand but he won’t repeat himself or answer your questions because you are a woman. At the next appointment, you make a list of questions for your husband to ask. You secretly tape the surgeon with the recorder you used at your old newspaper job. You push play from the side of your purse. You wonder if it’s illegal. You could give a shit.
When your son turns four, you put together a slide show to the song “Coming Out of the Dark” and deliver it to the neonatal intensive care unit. Maybe a mom like you will watch it. You include various photos of him doing normal things, the things you wondered about as you sat under heat lamps and stared at a one pound, 11 ounce body, especially the dent in the middle of his chest. You waited for it to rise and fall in its ragged way and when it didn’t, machines buzzed and binged and you yelled at the nurses to run.
When you pass the candy aisle in the grocery store, you always notice the big black bag of M&M’s because someone told you that’s how much your baby weighed. But then he lost weight and contracted pneumonia and soon resembled a tiny sick bird that had given up and your phone rang at 3:00 a.m. and nothing good ever happens when a phone rings at 3:00 a.m. -- and a doctor said you and your husband should drive to the hospital to tell him goodbye. You looked down at his dark head under the hard plastic, a head the size of a tennis ball. You knew he was trying to look up at you, but he didn’t have the strength. You felt your legs loosen; it was your turn and you weren’t ready. You can never be ready.
You develop the mouth of a sailor. You feel sorry for the kids who bully your son because you take names, especially the boy (Vincent) who lined up kids on the playground in order of importance. Your reputation for confrontation is legendary at the elementary school. Regular mothers somehow look and seem dangerous and so you avoid them and their coffee, too. People call you an advocate and good for you. You tell them to fuck off and the PTA, too. You make sure your son is warned before the fire alarm goes off at school because he will fall to the ground holding his ears.
You study Buddhism and the meanings of suffering and only then does anything make sense while you still breathe thickened air on earth, the kind of air where you wait for “the other shoe to drop,” or so your new therapist explains. You wonder what shape you will take in your next life, if you will be a mother again, if you’ve learned the lesson. You don’t feel any wiser. You take off your cross. You put it back on. Mary Mother of Jesus Prayer Flags Meditation Beads Navaho Bear Claws and Owl Feathers. Good Gods protect us all, for we are innocent.
You recall the conversation you had with your son a week ago when you threatened that he’d better make decent grades in college and stop wasting your money. His fourth try. He has official labels and issues and refuses to register with the disability office. Good for him, and you can’t believe what an ungrateful mother you’ve become, how much you’ve forgotten or maybe just stuffed deep. And now, because of the pictures, you are made to remember how his whole hand was the size of the tip of your pinkie finger, his raw wrinkled skin and blue veins, not ready for this world.
You put your forehead on the dark wood of the kitchen table and let the sobs come from the old place.