Glass Child

In my dreams, it turns out we were all wrong about Robby's death. We take him to the funeral parlor where they replace his blood with embalming fluid, but on the day of the visitation he sits up in the casket. Despite our joy and relief, this version of my little brother is listless and silent. We take him home and try to resume our lives, but he hovers in corners and stares into space.A searing guilt chews away at my insides. If only we had waited, if only we hadn't drained his blood. This dream scenario plays out so often that in the hazy space between sunrise and waking I sometimes forget that he isn't just down the street, waiting for me at home, just out of my line of sight. We collect pieces of the people we lose. Baby teeth, artwork, private journals. We analyze the dust we see in beams of sunlight—is that a flake of his skin? Are strands of his hair lurking in the floorboards? They hang around the house, and we wander from room to room, weeping like penitents at an altar. I was born into a grieving family. My parents were young, my father's burgeoning career as a rockstar in Riverside, California, pushed to the side to raise his two daughters in suburban bliss on the other side of the country. My sister Bonnie succumbed to a fever one night and slipped under the bathwater just a week before her third birthday.One year later, I came into the world. Some of my earliest memories are graveside, tending Bonnie's flowers and polishing her headstone with baby oil. My mother would say, “If we hadn't lost Bonnie, you never would have been born.”In our house sat a wooden chest full of Bonnie's things. Every year on her birthday, we gathered in the living room to open it. My parents cried over her baby clothes while my younger sister Lori and I passed around her toys, always begging to keep them and wondering why we couldn't.I often dreamed about Bonnie throughout my early years. In those dreams, she wore a baseball cap with her name written in glitter paint while we ate Cheetos together. She would ask me how our family was doing, and I would give her an update. When I still believed in heaven, I thought I had a special psychic bond with the sister I never met. Now I know that this was the result of my young mind trying to make sense of something unfathomable. My brain has been trying to understand why I deserve to be alive and healthy since I first understood what that meant. I first met my baby brother Robby at a hospital in Rockford, Illinois, on a chilly October morning. I was four years old. I remember that day in brief flashes: my dad pulling back a curtain to reveal my mom, disheveled and still round in the belly, smiling widely at me, dad sitting me straight up in a chair and nestling a warm pile of blankets in my lap, “cradle his head,” pink, doughy baby flesh, squeaking softly at me.Lori is only fifteen months younger than me. Holding Robby felt different. Older siblings understand this immediate and innate desire to protect. From that first moment, I had a sense that he was mine in some way. I felt this fragile human in my arms and suddenly my identity shifted. I cooed at him and pet his silky hair.It was unfathomable in those moments to think that his neurons would begin misfiring and hijacking his musculatory system. All big sisters meet their new sibling at a hospital, but few return so frequently over the years to stand vigil over that sibling's suffering. My brain wanted to protect me. Robby's brain betrayed him. Robby had his first tonic-clonic seizure when he was in the first grade. He went stiff and fell out of his chair, blinking rapidly and thrashing around. The poor substitute teacher yelled at him to quit joking around, but realized her mistake as he began slamming his head into the metal leg of the desk, bloodying himself.Seizures don't look as violent as they do in the movies. Watching Robby's seizures, it was easy to understand why people throughout history have associated them with demonic possession. His body would go rigid and tense, his right arm stretched upward, the corners of his mouth distorted. Then, staring at nothing, he would jerk rhythmically as if someone invisible was shoving him.I remember my sixth-grade English teacher pulling me out of class that day, walking me down the hallway to the front office, patting my arm, telling me everything would be all right. How could she possibly know? I didn't even know what a seizure was.Ever the optimist, Robby came home from the hospital that first time sitting triumphantly on my dad's shoulders. He threw his arms in the air when he saw his sisters: “I got to ride in an ambulance!”This wasn't, as we had hoped, an anomaly. On one particularly bad day, Robby had ninety-six seizures. Dad created a nest of pillows and blankets for Robby on the floor of the living room, a safe place for him to seize.The first time Lori and I witnessed a seizure, we ran out of the room to hide under our pillows. Dad followed us as soon as it ended and yanked the pillows away. I've never felt more shame than I did in the moment he chastised us. He whisper-shouted that we couldn't imagine how scared Robby was, that we couldn't show him we were scared, we had to be brave, to love him and protect him.I never left Robby's side during another seizure. I watched each one, unable to do anything but wait. We learned to keep him comfortable, to move anything hard or sharp out of his way. We learned to count how long they lasted. Every seizure started a timer.I didn't know why we had to count them. I thought the timing meant something. I see now that it was my parents’ way of trying to maintain some modicum of control over the situation. They couldn't make it stop either.What they did was keep a detailed log of every second of every seizure. In their attic to this day sit dusty boxes filled with notes on seizure times, hundreds of hours of footage of Robby having seizures, and stopwatches. They would present this information to his doctors, hoping it might give them some clue as to why this was happening or how long it would last. His epilepsy was a puzzle no one could solve.The hospital became more familiar: MRIs, surgeries, and emergency visits due to seizures that went on for over an hour without stopping. During longer stays I went to friends’ houses for weeks at a time.Eight-year-old Robby was crushed to find out he had to spend Easter in the intensive care unit. We promised him that not only would the Easter bunny come, but he would get two baskets. My sisters and I brought him a pack of B'loonies. We rolled the gooey plastic into tiny balls, plugged them into the straws, and filled his hospital room with sticky balloons.The doctors mapped his brain to find out which part was defective. Using an electrical probe, the surgeon prodded the tissue to test for certain functions. Robby was awake; he thought it was neat that the doctor could use his tools and force him to wiggle his thumb.They found a lesion that might be causing the epilepsy. The children's hospital had to buy a specialized tool just to remove the mass. The lesion wasn't something that could be plucked out: It had to be shredded.The waiting room during that ten-hour surgery felt like sitting in the hull of a sinking submarine. Windowless, cramped, filled with stale air, billions of gallons of water threatening to crush the walls and drown us all. I tried not to think about my brother's skull cracked open, the doctors scraping into his gray matter with what amounted to an expensive cheese grater.When the surgeon came out to tell us how it went, he brought a picture of Robby's brain, holding it like a prized fish, perhaps not realizing that I was only twelve and unprepared to see it: scalp peeled back, a bloody lump of flesh, whiter than you would think, laced with blue veins. I remember thinking it looked hairy.A few days after the surgery, Robby asked to remove the bandages and see his stitches. My parents must have done a good job downplaying the seriousness of the procedure. Once they handed him a mirror, he took a long look at his shaved head. A curved scar wound the length of the left side, skin puckering around the stitches, stained with blood and iodine. His face distorted in horror at the gore. “I look like a baseball.”When we were finally allowed to see him, my sisters wanted to cuddle him, to lie in the hospital bed with him. I was afraid to touch him. He was unshowered, sticky with medicine, stuck through with IVs and breathing tubes, covered in tape.To absolve myself, I wrote a short story about that moment when I was in high school. At the end of the story, I don't hesitate to embrace him. A comforting revision of history. I would give anything to go back to that day and pull him close, breathing it all in. If hope is the thing with feathers, then guilt is the thing with claws. They both perch in the soul, but guilt digs its talons into your ribs and carves the bones down to the marrow. The surgery didn't stop the seizures. It did affect his motor strip and partially paralyzed his right arm. He woke up from the anesthesia, had a seizure, and asked the doctor, “Did I have my surgery yet?”We saved his life over and over. Catching him falling from playground equipment, dragging him out from under a rack of cutlery at the mall, running out of French class to call an ambulance to get him from the football field.As he got bigger, it got harder to keep him safe. It feels like we brought him back from the dead many times: anesthesia, medically induced comas, bouts of unconsciousness. But he always woke up eventually. I always had hope that he would. Maybe that's why I keep having the dream. When he was seven, we asked Robby “what are your favorite things?” expecting him to say something like the color blue, lizards, et cetera. Instead, his list read: winter, darkness, the ocean, endurance. Lori, Robby, and I were home alone one afternoon when she screamed at me from down the hall—Robby was unconscious on the couch, turning blue as he tried to draw occasional rattling breaths. She started to give him CPR; he vomited into her mouth.I got hold of Mom and she rushed home from her errands. She and Lori half-carried, half-dragged him down the stairs while I got the car running, opening doors and making a space for him to lie down in the back. Once they pulled him inside, I sped us to the hospital, fear and adrenaline shooting down through my legs and pressing against the pedal. We flew down the highway going over 100 mph with the flashers on and made it in time for them to resuscitate him. He had aspirated during a seizure.After a long recovery, Dad took us all out to dinner where Robby presented Lori and me with some beautiful pieces of jewelry to say “thank you for saving my life.” A sterling silver necklace with filigree flowers and a pink crystal.I burned with shame. All I had done was drive the car. Lori didn't even think twice before starting CPR. Would I have done the same? I'm still not sure. Mixed with the fear of losing him that day, there was also disgust: for the vomit, for the stench of him soiling himself in the car. And when I think back on it, those feelings of disgust bring my guilt bubbling to the surface all over again.I wore that necklace to his funeral. His biggest fear was being a burden, but my biggest fear was losing him. He had a cluster of seizures, like he had many times before. He begged my parents not to take him to the hospital because he had a date with his longtime crush lined up on Saturday and he knew that if he got stuck in the hospital, he'd have to miss it.During the last seizure, his heart stopped. Mom realized he wasn't breathing. They performed CPR, but this time he didn't come back. He was twenty-four.On some level, I knew this could have happened during any of the thousands of seizures he had before. But because it hadn't happened, it had started to seem like less of a possibility. He was going to grow old and live with me and my sisters. We argued over who got to keep him first.The last thing he did was eat Mexican food while watching Mr. Bean. He would have loved that. We buried him in the outfit he had already picked out for his date: corduroy pants and a nice cardigan, laid back. He would have loved that too.I feel guilty that I wasn't there that night. If someone else had been there, if I had been there, would I have done something different?I feel guilty about writing any of this down.I feel guilty that this essay is more about me than it is about him.I feel guilty that you didn't know him. I can't possibly explain him to you like this, no matter how hard I try. Robby could diffuse any awkward moment by peppering in a well-timed joke. He didn't want anyone to pity him. He wanted to skateboard without a helmet because God forbid anyone look at him and know he might have a disability. He loved playing video games, listening to the Beatles and Tenacious D, and does that mean anything to you?I feel guilty because I'm sure that in these pages I've told you things that Robby wouldn't want you to know.I feel guilty about every time we sat down and he wanted to share a TV show with me, but I brushed him off or refused. Every time we got in my car and he asked to hear a song and I told him no. Every time he told a story and I interrupted to correct him or tell him he was wrong.You want to tell me what everyone wants to tell me: that he knew I loved him, that we had a special sibling relationship, that I can't torture myself. And I want to believe you.Through every emergency, I always had hope that he would wake up again. And he did, until one day he didn't. Maybe that's why this still feels like a dream. Maybe that's why in my dreams, he wakes up.