We woke to a seal’s bark from the bedroom Riley shared with his younger brother, Desmond. I rushed to their room expecting to see Desmond standing in his crib, teary-eyed. Instead, I heard Riley making that guttural sound, his lanky body crouched over his bed, on his hands and knees like a woman in labor. “It’s not Desmond, it’s Riley!” I yelled to my husband, Lee.
Lee carried Riley from his bed into the living room. My first-born appeared to be waking, so Lee stood him on the rug. His eyes were open, but he wasn’t looking at us. For a second, he stood on his own, but then collapsed, straight down, his head missing the soft carpet, instead hitting the stone floor of our living room.
For a second, I stood on my own, in silence. I knew the MRI results we’d received from the doctor two weeks before were worthless. Riley must be bleeding from the brain for the third time.
Lee transferred Riley to our bed, scrambled into clothes, and put in his contact lenses. Waiting for the ambulance, I kneeled by the unconscious Riley. I yelled for him to come back to me. He did for a second and hugged me. Then, he was gone.
After my mother arrived to babysit Desmond, I raced to the hospital to see Riley. The walk through the hospital that night blurred, as if one or both of us were already in our next worlds, seeing each other through the scrim between them. I stood by Riley’s bed. “Do you want to see him before they induce a coma to control the seizures?” a nurse asked.
“Riley, it’s your Mommy.” His arm jerked. Every time I spoke, it happened. I wanted it to stop. I didn’t want it to stop. I kept looking up. I didn’t feel my son’s presence in his body anymore, but his body was all I could reach of him.
He never came back to me again.
Riley’s first hospital visit had been sixteen months earlier. He began complaining, “Mommy, my nose hurts. Mommy, my nose hurts so bad I can’t stand it.” He sniffed rapidly, then screamed in pain. Within minutes, he vomited all over the floor and lost consciousness.
The ER doctor informed us of Riley’s birth defect. “Sit down,” he said, motioning to the orange chairs inside the curtain-lined hospital room.
As I squirmed in the uncomfortable chair, absentmindedly rubbing the armrests, I looked at the plastic bag next to my foot filled with Riley’s shoes and clothes and noticed how handsome Lee looked in his white dress shirt and orange striped tie. He’d kissed me a few hours ago, right before he’d left for court. I thought about what our lives had been like before children—the space Riley opened and subsequently filled. Did the people we were before he was born still exist?
“Your son has a bleed in his brain. It’s called an arteriovenous malformation, AVM, a blood vessel malformation he was born with. It’s bleeding into his left ventricle. This is treatable,” he said.
I grasped the word “treatable” like a security blanket.
He saw my expression and shook his head. “In all my years in the ER I have never seen a child with this.”
Lee and I learned later that nobody had ever seen one like it.
“It is extremely rare. We aren’t equipped to help him here. I’m going to work on his transfer. I’m so sorry. I have a four-year-old son at home.”
During Riley’s seven-night stay in the UCLA Pediatric Intensive Care Unit (PICU), we learned he would recover this time without medical intervention, but his AVM was inoperable, due to its location and unusually large size. It was a miracle that he recovered from his first bleed without any deficits. The AVM’s weak vessels could burst and bleed at any time, and there was nothing to prevent a bleed from occurring. The chance of his AVM bleeding again was 1-3% yearly, 25% over 15 years.
One doctor said, “A woman could live her whole life with one, through the physical strain of labor, then be talking on the phone in the middle of the day and bam!” After the statistics and medical jargon, I appreciated his straight talk.
One night, Riley tripped and fell while running to grab a book for us to read. “We still have to let him run and be a little boy,” Lee said to me, rigid on the couch, after Riley’s bedtime routine.
His condition had many unknowns and every misstep and symptom triggered me. Was it his AVM, or his anti-seizure medicine? Could the impact of the fall cause a bleed? “I don’t know how to live like this . . . with this constant fear and anxiety,” I said to Lee, holding my head in my hands.
“It’s better than the alternative.”
“True,” I said, looking at the crown of dried flowers on the mantel that Riley had made for me in preschool on Mother’s Day and remembered him placing it on my head, “Happy day, Mommy.” When you birth a child, you get that child and everything that comes with him . . . good and bad.
***
Riley’s second bleed was less significant. He complained of a headache and spent one night in the hospital. There is a year between the second and third, and it’s the third bleed that takes his life. During that year, Riley recovered fully. He appeared to be a healthy, normal six-year-old boy. His front permanent teeth finally started to emerge after the loss of his baby ones from a fall when he was three. He began to learn how to read. His favorite book series was Frog and Toad. He loved the expressions on the animal’s faces. He laughed with abandon. The timbre of his laughter reminded me of wind chimes.
He grew and we penciled in more lines in his rocket ship growth chart.
He climbed trees. Any tree he could get his hands on. He hung from miniature trees on sidewalks and scaled tall ones in the park. At a playdate, his friend’s mom looked up and said, “Riley’s really high . . . should he be that high?”
He squatted on a thin branch higher than the fence and held the trunk with just one of his small hands. The sun haloed his hair through the green screen of leaves. A smile appeared on his face when he saw me looking at him and he waved. “You’re so high!” I said.
Sunlight flickered through the branches like a short-circuiting cord. “Please come down, sweetie,” I begged. My words erased his smile. I felt my stomach sink. He used his whole body to shimmy down the tree. I stood below him until he was firm on the ground and my arms wrapped around him.
He jumped on the bed with Desmond. They held hands while jumping and singing, “Three little Monkeys jumping on the bed. One falls off and bumps his head,” as Riley yanked Desmond down on the mattress, both squealing and laughing.
He opened a pretend restaurant in our living room called “Maco’s,” based on his favorite Mexican restaurant, “Paco’s Tacos.” He displayed a sign with an open and a closed side and created a menu. “What food do they have again?” he asked as he crayoned on poster board at the kitchen table.
His faves made it on the menu: lemonade, tortillas with butter, and burritos. With a pen and pad of paper, he took our order. His lowered brows reminded me of his expression at Christmastime when he dressed up as Santa and refused to be called Riley. “I’m Santa,” he exclaimed, and never broke character.
He served us burritos made from wheat bread that he mashed flat like tortillas until they were warm from his hands, and then stuffed with Goldfish crackers. Only his dad was brave enough to try them. I faked a bite before throwing it away. “Mmm . . . so good.”
Lee looked at him and said, “I can’t believe there is anything wrong with that kid.” But, we heard the ticking. We knew his AVM could bleed without warning. I comforted myself: Anyone can die at any moment; we just know what he can die from.
Lee scoured the Internet about AVMs, contacted the best specialists and hospitals, solicited numerous opinions. We received the same recommendation from nearly everyone. Riley’s AVM was inoperable. Radiation was the only possible treatment, but his young, developing brain was too sensitive. We should wait until he is seven.
There was one doctor, a radiation oncologist, who defied the other advice and encouraged us to radiate his AVM as soon as possible despite the risks: muscle weakness, numbness, and delayed development. A permanent limp was a high possibility due to the AVM’s location. He thought radiation might potentially prevent a devastating bleed. But it would take months of repeated radiation treatments to shrink the AVM, and because of the large size, years to eradicate. “Until it’s completely gone, unfortunately, it can still bleed,” he said.
The exam room was cold, devoid of picture books, toys, and cheery posters, with walls painted the ghost of green. Riley was wearing a vibrant spring green t-shirt and sitting on a spinning doctor’s stool. “Nothing’s going to happen on this pancake,” he said, and spun as fast and long as he could. “Bet you didn’t think that was going to happen!” he said, spinning again. I asked the doctor, “If it was your child, what would you do?” He didn’t have an answer. He shook his head and looked down.
“How can we radiate our happy, otherwise healthy, little boy’s brain?” Lee asked.
“I know, we can’t . . . not yet,” I agreed.
At home that night, I told Lee, “It feels like our son’s a guinea pig in an experiment.”
He nodded. “It sure feels like that.”
He looked at me, but he didn’t look at me. It reminded me of when he was trying to strategize for one of his trials, organizing arguments for future attacks.
“It feels like he’s just focused on the AVM . . . doesn’t seem to give a shit about Riley,” he concluded.
We decided to wait until he was seven. But seven never came.
We will agonize over this decision for years. It is called the bargaining stage of grief, where you attempt to postpone your sadness by creating “what if” scenarios.
A friend recommended a Guided Imagery therapist to help with Riley’s anxiety. Despite our attempts to protect him from understanding the severity of his condition, on the way back from a neurologist appointment, he said, “Mommy, I don’t think the doctors can fix my head.”
I looked at his face in the rear-view mirror, his angelic skin, perfect rosy cheeks, and asked, “Why do you think that?”
“Because I’ve been to so many doctors and they haven’t yet. Mommy, I don’t want to die.”
We decided to take Riley twice a month to the therapist and practiced with him at night before bed. We called them “breathing exercises.” We closed our eyes and visualized a healing light on our heads, picked up a key off the mantel, and opened a door to a meadow. At the peak of a dirt hill, we entered a cave and met the wizard. He gave Riley a soothing stone and shined a powerful light with his wand to Riley’s head. In my memory, I visualize it like it’s a real place. The exercises comforted us and gave us hope for a miracle. It felt like the only thing we could do to help him, inviting light into him, hoping he won’t yet go into the light.
For a long time after he died, I did the exercises at night to fall asleep. I did them when I worried about Desmond being sick or injured. After tucking him in, I’d lie in bed and force slow breaths while envisioning the healing light at the top of my head and Desmond’s. I’d go to the wizard’s cave and rub the smooth stone with my thumb. Then I’d walk down the hill and see Riley in his green shirt, spinning in the golden wisps, arms open, dizzy, and laughing, falling onto soft earth.
I stopped praying to God when Riley died, and in a way, the guided meditation replaced prayer. I am not very religious, but have used prayer, as many do, when I am scared. I think prayer or visualizing light is a way to avoid dark thoughts and create hope.
***
The day Riley died, I tried to put Desmond down for a nap, and Riley wouldn‘t stop making noise in the nearby playroom. As I crooned, “Rock A Bye Big Boy,” for the umpteenth time, Riley played with the carrier cage we use to take our cat to the vet, clanking and pounding it on the hardwood floor. He squeezed his entire lower half into the carrier and rocked it like a boat, singing loudly, “Row, Row, Row, Your Boat.” I called for him to stop, but he wouldn’t. I worried that his AVM could be bleeding again but refused to fall to that fear. Besides, there had been times when it had been impossible to get through to Riley, even before his first bleed. Out of nowhere, he screamed a wordless high-pitched scream. I stepped into the hallway and yelled, “Riley Thomas Brenner, stop this instant!” At least I think that’s what I said. I know it was the first time I had ever used his full name and I remember thinking how motherly I sounded—and not in a good way.
Riley loved being in covered spaces, especially oversized delivery boxes. I’d pretend I didn’t know he was inside. “I wonder what’s in this package?” I’d say.
I’d then open the box, “A little boy! What am I going to do with another little boy?”
“Again, Mommy, again,” he’d say.
I wish I had been playful that day instead of yelling. I wish I had come to him and said, “What’s a little boy doing in here? You’re not a cat!”
Instead, I yelled.
After Desmond fell asleep for his nap, I went and kneeled next to Riley, who was on the couch watching TV. I looked him in the eye and said, “I love you even when I’m mad at you.” He smiled and nodded. I don’t remember if I had ever said this to him before, but I certainly did then.
Later that night, before all the horror that lay ahead, I sat alone with Riley in a restaurant. “Date night with Mommy!” he had crowed. It was a cold March night and every time the heavy door opened, icy air blasted in. Riley kept huddling underneath my cashmere sweater-coat, caressing his face with it. I didn’t know why it bothered me, but I asked him to stop, and he replied, “But it’s so soft.” I tried to convince him to stand by the fireplace for warmth, but he was afraid of the fire, even though it was enclosed in glass.
I sat across from him at the table, shooting his portrait with my phone. His charcoal sweatshirt faded into the dark booth. Riley played Tic-tac-toe in the dim light.
I should have known something was wrong when he scribbled his X’s and O’s like a toddler. Should have known his brain’s weak vessels were bleeding again. Should have put down my cell phone and looked him in the eye. Should have noticed his half-eaten ice cream melting in the bowl.
***
That night, we woke to that awful seal’s bark. Lee transferred Riley into the paramedic’s brawny arms, his small head slumping on the man’s massive shoulder. He draped the blue throw from our couch over Riley’s slender body. This is the last time I will see the blanket shaped by my child’s body. Lee goes with the paramedics and I’m alone with Desmond, who is still asleep. I’m not sure how long I stood there after they left. Did I reset the alarm? Did I drink water? The house was cold, and I trembled, but didn’t do anything to get warm. I sat down in a chair at the kitchen table and rested my feet on the hard tile floor. I thought of Riley’s bare feet peeking out the blanket, his empty slippers next to mine by the front door.
***
Rumpus original art by Han Olliver
