A Mother’s Dilemma
by Mary Chris Bailey
There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues.—Washington Irving
Several days after our youngest son Bryan’s surgery, the hospital offered us the opportunity to bring his brothers, Donovan and Sean, in to see him. I thought it was because no one was sure he’d survive. Well children weren’t allowed in the Pediatric Intensive Care Unit (PICU).
My husband, Wayne, was reluctant. He thought it was too frightening for the boys at four and six. My theory was: imagining what was going on in the hospital was far scarier than the reality. I don’t know why I thought this. I guess more than anything, I felt it. I felt it was important for Donovan and Sean to see Bryan again, just in case. Eventually, my husband and I agreed. They would come to the hospital.
Bryan’s third surgery was called a Kasai procedure. This one lasted nine hours. Wayne and I were told his chances of surviving the operation were fifty-fifty. Bryan made it through the first hurdle and was still alive. For now, that was enough.
Around ten o’clock at night on the day of his surgery, Bryan was brought to the PICU directly from the operating room. Surrounded by medical personnel and equipment, he was whisked past us and into the unit, and my heart left my chest and landed on the stretcher. Disconnected and empty, I paced outside the unit. Wayne leaned against the wall and ran his fingers through his goatee.
The large double doors swished open, and a nurse motioned for us to follow. She led us to Bryan’s bedside. Even from a distance of a few feet, I couldn’t see his face. There were too many lines, tubes, and machines. He was lost in the mechanics of modern medicine. I had never seen anyone so dependent on machinery to stay alive. He was puffy, and the yellow of his skin from before the operation had faded, leaving him pale and washed out.
A tube in his throat was connected to a machine that whooshed and thumped with each breath forced into his lungs. A heart rate monitor bleeped in counterpoint to the whoosh of the ventilator. Tall silver IV poles clustered to one side with multiple blue pumps clamped to each one. On the pumps, lights blinked and strobed. His belly was covered with a gauze dressing five inches thick and a tube going into his bladder drained pink-tinged urine. All of this stole my breath and my hope.
At the time of Bryan’s surgery, the PICU was being renovated and temporarily relocated during the remodel. It was now housed in the oldest part of the hospital. The open room was cave dark with few windows and painted a 1950s institutional gray-green. Sound echoed off the walls like metal balls hitting the bumpers in a pinball machine. Old fluorescent lights dangled from the ceiling, casting a sickly yellow tinge over everything.
Like most ICUs, there was a constant barrage of sounds, flashing lights, and the coppery scent of blood laced with sharp chemical smells. Underneath was a quiet hush of lives hanging in the balance and the intensity of medical personnel pushing the balance toward survival.
Our boy needed that intensity—needed that push. Naked and exposed, Bryan’s body shimmered as if light was leaking from his pores. The large vein on his neck pulsed and bounded. His blond hair was darkened by sweat, curling at the ends, as it did on a hot summer day. I reached out to touch his lower legs and feet, the rest of him taken over by lines, tubes, hoses, and all types of strange equipment. Wayne stood to one side, his face a blank mask. It was the face he always wore when trying to keep his emotions at bay.
The nurse, a young woman with soft, deep-set eyes, explained everything keeping Bryan alive. Her words held little meaning. I looked at my boy and wanted to lay my body next to his, offering a mother’s comfort. Wayne leaned in to kiss his forehead.
Over the next several days, I whispered a litany in Bryan’s ear, much like the litanies I recited in the Catholic church as a child. It had a consistent message: life is worth living, so please survive. I recited the words to him over and over and over again.
“Daddy loves you,
Mommy loves you,
Donovan loves you,
Sean loves you,
Kipper loves you.
Christmas is coming.
Santa is coming.
Please come home to us.”
My prayer was soft and meant only for him. I doubt the nurses knew what I was saying. It was my litany of hope. I was calling Bryan back to me.
Time in an ICU is distorted, slowing down and speeding up at random, but mostly it crept.
I spent my days at his bedside and went home only to see his older brothers. While at the hospital, I kept vigil, except when the nurse forced me to go to the cafeteria. Food tasted like dust. Colors were washed out and muted. My world was a gray, tasteless place. Any time I left Bryan’s side, my body was on high alert, palms wet with sweat, a tremor raced up and down my spine. Fear chased me.
Wayne came to see Bryan in the evening after he got Donovan and Sean fed and in bed for the night. I had all but abandoned the rest of my family. Outside of the hospital, I rarely saw Wayne. We were like two trains running on different tracks. We’d meet up occasionally at the roundhouse before going our separate ways.
On the mornings when I had slept at home, the older boys got a kiss and hug before I left. Mostly they got a mother who was distant, drifting in and out of the present moment.
On the day of Donovan and Sean’s visit, the nurse who was at Bryan’s bedside most days was on duty. She had a competent if brusque manner. She was quiet, determined, and never flustered when changes in Bryan’s condition told her his hold on life was tenuous. She watched monitors, adjusted pumps, consulted with the physicians about these changes, and kept him alive. I trusted her. I was relieved she would be the one to guide my boys during their visit, because I didn’t have the strength to help Donovan and Sean process the experience. Today she would save me.
She brought them in separately. Donovan, the oldest, was allowed to see Bryan first. Now six, he had started first grade several months earlier. He walked to Bryan’s bedside stiffly, shoulders held high, doing his best to be brave. The nurse put her arm gently over him and explained the equipment. Donovan, a bright and curious child, looked carefully and thoughtfully at all the machinery attached to his baby brother. Gradually his shoulders relaxed.
PICU beds are kept high, so medical personnel don’t strain their backs to provide care. Because of this, the level of the mattress was even with Donovan’s head. As Donovan examined all the equipment, he avoided looking up at Bryan. The nurse asked him if he would like to see Bryan. Donovan gazed at the floor and nodded. She brought a stool to the bedside. He climbed up, and for a few moments, his body stiffened again. Donovan appeared frozen as he stared at his baby brother.
“Can he talk to me?”
“No, the tube in his throat won’t let him, but you can talk to him,” the nurse replied.
Exactly what Donovan said I don’t remember, except that he wanted Bryan home soon. Santa would bring new toys for Christmas, and they’d play together. Several times Donovan reached out to touch Bryan but quickly withdrew his hand until the nurse gently placed Donovan’s hand over Bryan’s. He didn’t let go until it was time to leave.
When Sean was brought into the PICU, he broke into a run to reach my side. At four, he didn’t fully register what was going on with his little brother. The nurse put her hand on his chest to slow him down and brought him to Bryan, walking hand in hand.
Sean and Bryan were especially close. Sean was always patient with his brother’s two-year-old curiosity, even when one of Sean’s toys ended up broken because of it. It never seemed to bother him.
Sean hopped up on the stool and told Bryan all about the latest spaceships he made with
Legos. He chatted on about our dog, Kipper, and wanted to know when Bryan planned on coming home because he missed playing with him. Sean’s innocent chatter wrenched something loose in me. Thick, fat tears wetted my neck and soaked the collar of my blouse. Sean didn’t understand that we didn’t know when and if Bryan would be home. Sean was smiling and happy to be at Bryan’s side.
Their visits over, the four of us stood outside the PICU. Donovan was quiet and hugged me fiercely. With Donovan’s arms locked around my waist, I bent down to hug Sean. His soft arms encircled my neck, downy hair brushing my cheek. When he pulled me closer, I could smell the tangy scent of his skin as our heads rested against one another.
“Tell the doctors to make Bryan better. Love you, Mommy.”
Untangling myself from their arms, I said, “Love you both.”
Wayne gathered the boys to his side and ushered them to the elevator. As the elevator doors slid shut all three waved, and more tears escaped the barriers I had erected the day of Bryan’s surgery. I walked back into the PICU, rebuilding the wall against my sorrow, stone by stone.
Several days later, I asked my sister Cyndi to fly to Oregon from the East Coast to help ensure Donovan and Sean had a happy Christmas even if Bryan was still in the hospital. Her flight arrived on Christmas Eve. There was a big surprise for her when she landed. Bryan was home. Peace settled into my bones and into the house, despite Donovan and Sean’s antics. They tumbled and made goofy faces, determined to get a smile from Bryan.
Christmas day, everyone opened their gifts from Santa. Bryan watched all this activity with interest while nestled in my lap. A smile caressing the corners of his mouth, his eyes followed the older boys as they ran through the room, holding up X-wing fighters making raucous firing noises.
Bryan slept off and on throughout the morning, jerking awake as space battles erupted around him. He rebuffed my attempt to lay him down for a nap. He was content to doze in my lap and remain part of the action.
Our neighbor, Margie Boucher, invited us to her house for Christmas dinner. The smells of Christmas filled the Bouchers’ home, roasted turkey, cinnamon, and apple all laced through with the nose-tickling pine scent of the Christmas tree. Bright reds and greens decorated the table. Seated around the table were Margie and Richard, their three kids, our three, Wayne, Cyndi, and me. It was the largest Christmas gathering I had experienced since leaving Delaware, three years earlier. Growing up in a family of eight, a crowd at the table felt like home to me.
It was a loud and merry group. Everyone laughed and talked, conversations flying around the table in between the “please pass me”s. Bryan got down from his chair and climbed into my lap. We didn’t add much to the babble, both of us exhausted but contented. Christmas was a great success, the family’s happiness made more intense by what could have been lurking in the background.
I don’t know if Donovan and Sean’s visit to the hospital was the right or wrong choice. As with many decisions I made as a parent over the years, I made it based on what I thought was right at the time.
For months after this visit, Donovan drew graphic pictures of Bryan hooked up to machines. Sean never talked about the experience. Likely at age four he took it for what it was, a brief moment in time and moved on. Now, years later, Donovan and Sean have never told me if this was a good decision or a bad one.
I am too much of a coward to ask.
Mary Chris Bailey is a retired pediatric emergency medicine physician. She believes communication is the keystone of medicine. Mary Chris writes short stories and is editing a completed memoir about her youngest son’s chronic illness. She has written poetry since childhood. Her work has appeared in Pulse: Voices from the Heart of Medicine. In her previous career, she wrote textbook chapters and co-authored journal articles and is now delving into creative writing. She lives with her husband, Wayne, and dogs Skeeter and Bella. She divides her time between Florida and Maine.