The surgeon sat on the examination table next to our daughter to explain why she needed another operation. Bridie looked down at the floor while he spoke, biting her lip, and occasionally shaking her head to let him know that she understood. The titanium armature holding our daughter’s scoliotic spine was becoming loose in the upper region of her back, causing the screw-like pedicles to poke outwards. She hadn’t yet fully healed from her last surgery, in which the rods that ran up the length of her spine were extended to accommodate a recent growth spurt, and in two weeks, she would be returning to the hospital for her tenth spinal surgery to fix the problem.
On the ride home from the surgeon’s office, we told Bridie how much we loved her and that we would help her through it all. We were poised to say more when she threw her hand up in the air.
“Just stop!” She said, “I don’t want to talk about it. It doesn’t do anything but make me even more upset and what’s the point?”
Talk of surgery began for Bridie at three years old, when metal rods were drilled into her severely scoliotic spine to hold it relatively straight to allow her organs to develop normally. We all agreed—there would be no more surgery talk.
For the two weeks leading up to the surgery, we were in constant motion, taking Bridie for swims in my sister’s heated pool, for ice cream cones, to the houses of friends, and in the evenings, we watched lots of comedies. Inside the swirl of work responsibilities and parenting activities, my husband and I experienced a duality of mind we’d never experienced before: our thoughts were at once on the uppermost portion of Bridie’s back where the rods pushed out, restricting blood flow and breaking down the delicate skin that covered them, and whatever else we had to do that day.
The double vision that we maintained for the days leading up to her surgery converged on Bridie’s tenth birthday when the rods broke through the skin on her back right before we were to leave the house to meet our extended family, already seated at a local restaurant, waiting to celebrate. Bridie began to vomit. Although she was not experiencing physical pain, she knew what had happened and was in the throws of a full-blown panic attack. My husband remained at home with Bridie, and I was sent to the restaurant to relay the news. At the restaurant, our family was concerned, but I told them not to come by the house because Bridie needed to relax. When the moment was right, I said my goodbyes and dashed out the door.
SHE CRIED BECAUSE SHE HATED THE FEELING OF BANDAGES ON HER SKIN; SHE CRIED BECAUSE THE RODS BROKE THROUGH THE SKIN ON HER BACK; SHE CRIED BECAUSE SHE WAS SICK AND TIRED OF PAIN; SHE CRIED BECAUSE SHE HAS ANOTHER SURGERY IN JUST DAYS; SHE CRIED BECAUSE SHE WAS TERRIFIED, AND SHE CRIED BECAUSE IT WAS HER BIRTHDAY.
When I got home, Bridie was no longer vomiting. She found some pleasure in opening her birthday gifts, and we kept the conversation light. Jerry took care to cover the area of her back where the rod broke through with antiseptic and a bandage, and when it needed changing, I held Bridie’s hands while she cried. When it was over, she cried some more. She cried because she hated the feeling of bandages on her skin; she cried because the rods broke through the skin on her back; she cried because she was sick and tired of pain; she cried because she has another surgery in just days; she cried because she was terrified, and she cried because it was her birthday.
We reached for our suffering daughter, and I brought her body onto my lap. Jerry and I stroked her hair, as we told her how much we loved her and kissed her as much as she would tolerate. We sat quietly on the sofa, regaining our composure. When Bridie was peaceful, we lit the candles on her cake and sang “Happy Birthday” to our pink-cheeked beauty of a daughter who was born ten years ago on the day, and who, in spite of the trauma she was experiencing, was able to reach inside of herself and find a reserve of joy. A smile emerged on her face that expanded our reality and pushed aside our terror and grief. It gifted us with a moment in which we experienced gratitude and joy, as we celebrated our daughter who delighted us and took our breath away.
WE NEEDED TO MOVE FORWARD. THERE WAS ONLY GETTING BRIDIE BETTER, PAST THIS EVENT, AND TO BEING EMOTIONALLY WHOLE AND HAPPY.
In the evening, the surgeon called the house with the operation date scheduled for two days later. For those two days, we kept Bridie occupied, fed her as often as possible since she was becoming increasingly underweight, and maintained a cheerful tone around the house. The morning of the surgery, I sat in the back of the car with Bridie as she vomited in a plastic bag that I held for her. She was experiencing another panic attack that continued as we walked into the hospital, while she changed into her small hospital robe, while the anesthesiologist and the surgeon spoke to us, and as her father laid her down on the table. When she received the anesthesia, she finally ceased vomiting because she was in a chemically induced state of sleep. In the surgical waiting room, we did not stop to reflect upon the cataclysmic awfulness of what was happening to our ten-year-old daughter—there was no time for that. We needed to move forward. There was only getting Bridie better, past this event, and back to being emotionally whole and happy.
Five hours later, the surgeon arrived in his blue scrubs to let us know that Bridie did well. He explained that to reduce the stress the spine had placed on the rods which caused the pedicles at the upper portion of the armature to loosen, he fastened hooks to Bridie’s ribs, which would absorb part of the stress and allow the top of the rod to remain fastened to the titanium armature. We were taken to the post-op area, where Bridie was barely conscious and highly medicated. Once she could talk and hold down some water, she was placed in pediatric intensive care in between beeping machines. She soon realized that her body pulsated with rib pain as a result of inflamed nerve beds due to having two surgeries so close together. Her pain was ever present and took everything out of her.
Bridie was moved out of the intensive care unit a couple days later, and a schedule of medications took Bridie’s pain from “beyond unbearable” to just “unbearable.” She hoped to make her usual visit to the playroom where she enjoyed making crafts and chatting with volunteer college students. With what little energy she had, she threw it into putting on her robe and climbing in the hospital’s small red wagon to wheel herself down the hall only to find that the playroom was closed because they were cleaning up after an employee party. Although we were told to come back in an hour or so, we knew Bridie wouldn’t be up to it. Her window for managed pain was a narrow one. Her previous surgery failed, the respite of the playroom failed, and she now had a new kind of pain. The narrative predictability of her surgical experience had changed and she didn’t know what to make of it. As we wheeled her into the room, she wore a look of defeat on her face that we had never seen before.
INFUSED WITH PAIN MEDICATION, WE MADE A PLAN TO TAKE HER HOME, IN THE HOPE OF RESTORING THE NARRATIVE PREDICTABILITY OF HER HEALING PROCESS, WHICH INCLUDED FIRST AND FOREMOST, THE CESSATION OF PAIN.
The next afternoon, we visited the playroom again. This time it was filled with children waiting for two men, who looked a bit sleepy and disheveled, to sing and play guitar. Bridie smiled in the direction of a curly-haired two-year-old girl with a bandaged arm, who spun while opening her tiny hospital gown to show everyone her diaper. There were some children in wheelchairs, some with hats hiding the effects of chemotherapy with an angularity to their faces that did not belong on a child. There were also plump-faced children who most likely were dealing with surgically removed tonsils and appendixes. Some of the children and their parents were smiling in anticipation of the performance, and others looked as if they were not feeling well, but still trying to enjoy themselves. When the guitars began to strum, the men sang, “This land is your land, this land is my land,” and most of the kids grabbed hold of the lyrics and sang along. The curly haired two-year-old danced about the room, diaper in full bloom. Clapping and smiling came from some of the children who sang along to the depression era folk song written by Woody Guthrie. Guthrie had written the song in response to Irving Berlin’s overly sentimental “God Bless America,” but despite Guthrie’s intentions, there was a group of kids who did not sing and my child was one of them. When we made eye contact, she let me know that she wanted to go back to her room. Infused with pain medication, we made a plan to take her home, in the hope of restoring the narrative predictability of her healing process, which included first and foremost, the cessation of pain.
At home, things got worse. Bridie’s pain was hard to manage, and it took some time to hit upon the best combination of pain medications. For the first few days, we kept the house quiet, watched movies and ordered take out. Bridie’s indomitable spirit began to lift when a couple of good friends and their kind and thoughtful parents came for short visits. Nothing about the past two surgeries was like anything Bridie had encountered before, and the unreliability of the surgical process threw her into moments of pain and terror. But she continued to try walking outside, in an attempt to enjoy the sunshine and move beyond her pain.
It was September, and Bridie had to stay home on the first day of school. The usual first-day traditional was that her father took Bridie out to breakfast on the way to school. This began in preschool because we felt that Bridie deserved one trip to school a year where she wasn’t driven by her mother (a teacher in the school), but rather her father, who could take the time to settle her into her classroom and remain perfectly available to her and only her.
That fall was miserable. There were no trips to the apple orchard, no outings to the movie theatre, no swims in the bay, and although Bridie summoned up the energy to go to school with ample pain medication, she was knocked down once again when the rods detached for a second time from their pedicles. We were stunned: the titanium armature that had supported Bridie’s developing body was failing her. When Jerry hung up the phone with the surgeon, he told me that all the titanium had to come out. Our singular focus was to pull Bridie from this surgical rip current of which the only escape was the complete removal of everything.
WE TOLD HER THE ONLY TRUTH THAT WE KNEW: THAT OUT OF ALL THE CHILDREN IN THE WORLD WE WERE SO HAPPY THAT SHE WAS OURS; THAT WE LOVED HER BEYOND MEASURE AND WE WISHED WE COULD TAKE ALL OF THIS AWAY.
We sat down for a family meeting and told Bridie that everything had changed, and that although the amount of suffering she was experiencing was awful and woefully unfair, she would have to endure yet another surgery. We promised that after this one she would be given time to heal. Bridie’s piercing blue eyes told us everything as she blurted out, “This is shit!” with a flash of a smile that emerged as she let loose the expletive and then collapsed into our arms crying. We told her the only truth that we knew: that out of all the children in the world, we were so happy that she was ours; that we loved her beyond measure, and we wished we could take all of this away. We were not sure she believed that she would experience physical relief from this surgery, and given our track record, why should she? We knew, however, that she felt loved—of this, we were certain, but we were also certain that this turn of events was “shit.”
Two days later, we drove to the hospital with Bridie vomiting in the back seat. Nothing we said or did helped Bridie with her panic attack, which continued throughout the car ride and lasted up until she changed into her hospital gown. When she lied down and finally stopped vomiting, she traveled somewhere deep inside of herself. One of the nurses began to talk at her compulsively until Bridie announced, “Hey, can’t you see I’m in the zone?” Everyone in the room, including another nurse, a medical student, and the anesthesiologist looked at Bridie and said to the nurse, “You heard her—enough.” Just when the room was quiet, it was time to take Bridie into surgery. Jerry braced to walk next to the gurney holding our daughter, and I bent down to kiss her and tell her how much I love her. Bridie’s eyes were scrunched closed. She would not look at me, or hold my hand. She didn’t acknowledge my kiss because if she did, the walls of the zone that were holding her panic and grief at bay might disappear.
As they wheeled Bridie away from me, I tried hard to believe that our every kiss and sweet moment, Christmas morning and burst of joy we had experienced together as a family were all somewhere inside of her... that all the invisible energy we call “love” was enough to support and soothe her inside the solitary zone that held her now.
THAT ALL THE INVISIBLE ENERGY WE CALL “LOVE” WAS PART OF HER AND WAS ENOUGH TO SUPPORT AND SOOTHE HER INSIDE THE SOLITARY ZONE THAT HELD HER NOW.
We sat and waited. Two hours later, the surgeon came to tell us that Bridie was doing well, that all the hardware was removed, and we could see her shortly. We went to see our ten-year-old who was once again surrounded by beeping machines, tubes running the length of her arms, and wires attached to stickers that covered her entire chest area. Her eyes were closed, and we sat on the side of her bed rubbing her hand and cheeks, telling her how much we love her. She opened her eyes briefly to acknowledge our presence. After about an hour or so, she drank a little water and was wheeled upstairs to the pediatric intensive care unit. We knew this part of the story well, and watched again as the nurses checked her vital signs every half hour, until she was ready to be moved into a regular pediatric unit to be checked hourly in a more casual medical atmosphere where kids were stabilized and prepared to go home.
After a night in the ICU, Bridie was moved to the regular pediatric floor, where we were told that she could not go home until she was fitted for a back brace that would provide some stability to her spine. A very kind orthopedic doctor showed up in her room to measure her torso, and even though she was experiencing intense rib pain, Bridie repeatedly had to sit up, lie down, and endure an unwieldy wooden measuring device that put pressure on her ribs. When it was done, she fell fast asleep, and we wiped the cold sweat from her forehead.
We tried to keep Bridie’s hospital room quiet and peaceful, but there was much going on around in the halls. There had been a tragic car accident, which took the life of a mother and son, and the two very young surviving children were in the room next door. The family of the mother and son were walking around in the halls, trying to sooth the recovering children while making funeral plans, and holding up the father who looked raw and ready to collapse. The family room was full of grief-stricken family and friends, and we tried to stay clear of it so that they could have privacy. The atmosphere all around us was tragic, and you could do nothing but feel the family’s profound loss, which moved through the halls like fog. Despite all of this, we tried to maintain an upbeat tone in Bridie’s room, which became increasingly difficult when a young teenage girl was wheeled in with only the drapes separating her bed from Bridie’s. When we heard her interview with the doctor about just having swallowed a bottle of pills, we told Bridie to put on her headphones and watch a movie. Luckily, Bridie began smirking at the antics of Homer Simpson as the young girl began to vomit.
The nurses had the wisdom to move Bridie into another room as we waited for her back brace. A couple of hours later, the orthopedic doctor arrived to place the brace on Bridie. They both winced as he put it on, as her ribs hurt her even more than ever. But at least now she was medically stable and ready to leave. We dressed Bridie and wheeled her down to the first floor of the hospital, where Jerry got the car and I waited with Bridie.
The fresh air outside felt good on our faces. We placed Bridie gently in the backseat, and I sat next to her to hold her hand. On the drive home, she closed her eyes, exhaled and leaned her body into mine, placing her head on my shoulder. Jerry drove slowly. I could see his eyes looking back at Bridie whose ravaged body sought refuge in mine with her head nestled in the crook of my neck. There was nothing left to solve, no more adjustments to the titanium rods that for seven years supported Bridie’s spine. There was nothing but the three of us, and the cool, fresh air on our faces, while we drove home under the warm pink glow of the setting sun, and we were beautiful.