In 2005, Gabriella faced surgery again. We had prepared our daughter for operations before, but not for six years. Now her scoliosis developed to where we had to act at once.

The curvature of her spine caused her increasing discomfort, so we knew this was coming. But her orthopedic surgeon, a doctor we respected, made it an easy decision. He told us if we waited any longer, he would have to do two procedures instead of one. The first would involve an entering through her back … with a second a few days later with an incision in her abdomen.

Gabriella experienced the OR ten times by her fourth birthday. In the years since her last cranial surgery, we had grown into more routine, more normalcy. But we summoned the fortitude that had lain dormant. That morning in late September, we found ourselves once more in the waiting room.

We had risen early, gotten our daughter ready, and driven to Robert Wood Johnson Hospital. As usual, Lisa got her admitted while I parked the car in the underground garage. After her doctor greeted us, we met the anesthesiologist. General anesthesia was always nerve-wracking, but we became comfortable with the surgical team. But we also knew this would be a big one.

Gabriella had already had three operations on her skull to remove a recurrent tumor, but spinal fusion was a complex procedure. The orthopedic surgeon warned it would take as long as six hours.

They let one parent escort her into the operating room. While it was daunting to deliver my child into this environment, I felt she appreciated my presence while still conscious. After they got me outfitted in scrubs and a mask of my own, I held her hand as we walked down the hall and then in the OR. Often, I whistled to keep her calm until they administered the anesthesia. But this time seemed different.

First, there was a larger team already gathered than in all of her earlier surgeries, doctors and nurses bustling about getting ready. The crowd was intimidating, but not so much as the array of tools and equipment, screws and rods and implements for cutting. I emerged from this sobering scene in a haze.

Lisa and I waited with reading material, but were unable to concentrate for long. And it was a busy waiting room, with other patients’ family members coming and going. By the time an hour passed, we thought we had been there three. Whenever the door opened, we looked up, anxious to see the surgeon still wearing his scrubs. We glanced at each other as frequently as the newspapers or books in our laps.

At last, our doctor came in. He gestured to a quiet corner. We rose and followed, fearful, and sat across from him. I gripped Lisa’s hand in mine. He said she had done well, although they had transfused a lot of blood. I donated in advance, and was relieved I had been able to do something to help.

“Can we see her?”

He nodded and led down an endless hallway to the recovery area. We passed curtained sections until we reached our daughter. She lay on a gurney in her hospital gown. Her face was so swollen, we barely recognized our own child. Despite this jarring vision, they assured us she was doing well. Until her oxygen level began to fall.

After a chest x-ray, they explained that there were post-surgical complications. Gabriella suffered a collapsed lung. They took her to Intensive Care, unconscious and with a breathing tube.

We fought off tears. She had been through so much, and she was bigger than all those earlier stays, but this seemed far worse. We held her hands and stroked her hair; we whispered that Mommy and Daddy were here now. But she didn’t respond.

Thus began a frightening stay in the ICU. Her grandparents brought Alexander to visit his sister, although we gave him limited exposure because we didn’t want him to be scared off by her appearance. As night approached, we considered our options.

During all of her prior hospitalizations, we had traded off. Lisa stayed the first night, while I went home to sleep, then after a quick shower in the morning I returned. Then we’d switch places for the next overnight. But this was different, and the nursing staff in Intensive Care allowed us both to stay.

These nurses and aides were phenomenal during Gabriella’s stay, and the orthopedic surgeon was gentle and compassionate. Throughout it all, we always felt like she was in good hands.

Our daughter was out cold for two full days while intubated. After they removed the breathing tube, it took another day for her to come out of it.

Because of the congestion in her lungs, they needed to do regular chest PT. This involved striking a cupped hand or a plastic cup like a mask against her back and front and side. Gabriella never liked this, often showing us the pout she made when her feelings were hurt. Now it became heartbreaking to watch, since they did chest PT through her heavy bandages.

As she recovered, family and friends came to visit. One friend was the mom of a fellow student of Gabriella’s at school. She had shared the difficulties of her own daughter’s scoliosis surgery and we appreciated her reassurances.

After five days in Intensive Care, she moved to a hospital room. The swelling on her face receded. Another forty-eight hours, and we brought her home. She arrived to find a tangle of balloons and flowers, and a Build-a-Bear from her friends at Lakeview.

It was then that her recovery accelerated. Within another week, we put the terrifying ordeal of her worst-ever surgery behind all of us. We welcomed the return of our routines, with just a bit more appreciation for our own unique version of “normal”.

Her feet were the first sign of trouble.

Gabriella was our first, but even without Lisa’s medical knowledge I knew something was wrong. My wife had just undergone a Cesarean birth, and thus she was a post-op patient herself, with nurses whisking around her bed in the OR. So it was me staring at her feet in terror.

One nurse said “clubfoot”. I remembered the word from novels as an unfixed ailment that left a character limping all his life. But this was my daughter, only minutes old.

They called her left foot a vertical talus. That was the first medical distinction I learned on a day of many: a clubfoot twists down and in, while a vertical talus turns up and out. Gabriella’s left foot lay parallel with her lower leg.

From her hospital bed, Lisa asked the Apgar scores and doctors and nurses discussed other symptoms I was too numb to process, but I couldn’t unsee those feet. I also couldn’t unsee her fragile eyes. Because her mom was getting treatment, I got to hold our daughter first. As soon as the nurse allowed it, I pulled her close.

But what was going on with her feet?

The pediatric orthopedist was one of the first doctors to examine Gabriella, and he reiterated the words, clubfoot and vertical talus, labels as different as her extremities themselves, the first as harsh as an insult, the other cloaked in medicalese.

He recommended casting her. In came the technician with a bowl of water and white strips like tape, dipping and laying and molding them into papier mâché booties from her knees to her toes. To my relief, the casts rendered her feet identical in shape.

It was a week later, a few hours before we recognized our daughter’s dehydration, that we removed the casts for the first time. (The orthopedic nurse had changed them a few days earlier, soaking them away layer by layer.) Now we did it ourselves, me holding her and whistling, you moistening and unwrapping the white layers like a gravelly Ace bandage. I watched with anticipation, hopeful that we would wind up with two feet that looked … well, more normal. But as I learned that day, normal had taken on a new definition in our house.

From the start, Gabriella’s feet were dissimilar. The right foot, the club, was thinner, the toes longer, inflexible, each curled atop the other, and pocked with bones that seemed out of place. One bone protruded badly, and I recall in the weeks that followed Lisa reminding me that the orthopedic surgeon had said we needed to monitor it to make sure it didn’t break through the skin. (I must have blotted out the memory of the doctor saying that originally.)

The left foot was different: flabbier, mottled purple like an uncooked sausage, more bendable. The toes were chubbier. And the bottom lay flat; I thought of the Peanuts characters.

They looked like the feet of two different unfortunate children. And yet from my early unease, those feet became a focal point of our love for her.

One day, with Gabriella lying on her back, Lisa raised her feet and squealed, “Gabriella’s got feeeeeties!”, following with a barrage of kisses, alternating in rapid-fire between her tiny soles. Our daughter found this hilarious. Soon it became a regular game for both of us.

When she was three months old, the orthopedist prescribed AFOs, orthotic devices of a hard plastic with Velcro straps that we used to press the feet into a corrected position. (Recently we found a plastic bag of her early orthotics, the tiniest with red Velcro and others changed to white.) We kept them on her at all times except during bathing, flexing exercises and bedtime.

Shortly before her second birthday, the orthopedist noted that the clubfoot was more awkward fitting into the AFO, and suggested we consider surgery. This was hardly her first – by now we had grappled with cataracts and worse – but this seemed more painful. The surgeon would have to break bones in her foot and reset them with a pin. Just the idea made my head swim.

By now the one constant was the anesthesiologist, a gentleman who lent us confidence. We also had faith in the orthopedic surgeon himself. But such a brutal procedure brought extra anxiety.

The waiting room had become familiar and we settled into our routine, reading and talking and looking at each other or off into space. This one took longer, but at last the surgeon emerged, still in his scrubs. The procedure had gone well.

Gabriella wore a cast from thighs to feet. She had been through so much, yet she smiled at us when we went to see her in recovery. Within days we took her home, and three weeks later they removed the pin – two inches long! – and changed her cast. I marveled at her resilience, still tiny but able to withstand such pain and disruption.

Even today, twenty years later, her feet retain their original profiles, the one with its curled toes and irregular bone structure, the other with the row of tiny purple veins and the flattened sole. But now, it’s their incongruity, their uniqueness, their imperfection, that makes them perfect in my eyes.