"I don't see very well," is how she greets new people, an understatement considering that she is legally blind. Four years old, she tilts her head slightly backwards and to the side, squints her eyes behind her thick glasses, presses the side of her right index finger against her right eye, all done to marginally improve her vision. She smiles, well aware that the burden is on her to put "normal" people at ease about her visual impairment.
Sidsel has short blond hair, sensitive fingers, and a rapidly growing vocabulary, spoken with the diction of a BBC announcer. When sitting on my lap in the living room in our house outside Oslo, she places her little hand on my Adam's apple to feel the sound of her father's voice, a gesture reserved for her closest confidants. "Pappa, tell me the story of how my retinas detached," she will ask, and her eight year old sister, Hannah, also a preemie, will squeeze in, put her arm protectively around her younger sister's shoulder and listen to what has become this family's defining legend. Again we will retell the story and look at the pictures from the hospital - our children inside incubators, the tubes, cables, and Ane, my wife and I, slightly younger-looking, smiling or crying while looking into the future. Every time I see the pictures - the tiny stubborn hands holding on to the tip of my finger, the picture of Hannah on my chest the night when they turned off the respirator to let her die - every time I see the pictures, I see them as for the first time, and even today, many years later, I cannot tell the story without my voice breaking up.
Ane became pregnant in late December 1994, only weeks after our first date. When we met she was 28, working as a music journalist for the biggest daily newspaper in Norway, VG. She was tall, beautiful, slender, and smart. At 37, I was a busy professional jazz-drummer secretly envying some of my friends with family and secure jobs. When Ane announced her pregnancy, we had already decided that we wanted to be together. In the beginning of June 1995, a week after I had quit my music-career to get a day gig with IBM Norway that qualified me for sick- leave and full salary, Ane suddenly came down with what we later learned was HELLP Syndrome (Haemolysis, Elevated Liver enzymes and Low Platelets), a serious complication of pre- eclampsia, rapidly increasing blood-pressure and possible death - unless the fetus is released. Thus Hannah was born prematurely on the longest day of the year, June 22, 1995, 26 weeks into what should have been a 40-week gestation period. All of a sudden we were parents - only seven months after our first date.
We hardly knew each other then, and yet, all of sudden we were responsible for a tiny critically ill girl, weighing less than 600 grams, just over one pound. She was the size of a small bird - so feeble and yet vibrant that visitors, upon seeing her for the first time through the transparent glass of the incubator, would cry and walk away with an impression they would never forget.
The neonatal intensive care unit (the "NICU") is where critically ill newborn babies are treated and a majority are children of extreme prematurity, kept alive in small incubators lined up close together. The NICU is a high tech war-zone where rapid technological developments enable the rescue of younger and younger children for whom rescue had not been an option a few years earlier. Up until the mid 70's, it was generally assumed that preemies did not feel pain, and they were treated without anesthesia.
During the postoperative days, while Ane was recovering from the C- section and the loss of blood that almost killed her, she was too physically weak to visit the NICU. When she woke up after the operation and saw the first Polaroid pictures of our daugther, hastily taken by one of the nurses soon after birth, she caressed the pictures. "I love her already," she said, beaming with happiness.
I was schuttling between the NICU and Ane's recovery area, completely disoriented, desperately seeking answers, consoling grandparents, siblings, and anxious friends, shielding Ane and trying to decipher and cope with my own emotions. Could I let myself love this little girl, whose name we had not yet agreed upon, and whose care we did not know how to provide? Should I not be strong in this crisis and reject any emotions that could make me weak? Ane’s reaction stayed with me in the days that followed. The confidence and total lack of hesitation with which she immediately embraced our daughter made me aware of my own deference; I was too terrified of losing Hannah to allow myself to rejoice her existence. Ane's uncompromising love made me realize that I had to accept my own vulnerability, that rejecting Hannah would have been the ultimate weakness, and that if I failed to defy my own fears, if I failed to love Hannah, my relationship to Ane would be destroyed – regardless of what happened to our child. I realized that to win the battle ahead, to be strong, I had to be vulnerable, but without questioning our chances of success.
For the following five months, Hannah moved from crisis to crisis. We yearned for her full recovery but faced an array of horrifying scenarios, all of them possible outcomes at one point or another: death, brain-damage, Cerebral Palsy, deafness, heart-surgeries, permanent lung damage. Hannah went through long periods where her immature lungs were unable - even with the help of a respirator - to provide her body with the oxygen needed to stay alive. On several occasions we were told that she would not recover and that treatment would be ended, predictions that to everybody's surprise did not materialize. We learned to rejoice and celebrate even the smallest victory. On June 27th, I woke up from a nap in Ane's hospital room. My birthday was approaching, and Ane had an idea. "Hannah's present to you is that we will get married on her due date, September 29th," she said.
Realizing that Ane had just proposed, I took her hands in mine, and hugged her. "I think Hannah knows exactly what her daddy wants," I said, tears coming to my eyes, my heart beating fast with excitement.
In a picture taken at Aker Hospital on the day we married, Hannah is holding my wedding ring. In the picture, Hannah, three and a half months old, is wearing a pink dress, and her entire hand - smaller than the nail on my index finger - fits inside the ring. Outside the camera's line of visibility a nurse is providing extra oxygen. We are in the hospital, it's her first day off the respirator, and she is 1300 grams, the size of a small doll.
That night we had a five-course dinner with our immediate family at "Torfest," the farm right outside Oslo where Ane grew up and where her parents still live. Hannah was not there, and we could hardly concentrate on the event, so focused were we on getting back to finish the job of getting Hannah home.
We were to spend three more uneventful months in the NICU. Hannah was released from Aker Sykehus just before Christmas, when the sun only visits Oslo for a few hours in the middle of the day to interrupt the darkness of the Arctic winter. As we left the hospital, we spoke with our primary contact, Dr. Tom Stiris. "As you know," he said as we sat in his office at Aker Sykehus, "Hannah has a cyst inside her brain. We don't know how it will develop." Earlier we had been told that Hannah had an 85% chance of getting severe Cerebral Palsy, but we had learned to ignore odds we could not influence.
"She has scar tissue in her lungs from the respirator, and this will most likely not leave her with lasting damage," he continued. "She will need to use an inhaler for a while, and she must not be exposed to cold air."
That winter, the fridge in our small one-bedroom apartment in Oslo was filled with Hannah's medication. Ane, still on sick-leave from the newspaper, spent the next five months inside, pumping milk every fourth hour and administrating medicine in hourly increments, while watching Hannah's slow recovery. In June 1996 we celebrated Hannah's survival, her first birthday and our marriage by inviting 150 friends and family for a two day feast at Torfest. We served food in the barn and danced to accordion music under a Nordic summer sky where the sun would set around midnight only to rise again a few hours later.
After Hannah's slow recovery, we resumed our normal lives. Norway's welfare system allows for 12 months maternity leave with 80% salary (starting when you leave the hospital), and we could chose how to split it between ourselves, and also spread it over several years if we wanted. Ane took the first ten months starting in May 1996, and in March 1997 I surprised my fellow IBM'ers and stayed home with Hannah for two months while Ane settled back into her job as a journalist. Our federal health insurance had covered Hannah's months at the NICU, one of the most expensive treatments imaginable, and we promised ourselves we would never complain about taxes again. In May 1997, I completed my paternity leave, dropping Hannah off in a daycare every morning. It had taken us two years of hard work to have our first child.
As Hannah turned three, in June 1998, Ane found herself pregnant again - this time it was less of a surprise - and we anticipated a normal pregnancy with excitement. What would it be like to bring a child home from the hospital right after birth? It was a scary thought. Ane's obstetrician at Aker Sykehus, Dr. Eva Hansen, assured us that the likelihood of another premature birth was neglible. As we held hands watching the fetus on a screen during a regular check up in September, we were told that our next child was due on March 8th, 1999.
Ane's body had other plans. A few months later, in November 1998, 23 weeks into the pregnancy, Ane called me at work, crying, the fetus still not even a bump on her stomach. "It is happening again," she told me. "I can feel it." I raced to Aker Sykehus where Ane was waiting. Dr. Hansen was optimistic. "This is not dramatic, nothing to worry about," she told us without conviction.
Later that day at the hospital, after we had spoken to Dr. Hansen, Ane cried silently as I held her, trying to block out the bad thoughts by giving us both a feeling of physical closeness. "I am so afraid" she said. “I recognize the symthoms.”
"It will be fine," I said, desperately wanting to believe myself.
Ane was admitted at Aker Sykehus later that evening, a Monday, after we decided I should take some of my vacation days. "If you go away," Ane had insisted, "I will relax more, knowing that at least I don't have to worry about you and Hannah."
The following day, Hannah and I flew to Tenerife, one of the Canary Islands, to spend a week in the sun with old friends Sigrid and Olav and their daughter Janicke who was a year younger than Hannah. A year before Hannah was born, Sigrid and Olav had lost twins only a few hours after birth at Aker. None of our friends understood better than they did what we had been through.
Hannah and I stayed in a small white house overlooking a tranquil blue Atlantic Ocean and a dark-red volcanic mountainous terrain. While Hannah slept inside, I paced the balcony speaking to Ane on my cell phone. "It is snowing here," she said from her hospital bed in Oslo, and told me how lucky we were to have each other. Even the warm dry Sahara wind could not push away the cold I felt as I mentally prepared myself for another premature birth.
We spoke on the phone every day. In the beginning of her stay she sounded optimistic, as if a good attitude could defy her rebellious body. But her blood pressure ignored her optimism and kept increasing. On the fifth day of our stay, a Sunday, she was crying on the phone. "I can feel it. It is happening again. I will not be able to sustain this pregnancy. What is it with me that makes me unable to carry a child?" Her voice was barely audible, but not because of a bad connection. I tried to console her, and I only cried after I got off the phone, honoring our agreement not to cry at the same time. Hannah, somehow sensing this logic, comforted me, saying, "Don't cry, Daddy." She stroke my hair with her little hand, sitting on my lap, distracting me from the thoughts of the countless days we might be lucky enough to spend in yet another NICU.
That evening, on November 15th, I wrote in my notebook: "I am putting on my preemie tires, getting ready for the bumpy landscape of neonatal medicine. I am trying to block out the inner pictures of white rooms filled with pain, and I am trying not to think of the monotonous sound of the respirator pump and the string of bad news we are bound to encounter. I think of the immediate things - the sun, the sand, Hannah and all the future dreams we have for each other."
On the following day, a Monday, Ane was transferred to Ulleval Sykehus, the biggest hospital in Norway. The NICU at Aker Sykehus where Hannah had stayed had recently been closed, and a brand new, better equipped NICU had opened at Ulleval. A research hospital for the University of Oslo, this was where my father's colleague, twenty-five years earlier, in the early seventies, taught me how to kill white laboratory mice. Dressed in a white lab-coat, he would hold them by the tail and slap them full force against the concrete floors of the virus lab where my dad did research. This was also the hospital where I saw my 43-year-old mother Sidsel for the last time, in an open casket, ice cold with a staple in her forehead to hide the brain surgery that killed her.
On the following morning, Tuesday, Hannah and I got up at 4:00 a.m. and boarded a crowded bus to the airport. As I sat drowsily on the hard bus seat, Hannah's warm body sleeping on my lap, the pitched dark sky outside the foggy window lit up with a swarm of shooting stars. For each star that fell I repeated the same words to myself, "I wish we will get a healthy child," as if I was praying, something I never do. On the plane back to Oslo I admired a sleeping Hannah; blond darkening hair, dark brown eyelashes and eyebrows, a face completely filled with a peacefulness I did not share. She was a revelation, a sight more beautiful than any work of art.
While I admired Hannah's beauty on the plane, Ane gave birth to a small baby girl. The surgeons faced a fountain of blood as they once again slit open the same C- Section through which Hannah had emerged three years earlier.
When we touched down in Oslo, Ane's mother was on the voice mail. "Ane gave birth to a small, healthy girl this morning," she said in the calm, rock-solid way, confirming for me that she was one of the pillars upon which we could rely. "You just had a sister," I told Hannah as we waited for our luggage, but she looked at me without really understanding much of the unfolding drama. She would spend a good portion of the following months on the farm with her grandparents, Atle and Guri, much to Hannah's and their delight.
Sidsel's birth, originally expected to happen on March 8th, took place on November 17th - 16 weeks prematurely. I was glad it was a girl because they are stronger than boys, and have a greater chance of survival. At 24 weeks gestation - two weeks earlier than Hannah - Sidsel would need all the luck she could get, since week 24 was, and still is, considered a lower threshold for possible survival. At 480 grams (1 lb), Sidsel was smaller than a rib eye steak, smaller than Hannah, and the smallest patient at the new Children's Center at Ulleval.
I left Hannah with Ane's parents and Ane's father Atle drove me to Ulleval Sykehus. That afternoon the ground was covered with slimy autumn leaves and wet sleet was falling from a dark, monotonous sky. Inside, in the surgical recovery unit, Ane was just waking up. She cried when she saw me, a cry of relief I imagined, and also, I think, of happiness. Sidsel was alive, and Ane wanted me to be with our new baby. I quickly left Ane and walked over to meet my new daughter for the first time. She was already breathing on a respirator in a brand new incubator in the NICU at Ulleval.
As I entered the NICU, I automatically washed my hands to avoid infections. Next to the sink I could see several familiar faces transferred from Aker Sykehus among the smiling headshots of the staff. Under each face, names were written with black ink: Mona, Erik, Kjersti, Helga, Tom, Finn, Eva, Rajiv, Elisabet - all highly trained practitioners working in three shifts to save the lives of Sidsel and other preemies like her, and to further explore the boundaries of scientific neonatal medicine.
Five large rooms with glass windows and curtains lined the right side of a long corridor. The most critically ill patients - including Sidsel - were placed in the room at the end of the corridor. Children with minor issues were placed closest to the exit. Our job was to move Sidsel closer to the exit and eventually, home.
Unlike the shock felt when we had first entered this foreign word of life, death and technology at Aker Sykehus three years earlier, being back in a NICU felt like a reluctant homecoming. When Hannah was born, the first visit to the NICU at Aker had broken me, and I had to spend all of my energy to control my own fear of the unknown. I had felt utterly helpless then, out of control, not knowing what to do, what to expect, only knowing that I had to be strong for Hannah.
Now, as I stood next to the incubator watching Sidsel with patches over her eyes receive ultraviolet rays to combat jaundice, I was calm, like a veteran back in combat. I counted three more incubators in the room, all containing critically ill children. For each incubator a specially trained nurse was working silently, checking levels, transferring blood, performing diagnostic tests, administering medicine or reacting to alarms with efficient movements. Only parents and the most experienced personnel were allowed into this area, and watching the nurses was like watching world-class musicians: no wasted movement, no tension, no hesitation.
Next to one of the incubators across from ours, a mother was sleeping on a blue reclining chair, her legs on a foot-rest, looking almost like a transatlantic passenger in an airline seat, but with her child on her chest covered with blankets, still attached to the life-support needed to sustain its path to recovery. Preemies, like all humans, crave body contact. It is standard procedure, as soon as the child can be safely taken out of the incubator, to be placed on their parent's chest.
Within a few days, Ane had recovered enough to have her bed rolled into the NICU to see our daughter. We quickly decided to name her after my mother Sidsel, who had died 18 years earlier. As Ane sat by the incubator during her first visit to see Sidsel, we both felt the frustration of not being able to hold her, of being confined to watch her through the walls of the incubator. Yet we would rather postpone gratification than expose her to additional risk. A few days later, Ane and I, in order to reduce the risk of infections, removed our wedding rings in a symbolic act of commitment to the task at hand. We both knew what to expect, at least we thought we did, and without further hesitation, we went to work.
Over the next few months we took turns spending ten to twelve hours every day with Sidsel on our chests. A blue reclining chair with a foot rest was provided by the hospital and placed next to Sidsel's incubator. Every day was the same. Ane would have Sidsel out from 9:00 a.m. to 4:00 p.m. Then she would pick up Hannah at daycare, and I would show up at the NICU after work. I would take off my shirt and put on a sterilized hospital gown. When ready, Sidsel's nurse would open the side of the incubator, and gently lift her over to my chest, where she would lie on her stomach, face to one side, with the respirator taped to her nose. The respirator cables and tubes would be taped to my bare shoulder, three monitors were taped to her chest to monitor heart rate and respiration, and a monitor to oversee oxygen level was attached to her foot. Sidsel would be covered by several blankets, only wearing a diaper. For hours I would sing songs, read books, talk to the nurses and sleep.
Occasionally her heart would stop. This would trigger an alarm, and the nurse would immediately get up from her chair nearby and calmly stroke Sidsel's back as if to remind her to keep her heart going. Once we got used to it, we would sometimes perform these strokes ourselves. Every week we would meet with Sidsel's neonatal doctor, Tom Stiris, who had served in the same role with Hannah.
On December 24, after only five weeks, a small Norwegian flag was placed on top of Sidsel's incubator. She was taken off the respirator, and was no longer in critical condition. She was able to breathe on her own with a little help, provided by continuous positive air pressure, CPAP - air mixed with oxygen blown into her nose. Sidsel had gotten off the respirator ten weeks faster than Hannah, but was still very sick. Nonetheless, family and friends started to visit on a regular basis. Things were starting to settle into a routine.
Right after Christmas, the Norwegian news media had a debate about guidelines for saving preemies. Should children born as prematurely as week 24 be left to die? Could more lives be saved by spending money elsewhere? How should they prioritize in the health-sector? Was it ethical to save children who are often left with severe damage, exhausted parents, destroyed marriages, and who require expensive, lifelong care? We felt that this was both a cynical and naïve debate. Should one have the same guidelines for the elderly? Should one stop treating people over 95 years of age? We were asked to participate in a panel, but did not feel that we had energy for anything that did not benefit Sidsel directly. In the NICU you never know if you are running a sprint or a marathon.
On Wednesday January 20th, I wrote in my diary: "Sidsel has a slight problem with her eyes. Probably nothing to worry about." On the next day, I wrote: "Ane is relaxed as we discuss the latest development: 'Well, we can't exchange her for someone else at this point,' Ane says and changes topic, clearly not interested in speculating on what might happen."
The subject of Sidsel's eyes did not come up until after the weekend. On Monday morning, January 25th, Sidsel was sleeping in her incubator down the hall as we convened for a meeting with Tom in his office. She was 1348 grams - almost three times her birth weight - sleeping, breathing with only a few percent extra oxygen. The monitor above her incubator showed steady respiration, heartbeat and oxygen-levels around 99%. Things were looking good.
At 10:00 a.m., Tom showed us into his narrow office where medical books and children's drawings competed for space. We sat down on the love seat, our backs against one wall, thinking about all the bad news that had been delivered in this small space. We were facing Tom across a low, wooden table with coffee-cups and medical journals. If we were not holding hands, we would soon. To the right, we could catch a glimpse of Oslo, covered in snow.
We were both aware of Tom's time; any time spent talking to us was time not spent with his tiny patients. We were almost afraid to ask questions, and we had gotten used to skipping the small talk.
"I am sorry to hear about Sidsel's eyes," he said. He looked at us without any pity. He had thick dark eyebrows, heavy eyelids, balding hairline, and a white coat with a laminated ID-card showing a picture taken a few years earlier.
"Excuse me?" Ane said. "We have not heard anything about this." Usually I was the one to raise my voice, the one that Ane would tell to calm down, but now her voice was laden with aggravation, and possibly fear, triggered by this obvious failure to manage our expectations.
"Sidsel has developed ROP stage III," Tom explained, "an extremely rare but aggressive disease. The blood vessels in the eyes start to grow out of control, and it can cause retinal detachment." He did not tell us that ROP blinds more children than all other causes combined. He continued, "She may lose her vision completely, or most of it."
He delivered this news with a flat voice and without even a gesture or cues to provide further insight. No hand movements, no comforting smile or reassuring words. Just the news and then silence.
Not knowing how to respond, I took Ane's hand. We both needed the comfort of the other as we confronted this new development, yet another complication we had not anticipated.
"I am sorry. I thought you knew," he said when we failed to respond, his apology not referring to the possible blindness, but to the fact that we had not received the information earlier. "She will be transferred to Rikshospitalet today to undergo chryotherapy tomorrow. They will use a special laser-like device to try to apply freezing techniques to try to halt the uncontrolled growth in her blood-vessels. This will happen under full anesthesia of course, and she will feel no pain."
"I see," I said as Tom elaborated. But I saw nothing, I understood nothing, and I heard nothing. It was as if the news of Sidsel's possible blindness had afflicted us with a temporary deafness, as if the word 'blindness' itself had made us completely unable to absorb more information.
After we left Tom's office, we walked in silence to the cafeteria, knowing from experience that even hospital food will make bad news more manageable. What was there to say? We both knew that the other was thinking, digesting. We did not have the luxury of a full-blown reaction until much later. For me, it would take two years before I would allow myself to react.
Once in the cafeteria, we drank our coffee in concentrated silence. I did not notice the staleness of the generic sandwich wrapped in plastic- foil, but I knew that we both needed to digest what we had heard, and to be alone together. I watched patients and visitors move slowly across the linoleum floor, as if the entire scene was a bad dream. I could see a young woman dressed in a blue robe walking slowly with an IV attached to a bag on a stand with wheels. I could see an older man in slippers, also in a blue robe, buying newspapers and chocolate. He was walking with a helper, hardly lifting his feet from the floor as he moved with the speed of a turtle across my field of vision. Outside the main entrance with automatic glass doors, I could see two pregnant women talking, their frozen breath mixing with the white smoke from their cigarettes against the dark winter sky above. I could see four medical students occupying the table next to ours, dressed in white uniforms, laughing, backpacks on the floor, sleep-deprivation in their youthful eyes, and the future resonating in their optimistic, happy voices, the same voices who in the future would deliver news to parents and patients just like what we had heard from Tom.
As I watched these people I was acutely aware of my own senses, trying to envision what I would experience without vision. How would I describe this room if I could not see?
Ane broke the silence. "It must be much worse to be deaf," she said, trying to soften the blow by thinking of something worse. She was talking to herself, not really expecting an answer. It was a survival technique, and one of the rules we had developed together through Hannah's recovery. We had learned to deal with bad news by envisioning something worse. We'd never cry at the same time, never judge each others reactions, never complain - and we'd use every occasion to celebrate.
"I would think that if you don't see from birth, it becomes the norm," I said. "It shapes your life, it defines who you are." Two years later, in Boston, I would listen to a 14 year old blind girl give a talk at Perkins School for the Blind. "An eagle can see ten times better than a human. You can't compare. Someone else's perfect vision does not make me go around thinking about the vision I don't have," she had said with insight, and when I heard her speak, I thought back to the conversation Ane and I had when we first heard about Sidsel's ROP.
Ane looked at me. "On the other hand, I will make sure she is always well dressed. She might be blind, but she will be blind and beautiful," her mother said.
"I hope that she will learn how to play the piano," I said. "A blind, hip girl playing the piano. That could be pretty cool." We were slowly lifting ourselves up, knowing that we couldn't allow ourselves to be depressed. We never had to remind ourselves that this was not about us, it was about Sidsel.
During the next month, February 1999, Sidsel underwent two rounds of chryotherapy. At the time we had no idea if she would see anything at all, but we knew that she would live.
In early March, after the chryotherpapy, she was released from Ulleval. We had passed another milestone, and that night Ane and I celebrated by putting our wedding rings back on and by drinking a bottle of champagne.
"Finally, we can start to get back to normal," Ane said as we sat in our own living-room with both our children sleeping in our bedroom. Hannah had been enthusiastic about getting Sidsel home, but she was more reserved now that she realized she would have to share with Sidsel.
Ten days later we were back for another check of Sidsel's eyes. This time we were with a specialist in ophthalmology, Dr. Randi Tranheim, a mild woman in her early sixties, a professor at the Rikshospitalet where the surgery had taken place. She had a quiet voice, grey hair, and a smile that never really left her face - even when she talked about Sidsel's eyes. She gave Sidsel eye-drops to make her irises open up, a process that is slightly painful, but one to which both Sidsel and we later grew accustomed. Once the pupils expanded, she used a metal device to hold her eyes open while examining one eye at the time with a dedicated sharp beam attached to a special magnifier.
After a few minutes in silence, she spoke without looking up. "She has retinal detachment on the right eye, extensive." She continued to examine Sidsel's eyes, intensely focused, speaking in incomplete sentences. "The retina is detached from eight to three", she said, referring to the digits on a clock to explain the circumference that had been damaged. The extent of retinal detachment is described by how many clock hours of the retina are involved. For example, if there is retinopathy extending from 8:00 around to 3:00, the extent of retinal detachment is seven clock hours. "Not much we can do here," she said, speaking almost to her self.
She started looking in the left eye. Silence. I held Ane's hand.
"Detachment from 11:00-2:00 on the left eye, not so extensive, not so close to the center." She looked up and explained, pointing to an illustration of the eye hanging on the wall.
"What can we do about this?" I asked, longing for an easy answer.
She hesitated before answering.
"We might consider inserting what we call a scleral buckling procedure."
In my diary I later wrote: Surgery: extensive and risky.
We went ahead with the scleral buckling procedure a few days later, in March 1999. A soft silicone band was placed around the equator of Sidsel's eyes to try to stop the retinal detachment. As scheduled, the bands were removed without complications a year later through yet another surgery.
Today, Sidsel has some vision in her left eye. Behind her glasses, her blue eyes point in slightly different directions. The left eye has enough remaining vision so that she can see you and will smile back if you put your face close to hers. We think she can see vague images within 6-9 ft., mostly in a narrow sliver of the upper left quadrant between nine and 12 o'clock - "narrow" as in looking through a set of binoculars the wrong way. If you put your hand in front of her left eye, she will say, "now I am completely blind."
She compensates for her lack of vision by memorizing surroundings, words and names. As other visually-impaired children, she will throw things up in the air in order to hear what it sounds like when they fall down, at least this is what her vision teacher tells us. She listens intensely to any aural cue that can help her orient herself: a sneeze, a cough, a familiar voice or the sound of scooped ice cream. Sidsel can identify food by its sound, and smell of course: a steak on a plate, the sizzling of butter, the unwrapping sound of a chocolate. She will hear these sounds even with the radio in the background. But she dislikes noisy environments and big parties where she loses the ability to discern particular sounds.
She will not see you if you stand outside her field of vision, but will immediately recognize most people by their voice, and her parents by our walking patterns or our breath. She makes deductions where others would observe: "My father is chopping onions" she said last summer, sitting on her grandfather's lap while I chopped watermelon.
The other day in a sushi-bar, she stopped in the middle of the meal, cocked her head back, and listened. "Is that Stevie Wonder playing?" It was.
Back at our house in Norway, she 'watches' children's TV for 40 minutes in the afternoon - not so much to watch as to be with her idol, best friend and big sister, Hannah, while Hannah watches cartoons. Sidsel sits with her face close to the screen in her signature position, head cocked to one side, index finger poking her right eye to improve and stimulate whatever light she can, listening intensely, enjoying the colors and the company of her sister.
During weekends Sidsel visits and listens to her grandfather's horses - big, brown, full-blooded trotter-horses, fifteen of them running free at Torfest. Sidsel is apprehensive around them, sensing their unpredictable nature, but at the same time warming up to their sounds, their smell, their touch and their power. She can almost tell them apart by their sound, but how do you know the size of a horse if you can't see it? Sidsel has no way of knowing if the warm, tight skin she is stroking with her small hands is a mile wide or just the size of a small car.
When I hear geese passing over at low altitude, I wonder if Sidsel has a favorite sound. She responds well to the word chocolate. The sound of her mother's breath in her ear will calm her. Accompanied by her sister, Sidsel sneaks into our bed at night, puts her hand on Ane's throat, I imagine, to feel the skin, to hear us sleeping - slow, steady, warm respiration in her ear.
On good days I think that Sidsel actually enjoys listening to the world without the interruption of sight. She may choose future boyfriends worrying more about their smell than their looks. I am hoping that she will be able to read books, and we will have to learn must learn Braille in order to prepare her for the worst. Many ROP children with low vision lose the remaining vision later in life as their retinas detach completely.
She likes to experiment with objects. She might cut her blonde hair if left alone with a scissor. When this happens, her mother will bring her to a professional hair- dresser in order to repair the damage.
Ane is particular about how Sidsel looks, and Sidsel is becoming increasingly aware of her own appearance; she has just enough vision to refuse to wear certain colors. The stubbornness and willpower that saved her when she was sick is now driving us crazy as she is discovering her own will. If she wants the red skirt (she loves skirts, hates dresses) or refuses the pink jacket, there is no room for negotiation. If we fail to accommodate her, she will stomp her feet, lie down on the floor like an insect on its back and scream in a thin, high-pitched voice, "No, I want the pink jacket. The pink jacket!" It's a voice quite different from the almost adult sounding voice she uses to experiment with her ever growing vocabulary of words she can use but does not quite understand - words like delegate, Davis (as in Miles Davis), deduct, and detach.
"Dad, will I become completely blind if my retinas detach?" she might ask me when I throw her high up in the air.
We lived in Boston for two years after Sidsel's birth, from late 1999 through 2001. During that time, I worked long hours while Ane stayed home with Hannah and Sidsel. Sidsel and Ane went to the Perkins School for the Blind every week and met other blind children and their parents. Perkins provided expertise and support, and helped us get a vision teacher, Donna, who came to Sidsel's preschool once a week.
In September 2001, on a warm, sunny day, just before Sidsel turned two, not long before we moved back to Norway, we went to Perkins to get Sidsel her first cane - a pre-cane. It is made out of four light white plastic tubes andlooks like the frame of a small, old-fashioned sled. Two vertical tubes, curved in one end, are held together by two horizontal tubes.
Donna, an energetic woman in her late thirties, with dark short hair, greeted us as we parked our car on the parking lot next to the pre-school building. Perkins is situated on a beautiful old campus with green lawns, paved walkways, and old buildings filled with history. "Here is the cane, Sidsel," Donna said as she handed Sidsel the white pre-cane. Sidsel was beaming with excitement and anticipation, smiling. "Can I please try it?" she asked, and Donna placed Sidsel's small hands on the two vertical tubes. "Sidsel, all you have to do is tilt the pre-cane down and push it in front of you." The curved front of the sled touched the ground, and Sidsel, not willing to wait another second, immediately started running around, immediately grasping the concept of extended mobility and tactility made possible by the cane. It was a moment of new-found freedom. Suddenly she could sense upcoming obstacles, changing textures - a pavement ending, a lawn starting - or a wall in front of her.
Watching Sidsel run around with a white cane had an unexpected effect on me. I watched her with a smile, but as I watched her, tears filled my eyes, as if I saw her visual impairment for the first time. I took Ane's hand, at first not realizing why I was crying, but still enjoying the release of emotion. Ane wrapped her arm around me. "It takes a little time to sink in, doesn't it?" she said.
"I keep forgetting how little she can see," I said. "Seeing her running around makes me feel..." I was searching for words to describe the sudden rush of feelings. "...happy, sad, nostalgic, sensitive, vulnerable." It was confusing. I was happy, yet sad. Maybe sad because I realized that in a way, I had been blind too. I had failed to see that her childhood rushed through our lives like a streak of sunshine. As I stood there, I realized that this moment already was about to become past and an important moment to hold on to. In seeing her independence, I was reminded of how fast her two years had elapsed, and how quickly she was becoming a person with her will and her own life.
I felt, maybe for the first time since Tom had delivered the news about her ROP two years earlier, that I could allow myself to be vulnerable, that it was ok for me to let go, and that our family unit was strong enough for me to lower my guard.
"I never think of Sidsel as blind," I said to Ane. "I forget that she is different, but when I see her run away from us with the white cane, I am reminded of how fragile everything is. As I watch her, I think of her power, her enthusiasm, and her vulnerability, and I feel such a strong desire to protect her, yet I know she must run away, and it is our job to give her the courage, and the mobility to be on her own."
Ane did not say much, knowing that this time I was talking to myself, as she had talked to herself in the hospital cafeteria two years earlier. She held me close, and when Sidsel came back I lifted her up on my arm. She put her hand around my adam's apple and smiled. "I like the cane, Daddy," she said, and I hugged her until she made me set her down so she could try the cane again.