READ MORE ABOUT PRINCE DIFFERENT.
Having children is a life-changing decision. It requires a huge adjustment, and this was true for us, as well. But having a child felt like a natural next step in our relationship. We followed our hearts, and in the spring of 1990 Yvonne became pregnant and we began a new phase in our lives.
Her belly grew, and our anticipation grew with it. Everything seemed to be going exactly as it should.
I was convinced the baby was a boy. I talked to him all the time, and Sören would place his mouth close to my belly and sing to him. Sören hoped he would be a musician, and I wanted him to be intelligent. Hopefully he would have both gifts. We called him “Bebben” but we’d actually already chosen the name Ludvig. Of course, we both agreed that the most important thing was that he was healthy.
That autumn, however, small things started happening that made us concerned about the baby. A routine exam indicated that his heart wasn’t beating the way it should. His heartbeat was irregular, and for long stretches it couldn’t be detected at all. Yvonne was immediately admitted to the hospital for more tests and ultrasounds.
Suddenly we realized life might be taking us in a direction we hadn’t prepared for. Maybe everything wouldn’t be so uncomplicated, after all.
After we’d endured a day of intense fear, the doctors told us their concerns had been unfounded. There was nothing wrong with the baby; it had simply been a matter of an unreliable ultrasound machine.
I tried to stay calm and persuade myself and Yvonne that everything was going to be fine, that there was nothing wrong with the fetus. But inside me was this gnawing feeling that something wasn’t right. I denied those feelings when they came up, so that I wouldn’t totally lose myself in fear and anxiety. Around that same time, my mother’s husband’s son had a child. The baby turned out to have Down syndrome. I remember how I felt when I heard the news. It was like I breathed a sigh of relief, like it was nice that it hadn’t happened to us. We escaped this time. It was somebody else who’d had the “different” child.
Maybe I did sense something. Many nights I dreamed that our child was different, and maybe I knew intuitively what was going on. But I didn’t want to feel the fear. I didn’t want anything to do with it. So I convinced myself that my premonitions didn’t mean anything, that it was impossible for me to have a sixth sense about the baby. I preferred dreams with happy endings.
I was oblivious to the fact that I saw it as my right to have what I most desired: a healthy, perfectly formed child.
And then on February 2, 1991, Ludvig was born, and everything changed.
When our baby son came into the world and they placed him on Yvonne’s belly, we were surprised at how awake and aware he appeared. His almond-shaped eyes explored his surroundings with great interest during the first hours. His gaze had a depth and a curiosity, as if he wanted to take in everything about this world he’d been born into. As if he carried wisdom and secrets from the place he’d come from. His face was beautifully heart-shaped, and at the very top of his head was a curiously long tuft of soft, blond hair—as if a part of him already insisted on being its own unique, special self.
He wasn’t fussy, and after the first few hours his curious contemplation ceased and he preferred to sleep instead. He didn’t even seem interested in eating. What an incredibly peaceful baby we had.
I looked into his eyes and in their depths I felt a sea of serenity. I was completely dumbstruck by how beautiful he was. I was finally getting to see him, to meet this little person I’d only imagined until now. And he was so much more than anything I could have dreamed of.
I gave him a bath in body-temperature water. At first he thrashed around like a little fish, but he gradually relaxed. In the end, he fell asleep in my arms. It was a moment of absolute happiness.
Our first day with Ludvig was pure, unending delight. We were filled with love every time we looked at him.
But then something new crept into our consciousness. We still looked at Ludvig with infinite pride and joy, but a vague worry began to take shape.
Why didn’t he want to eat? Why was every mealtime a battle? Why did he never cry?
It was hard to accept Ludvig’s unwillingness to take my breast, and I didn’t want to give up my dream of breastfeeding my baby. I wanted to experience that connection with him, to give him nourishment from my body. But instead I fought with his sucking reflex, fought to keep him awake, fought with the breast pump. Feeding him took hours. Was this how it was supposed to be?
The nurses at the hospital said there was no reason to worry. They tried to reassure me that all moms go through this, and I truly wanted to believe them.
They told me how sweet Ludvig was, but I suspected they were only saying it to soothe me. Being sweet isn’t the same thing as not being hungry or not having the energy to stay awake. Ludvig didn’t seem to care about anything. He was interested in neither food nor survival.
Surely nothing was wrong? It simply wasn’t possible. Nothing could be wrong with the little baby we had waited so long for.
It became harder and harder to talk with family and friends on the phone. They wondered how things were going with Ludvig and whether he was feeling okay. When we sensed their concern, it brought our own to the surface.
We tested whether his little fingers could grab our own. We tested his reflexes. But because we didn’t know what to compare him to—how things would look if they were “normal”—we concluded that everything was as it should be. Besides, if anything were wrong with our son, we were confident the doctors would have seen it.
So, the easiest thing was to brush our worries aside and try to silence the anxiety growing inside us. There was obviously nothing wrong with Ludvig, and we pushed away all thoughts to the contrary. All we wanted was to be with our beloved child and to live the life we’d dreamed of.
After the first day, the staff came in often to check on Ludvig. Had he eaten? How long had he slept? Their questions created even more stress, and we grew uneasy every time they walked in the door. We wanted to be left in peace, but these people kept showing up more and more frequently. We could tell they had something on their minds, but we didn’t know what it was.
By the second day Ludvig had developed jaundice, a result of his having a different blood type than Yvonne, so the staff placed his bed by the window to expose him to more sunlight. They told us the jaundice might be making him tired, and he might need to be moved to the neonatal intensive care unit to receive light therapy.
The next day, the doctor made the decision to move Ludvig. But there was no reason to worry, he said. Ludvig would be back soon, and within a few days he’d be a lively little boy. The doctor’s words, intended to reassure us, had the opposite effect. We realized now that something wasn’t right. For the first time, we couldn’t hold back the tears.
It was hard to accept that something could be wrong with Ludvig. In a way we felt outraged, as if we’d been denied the right to a healthy child.
When Ludvig entered intensive care, our anxiety became intense and ever-present. We stayed with him at all times, as if we needed to protect him. We watched our dream begin to fall apart.
How could this be happening? Had we done something wrong, or was it just pure chance?
We repeated stubbornly to ourselves that everything would be all right. Ludvig just needed some light. After all, we couldn’t see anything wrong with him. Not only did he look perfectly normal, he was the cutest baby in the maternity ward. He couldn’t possibly be harboring something sinister.
But when we looked around at the other babies in the NICU, we realized that nobody ended up here without a very good reason. There was a subdued atmosphere throughout the department. This was where the unlucky ones were gathered. The prematurely born. The gravely ill. The ones who had difficulty living without help. It was almost suffocating, all this sorrow and pain, so palpable you could almost reach out and touch it.
There was a connection among all of us at the NICU, in a very different way than in the maternity ward. Here, everyone felt anxious and afraid. We shared a common bond: We’d all had our dreams shattered.
Whenever I left the hospital I could fantasize that nothing had happened. I could pretend everything was exactly the way it was supposed to be.
But at the same time, a certainty about Ludvig’s condition was growing inside me. My thoughts returned again and again to my mother’s husband’s grandson who’d recently been born with Down syndrome. Following my instinct, I searched for information on Down syndrome. Maybe I already sensed it was what Ludvig was afflicted with. Because that was how I regarded it, as an “affliction.”
As I read through the whole range of symptoms of Down syndrome, I felt relieved. Ludvig displayed almost none of them.
Sure, he had almond-shaped eyes, but that was it. The most common symptom, a single crease instead of two creases across the palm of the hand, was absent in Ludwig. I could exhale. Whatever he had, it wasn’t Down syndrome!
I wanted to get away from all the happy mothers and their flawless children. Their happiness hurt me. I longed for a world where my worst problems were aching breasts and a big belly. Where my greatest frustration revolved around fitting into my favorite jeans again. I wished I could walk down the corridor in the maternity ward with a perfect baby, free from care, chatting hopefully about the future. The fact that I had mastitis and a 104-degree fever was almost liberating, as it left me almost too exhausted to worry.
My body felt heavy and sore, but I didn’t pay it much attention. It was as if I weren’t even living in it.
I distanced myself from the other moms in the maternity ward. They seemed so carefree and happy and I envied them. Their babies waved their little arms and shrieked with a power Ludvig had never come anywhere near. When I heard the moms comparing their babies with each other, it was clear something wasn’t right with mine. The things they described weren’t things I recognized at all.
If they only knew how much they had to be happy about, I thought. It was a luxury to be able to whine like they did about their weight and their breasts.
I felt more irritation and resentment toward the others than sorrow for myself. It was easier to be angry than sad.
Ludvig had been in the NICU for several days, and we were exhausted and mentally drained from the unrelenting worry and anxiety. Being there meant living in constant chaos.
Our emotions were a tumult of grief and hope. Both life and death were our close neighbors, and the babies all around us were confirmation of our own vulnerability. We didn’t know where this would lead, and it was unbelievably stressful.
Ludvig alone seemed unconcerned about what his birth had set in motion. He was content just to keep on sleeping. Still, we made sure we were with him whenever he wasn’t in the incubator. We didn’t want to leave him in case something happened, but we also found that his presence gave us comfort and solace.
He had been getting weaker, so a tube was inserted in his nose and we learned how to feed him Yvonne’s pumped breast milk. At first we found it unpleasant, but soon we felt only relief that he was getting proper nourishment.
Occasionally we were shaken out of our stupor by the sound of sobbing. There was so much pain in that place. It was in the walls, and you could feel it physically when you walked through the door. It hurt so immensely to learn that a loved one wasn’t okay. The pain seeped into the air and rubbed off on the people nearby. We could smell it.
It was a pain I never could have imagined. It was all-consuming. Nothing else had any meaning. I wished with every cell in my body that I could escape it. I would do anything if only I could go home and not have to go through this. Perhaps my own pain was amplified by the others’. In the end, I couldn’t tell which emotions were my own. I barely knew what was real anymore.
Life outside the NICU was like a different planet. It was convenient for me to flee to that other world, but while I was there I yearned to go back. My thoughts were always with Ludvig and Yvonne.
In the outside world, the big news was the war in Iraq. The whole world was being drawn into an imminent war. It felt completely unimportant. The only important thing in my life was protecting Ludvig from danger. I tried to maintain some sort of strength for Yvonne and for the outside world, and at that time I was working intensively with the script for Sune’s Christmas, which was to be that year’s Christmas miniseries on TV. But inside I ached with fear, and every time I came back to the hospital I dreaded hearing something I didn’t want to hear.
We were sitting with Ludvig and feeding him through his port. It was morning, and the nurses were going around carrying out their various tasks. They were friendly and tried to show us sympathy. We’d noticed that many of them were very young, but some could have been mothers themselves.
Maybe one of them had had an experience like ours. Maybe one of them could understand what we were going through.
We turned to one of the nurses and asked when it was time for rounds. Maybe today we would hear that we could go home. Maybe everything would be okay once we’d talked with the doctor. Maybe we could finally be a normal family.
Then I saw the way the two nurses looked at each other. Everything I’d been fearing for the past week was contained in that look. Everything had been confirmed in a look I wasn’t meant to understand.
It horrified me to know with certainty that something was very wrong with Ludvig. My body went cold and all the color drained from the room. My mind was thick and slow. It was as if everything outside that one clear insight had simply stopped. The nurses knew something we didn’t. And I wasn’t sure I wanted to know.
I reacted to my fear by projecting everything onto the two young nurses. I was mad at them. Furious that they claimed ownership of facts about our son and our future, facts Sören and I should have been first to receive. Strangers knew more about our son than we did, and it enraged me. Did they seriously think they could give each other looks without my noticing? Didn’t they know I was watching their every slightest gesture? I wanted to take our son and get out of there. I wanted no part of this.
My pain and despair had transformed to anger, which was so much easier to bear. My anxiety had nowhere to go, so I converted it into rage against the hospital staff. This gave me temporary relief—it felt good to direct all my emotions at a single target.
The doctor came into the room and asked if he could speak with us privately. It felt unreal to know all our worries and angst were about to be confirmed, that everything was about to culminate in something we’d never wanted to consider. We were about to find out that something was wrong. Life felt so unfair. We grieved for Ludvig, for how his life might turn out. We were terrified.
Filled with these emotions, we followed the doctor and Ludvig’s primary NICU nurse down the corridor to a small meeting room. We sat on a hard, narrow sofa, and the doctor sat across from us with Ludvig’s chart, which in a matter of days had expanded to a thick bundle. The nurse sat in a chair off to the side. On the table in front of the sofa sat a box of tissues and a candle. This was a room where people cried.
“We’ve been observing Ludvig for a few days,” the doctor began, “and we have a suspicion. But we’re so unsure about it that we took a vote this morning to decide whether to share it with you. We suspect that he has Down syndrome. We need to do a test to be sure, and we should have an answer in about two weeks.”
Everything felt surreal, like I wasn’t there. My body grew colder and colder and I felt so far away. A sort of film wrapped around me and my senses. Everything slowed down. I was inside a bubble, and there was a wall separating me from reality. Sounds were distant and faint, I couldn’t see properly, and my body felt sluggish. I had an urge to reach out and see if I could actually feel the film between me and the outside world. I felt sealed off. I was simultaneously stunned and horrified.
This couldn’t be happening to us. I could see us sitting on the sofa in front of the doctor, but why was I so far away? I couldn’t understand, couldn’t make sense of the situation. I couldn’t let reality in. It was only my body that was there.
I looked at Ludvig and was overwhelmed by a mixture of love and grief. I wanted to hold him close and protect him. I couldn’t face the thought of what he might go through in the future.
The tears flowed. Something broke. Maybe the tension had eased now that we finally had some concrete knowledge. I wasn’t crying hard, but the tears wouldn’t stop.
It was a strange feeling. I was stunned inside my bubble, but at the same time I was extremely conscious of how the tears felt against my skin. Of how the tissue grated against my nose. Of how Ludvig looked and how Sören felt. And I wanted to save Ludvig from everything.
It was like a movie. Some movies have unhappy endings. This was one of those where the hero dies or turns out to be something other than a hero. We sat there with the doctor and I tried desperately to breathe life into an impossible dream. I wanted to rewind the tape and have the doctor say something different. In that moment I chose to cling blindly to the tiny bit of hope I’d been given. There was a chance he didn’t have Down syndrome. This could still turn out to be just a bad dream.
It felt like my head was in a vise that grew tighter with every second.
I was struck by a desire to flee. It was partly physical: take Ludvig and run away from this place and this doctor and his words that burned a hole inside me. But I also wanted to escape inside myself, to the dream of how it should be. The dream of a child who was the logical continuation of our shared life. I wanted to close my eyes and stop seeing. I wanted to close my ears and stop hearing.
Ludvig slept so sweetly in my arms. His stillness touched me profoundly. He was so beautiful. No doctor in the world could take that from me.
The doctor told us there are twenty different symptoms for Down syndrome. If between five and eleven symptoms are present, Down syndrome is suspected and a blood test is ordered. Ludvig had only four symptoms: slanted eyes, loose skin at the back of the neck, muscle weakness, and weak reflexes. He didn’t have the more typical symptoms such as deeply creased palms or folds at the inner corners of the eyes. Children with fewer than five symptoms usually don’t have Down syndrome; nevertheless, they suspected it in Ludvig.
While we waited for the test result, Ludvig would need to undergo and EKG and an ultrasound on his heart. Heart disease is common in children with Down syndrome.
We heard the doctor talking but we had difficulty understanding him. What registered most clearly were the words our hopes could cling to. That it might not be true. That we wouldn’t know for sure until two weeks from now. How could we wait two whole weeks? It was too long. The doctor told us how things might go, about complications and possibilities. That it was better to care for the child ourselves than to put him in an institution as parents used to do. Our response was that nobody was going to take Ludvig away from us.
“He is still your little prince, after all,” the nurse said suddenly and looked at us with a smile, as if trying to mitigate the awful news we’d just received.
All of our grief and vulnerability in that moment triggered a fierce reaction to her words. How dare she say such a thing? Didn’t she understand anything about what we were going through? What did she mean, he was “still” our little prince?
Did she think Ludvig wouldn’t be our little prince anymore? The thought hadn’t even occurred to us. Had he turned into a frog? Into some kind of freak? Could he no longer be a prince after this news?
We took her comment as an insult, as if she thought we were incapable of seeing Ludvig for who he was.
We turned to the doctor.
“Do you believe he has Down syndrome?” we asked, unsure we could bear to hear his answer.
“I believe he has Down syndrome,” he replied, and we were grateful for his honesty.
After the meeting we sat and held our child. It was as if we were afraid someone would suddenly snatch him away from us. And perhaps that was exactly what had happened. The child we thought we’d had had been taken from us. He was no longer there. He was gone, and he’d actually never even existed. We had a different child now, and we would have to get to know him. How could everything have changed so fast?
We wanted the child we’d loved and come to know over the past nine months. The healthy, normal child.
We loved Ludvig, but it was hard to accept what came with him—Down syndrome.
Grief and loss washed over us.
The beloved little healthy boy was no more. He never had been, except in our dreams.
For Ludvig, nothing had changed. But for us everything was different. We realized that we didn’t know who our son was, that we needed to get to know the new prince. Who was he, and what did he have in store for us?
Our vulnerability brought us closer and forged a bond between us. We couldn’t erase or alleviate each other’s sorrow; each of us had to manage and work through it on our own. But there was strength and comfort in being two, a tacit mutual promise that we would get through this. That we would make it into something good.
We made a promise to Ludvig that we would always be there for him.
Waiting for the test result was like living in a vacuum. Everything paused and our existence was focused on Ludvig’s condition and his exams. We suspected he had a chromosome abnormality, but we wanted our healthy child so desperately that we did everything we could to suppress those thoughts. We didn’t want to exchange our dream child for an unknown boy, no matter how beautiful he was. We mourned our dream, and it was hard to accept that life had taken such a turn.
We phoned our loved ones and told them about the suspicion. They were upset and concerned and wanted to comfort us, but their attempts at encouragement were hard to receive. What they intended as comfort we often saw as mere empty words. We longed to talk to someone who really understood what we were going through, someone who could feel our anguish and fear. We were so fragile that one wrong word could open the floodgates. It was hard not to simply lock up our grief and keep it to ourselves.
It became increasingly clear to us that the child we had was entirely different from the one we’d imagined. We mourned the child we’d never had, even as we loved the real, flesh-and-blood child. It was as if two parallel universes had emerged before us. On one side was the dream child who no longer existed and who needed to be mourned. On the other side was Ludvig, the child who’d chosen to come to us instead. And he was something else entirely.
Little by little I became familiar with this person who’d grown in Yvonne’s belly all those months. And I really liked the person I got to know. I felt him in my arms and breathed his scent, and my love for him grew each day. Some of the people we’d called wanted to protect themselves and avoid confronting the unfathomable pain we were carrying. The weren’t prepared to meet our sorrow head-on, so instead they tried to cheer us up by saying Ludvig was just fooling, that he didn’t have any impairment at all.
Others didn’t even believe Ludvig had Down syndrome. They thought he simply resembled his father.
In other words, I reminded them of a person with Down syndrome.
It got me thinking, wondering if maybe I had some developmental disorder nobody had noticed before. It would explain why I’d felt so different my entire life. I even stood and looked in the mirror to see if I could pick out any peculiar traits that might expose my latent intellectual disability.
They wanted to take an EKG of Ludvig, since heart disease is common in children with Down syndrome. I walked with him down the long hospital corridors. A nurse showed me the way. She started talking about her experiences with her own kids, but I couldn’t bear to listen. I became progressively more annoyed. I didn't care about her children. My sole interest was in Ludvig and the EKG. What if there was a problem with his heart? What would that mean? I was fighting to keep my emotions under control because I wanted to be strong. This woman’s small talk was not helping.
They undressed Ludvig and laid him on the hard examining table. He immediately started shrieking. Maybe he was afraid of all the people, or of the harsh light. Maybe something was hurting or irritating him. For the first time in his life, he was protesting and screaming with real power. I was filled with both joy at his unexpected strength and concern that he was frightened or in pain.
I saw how exposed and defenseless he was and I wanted to strip him of all the wires and all the people. His vulnerability was a preview of how the rest of his life would likely turn out, how exposed he would always be.
For a moment I was able to separate Ludvig from his condition. He may have had one chromosome too many, but above all he was our beloved boy and he belonged with us forever. The dream of the perfect child released its grip ever so slightly and I saw the real child more clearly. I caught a glimpse of the gift we’d received instead of the one we’d dreamed of.
This insight into his vulnerability jostled me awake for a moment. It created space for me to accept Ludvig for who he was.
I still hoped for a negative test result, but the experience had broken through my shock and brought Ludvig closer to my heart. For the first time, the number of chromosomes didn’t matter. First and foremost he was my child, and I yearned to take care of him and create something good for him.One afternoon we were visited by a nurse we had never seen before. She said she had asked the doctor if she could meet us and he’d said no, but she’d decided to come and find us anyway.
Her own daughter had Down syndrome, and she thought there might be something she could say to give us comfort and solace.
She understood what we were going through.
She began to tell us about her little girl. She described her with love and pride, as parents often do when they talk about their children. We saw fragility in her, but also great joy. She told us how the shock of having a “different” child had transformed into joy and love. She told us how right life felt.
She talked about what it was like having a child with Down syndrome. We got a window into their life, and it didn’t seem as daunting as we’d imagined. We were struck by the way this woman had accepted and settled into her life just as it was.
Her fragility in no way diminished her joy and pride in her daughter. On the contrary, she seemed to marvel at her little girl and at life itself. She seemed so happy about her daughter—a girl with Down syndrome—that we were completely bowled over. Her story shook us up, and we recognized that she’d given us a valuable gift. She seemed to have gained both warmth and wisdom from her experience, and she saw life as more than a series of foregone conclusions. But the most important thing wasn’t what she said; it was the way she glowed when she talked about her child, a child with a disability. We sensed a profound richness in this woman.
We were so grateful to her for meeting us in our grief and not being afraid of it. She laid herself bare and shared her story with us, and it gave us a new perspective on our own situation.
It felt like we’d been invited into an unknown world. This woman shared her own life experience and did it with such warmth and joy that I suddenly felt hopeful about this child we had. Ludvig was an entirely special sort of prince. Maybe he wouldn’t achieve everything we’d dreamed about or expected, but he could be something different. Something we hadn’t even thought of yet.
It was now clear to me that life with Ludvig need not be a disaster at all. At the same time, a picture came into focus of a child who would need our support and engagement for many years to come. My image of a child with Down syndrome had transformed; where there had been sheer darkness, I could now see a glimmer of light.
The conversation opened new areas of contemplation. Why was it so important to me to have a healthy child? Why did I view Ludvig as a failure? Why did I see only the suffering? The answers weren’t important, but the questions threw my self-image and my outlook on life off-balance. Suddenly the question “Who is Ludvig?” was less confounding than the question “Who am I?”
My self-pity took a hit. The woman we’d spoken with was at peace with her life. She felt no pity, for herself or for her daughter. Could it be that I wasn’t so pitiful, either? That even Ludvig wasn’t? This cloak of victimhood that had become like a second skin—would I have to take it off now?
I was bewildered. Something in me crackled. A process within me was getting underway; my sorrow and my prejudices began to yield. Something new was taking shape between me and Ludvig. A thaw had begun.
Maybe Ludvig was a gift to be cherished. In my grief I’d seen him as a dud, a mistake my body had created. I’d wanted to change him, to reach in and pluck out that damned extra chromosome. But that was slowly starting to change. Little by little I began to embrace Ludvig beyond the chromosomes, the tube feedings, the tests and the suffering. Beyond my preconceptions. I began to rediscover my child. This strange little individual didn’t seem as threatening as before, and my love and acceptance of him grew. His presence no longer brought me only pain.
We’d suddenly found ourselves in an unfamiliar place where we had no experience to draw on. No tools to manage our despair. Our dream was gone, and what did exist here was foreign to us.
Our conversation with that woman was a turning point.
Perhaps the truth is that sorrow and pain illuminate the beauty and joy in life, that it’s hard to see the wonderful things if you haven’t experienced the opposite. Maybe we appreciate the highs precisely because we’ve been to the abyss. The opposites create clarity. They depend on each other.
Take nothing for granted; accept whatever life may bring—perhaps this is the key to happiness. In our case, we found that the more we allowed ourselves to say yes to Ludvig, the greater joy we received.