Cornelia de Mariia

I felt relief. One less problem. Now I only had to wait for the bilirubin to start dropping. Masha continued lying under the lamp day and night. On the third day, we got a new roommate. A young mother with scared eyes. She was a first-time mom with a large baby boy, over 4 kilograms. Compared to Masha, he looked enormous and cried constantly, demanding food. He only calmed down when the bottle with formula was in his mouth. I envied that. I wished Masha would eat and gain weight like that. But besides his good appetite, there wasn’t much to envy. He cried endlessly. To the point that his chin, face, and hands would tremble. Sometimes, it seemed like he might just faint. His mother’s attempts to soothe him weren’t helping. For the first couple of days, I felt sorry for both of them. I even tried to help – keeping an eye on him, trying to calm him so she could at least get to the bathroom. By the third day, I was deeply irritated. They’d tried to reassure me, saying that newborns don’t hear well in the first weeks and usually don’t disturb each other much, but that was little comfort. I don’t know how true it was, but both Masha and I were disturbed. That much was certain. Sleeping was impossible.

By the fourth day, I hated that child. I’m still ashamed of those feelings, but at the time, I couldn’t help myself. Sleep deprivation was taking its toll; I was becoming aggressive. When the crying escalated to projectile vomiting, I thought, “This baby must be sick.” He evoked a strange sense of unease in me, as if I were looking at a dangerous wounded animal. The mother occasionally asked me to hold him while she hurried to change his soiled blankets. I agreed, but honestly, I didn’t like it. I didn’t want to touch him any more than necessary. I just wanted to go home.

Could I have imagined then how many times I would remember that baby and my feelings toward him?

The doctor came for her rounds in the morning. As always, she examined Masha carefully.

“Are you sure you want to name her Masha?”

The question surprised me. My husband and I hadn’t even considered other names. It was so natural that imagining another name was impossible.

“Too simple a name for such a girl,” the doctor said, leaning over the incubator, taking her tiny hands, and looking intently at her face.

I remained silent. For what kind of “such a girl”? It seemed as though Masha had cast some kind of spell over her. Maybe she sensed, with her medical intuition, that something about this child was unusual. But at that moment, I thought it was simply because Masha was exceptionally beautiful. And maybe her name was too plain for such a beautiful baby – without a doubt, the most enchanting child in the unit. But that didn’t change our choice. She was Masha, and it couldn’t be any other way.

The bilirubin levels began to drop, her yellowish tint was fading, and her condition was stabilizing. Finally, this nightmare was ending, and we were ready to be discharged. I hurriedly packed our things, glancing from time to time at the glass between the rooms. A mother had come to visit one of the babies lying there. The nurse explained that this baby had been there for a while and needed surgery, and that the mother had other children waiting for her at home. She had to be home but visited every day. At the time, this shocked me. How could you be somewhere else while your child was in the hospital?

That year, Masha’s first year of life, became a year of revelations. I began to see the world through new eyes. I started noticing things I’d never paid attention to before. Not everyone lives like me. There are sick children in hospitals without their mothers. Among them, there are children who’ve been abandoned, who will be transferred to orphanages after treatment. The side of life I’d only heard about in passing actually exists.

But I didn’t want to dwell on that. That’s their story, and mine is entirely different. We’re finally going home, and these horrible two weeks are coming to an end. Back then, it felt like I’d been through a serious ordeal – so many days in the hospital, sleepless, constantly worrying. And now, when friends tell me about their own sleepless nights because their child had a sore throat, I smile at first. But then I remember my former self, when I truly believed that nothing could be worse than those two weeks in the hospital. You hear scary stories, but do they have anything to do with you? No, that’s all very distant, and your child’s fever of 38.6… that’s what’s truly awful! And no matter what condition another’s child is in, your own child’s illness always feels more severe.

Why am I describing those first days in such detail? Because from the very beginning, there were odd little signs. But each one alone wasn’t life-threatening or out of the ordinary. Jaundice, extra chordae, weight and appetite issues. All of these are common enough among babies and weren’t grounds for further examination. The doctors had no reason to suspect anything serious. And I didn’t have the experience to even imagine anything alarming. A possible heart defect. At that time, I couldn’t have imagined anything more terrifying.

_________

At home, a period of calm began. Everything settled into place. Sasha examined Masha as though she were a new living doll. My husband took on most of the care for our eldest, who was just two years and four months old. Still so little, but to me, she seemed mature enough to understand her mom’s new responsibilities. Every morning, my husband took Sasha to daycare, where she was just starting to adapt to the new environment. To my relief, it went quite smoothly for her.

And my primary focus as a mother was singular – to nourish my newborn. I was allowed to breastfeed, and I dedicated myself to it. To be honest – don’t throw shoes at me for this – I never enjoyed breastfeeding. Don’t get me wrong; it wasn’t because I worried about losing my figure, or about food restrictions, or any of those usual concerns. Not at all. It was the constant anxiety: Is she latching well? How much is she eating? Is she getting enough? What if she isn’t? Now I realize this was something like an “anxious mother syndrome” that kept me from fully enjoying motherhood. But I couldn’t help it. It was beyond my control.

It started with Sasha’s birth, when I felt she wasn’t eating enough. She would nurse intently for about five minutes and then lose interest entirely. How could she eat properly in just five minutes? In my mind, a baby should nurse for forty minutes, staying on the breast until it was entirely drained. I went through a period of weighing Sasha after each feeding, and some doctors only heightened my anxiety by saying she was “underweight,” at the lower edge of the norm, and that something had to be done urgently. And so, I did my best, constantly worried, and failed to notice that my one-year-old could already walk, use the potty, and was so bright and quick. It made me happy, of course, but this underweight label overshadowed everything. How easily we can miss a sea of pure joy because of one murky drop.

With Masha, the story was repeating itself. So, imagine my joy when I saw her weight reach 3,500 grams. She was exactly one month old, and I felt immensely proud. She’d begun to grow, rounding out a bit. She was “mama’s little girl,” and that filled me with joy. Now, I had my lovely “Snow White” and, with Masha, my lovely “Rose Red.” Masha resembled me right from the start: dark hair, prominent brows, big brown eyes, and long lashes. Yes, she would grow up to be beautiful.

The only thing clouding the days spent adoring our little girl was her poor sleep. Masha didn’t sleep well. I’d heard countless stories about babies who struggle to sleep for all sorts of reasons, but it was hard for me to imagine. My eldest had always been a good sleeper. So much so that it sometimes worried me. She could sleep through the entire night by the age of four or five months without waking up even once. There were nights I’d wake her just to feed her – after all, she had that “underweight” label hanging over her. In short, the “anxious mother syndrome” kept neither me nor my child at ease.

With Masha, it was a completely different story. She would fall asleep quickly enough. I’d lay her down in the cradle, and she’d sleep peacefully for about thirty minutes. Then she’d start fussing, wake up, stay awake for a couple of hours, and then drift off again. But only for another forty minutes. And so it went, over and over. When I realized her sleep pattern wasn’t improving, I moved down to the first floor of our two-story house to avoid disturbing anyone with my nightly pacing.

I started to grow tired and irritable from the lack of sleep, and, naturally, it worried me. There had to be a reason for her poor sleep. What was bothering her?

“You had it easy with Sasha and her peaceful sleep. Masha is different, like most kids,” my father-in-law said to me one day.

He went on to share stories about how poorly his eldest son had slept, crying through the night, and how his eldest granddaughter hadn’t been a good sleeper either. I have to admit, these conversations were reassuring. They explained everything: all newborns sleep poorly, and that’s normal.

Sleepless night followed sleepless night. Masha and I set up camp in the large living room, which was open to the kitchen – a convenient layout for an active nighttime routine. All the baby items and equipment – the crib, the cradle, the stroller – were moved into the living room. The large sofa was always unfolded, and we spent most of our new life there.

During this period, a constant sense of worry began to settle within me. Sometimes it was faint, and I could push it aside with just a glimpse of Masha’s soft smile. Other times, it grew stronger, filling my whole soul and pushing out every other thought. Something was wrong. But I couldn’t pinpoint exactly what. I couldn’t identify the cause of this growing anxiety or what was triggering it.

Most of the day, it was just Masha and me alone in the big house. There was always plenty to do, but with each passing day, I felt less energy for those tasks. October had come. Outside, it was gloomy. I was washing dishes, lost in my troubled thoughts. Within my line of sight was the television, which displayed footage from the outdoor security cameras. I could see the yard, the front entry, the driveway, and even part of the neighboring houses. It’s a very handy setup, providing a sense of security and control, especially when you’re home alone. I cast a quick glance at the screen – a habit that had become almost unconscious, watching every familiar inch of the perimeter.

Something seemed out of place. The door. The large, metal front door. Someone was standing by it. I flinched. The cameras sometimes show a blurry image, so I moved closer for a better look. There was definitely someone by the door. I turned off the water and froze. The front door was maybe ten meters from where I was standing. Huge windows looked directly onto the front entry, so I only needed a few steps to look out and see the uninvited guest. At first, a wave of fear washed over me, but common sense took over. Even if someone had somehow entered the yard, getting into the house would be nearly impossible. I moved closer to the window but didn’t go right up to it. No one.

God. This is all from the sleepless nights. My head was spinning. Rational thoughts tried to break through but were stopped by a wall of fear. What was this? I looked out again, this time pulling back the curtains and stepping right up to the glass. Nothing. I went back to the television. And now, there was no one there either.

All right. Time for a walk to clear my head. I got Masha ready, trying to think of nothing, and went out into the yard. Yes, I needed more walks and more sleep to stop seeing things.

_________

But sleep continued to elude us. To the unexplained anxiety were now added noticeable digestive issues. Masha would wake up at night, her tummy bloated and constantly gurgling. Colic. Of course. My eldest hadn’t had this problem, so, as always, I dove into the depths of the internet to study this new challenge. Colic – spasmodic intestinal contractions caused by impaired motor function and gas buildup – affects around 70% of newborns and lasts until about 4—5 months. This information was reassuring. It explained everything. Just a few more months, and everything would settle down.

I stocked up on remedies, from “Espumisan” to a gas-relief tube, hoping to ease Masha’s discomfort. But, to be honest, none of it helped much. All that remained was to wait for the magical four-month mark, when, according to the internet, things would improve.

One night, as usual, we drifted off to sleep fairly quickly. A strange noise woke me up. Still groggy from my broken sleep over the past few weeks, it took a while to wake up fully and figure out where it was coming from. In the darkness, I carefully sat up on the sofa. Holding my breath to avoid waking Masha, I listened closely. The sound was coming from her cradle. She was snoring. I sighed deeply. Now, a cold was all we needed. It seemed her nose was completely blocked, and she was struggling to breathe. I lay back down slowly but couldn’t fall asleep. My mind was already busy, making a plan: rinse her nose with Aqua Maris, check her temperature, and maybe call the doctor.

The pediatrician found nothing serious. The diagnosis was a respiratory infection, with instructions to rinse her nose and, if necessary, use decongestant drops to help her breathe. And once again, her vaccinations were postponed until she was completely healthy. From that day on, Masha slept even worse. Naturally, it’s hard to sleep soundly when your nose is blocked.

Every night, I went through the same routine on repeat: Espumisan, tummy massage, gas-relief tube when she was very uncomfortable, nose rinsing, drops, rocking, feeding. None of it brought lasting relief. Masha would fall asleep briefly, then startle awake, and we’d begin the whole cycle again.

After a few days, I began to realize we didn’t actually have a respiratory infection. No fever, no runny nose, but Masha kept snoring, and it clearly bothered her. It was starting to make me genuinely uneasy. What if it was something serious? I arranged for Masha to see a good ENT specialist at the regional hospital. The doctor examined her carefully: nose, ears, mouth. No abnormalities were found. Still, the doctor suggested that the snoring might be caused by narrow nasal passages. Her little nose was so small, and her bridge was somewhat sunken. Wonderful! Another plausible explanation. Once again, I felt a measure of relief. But not for long.

__________

Time passed. All the usual issues with a newborn continued. I kept convincing myself that these were temporary difficulties and that I just needed to endure them. Our wonderful pediatrician’s visits were always reassuring. This was the doctor who accompanied Masha and me for six years, one of the few to whom I am endlessly grateful for her compassion and genuine concern. I often wondered, why can’t all doctors be like her? I got my answer about a year and a half later, when she shared her own story: her eldest son was disabled. She knew what lay ahead for us and was doing everything she could to help. But that was later. For now, she examined Masha, noting that the baby was a bit soft, with a very short neck. She showed me how to massage her to help clear her chest. But overall, she saw no other issues.

Winter crept up on me, and with it came New Year’s. New Year’s Eve was just like any other night. Masha would fall asleep for a little while and then wake up restlessly, just as before. To the family, Masha seemed calm, even passive. “Such a lovely baby, doesn’t fuss or cry.” But that didn’t comfort me. I was starting to notice developmental differences compared to my older daughter. Masha had started rolling over – though only to one side – she smiled, watched her older sister, and already looked at her with adoration. But remembering how, at this age, Sasha was getting on all fours, trying to grab a spoon and bring it to her mouth, along with anything else within reach, I started to worry. Masha didn’t have those skills yet. But all children are different, of course. That explains it all.

That evening, I was bustling around the kitchen again. It was getting dark. I glanced at the footage from the outdoor cameras. My husband was smoking by the door. Imagine my surprise when I heard his voice behind me. He had already come inside a while ago. I looked out the window. The silhouette was still there.

At the time, I dismissed it as a result of sleeplessness and constant fatigue. It had to be just shadows playing tricks on my exhausted mind. But I couldn’t shake the feeling that it wasn’t just my imagination. How could an optical illusion so closely resemble a person? I looked out the window again. This wasn’t a hallucination or tricks of light, nor a phantom conjured by chronic exhaustion. It was a person. And he was watching me. What could this mean?

Over time, I started to see this as some kind of ominous sign: could it mean I would die soon? Had this person come for me? I couldn’t be losing my mind, could I? I was afraid to admit these visions to anyone, even to my husband, for fear he would doubt my sanity.

Now, years later, I understand that it was my intuition. In talking to other special-needs mothers, I found that many of them had felt something similar. To varying degrees, they sensed it! For some, a sense of unease had crept in during pregnancy and slowly took root; for others, it came right after birth. Some were haunted by terrible dreams and dark premonitions. And it’s nothing like the usual daily worries all parents have for their children. This is something else – a feeling of an impending disaster. Some might call it postpartum depression, but no. It isn’t about exhaustion, apathy, or a lack of strength. It’s a fear we try with all our might to suppress. We listen to the rational voices of doctors, who always offer a logical explanation, and we’re relieved to believe them. There’s a bit of mystery in it, of course: the mind logically organizes everything, but something in the heart stirs and dictates its own terms. You feel torn between logic and a nagging inner turmoil, not understanding what that voice is trying to tell you.

My intuition didn’t retreat. It kept returning to my door, bringing waves of worry. I arranged a check-up with the doctor at the city hospital who had monitored Masha’s elevated bilirubin levels. I could no longer handle the internal tension. I needed another dose of reassurance.

“The baby’s fine, a little behind, but nothing critical. Just give her some massages, work with her.”

Of course. Massage. We’d done a few rounds of massages with Sasha, and we thought it was very beneficial for her development. Surely, it would help Masha too. I contacted the same specialist, and we began “helping” Masha. I placed a lot of hope in this massage. If the baby is good and the delay is minor, surely, she’ll catch up quickly.

We started the course. Masha endured the sessions fairly well, only fussing occasionally. She watched this new person with a very intent, serious gaze.

“What big eyes she has. Such a deep look. Sometimes it feels like she’s looking right through me,” the massage therapist noted on the fourth day.

It was February 5, 2015.

February 6 would change our lives forever.

_________

February 6, 2015

8:00 p.m. It was a typical winter evening. We’d just finished bath time with the girls and settled together on the large couch as a family. Masha was enjoying an “air bath,” lying on her tummy with her bare bottom in the air, watching her sister. I was gathering everything needed for yet another sleepless night.

I laid Masha on her back to put on her diaper, taking a moment to kiss her tiny body. She responded with a smile, and I noticed her eyes watering just a bit. “It tickles!” I thought. With practiced movements, I fastened her diaper and picked her up.

And suddenly, something changed. My hands still remember that sensation. Masha went completely limp: her head, arms, and legs drooped like little strings. I only managed to say, “Something’s wrong!” And my husband was already beside me. We were confused. What had happened? He shook Masha’s hands – she was clearly unconscious. The horror and panic intensified when we realized she wasn’t breathing. Was she gone?

My husband tried to open her mouth but couldn’t and rushed to grab a spoon. We tried to pry her mouth open with the spoon to get some air into her, but it was nearly impossible – her mouth was tightly clenched, so much so that we couldn’t open it even a millimeter. The idea of giving her water was out of the question. It was strange: her whole body was limp, but her mouth was firmly shut. My husband ran to call an ambulance. I held Masha in my trembling arms, trying to bring her back to consciousness.

“What carrot juice?! The child isn’t breathing! Do you hear me at all?!” he shouted, frustrated. The dispatcher clearly didn’t grasp the severity of the situation and suggested putting carrot juice in her nose.

To their credit, the ambulance arrived quickly, though at the time it didn’t feel that way. By the time they arrived, Masha had started breathing again, regained consciousness, and appeared no different than she had 15 minutes earlier.

What was that? The doctors – two men – carefully examined her. There was nothing immediately life-threatening. One of the doctors asked me to recount what had happened, second by second, then concluded: this was likely neurological, and we should consult a neurologist to determine the cause of such an episode. This diagnosis didn’t scare me too much. I was just relieved that Masha was alive. The worst was over. Or so I thought.

“Something neurological.” Naturally, I turned to the internet and spent half the night searching. As always, I found a million possible causes for this type of fainting spell, from the harmless to the life-threatening. My intuition was banging on every door, but I pretended not to hear it. I didn’t want to hear it. I decided I’d call my mother-in-law – she’d help us find a good doctor. She’s always been there to help. And a good doctor would get to the bottom of this, and everything would be fine.

A few days later, we were admitted for a full examination. Nothing similar had happened in the meantime, and my mind began to calm a little. Everything seemed as it had been before. We were placed in a private room for a mother-and-child stay. Masha was only a few months old at the time. Compared to the other babies, she seemed enormous and was showing good development: holding her head up, looking around intently, and smiling. The room had a small crib on wheels for babies, in which Masha still fit easily, and a large bed for the mother. We spent most of our time on that bed. It was there that Masha began actively trying to get on all fours and rock back and forth – and she was succeeding! This gave me hope that nothing serious had happened. After all, she was developing.

They took all the necessary tests from Masha, performed an EKG, an ultrasound of her internal organs, and an ultrasound of her hip joints. All the results came back the same: no structural abnormalities. An ophthalmologist checked her eyes and found no abnormalities in the retina. All this gave me hope; there was clearly nothing terrible. Only a consultation with the geneticist remained.

At that point, the thought of seeing a geneticist didn’t worry me much. If a genetic consult was recommended, so be it. I couldn’t even imagine that the word “genetics” could in any way affect my family. After all, I knew my lineage up to the seventh generation (thanks to my “Something neurological.”) Naturally, I turned to the internet and spent half the night searching. As always, I found a million possible causes for this type of fainting spell, from the harmless to the life-threatening. My intuition was banging on every door, but I pretended not to hear it. I didn’t want to hear it. I decided I’d call my mother-in-law – she’d help us find a good doctor. She’s always been there to help. And a good doctor would get to the bottom of this, and everything would be fine.

A few days later, we were admitted for a full examination. Nothing similar had happened in the meantime, and my mind began to calm a little. Everything seemed as it had been before. We were placed in a private room for a mother-and-child stay. Masha was only a few months old at the time. Compared to the other babies, she seemed enormous and was showing good development: holding her head up, looking around intently, and smiling. The room had a small crib on wheels for babies, in which Masha still fit easily, and a large bed for the mother. We spent most of our time on that bed. It was there that Masha began actively trying to get on all fours and rock back and forth – and she was succeeding! This gave me hope that nothing serious had happened. After all, she was developing.