Бесплатный фрагмент - Cornelia de Mariia

Recommended: Dear English-speaking reader,

As you dive into these pages, please remember that I come from a Russian background. My story, like any story, carries the weight of its original language, and while translation may alter some nuances, I hope the heart of my experiences still reaches you. Thank you for your patience and understanding as we bridge these languages and worlds together.

The same brown hue, the shape, the lashes,

Soul to soul, we walk our winding paths,

Taking flight like wounded birds.

In your eyes — an endless sorrow,

Despair, reproach, and pain…

They hold the cosmos…

Distance beyond distance…

A million voiceless sounds linger there…

In your eyes, a vast and boundless love,

The wisdom of past lives, and suffering.

There lie debts unpaid,

Depth…

Strength…

A calling…

Your eyes reflect mine:

Their gaze stirs quietly beneath the heart.

They don’t understand words…

But must they?

When the Universe lives in her gaze…

O.T. 2020

From the author

Cornelia de Lange.

Few doctors recognize that behind this beautiful name lies one of the most severe genetic syndromes in the world.

Marusya was born wanted, and everyone believed her to be healthy. But from five months on, problems began. Diagnoses poured in one after another: focal-resistant epilepsy, West syndrome, severe developmental delay. She was fading before our eyes. Only after four years of struggle, treatments, rehabilitation, trips to the best doctors, and endless attempts, was the primary diagnosis — the root cause — finally made: Cornelia de Lange syndrome, in an atypically severe form.

Did my world collapse? No. The world had fallen apart much earlier. By then, enough complications had accumulated to make it clear: there was no chance for a normal life. Moreover, the diagnosis brought me a sense of relief. I could finally fall asleep without the tormenting questions of why my child was the way she was. Knowing is always better than not knowing, no matter how painful it is.

What now? Now Marusya is eight, and our challenges remain unchanged. Marusya cannot walk independently, doesn’t understand speech, cannot chew, is not potty-trained, and so many other “cannots.” Every day, we continue to suffer from three types of epilepsy, which we cannot control due to the complex genetic nature. Marusya finds herself in intensive care more frequently now, each time slipping further into regression. And our prognosis, as doctors would say, is quite unfavorable. We have palliative care status — in simpler terms, Marusya is a hospice child. But! She can smile. And she is incredibly beautiful. Each day lived with a smile is already a great joy.

And how am I? Over these years, I have gone through all the stages of grief: from despair and thoughts of leaving life behind to complete acceptance. I have a law degree with honors and spent several years working in the field. December 3rd still brings congratulations for Lawyer’s Day. But now, I pay attention to this date for an entirely different reason.

Did I know that December 3rd is International Day of Persons with Disabilities? No.

Had I ever been interested in this topic? No.

What did I do if I happened to see a person with a disability on the street? I quickened my pace and looked away, just like most of us.

It’s all somewhere far away.

It happens to someone else, never to you.

And surely, these people bear some responsibility for their circumstances.

It’s easier for us to think this way.

So now, when I see an indifferent or fearful reaction to my child, I immediately want to lash out, but in a second, I remember myself — the person for whom December 3rd was only Lawyer’s Day.

I write a small blog where I honestly share our unique life.

Do I want pity and support? No. I’ve long since been the one giving support to others.

I hold my head high.

I don’t show anyone, not even myself, the pain that fills my entire being.

I resist, hoping for better changes.

I hope things won’t get worse.

I grow tired and sometimes simply don’t want to exist.

And at the same time, I am terribly afraid that one day, it will all come to an end.

I keep loving my eternal child with my weary heart, and I just want people to know of my daughter’s quiet existence and to see the magic in her eyes.

I have no goal of impressing you with artistic language. I stay true to myself and continue to write in the very style that many of you have come to love. Even less do I aim to inspire you to great deeds, to motivate you, or to show you “the right way.”

I don’t know the right way. I write it as it is. And as it was for me.

Our honest story…

Part 1. Life “Before”

I was sitting on the operating table in the maternity hospital, head slightly bowed to my chest, back arched. The anesthesiologist was administering a local spinal anesthetic. This was my second C-section; the sensations were familiar. I trembled slightly. My hands and feet shook, perhaps from fear, from the cold, or from memories. After all, two years ago, I had sat in this exact same position on this very table, only then, it wasn’t just nervousness — I was consumed by terror and panic.

My first delivery was an emergency. Everything happened unexpectedly for everyone involved. It’s a miracle we managed to avoid catastrophic consequences. My eldest girl wasn’t breathing when they delivered her. Triple nuchal cord entanglement. It seemed improbable, especially in the late stages of pregnancy, just days before delivery. But everything improbable can still happen. This would become even clearer to me in a couple of years.

This time, everything was different. Everything went according to plan. The C-section was scheduled at 38 weeks. Given the polyhydramnios, the large belly, and the scar on my uterus, the doctors decided not to wait. The baby was ready. Everything was exactly as it had been two years ago, but without the rush.

They delivered Masha. She let out a newborn cry, more like the groan of an adult.

“Who do we have here, born so serious?” the doctors laughed.

Yes, we couldn’t have imagined then who had been born to us or how serious she truly was.

They brought Masha to me, even placing her on my chest. A tiny, wrinkled face, clouded eyes, dark hair on her little body. From the very first look, it was clear — the youngest girl took after me. I felt wonderful. None of the stress or uncertainty of my first delivery. As they wheeled me from the operating room to the intensive care unit, I enjoyed my sense of calm, knowing that soon they would bring Marusya to me.

Why did I start from the moment of her birth? Because that’s where I get the most questions: “How did the birth go?” “How was the pregnancy?” “Did you have the screenings and tests done?”

Such questions make me smile now. I understand what lies behind them. A quiet kind of judgment. People need a reason for what’s happened because the idea that there might not be one is unbearable. Surely, they think, the woman didn’t get all the right tests, wasn’t careful about her health, maybe even allowed herself some alcohol.

How else could it be? If it’s not like that, it would shatter any sense of universal justice. Allowing the thought that a tragedy could enter your life without cause is terrifying. People want a logical explanation, a reassurance — “This won’t happen to me because I won’t make those mistakes!”

For most, the belief in a causal link between a woman’s actions or inaction and the birth of a sick child is deeply ingrained. “It’s her fault.” This viewpoint is quite common in our society. Surely, they assume, she drank and smoked. Surely, the woman whose husband nearly beats her to death must have done something wrong. We find it comforting to think this way. What lies behind it? Indifference? Arrogance? Knowledge? No. Behind it all is a great fear. A fear of losing control. A horrifying realization — “If this could happen without fault, it could happen to me.” And that’s a thought no one wants to let into their minds.

My pregnancy and delivery were routine. I had all the screenings, took all the tests, gave birth on time and without complications. But my answer rarely satisfies such listeners. They quietly slip away, and I’m sure they still leave convinced — something here just doesn’t add up.

_________

THE ICU (Intensive Care Unit)

The ICU (Intensive Care Unit) was already familiar to me. Nothing had changed here since my first delivery. They transferred me to a bed and gave me some water. Next to me lay a young woman, apparently from the previous night. She looked fairly energetic, sitting up on her own and even moving around a bit. She was visibly upset about not being able to give birth naturally and having to undergo a C-section.

I remembered Sasha, my eldest daughter. No, I didn’t have those pangs of guilt. Childbirth is a lottery. You never know how it will go. You have to be as prepared as possible for anything. But sometimes, after reading online articles about the importance of natural childbirth, about how terrible it is when a child doesn’t go through the natural birth canal, and about the exaggerated consequences of a C-section on a child’s development, women start blaming themselves. For what? For drawing the short straw?

We follow all sorts of imposed standards: give birth naturally, breastfeed exclusively, marry once and forever. Does this plan work out? In most cases, no. And we feel disappointed, cultivating a sense of endless guilt in our hearts. For what? For not doing things “the right way.” But who said there is a “right way”? It doesn’t even matter who or when this idea originated. We carry these beliefs as unquestionable truths. And so, my neighbor was deeply upset, unaware of what could have happened to her child if she had continued trying to deliver naturally. She knew it was for the best, but she still took it as a personal failure. We get disheartened, not realizing how lucky we are.

I was starting to feel better. From experience, I already knew that it’s best to start moving as soon as possible to recover faster. But this time, it was harder than the first. Again, I felt pain around my heart, shoulders, and arms. This muscle pain was a side effect of the anesthesia, and it had set in unusually early this time. The nurse monitored my condition, occasionally performing some procedures around my lower abdomen and below, but I wasn’t bothered by it.

What did bother me was the visit from the neonatologist. A tall woman with sad eyes looked at me with a kind of disdain.

“Did you know you have blood type O and a negative Rh factor?” she asked, without lifting her eyes from my chart.

“Of course.”

“And who even allowed you to give birth?” she then lifted her head, looking at me with a sneering smirk.

I was speechless. Seriously? I’m lying in the ICU after giving birth to my second child. I have two wonderful daughters, and this stranger of questionable demeanor, whom I’m seeing for the first time, asks me such a question?! I’d heard horror stories about this type of doctor — hostile psychopaths with medical degrees — but this was my first time facing one. I now look back on all those cynical, bitter women with a smile, but at the time, I was thrown off.

We’re unprepared when people come at us “full force,” and we don’t know how to defend our boundaries. We always seem to be apologizing, especially in interactions with doctors. This time, too, I was apparently supposed to apologize for my negative Rh factor and my reckless decision to have children without the approval of this great woman.

“To hell with you!” I thought, and that’s exactly what I would say now. But back then, the polite, straight-A student in me wouldn’t allow it, so I said something else instead:

“And what’s the problem?”

My eldest daughter was born with a negative Rh factor, so there were no issues, aside from a touch of jaundice due to blood type.

The question of mother-child blood compatibility is actually quite serious. It worried me throughout both pregnancies and was something I constantly researched and monitored.

When the mother has a negative Rh factor and the father a positive one, there’s a risk of Rh incompatibility during pregnancy. In everyday life, Rh factor isn’t usually significant, but in pregnancy, it’s essential. Scientifically speaking, the body contains blood cells — erythrocytes. On their surface, some people have a specific protein called the Rh factor. People with this protein are Rh-positive, and those without it are Rh-negative. Over 85% of the world’s population is Rh-positive.

Now, if a woman is Rh-negative and the fetus is Rh-positive, Rh incompatibility can develop. The child’s blood triggers the mother’s body to create antibodies, which then attack the “foreign” elements — in this case, the fetus’s blood cells. This reaction can lead to hemolytic disease in the newborn, as the healthy erythrocytes of the child are destroyed, producing bilirubin as a byproduct. High levels of bilirubin indicate that the child’s liver is struggling to produce enough new erythrocytes. In some cases, this can lead to severe complications or even death.

If the child also has a negative Rh factor, no conflict occurs. Sasha was born with a negative Rh factor, as was Masha, as the stern neonatologist informed me. This was certainly a relief. But it wasn’t quite that simple. I couldn’t forget that I have blood type O, which often causes blood-type incompatibility (Masha was born with type B). Typically, blood-type incompatibility is much milder than Rh incompatibility, so this type of conflict is less dangerous. Babies who experience it often have jaundice, which usually resolves on its own over time.

All this information was known to me and my doctors, so we were prepared for the possibility of jaundice if Masha wasn’t born with type O like me. This kind of statement — that I should have been forbidden to give birth — was bewildering. Such a comment could only come from an unqualified person, or more likely, it was about something else entirely!

“Your child’s bilirubin levels have risen. Jaundice began within the first day,” the doctor told me, as if I were a slow student.

I was prepared for this. We’d been through it with my eldest daughter. This woman evoked nothing but disgust in me, and I had no desire to continue the conversation — nor did she. Muttering something to herself, the doctor left.

In the evening, they transferred me to a regular room. The other mothers had their babies brought to them. I was the exception. Masha’s bilirubin continued to rise, and she was under the “lamp” — a phototherapy light used to treat newborn jaundice. The lamp’s secret lies in the blue ultraviolet rays it shines on the baby’s skin. Ultraviolet breaks down the bilirubin, turning it into an isomer that’s naturally expelled from the body. This reduces the excess bilirubin in the blood to safe levels.

I was allowed to visit Masha in the NICU (Neonatal Intensive Care Unit). It was close to my room, so I could go there often. Masha lay in a special incubator, a little cap pulled down over her eyes. The smallest diaper looked like a huge sack on her tiny body, as did the little socks on her miniature feet.

The NICU nurses, like the head neonatologist, were extremely curt and even aggressive. How could people working with newborns, people welcoming new life, be like this? I couldn’t wrap my head around it.

As time passed and I searched for answers to the severity of her issues, I replayed those days in my mind hundreds of times, especially Masha’s stay in the NICU. I couldn’t shake the feeling that the doctors in that department were involved — maybe even responsible — for the complications that developed. Negligence, a fall, a wrong injection. Their constantly irritated manner when speaking with me only fueled these speculations.

I received all updates on my child not from them but from the surgeon. And the day it all began, she was the one who came to me. Calm as always, she reported:

“Your child has a heart murmur. There is suspicion of a defect.”

This was the first shock. She continued to explain things at length, though I can’t recall her exact words. All I understood was that the elevated bilirubin was no longer their primary concern; now it was the “uncertainty” surrounding her heart.

A heart murmur. I informed my husband, then searched the internet. It’s amazing and terrifying at the same time that we have the internet. You can find everything you need — and everything you don’t. In any unfamiliar situation, the first thing we do, the first thing we do when we hear unfamiliar words, is, of course, to type them into the search bar. The real task is to sift through the information. And this is where things get complicated. First, you read the most horrifying possible outcomes, sending yourself into a panic. Then, you read miraculous recovery stories, convincing yourself it’s not serious at all (misdiagnosis, it’ll pass on its own, this happens often), and so on in a vicious cycle.

And yet, I’m grateful for the internet: it’s given me far more than all the doctors I’ve ever encountered put together. It gave me more than information! It gave me people and their experiences! Their real experiences of special-needs parenting, with all the fears, mistakes, victories, and disappointments. Special chats, special groups — these are what keep you afloat, keeping you from drowning even when you feel like you’re on the brink.

What exactly is a “heart murmur”? The human heart has four chambers — two atria and two ventricles. Between them are valves that constantly open and close. The heart fills and empties in sequence as it contracts, with moments of silence between beats. Sometimes, however, abnormal sounds — murmurs — can be heard during these silences. These murmurs are often linked to anatomical abnormalities in the heart’s structure. Some can lead to disability, while others are completely harmless. The key is to determine the cause of the murmur.

My head was spinning. Heart murmur. What could be the cause? With one hand, I scrolled through my phone, while with the other, I pumped milk from my swollen breasts. I wasn’t allowed to breastfeed. Due to medical guidelines related to blood-type incompatibility, breastfeeding had to be temporarily suspended. In this situation, I needed to pump to maintain lactation. This was easy enough — I had plenty of milk. So much, in fact, that as I sat on the bed in the narrow cubicle, milk spurted from my nipples directly onto the wall. This sight was quite amusing and entertained my cubicle neighbor as well as the doctors who came into the room. For me, though, it was anything but funny. I watched with envy as my neighbors serenely nursed their babies. Why, once again, was the happiness of welcoming a new life starting with stress?

_________

The bilirubin levels weren’t decreasing despite the lamp treatment. The cause of the heart murmur remained unclear, so it was decided we’d be transferred to the neonatal department at the city hospital. I was disheartened. I had clung to the hope that, like with Sasha, the bilirubin levels would gradually go down, and we’d be discharged. But the additional heart issues extinguished that hope entirely.

All my neighbors were discharged, but there was no joyful discharge for me. Another hospital visit. This time, the department was far more modern than the maternity hospital. Fresh renovations, rooms for two mothers with their children, a dining area, a decent shower. Overall, everything looked quite civilized. They placed Masha under the lamp immediately; it was set up in the room, right next to my bed. A doctor arrived. She was very polite and professional, explaining how to use the lamp, position the baby in the incubator, and which tests would be done in the coming days. Compared to the doctors at the maternity hospital, this was a whole new level. It gave me a bit of confidence.

Masha lay in the incubator like a little sunflower. Her tiny yellow face looked even smaller now. She had lost more weight than was recommended and was down to just 2,600 grams. It felt like a disaster. Masha was born with a low weight—2,900 grams — even though I was sure, judging by my belly, that she’d be bigger than her older sister. Why was her weight so low? They assured me that it wasn’t a problem, and she was within the normal range. But now, 2,600! I started to panic. I studied her tiny body and couldn’t wait until I’d be allowed to breastfeed. I needed to get my baby fed!

A nurse came into the room.

“I’m taking the baby for tests and a heart ultrasound,” she informed me. My heart pounded. When would this end? I just wanted some certainty, at least about her heart. What was going on? What if it’s a defect that requires surgery? What if it’s something she can’t live with for long? I tried to shake off these thoughts, distracting myself with the routine of hospital life.

Between the two rooms were large glass windows, so I could see everything happening next door. There were a few babies in there, and doctors were constantly coming in to examine, feed, and care for them, but their mothers weren’t there. Strange. Whose children were they?

They brought Masha back, unwrapped her, and placed her under the lamp. She rarely cried, always calm, almost sluggish.

“Wait for the doctor. She’ll come and explain everything.”

Waiting again! The hardest part is waiting, trying to rein in your wild imagination. I heard the clinking of glass bottles. Every three hours, baby formula in warm bottles was brought to the rooms. Masha would take the bottle, but she ate with little appetite, never finishing the recommended amount. This upset me deeply. She was already so small.

The doctor arrived, asking how her feeding was going. She was very calm. I watched her closely, trying to understand if there was something she was hesitant to tell me gently.

“Bilirubin is still high; we’ll continue with the lamp treatment. If levels keep rising, a blood transfusion might be needed. But I hope it won’t come to that,” she informed me. By then, I’d come to terms with the bilirubin issue. My concern lay elsewhere.

“And what about her heart?”

“Oh, yes, her heart! It’s just some extra chordae. Nothing serious,” the doctor said, almost in passing.

And that’s it?! Just like that? Days of panic, sleepless nights, fear, the sorrowful looks from the maternity doctors, talks of a heart defect, and it’s just “nothing serious.” And it only took a few minutes of ultrasound to find that out?

Extra chordae. They form in the fetal heart around the fifth week of pregnancy. Only specific types (hemodynamically significant chordae) pose a risk by affecting blood flow speed and possibly causing tachycardia or arrhythmia in infants. In most cases, extra chordae are harmless, discovered by chance, and require no treatment. That was our case as well. This common micro-pathology appears in 22% of children — or at least among those examined. Do all mothers whose babies the maternity hospital doctors find murmurs in receive the same somber warning of a potential heart defect? Without even confirming it?

How strange this all is! Yes, I was still at the very start of my long journey. I hadn’t yet realized that most doctors keep all their knowledge to themselves, as if afraid to spill it, giving you only scraps of information. Want to know more? Want to delve deeper, look up statistics, find examples, prognosis, course, complications? Be prepared to research it yourself. But you don’t realize this at first. Initially, you trust.

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.

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 grandmother), and there had been no serious hereditary diseases.

The geneticist, a calm woman, asked me to undress Masha for the examination. She looked at Masha’s body very carefully and for quite a long time — especially compared to other specialists. She touched the fingers on Masha’s hands and feet, studying her face intently. Beside her stood a young woman, likely an intern, to whom the geneticist described each step of the examination and pointed out important details.

“Look here — that’s a third nipple.”

To say I was shocked to hear that would be an understatement. A third nipple? I was quickly reassured that it was a fairly common micro-anomaly found in many people, posed no danger, and would become almost unnoticeable over time.

“And has the big toe on her foot always had this unusual shape?”

A toe with an unusual shape? A toe is a toe. Yes, it did stand out a bit in its form, and she moved it in an unusual way. But so what?

“Small hands, small feet, the pinky finger on her hand is tiny,” the geneticist continued, before moving on to the usual questions about pregnancy, birth, and any family history of genetic conditions.

After the examination, the geneticist concluded, “At the time of this exam, the possibility of a genetic pathology seems unlikely.” I believe this moment marked the beginning of a series of strategic errors in diagnosing Masha’s condition, delaying a correct diagnosis for a long four years. And, of course, it fed my own internal denial about the genetic nature of her condition.

To confirm her conclusion, the doctor insisted on conducting a karyotype and TMS analysis.

The karyotype, put simply, is a person’s set of chromosomes. Normally, the genome has 46 chromosomes—44 of which are autosomal, determining hereditary traits (such as hair color and eye color). The final pair is the sex chromosomes, which define the karyotype: 46 XX for females and 46 XY for males. The karyotype can’t show individual genes or detect subtle abnormalities; it’s the simplest way to identify chromosomal disorders.

TMS, or tandem mass spectrometry, doesn’t examine hereditary material, but it does detect substances that deviate structurally from the norm, particularly amino acids. TMS helps diagnose metabolic disorders.

Of course, we’d do all this, but I have to admit, the upcoming MRI results worried me much more than these genetic tests. Genetics? What were they thinking? Highly unlikely.

In the hallway, mothers walked with their babies, sharing their problems with each other. People looked at us curiously, with some insisting on finding out why we were there and constantly trying to talk to me. I didn’t want to talk, much less share details. The doctors would treat us, and we’d go home — no need for candid discussions.

In the room next door was a boy whose mother was very talkative and openly showed me her son’s very thin legs and arms — really just bones covered in skin. She lamented that the doctors couldn’t figure out what was wrong but suspected genetics. How terrible! Genetics. How frightening it all was. And she spoke of it so calmly? Thank goodness it wasn’t us. Compared to these children, Masha looked like a perfectly healthy and lovely child. What were we doing here? I didn’t pay much attention to these conversations; I wasn’t interested in medical jargon, especially since it didn’t concern my child. When asked what was wrong with Masha, I answered vaguely. I didn’t want to go into detail, as I believed these were just temporary setbacks that would soon be resolved. There was no need for others to know.

Night was falling. The ward was gradually quieting down as everyone settled in to sleep. Masha peacefully fell asleep on my chest. I carefully “undocked” her, laid her in the little crib, and rolled it close to my bed. The moonlight illuminated nearly the entire room, allowing me to easily make out Masha’s face in the darkness. She lay there, snuffling softly. That narrow nasal passage again… Lost in anxious thoughts, I drifted off to sleep.

Very soon, I came to my senses. Not fully awake, I was in a kind of daze, aware of only two things: the moonlight streaming through the window and a deep, inexplicable fear gripping me. But fear of what? I propped myself up on my elbows and looked carefully at Masha. It was with the onset of her seizures that I began to understand the phrase “heart in your throat.” It turns out it’s not just a poetic expression but a real feeling — a sudden, overwhelming fear, as if your entire body is plunging downward, sinking into your feet. That’s exactly what happened to me at that moment. Masha’s face was twisted, her eyes bulging, and her little mouth was skewed to one side, moving in a terrifying way, as if trying to grasp for air. Her hands were tense, making strange, jerky motions in the air. This episode looked nothing like a simple fainting spell. It was terrifying.

I don’t know how long I stood there, paralyzed by fear, watching her — it felt like an eternity, but in reality, it was only seconds. The fear loosened its grip just enough to let maternal instinct take over.

I did the first thing that came to mind: I scooped her up in my arms and ran to find a doctor. No one was at the nurses’ station, but at the end of the hall, I could hear the sound of glass bottles clinking together. It had to be a nurse. I rushed toward the sound, clutching Masha tightly to me.

I burst into the room where the noise was coming from. I must have looked quite a sight because the nurse, without asking a single question, immediately dropped what she was doing and simply said, “To the on-call doctor!”

Now, the three of us were running through the quiet corridors, the nurse leading, me following with Masha in my arms. I kept glancing down at her face, trying to see if she was breathing. We descended to the first floor, and the nurse knocked insistently on the on-call room door. Silence. She knocked again, louder and more urgently. I looked at Masha; she had started breathing slightly, and only then did I notice her lips had taken on a bluish tint. The door finally opened, and a woman, looking very drowsy and clearly just woken up, peered out.

“What’s the matter?” the doctor asked in an annoyed tone.

“The child’s unwell,” the nurse replied.

The doctor slowly stepped out into the corridor and asked me to lay Masha on the changing table along the wall. She examined her briefly.

“The child’s fine. Why are you running around the halls at night?” she asked.

I began explaining that Masha had stopped breathing and turned blue, and I was terrified she was dying or that her heart might have stopped.

The doctor huffed irritably.

“That’s not how people die! You should stay in the room and wait for the doctor instead of running around with the child.”

“I’m sorry, but I don’t know how children die!” I snapped, grabbing Masha and heading back to our room.

I was fuming. Why? Why are our doctors like this? Why do they talk to parents in hospitals like they’re clueless students? Why can’t they just speak humanely? Is it all just routine to them? Are they too tired, too fed up? I didn’t yet realize that there were, unfortunately, many doctors like this, and I’d have to face them over and over. The cynicism, the indifference, the unwillingness to explain anything. They treat you like a pesky fly they’re eager to swat away.

In time, I began to understand doctors like this. For them, it’s routine, and explaining the same thing to every terrified mother is exhausting. Running around the hospital with a child at night might seem irrational, but what’s the right way to act? What are you supposed to do when you see your child stop breathing, turning blue before your eyes? How is a mother supposed to judge if it’s death or just a fainting spell? Who cares about rationality and hospital rules at that moment? The way doctors respond to your panic can often throw you off even more. You don’t know if you’re overreacting and if it’s just a common occurrence that they can quickly fix, or if it’s so awful that you might as well not bother running around at night.

A nurse came into the room. She was very attentive but looked sad. She’d likely taken more heat for our “nightly run” than I had. She connected Masha to a machine to check all her vitals, turned on the oxygen. Everything was normal. Masha had returned to her usual state, her face regaining its normal color.

During the morning rounds, the doctors decided to conduct an EEG video monitoring. Everything pointed too closely to epileptic seizures. EEG — electroencephalography — is a type of brain scan that measures electrical activity, identifying pathological areas, the nature and location of abnormalities, deviations from normal brain function, and tracking its condition over time. We were scheduled for 1 p.m., and we were to report to the hospital’s neurology department, located in another building.

I was nervous. Now, as a professional in the field of epilepsy, I know for sure that’s what it was. But back then, I still considered other possibilities. What if these fainting episodes were caused by something else? I needed answers as quickly as possible.

As lunchtime approached, the nurse explained where the neurology building was located. The hospital was more like a medical campus, with a large, sprawling layout. It was February. Cold and icy. Somehow, I’d need to get there with a child in my arms. Masha was tired and clearly about to fall asleep. I couldn’t let that happen. To get an accurate clinical picture of her brain function, Masha needed to fall asleep during the EEG and sleep for at least two hours. I started rushing.

My belongings were stored in what they called a “cloakroom.” In the basement of the building was a room with large iron shelves holding huge cloth bags where patients’ items were kept, each bag carefully labeled. This system was overseen by a stern woman in a white coat, and it operated on a strict schedule. “Strange system,” I thought at the time. Over the years, I learned that all our hospitals use this system.

I asked the nurse to keep an eye on Masha and, ideally, to prevent her from dozing off. I hurried down to the cloakroom. But, as it turned out, the cloakroom was closed for lunch. Another obstacle. What was I to do? It was nearly 1 p.m., and Masha was already starting to close her sleepy eyes. I went down again, hoping to find someone, anyone, in the dim basement. But no luck. The cold, dark basement was empty, all the doors locked. The cloakroom wouldn’t open for another hour. Well, I’d just have to go in my sneakers and the hospital coat the nurse lent me. After all, it wasn’t that far.

I bundled up Masha and set off. Stepping outside and taking a few steps, I realized this would be a long walk. It was terribly icy, and I had to take small, careful steps to keep my balance. The sneakers were dangerously slippery, and Masha felt especially heavy in her winter clothes. The sun glinted off the icy crust on the road. It wasn’t much farther — halfway there already. Just at that moment, my foot slipped forward sharply, and I was airborne, falling backward with my full weight. It only lasted a couple of seconds, but I managed to clutch Masha tightly to my body so that she’d land on top of me. I heard the startled cry of a woman nearby.

“A woman with a child just fell really hard, please help!” Her voice was filled with horror. In that moment, it crossed my mind that my “flight” must have been quite a spectacle. I was focused on examining Masha; she was crying, but more from fear than anything else. She was all right, thank God. It wasn’t until the woman came to help us that I realized how difficult it would be for me to get up — the pain in my back was excruciating. I don’t even know how I made it to the building, thanks to the kind woman who helped us up and walked us there, holding me tightly by the arm. The pain was unbearable. I started to worry that I’d injured myself. The guard, who had witnessed the whole scene, helped me up the stairs and animatedly described the fall to the doctor who was supposed to perform the EEG.

We got into the elevator — thank goodness there was one. There was no way I’d have managed the stairs. The doctor stepped in with us, looking at me with sad eyes.

“Why were you in such a hurry? I just got here, and we still have to set everything up,” he said.

My hands were trembling as I clutched Masha with all my strength. Why was I in such a hurry? I wanted to grab him by the throat right there in the elevator.

Why was I rushing?

Because I’m a responsible person. And if they tell me to be at a serious exam at 1 p.m. that will take three hours, I’ll be there at 1 p.m.

Because it was already past 2 p.m., and our examination should have already started, yet here we were, still in the elevator with a doctor who wasn’t rushing at all.

Because something inexplicable was happening with my child, and all the doctors moved like they were sleepwalking. They had no reason to rush; the workday was ticking along just fine!

Panic! Looking back now, I realize I was living in a state of panic at that time. That’s the first thing that happens to you! You’re in constant turmoil, making mistakes, always on edge, trying to “fix” everything as fast as possible. It feels like every day, every minute counts. You want to complete all the exams, see all the doctors, and get the prescriptions that will put an end to it all. It feels like everyone around you is moving at a turtle’s pace when every minute matters (and, in many cases, it truly does). You’re missing a cool head. A mother’s instinct drives you to walk in ice and cold in sneakers, charging into the fray. You make unnecessary, sometimes outright dangerous moves. You’re running on adrenaline. And it’s so important in these moments to have people around. People who are empathetic and level-headed. Not those who’ll just add to the tension and guilt or dismiss the whole situation. But those who’ll understand, explain, offer comfort when needed, and even slow you down at times. Ideally, this person should be a doctor. But not everyone is lucky enough to find such a doctor along the way.

They looked at me with pity and a kind of bewilderment. I understand that reaction now. Many people see special-needs mothers as irrational and unhinged. And, in some ways, we are. Why not just wait for the cloakroom to open and go later? Why not call the doctor and reschedule the exam? Why couldn’t the nurse suggest a more reasonable option besides, “It’s no big deal, just go in your sneakers — it’s not far!” Today, I’d definitely see plenty of other ways to handle the situation, but back then… Back then, I needed to save her.

We arrived, and I remember it clearly, on the fourth floor. The EEG room, of course, was all the way at the end of a long corridor. I was desperate to get there and free up my hands, which were growing numb. They led us into a small room with two large beds and a chair. I laid Masha down on one of the beds and carefully sat beside her. Each movement sent a sharp pain through my lower back and tailbone. More than anything, I wanted to lie down, but there was a long process ahead of us and the journey back. I pushed those thoughts aside.

They began prepping Masha, fitting her with a cap full of electrodes. She was fussy and whimpering. They filled each electrode with a special gel to facilitate the transmission of electrical impulses. Now came the hardest part: getting her to sleep. It was essential to conduct the study while she slept, to observe what was happening in her brain during the transition between sleep and wakefulness. I took Masha in my arms and settled into the chair, trying to find a comfortable position to stay in for at least two hours. But my back was relentlessly throbbing. It didn’t matter; I’d have to endure it. I nursed Masha and rocked her gently. Thankfully, she fell asleep within ten minutes. That was good. We could complete the test without repeating this entire ordeal.

“No epileptic activity detected,” was the result.

“What does that mean?”

“It doesn’t rule out epilepsy, but there’s no activity at this time,” the doctor explained. Clear as mud. I don’t remember how we got back, but given that I’m writing about it now, it must have been without any major incidents. Most likely, my mind was occupied with processing the information. The absence of activity gave me some optimism. But what, then, was happening? With each step, more questions arose, and no one was providing answers. My head was spinning.

_________

During the morning rounds, a neurologist came by. She made a good impression — positive and confident. After examining Masha and reviewing the EEG results, she concluded: these were definitely epileptic seizures. The EEG might simply not have captured activity during the brief monitoring, but that didn’t mean it wasn’t there. Longer monitoring sessions were necessary; two hours was far too short.

With a smile, she handed me a booklet titled How to Live with Epilepsy and an A4 sheet listing the treatment instructions: “Convulex,” to be taken at strict intervals, starting with three drops and gradually increasing the dose.

I sat down on the bed and stared at these pieces of paper, feeling completely lost. How to live with epilepsy? I flipped briefly through the booklet. Just like that, without any real investigation or understanding of the cause, they handed me this book as if it were a sentence. Was this all? Or was I making a mountain out of a molehill? Maybe we’d start this “Convulex,” and it would all just stop?

I regret not keeping that booklet. A few months later, I threw it away. There was no truly useful or important information about epilepsy in newborns. The more I delved into the medical details, the more puzzled I became. Why don’t doctors provide genuinely helpful information?

“You don’t die from epilepsy,” the EEG doctor had once told me after another monitoring session.

At the time, that phrase reassured me, but now… Now, I’m astonished, looking back. Seriously? That’s it? That’s all you have to say to the mother of a newborn with a severe form of epilepsy? It’s absurd! Where’s the information on types of epilepsy, the statistics on the effectiveness of antiepileptic drugs, the risks and potential consequences? Where’s the plan of action? If this information were available, perhaps parents wouldn’t be left in shock, frantically consulting doctors, raising exorbitant sums for treatment abroad, and dealing with countless “not’s.” Isn’t it a doctor’s duty to provide information?

But these frustrations came later, once I started to research everything myself. At that time, I was satisfied. We’d try the Convulex, and it would all go away.

In the room across the hall, a child was crying. Constantly. Odd. I peeked in. It was a large room, meant for four mothers and their babies. There was no one there, just a tiny crib with a baby who was crying non-stop. This went on all day until a nurse finally took the child away. Where? I found out the baby’s mother had left and never returned. The baby was taken to the ward for abandoned children. It was shocking. I was beginning to immerse myself in a world very different from my own.

_________

The next morning, Masha woke up lethargic. She ate a little but without much appetite, then spit up a lot. This made me uneasy. I picked her up and went out into the corridor to check if the doctors’ rounds would be soon or if I should call a doctor earlier. At that moment, Masha vomited on me — this was something new. The doctors arrived, examined her, and seemed concerned. Vomiting? Most likely rotavirus, and with so many small children around, they decided to transfer us to another hospital, to the infectious diseases ward.

I began to panic. Another hospital, yet no real answers. What was happening to my child? The main questions remained unresolved. I hurriedly packed up. Every movement was painful — my back was still causing me problems, but the thought of checking my own health didn’t even cross my mind. And once again, we embarked on yet another journey into the unknown.

The admissions room. A small space with two desks, an examination table, and a changing table — a standard setup. And, of course, the attending doctor and a nurse. I carried Masha in, still dressed in her winter clothes, and laid her on the table. The paramedic helped bring in all my bags.

“Why didn’t you change shoes in the hallway? Change your shoes, undress, and undress the child as well so we can examine her,” the doctor said, studying our papers.

Right. How was I supposed to manage all this? I started with myself, then undressed Masha. Where to put all these clothes? I piled them onto a chair. Meanwhile, they were firing off a barrage of questions and asking me to sign various forms. I had to do everything on the go — holding Masha with one hand to keep her from falling off the table, while holding a pen with the other.

It would’ve been comical if it hadn’t been so sad. This whole admissions procedure can sometimes take hours. Why put the child and mother through this? I always wonder — why can’t they first settle patients in a room and then handle all these procedures? What’s stopping them?

The doctor prescribed the standard set: Smecta, Rehydron, Motilium. And, of course, we needed to collect urine and stool samples. Masha would latch onto the breast, but within seconds, everything came back up. Attempts to give her water through a syringe ended the same way.

The next two days passed in much the same way. The nurses kept bringing huge glass bottles of water and demanding urine and stool samples for testing. Just like clockwork. I was baffled and asked to speak with the head of the department. I had a list of questions: how was I supposed to collect a stool sample when my child hadn’t eaten or drunk much in three days? How could I keep pouring water into her when everything came back up? How was I supposed to give her Motilium — an anti-nausea and anti-vomiting medication — if it had the same effect as the water? It was a vicious cycle.

A kind, young nurse listened to my complaints attentively and sympathetically, shrugged, and simply noted that drinking was essential to prevent dehydration. But she didn’t explain how I was supposed to manage that. This was like a children’s game.

Meanwhile, Masha was growing visibly weaker. She barely moved, letting out small, weak sounds. Night fell outside. The hallways grew quiet as all the doctors left. Masha lay there in just a diaper — it wasn’t hot, but her cheeks were starting to flush. A nurse brought a thermometer. Horror gripped me when, just a few minutes later, I saw the reading: 40°C (104°F). In a panic, I demanded the on-call doctor. Luckily, it was a man. With just one look, he immediately grew concerned. Dehydration was setting in. He and the nurse quickly inserted a catheter and began an IV drip for Masha.

From 7 p.m. until 1 a.m. — six hours — I lay in a contorted position, holding Masha’s hand, although she was so weak she barely resisted. My back was killing me, but I didn’t dare take any painkillers since I was breastfeeding. The doctor returned frequently to check on her. After three hours, Masha’s condition improved. Her breathing steadied, her fever dropped significantly, and she finally fell asleep. But I couldn’t sleep. I was bewildered. Why hadn’t they done this sooner? How could anyone leave, knowing there was a child in the ward who hadn’t had fluids in three days, was vomiting uncontrollably, and had an unclear neurological status overall? Why couldn’t they give such babies an anti-nausea injection and start an IV right away? Why let it get to a dangerous point?

Lost in anxious thoughts, I eventually drifted off to sleep.

The same on-call doctor woke me up at five in the morning. He had come to check once more that Masha was stable. There truly are doctors — many, in fact — to whom I’m grateful. I still remember this man, even what he looked like. It’s frightening to think what might have happened if we’d had just another “sleepy fly” in his place.

Throughout my many stays in hospitals, I learned a crucial lesson: you have to fight for your child here too. You need to press the doctors with questions, remind them constantly of your presence, and insist on the best conditions.

In this endless, nerve-wracking hustle, I hadn’t noticed that we’d been given a roommate. A young woman with a little girl about Masha’s age, and her name was also Masha. The girl was very sweet, tried to chat and show interest, but I was so worn out that at times she just irritated me. I also began to notice, more distinctly, the differences in the girls’ development. Our roommate Masha was a typical child — lively, curious, and actively crawling around the bed. In medical terms, she was “neurotypical.” My Masha, on the other hand, was completely different: lethargic, unresponsive, detached. The one constant was her eyes — deep and expressive.

“She has such intelligent eyes!” I often heard this from people around us and still do today.

I increasingly caught the worried glances of our roommate. My Masha clearly puzzled and even frightened her. In that moment, I understood she was feeling the same way I had when looking at the screaming boy. You see that something is wrong with the child, but what exactly? Asking the mother doesn’t feel tactful, and the mother herself might not even know.

“She doesn’t play with toys at all?” she finally worked up the courage to ask.

I didn’t know what to say. Masha’s condition at that moment was severe and unclear. What was happening with her? Was she developmentally delayed, or was she simply feeling awful from the rotavirus? No one had answers! Her stares hurt me deeply, and seeing the stark difference in the condition of children the same age was unbearably difficult. I was beginning to understand that our situation was much more serious than I had assumed.

The next day, we were moved to a vacant, private room. Another round of moving our things, but I was actually relieved: no one would wake us unnecessarily, make noise, or engage in small talk. And to be honest, I had started comparing the children constantly, which was painful. It was better to be in a private room where no one could see us.

I was gathering our things. My back ached terribly, but I didn’t want to mention it, not even to my husband. Compared to what was happening with Masha, it was just a minor issue. I felt like I had no right to complain or focus on myself in this situation.

Masha continued to receive IV fluids. Every day, she got the nourishment she needed and began to come back to life. Doctors started coming in more often, observing her condition with a kind of sympathetic interest.

“What’s wrong with the little girl?” the on-call doctor asked one day.

“I don’t know; I have the same question,” I replied.

She simply shrugged. And I started realizing that whatever was happening with Masha was beyond standard medical practice. The doctors’ bewildered looks frightened me. They just didn’t know what was wrong with her. From the beginning, they had been following a standard treatment protocol — the one that worked for everyone else. But it wasn’t working for us.

The only thing that gave me hope was the absence of seizures. What if it was all connected to the infection? What if it would all go away now? Now, I know it wasn’t an infection, but back then, no one had any doubts about it.

_________

There were no epileptic seizures for 14 days. We returned home, and hope rekindled in me once more. Hope is a powerful thing. You cling to it like a lifeline, fantasizing, playing out scenarios in your mind. Hope gives you strength, helps you mobilize your inner resources, and allows you to overcome crises. It gives you a sense of control over your life and, of course, faith in a better future. Often, hope played cruel tricks on me, but I couldn’t live without it — not at all.

I reset myself, stopped thinking and analyzing all the hardships we’d faced in the hospital. I began to believe again. My spirits lifted, and I regained the energy to take care of daily life — even my back pain seemed to lessen. I came alive again.

But the happiness didn’t last. We were sleeping, as usual, together on the big couch, when I woke up to those strange sounds again. Masha was having another seizure. I knew by now that trying to do anything was pointless, even dangerous. I simply laid her gently on her side so she wouldn’t choke on saliva or vomit. All I could do was watch and count the seconds to gauge the duration of the seizure. After forty seconds, it stopped. Masha started breathing again, slowly and heavily. I got up and headed to the refrigerator, feeling utterly defeated. I had no control. We’d have to start the medication. The hope that this would all just go away shattered. But a new hope quickly arose — that the medication would fix everything.

I pulled out some food from the refrigerator and poured myself hot tea. Midnight snacks had become the norm. I understand now that constant stress, high cortisol, and eating whatever I could find in the dark hours were all connected. I was eating my stress. But back then, I thought I was just gaining weight from sleepless nights. The thought of “letting myself go” and turning into an old house slipper pushed me into even greater despair. But I didn’t have the luxury of thinking about myself then. I had to cure Masha.

I took out the doctor’s prescription: “Take the medication strictly on schedule at 10:00 a.m., 6:00 p.m., and 2:00 a.m.” How was I supposed to give her the medicine at night? What if Masha was sleeping at that time?

At 10 a.m., I gave Masha her first antiepileptic medication (AEM). Of course, it was “Convulex.” To this day, I wonder why this older-generation medication is the first choice for our doctors. Still? But all these thoughts came later. For now, I carefully measured the exact number of “Convulex” drops in a special syringe and tried to administer it into Masha’s mouth. My hands were shaking as I double-checked the dosage twenty times to avoid any mistake. Other than Masha grimacing at the taste of the medicine, I didn’t notice any immediate problems.

I set an alarm for 2 a.m. that night. Waking up, I administered the dose into her sleepy mouth, and just seconds later, Masha had a seizure. We lived in this pattern for several days and nights. Only on the third night did it occur to me to taste this “Convulex” myself. It was horrible — bitter-sweet, with a cloying, astringent effect. I could hardly imagine what Masha must have felt as this liquid filled her mouth, followed by a seizure that left her unable to breathe. Something was wrong. It wasn’t supposed to be this way. I turned to online support groups.

I still feel guilty about those nights. I’m only grateful I eventually had the sense to double-check the doctor’s orders. I was horrified. I had been doing something that should never be done: waking an epileptic child. Her brain was switching abruptly from sleep to wakefulness, and my actions were directly triggering her seizures. But who would have told me this back then? How could an epileptologist prescribe a medication to be given at 2 a.m. to a young child? I still can’t understand it. Why didn’t they explain that to maintain a stable concentration of the medication in her blood, it should be administered at regular intervals based simply on the child’s daily schedule? Why not tell me how best to give the medication, what to mix it with, and so on? It’s easier, I guess, just to hand over a piece of paper, give a stern warning, and sigh deeply before moving on. Perhaps they assumed the mother would figure it all out. But at first, a mother doesn’t understand anything! She’s panicking, and she trusts completely. I couldn’t process it all.

After that, I began to dive deeper into online resources, searching for special groups and reading the stories of others with similar experiences. I was shocked to realize that you often have to double-check your doctor’s orders — they may not just fail to help, but they could actually harm.

People still ask me, “What do the doctors say?”

People genuinely believe that the doctor knows what’s best and will always tell you what you need to know. We trust them. It doesn’t occur to us that it could be otherwise.

I adjusted the “Convulex” schedule to fit our routine. It made things easier, but it didn’t stop the seizures. Some days, there were none — Masha would start smiling more, using her hands more, reaching for toys again — and hope would sneak back into my mind. But then a day would come when that hope turned into disappointment, and the cycle would repeat. I regularly called the neurologist, the same one who frequently did our EEGs, with the same question: why isn’t the medication helping? And I always got the same answer: increase the dose.

So, I increased the dose until I ran a blood test for valproic acid concentration and saw the level was 160. By then, I’d read enough to know that this concentration was simply dangerous. The maximum recommended level — though still undesirable — is 100. Ours was 160, but my doctor wasn’t at all concerned, continuing to push for an increased dose and for an MRI.

Magnetic Resonance Imaging (MRI) of the brain is a diagnostic method that gives a highly accurate view of the brain’s overall state, pathological changes, injuries, and post-traumatic alterations. An MRI was necessary because epilepsy could cause changes in the brain. But how could this be done on such a young child? In our city at that time (and possibly still), there was no option for MRI with anesthesia. Even the word “anesthesia” sent shivers down my spine. I didn’t want to subject Masha to that. The MRI center suggested we come in at 7 a.m. and try to do the scan while she was sleeping so that she wouldn’t move. I couldn’t imagine how that would work, given that the procedure is, to say the least, noisy. But we had no other options.

The night before the MRI was terrible, as always. Masha kept waking up, and by 5 a.m., I gave up trying to put her back to sleep — we got up. I was exhausted and scared. What would they find in that little head? Needless to say, I’d read a ton online, and my vivid imagination kept me awake even when I had a chance to sleep.

As we drove through the dark, wintery streets, the motion of the car lulled Masha, and she began to fall asleep. I entered the MRI center with a nearly asleep child in my arms. The staff decided to place both of us in the MRI machine. Anyone who’s done an MRI can probably imagine — or perhaps can’t imagine — how we managed. I can still vividly recall that experience. Masha lay there in headphones, and I lay on top of her, propped up on my elbows to avoid crushing her, holding her head steady and pressing the headphones tightly to her ears. They fitted me with headphones too, and in this setup, they slid us into the machine. We barely fit. If I had been any bigger or taller, it wouldn’t have worked. But we managed, and then came thirty minutes of clanging and banging. I kept my eyes on Masha’s little face the whole time, marveling at how she didn’t wake up. Even with the headphones, it was all very loud and unsettling. My body began to go numb, my elbows were killing me, but there was truly nowhere to go.

After thirty minutes, the noise stopped, and they slid us out. The doctors took a greater interest in our case and asked in more detail about the issues. They observed no significant abnormalities.

The report read: “MRI findings show mild myelination delay in the frontal and parietal lobes for this age. Minimal cerebrospinal fluid dynamics disturbance of the external type. No convincing MRI evidence of atrophic changes, signs of parenchymal softening in the brain hemispheres, brainstem, or cerebellum was found at the time of the study.”

Even without understanding most of the ominous terms in the report, I was deeply reassured by the words “no evidence.” No atrophy, no organic damage. Myelination delay — what was that? Later, doctors explained it was nothing serious. For this age, it was within the normal range. However, they all insisted on another MRI after her first birthday if problems continued.

And the problems did continue. We were taking Convulex, which, as I had come to understand very well, was doing nothing to help. The dangerously high concentration level frightened me terribly.

“We’ve been taking Convulex for three months, and the seizures haven’t stopped or even decreased. It’s pointless, and the concentration is alarmingly high. Why are we taking it? Don’t we need a different medication by now?” I started asking questions.

“Finding the right medication is a long process. Some respond immediately, while others take years to find the right one. First, you need to reach the target dose — you still have room to increase!” the doctor would say, or something along those lines.

But that answer no longer satisfied me. I understood that my child’s liver could fail at any moment. And for what? For a medication that wasn’t working at all? Where was the logic in that?

I scheduled an appointment with a new neurologist. I was determined to introduce a new medication. And we were prescribed “Keppra.” That very day, I gave Masha this new bitter liquid, watching with hope. Imagine our surprise and joy when the seizures stopped on the third day and didn’t return for two months. We were overjoyed. Every day, I watched Masha, hoping for new milestones. I looked forward to her progress, sincerely believing we had found the right medication. I had yet to realize the cunning and relentless nature of the enemy we were dealing with.

_________

Around this same time, we decided that Masha should be baptized. I was entering a very active and prolonged stage of acceptance, which I call the “search for a magic pill.” At this stage, faith in miracles becomes crucial. We seek something to explain what’s happening and offer hope. And belief in God fits perfectly. It’s often said that people come to faith through trials. Naturally, we want to share the burden of responsibility, to hear that the disaster in our lives is due to none other than God, who prepared it all for us. It’s comforting to know that you’re not alone, that there’s someone unseen who’s involved in everything. This both calms and grants a sense of uniqueness to your existence. Many of us, usually far from true faith (let’s be honest), suddenly become devout, begin going to church, praying, becoming pious — why? All in the hope that God will see, take pity, and forgive our sins. And life will return to how it was, and we’ll likely forget about Him again — but only for a while, until the next major problem arises.

The beauty of religious faith is that it explains everything. God becomes the root cause of all that happens in our lives. The urge to change anything fades. All that’s left is to believe in miracles and wait. “God works in mysterious ways” is a perfect way to react to life’s misfortunes — a phrase that erases any sense of randomness. And that’s exactly what we need.

It was for this reason that I approached Masha’s baptism with deeper thought. I began to see a divine purpose in what was happening, and the baptism felt like a dedication: here we are, coming before You for judgment.

Naturally, I had read countless miraculous stories of healing. People genuinely believed (or very much wanted to believe) in a connection between an improvement in health and going to church or washing with holy water. Yes, we all long to believe in miracles!

The baptism was performed by the same priest who had baptized Sasha and my husband. It was held in a small but cozy church on the city outskirts that inspired trust. The priest himself was very approachable, explaining everything in language that we “occasional believers” could understand. We are nominally Orthodox Christians, all baptized, wearing crosses around our necks, dyeing eggs for Easter, yet in reality, we neither know nor observe much. We select from religious practices only what we like — what fits into our daily lives without too much effort or disruption. Yet we call ourselves devout believers. It’s laughable. This priest, knowing we were “lightly Orthodox,” explained that a cross should be worn at all times, especially in church, and that we should attend church regularly, not just when life “squeezes” us. He explained that the baptismal sacrament is not just a procedure; it’s a holy rite. The only “procedures” are those done in hospitals.

Given Masha’s condition, we decided to conduct the baptism with a very small circle. I didn’t want to make it a celebration or even invite close family. Honestly, I wasn’t ready for everyone to see my girl as she was. I wanted to “fix” everything first.

I chose my mother-in-law as Masha’s godmother. At that time, my husband’s parents were deeply involved in helping us, as they still are. After receiving the priest’s approval (since I had read conflicting information about a grandmother as godmother), we arrived for the baptism. Masha was calm. Looking back at photos from the baptism now, I see that she was alert, with bright, lively eyes. She took everything in, occasionally looking over at me as she sat on her grandmother’s lap.

I was tense, constantly watching Masha and worrying about how she would react to the countless reflections from icons and candles surrounding her. I feared a seizure, and even being in a church didn’t bring me any real comfort. I just wanted it to be over quickly.

I returned home with a sense of duty fulfilled. Perhaps now God would take pity on us, and everything would get better. I started waiting for a miracle, believing that after everything we’d been through, and after how much I’d grown stronger and wiser, surely something good would happen. How wrong I was. The baptism truly became a blessing for me, but not in the way I’d hoped. It wasn’t a blessing for healing, but rather for the long and arduous journey ahead — one that I couldn’t even yet imagine.

_________

There’s nothing quite like the feeling of seeing your child improving and letting yourself hope for the best again. More accurately, it’s not just hope — it’s an active vision of the future. You start reading about different rehabilitation methods, planning where, when, and how best to proceed. You’re filled with fresh positive energy and can see the future clearly. We were still so young; there was still time to recover. We even started planning a trip to the sea and, for a moment, began living an ordinary life.

Ahead of us was another EEG video monitoring session. Over the years, we’d done it countless times, but the nerves never went away. What would it reveal? That unpredictable brain again. But this time, I went into the examination with optimism. There hadn’t been any seizures for almost two months. The results had to be better.

This time, we did the EEG at a private clinic, where our primary doctor worked. Everything went smoothly. Masha fell asleep quickly, to my relief, and we managed to get a full two hours of data without much struggle. Our doctor would interpret the results, which would take a few days. But I was so eager to know that I started pestering the technician for some insight, hoping to hear that there was no abnormal activity. To my happiness, she replied:

“The doctor will prepare the report, but don’t worry — I didn’t see anything troubling.”

I practically floated out of the medical center. I remember the weather so clearly: it was a beautiful day, warm and sunny. My heart felt warm too. At last, things would get better. We’d found a medication that worked for us.

A few days later, I called the doctor to get the results. His voice sounded troubled.

“Have you noticed anything unusual?” he asked.

“What should I have noticed?” I didn’t understand what he was getting at.

“The EEG is very poor. I’ll send the report to your email. With an EEG like this, the child will not be able to develop.”

I vaguely remember what else he said — something about needing to leave urgently for treatment in St. Petersburg or Moscow, or even further. We’d probably have to undergo special therapy not available in our local hospitals. He suggested I might not even recognize the seizures when they happen or may not realize what they are.

After the words “the child will not develop,” I just shut down. Nausea rose in my throat, and chills set in. My body had a clear reaction. I was in shock. How could this be? The seizures had stopped, the ultrasound was normal, the MRI was normal, all the tests were normal — and yet things were so bad that the child wouldn’t develop. How could that be?

I opened the report. It had only one phrase: “Severe brain dysfunction.” We had never received such a short, ominous EEG report in our lives. Now I understand that it was rather inadequate and uninformative. It wasn’t a medical conclusion; it was a sentence.

Gradually, shock turned into panic. I began frantically messaging in special support groups, researching medical centers and doctors. Like many, I quickly found myself looking at the Institute of Epileptology and Neurology of St. Luke in Moscow. I hastily scanned their website, feeling as though every minute counted. We needed to start proper treatment as soon as possible. Doubts began creeping in about the adequacy of the prescribed therapy and even the competence of local doctors. What if we had gone straight to Moscow and hadn’t wasted time?

I dialed the Moscow institute’s number. Its head, Professor Mukhin K., was the one everyone wanted to see, a luminary in epileptology.

June was approaching, and the administrator told me that the earliest available appointment would be in September. My temples started throbbing. September — so far away, with a whole summer ahead of us. Then came the real shock: she clarified that the September slot was not for the current year but for the next one. A full year’s wait? Seriously? A year-long wait to see an epileptologist when these issues sometimes require immediate intervention?

Of course, with time, I came to understand that people sought out Mukhin more for his expertise in the most complex cases, usually after years of battling this unpredictable disease and in need of a truly authoritative opinion. But back then, it felt absurd. I booked the September slot for the following year but couldn’t even imagine what might happen to us by then.

The administrators suggested I see other specialists at the institute. But even then, the situation wasn’t much better: half the doctors were on vacation, and the others had a waitlist of several months. My heart was pounding. How could this be? I just couldn’t imagine waiting months for an appointment while Masha failed to develop.

In a panic, I remembered that one of our relatives on my husband’s side had a child with epilepsy who had undergone treatment in Israel. I recalled my father-in-law, who, when mentioning this, had sighed heavily and said, “God forbid anyone goes through that.” Back then, all of it had sounded frightening and distant. I never could have imagined that I’d one day need to consult her about this. My relative was incredibly supportive. She connected me with contacts in the international department of a major clinic in Tel Aviv. It turned out that getting a consultation with an Israeli professor would be much quicker than with doctors in Moscow at that time.

I sent all the required documents and medical records. They scheduled us for an EEG at a Tel Aviv medical center on July 10, followed by a consultation with the professor a few days later. We bought tickets and began waiting once again — waiting for a miracle.

_________

All our plans for the sea were dashed. After much thought, my husband and I decided that at least our older daughter should have her time at the sea. June arrived, and my husband, Sasha, and my mother-in-law flew to Turkey. Meanwhile, Masha and I stayed home, waiting for the important trip that I believed would solve everything.

I sank into solitude — two weeks of silence and pain. Masha’s condition began to worsen. She was becoming more lethargic, her gaze less focused. She was not here with me; she was somewhere else, in another world. During this time, I began noticing how her eyes would occasionally turn glassy, tear up, and seem to bulge out of their sockets.

I was slipping into a world of madness. Each day blurred into the next, the only difference being that these strange episodes were happening more frequently and becoming more pronounced. “Bulgy-eyed” — that’s still the word we use to describe the West syndrome-like seizures. Back then, I knew nothing of scientific names. To me, they were just more episodes, though not as terrifying as the ones with loss of consciousness.

I spent less time online, searching for information. What I read frightened me. I was actively denying the obvious, refusing to believe that my vision of a “normal” child was slipping away. I became apathetic and despondent. I spent all my days in my beloved backyard. I sat on a big, soft swing, shaping a new dream. I needed a new direction: our trip to Israel, where we would find help. I fantasized about the professor prescribing a medication that would immediately work and bring our life back in line with our plans.

My cursed intuition, which had gone silent when the severe episodes began, was now stirring again. Now it no longer needed to frighten me with visions. It had confidently and permanently settled into my heart. It was no longer something I could ignore by just closing the curtains or blaming it on insomnia. Intuition lived alongside hope, like feuding neighbors, each trying to outshout the other to prove they were right.

In addition to emotional anguish and searching for solutions, the issues stemming from a lack of proper sleep became more apparent. Masha continued to sleep poorly, and the effects of sleep deprivation were taking a toll on me. I felt constant fatigue and muscle weakness. Concentrating on anything became difficult. My mind was a mess, and even routine household tasks became almost impossible at times.

Each morning, I woke up utterly exhausted, waiting for Masha’s seizures to pass (they had started happening every time she woke up). Then came the feeding period, which could drag on for a couple of hours. I had started bottle-feeding Masha, but her eating was poor, sometimes non-existent. The seizures were taking their toll. I began to wean her off breastfeeding. Perhaps some breastfeeding advocates would judge me, but I could no longer sit for hours with her at the breast. She wasn’t feeding; she was simply holding on for comfort. I had dutifully fulfilled this part of my role for eight months, but I couldn’t continue.

I walked around the house in stretched-out, milk-stained tops, my breasts constantly full and ready to comfort her at any moment. My life had become an endless cycle of breastfeeding. But I knew we had trips and flights ahead, with who knows what else to come. Something had to change. My resources weren’t limitless. So, I started introducing formula. Gradually, her favorite toy became the bottle. This change made things easier, though waves of guilt and feelings of weakness hit me from time to time.

After breakfast, I spent the entire day pushing Masha around the yard in her stroller, absorbed in my heavy thoughts, coming back inside only for feedings.

The hardest part was that, alongside my despair, fear, and so many other feelings, a new emotion was taking root: anger. I was beginning to feel angry with Masha and, at times, would snap at her in the middle of the night, asking, “When will you finally sleep?” Her answer was her vacant, inflamed eyes darting aimlessly, as if searching for something. I felt horribly ashamed of my feelings — what kind of mother am I? How can I yell and feel anger toward my own child? I would pick Masha up, hold her close, and pace through the house at night. When I could go no further, I’d lay her back in the stroller, and we’d walk in circles from one window to another. To feel less afraid, I’d turn on my nighttime friend: the TV. No, I wasn’t interested in what was on; most of the time, it was on mute. It just made things less frightening. I wasn’t alone in this dark night; there were other people out there, just on the other side of the screen, filling my emptiness.

I found myself thinking about my mother more and more. Constantly. It felt as though, three years after her passing, I was only now truly realizing whom I had lost. What would it be like if she were still alive? Everything would be different — completely different. I replayed our last meeting in my mind hundreds of times. She was saying goodbye to me. Her large blue eyes were full of tears. She wasn’t just dying. It began to seem that she knew what lay ahead for me. She knew for sure. She sensed it.

Time heals. People invented that expression to make sense of something beyond control. Time merely fills a void with distractions — meaningless worries, routines, work, and empty illusions. The more colorful distractions you manage to cram into that black hole, the more philosophically you can look back years later and say, “Yes, time heals after all.”

Time does not heal. Time allows events and faces to blur, letting years, and even decades, dissolve into fog, making the most significant memories harder to recall. Everything drifts away, leaving only islands of memory that were the most important. Her scent — slightly sweet, though I can no longer recall the name of her perfume. But if a similar fragrance wafts by on the street, I’d recognize it instantly. The touch of her hands, her light embraces, the little gestures that once felt so ordinary, now stand out in my memories. I desperately missed her hands, her smile, her scent — those beloved perfumes she adored.

And I reflected, I played with thoughts. What would it have been like if… I shifted all my pain from Masha to the one who was gone and would never be back. I immersed myself in memories, in the feeling of loss and an indelible guilt. We hadn’t loved her enough, hadn’t hugged her enough, hadn’t said enough… How she fought. Long and hard. Until the very end. She remained forever my example of strength and resilience. So how could I possibly let her down now?

_________

I began preparing for the trip. It would be our first flight ever. I was terribly anxious, as flying isn’t recommended for children with epilepsy. There was no way to predict how Masha would handle the flight, if a seizure would occur, or how severe it might be. There were endless questions, each more frightening than the last, yet no one could give me a clear answer. All we could do was hope once again.

Around this same time, we received the results of the TMS (tandem mass spectrometry) analysis: “No data indicating hereditary amino acidopathies, organic acidurias, or mitochondrial beta-oxidation defects.” Yet another test that found no abnormalities. Naturally, no genetics issue here.

I made lengthy lists of everything we might need. There was a separate list for the airplane, another list of medications for the plane, a different list for the luggage, and a final list of medications for the luggage. I played through every possible scenario in my mind a hundred times, trying to prepare for each one as best as I could. I felt reassured knowing that my mother-in-law would be flying with me. She’s an experienced traveler and fluent in English. With her, I knew we wouldn’t be lost in any country.

Fortunately, Masha handled all the flights calmly, falling asleep each time during takeoff. There were many seizures, but none with loss of consciousness. At least there was that.

Upon arrival, we were met by a special person we had arranged for in advance. He quickly guided us through all customs services and took us to our accommodation. It wasn’t strictly necessary, but after reading about Israel’s extensive and formidable airport security, we thought this might be the better option. We had no idea how Masha would handle the flight or what state we’d all arrive in.

Our residence was in the city of Haifa. A friend of my mother-in-law’s, who lived there, kindly allowed us to stay in her apartment while she was away. This wonderful woman, Anastasia, was a huge help, though at the time, we didn’t yet realize just how much.

Haifa. By our standards, it felt more like a district than a city. We arrived faster than I had expected. Narrow streets, cleanliness, smooth roads — those were the first things that struck me. Small, older apartment buildings, with a few newer ones rising here and there. We were brought to one of these older three-story buildings. Everything felt so different. We quickly settled in and decided to explore the area.

We had a few days until the scheduled EEG and consultation with the professor. But I was so tense that I couldn’t fully immerse myself in the atmosphere of this new country. Those were fascinating days. Friends living in Israel invited us to their home, showing us many incredible places, but I couldn’t relax or enjoy the beauty. I regret it now, but at that time, it simply wasn’t possible. My mind was consumed with the upcoming meeting with the professor.

July 10. The day of the EEG-video monitoring. We arrived at the hospital and were then directed to a medical center located right on the famous seafront promenade. The sun was shining, the light glinting off the water, dazzlingly beautiful. But I was in no mood to appreciate it. I was focused on the long procedure ahead.

I deeply regret that we didn’t take a stroll along the promenade or sit on the pristine sand. It wasn’t only because of my tension but also a certain feeling of guilt. How could I relax and enjoy the sea when my child was in such a state? That wasn’t why we were there. We had come to heal our child, and once she was well, then I could allow myself to relax. We couldn’t even entertain the idea that this might not happen. That just couldn’t be. Only severely ill children with cerebral palsy are incurable, I thought then. My beautiful little girl was entirely different. I truly believed that at the time.

_________

“Didn’t they tell you it’s West Syndrome? It’s obvious. West Syndrome with hypsarrhythmia.”

Our consultation with the professor was scheduled for late evening at his private home. I was terribly nervous and flustered. I saw epilepsy as a challenging but treatable condition, and I was certain the Israeli professor would know how to address it. From various support groups, I’d learned that Israel offered a wider range of high-quality antiepileptic medications than we had access to. I was already prepared to stock up on any new medicines we’d be prescribed. I wanted to start a new treatment as quickly as possible.

And then, a shock. What syndrome? We had only just come to terms with the painful reality that our child had epilepsy. We came to treat epilepsy. And now, a whole syndrome?

West Syndrome — a severe form of infant epilepsy that occurs in the first year of life. It is characterized by spasmodic muscle contractions against a backdrop of developmental delays. It manifests as series of spasms and infantile seizures.

The professor asked to see videos of the seizures. It was important for him to observe them because our description didn’t fit the classic manifestation of West. But that it was indeed West Syndrome was evident from the EEG results. Yet, I didn’t need to take out my phone — the seizures began on their own. Silence fell over the room as everyone watched. Masha’s face turned red with blotches, her eyes watered, and she continued to widen them as if she was trying to scare someone. The professor kept his gaze on her until the episode ended, then commented:

“An unusual type of spasm. They can appear differently, but in your case, the primary focus is on the eyes. This is the first time I’ve seen this in my practice.”

Hearing that he was seeing this for the first time frightened me. Did he even know what to do? I didn’t yet understand that West Syndrome, regardless of how it presents, is treated in the same way worldwide.