Cornelia de Mariia

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.