Cornelia de Mariia

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.