My Daughter Spent A Week In The Pediatric Neurological Unit, And This What I Learned

Alone in the bathtub, my hands burned when they hit the water, raw from scrubbing with alcohol from containers suspended along the hospital walls. I had pressed the thin metal bar, over and over, obsessive and Pavlovian, every time I entered or exited the room. I needed some security, some protection, some kind of relief and had been scrubbing my hands red for six days. My 18-month-old daughter was still on an IV, slowly recovering from the virus she caught while we were in the hospital for what was supposed to be a routine MRI; a routine MRI, to scan for a brain tumor after we noticed a slight misalignment in her eyes.

“Routine, routine, routine,” I had repeated to myself on the days leading up to the appointment, but the words “brain” and “tumor,” together, were not routine, for my head or my heart.

My husband stayed at her bedside that night, while I took the train across Berlin, back to our apartment for a single night off, to relax, take a bath, sleep in my own bed, and contemplate the last days. It was one of those early heat waves that came on, almost too sudden, as though the seasons shifted, the year moved on, while we were stuck in time. For five nights I had watched my daughter from behind the jail cell crib that reminded me we were in an Old East German hospital. The stale room, the linoleum floors, plastic curtains, and cold furniture, were also utilitarian and unforgiving.

Outside the Kinderklinik, the hospital grounds felt like time travel to another period, the manicured gardens, classic architecture erected in 1710, by order of King Frederick I of Prussia, after the anticipation of the bubonic plague. This was only relevant to me in hindsight, as I tried to make sense of feeling so out of time, out of place.

We were staying in the pediatric neurological ward, in rooms mostly occupied by parents and children with serious and debilitating disorders, hooked up to feeding tubes, wrapped in gauze after brain or eye surgery, or supine on rolling beds. My daughter seemed so healthy, so out of place. I still remember the neurosurgeon’s first words when he came in for her examination, “Oh, she can walk,” surprised that she passed this basic developmental milestone.

I was convinced that our visit was simply a formality, swift and perfunctory; the doctors would give her a cursory “All clear,” or “Alles gut” and release. I was even prepared for them to tell us she would need glasses or one of those eye patches that seem so common nowadays. Maybe we could find one in pink or bearing an elephant, her favorite animal. As a mother, I worried about her frustration, vision challenges, and the mere practicalities of covering one eye, but, even with those concerns, I believed we would go back to our lives, exactly, and painlessly, as they were.

When she didn’t wake up from her anesthetic, I knew something was wrong. She was supposed to come out of it in only a few hours and then we supposed to be released to go home. After the doctors reported that they wanted to keep her overnight for monitoring, she woke up briefly, delirious and vomiting. The next day, same thing, lethargic and vomiting, so she was put on an IV and we were told to wait. Sometime in the afternoon, I ran with her feverish, limp body through the hospital yelling, “Hilfe,” hysterical and angry at myself for not learning German in time, for not having the words to express my fear or outrage or total loss of control. For days, the doctors tried to figure out what had gone wrong. They were testing her for stomach cancer, lymphoma, and lung cancer. They looked for tumors, but eventually determined, it was just a really bad bug.

I thought, okay, I can do this. But let her just get better so we can go back to our normal lives.

Initially, we were told that her MRI brain scan results were clear, but on the third day, after a more thorough review, the neurologist entered the room, looking grim and stated, “We found an abnormality.” Between the technical German, poor English, and vague medical descriptions, the words stopped having meaning, the sentences ceased to clarify, and the only thing I heard was: “Something is wrong with my daughter.” Moments later we were rushed before a light-backed MRI film, being told that her brain casing could be compressing her spinal cord and then vague descriptions of what symptoms she might face, treatment options like brain surgery or a brain stent.

But all of this, had the thud of the unreal, because not my baby, not my life.

I had spent so much of my youth and adulthood, believing that if I made the right decisions, did the right thing, that I was entitled to a certain existence, a certain level of security, a certain set of outcomes. Most of my decisions have been made to maximize the return on my life, but more, to minimize the chances of pain. To do this, I was caught up in goals and plans, strategizing what was I going to do next, or get or see, or how to fulfill my own dreams. Though I have always been a risk-taker, I am also a planner and most of my decisions turn towards the least amount of resistance, the least amount of pain.

Of course it was me, me, me. Isn’t it always, until it’s not?

It seems so naïve now, even to write this, but having my daughter diagnosed with a rare brain condition (Chiari malformation), that may or may not present symptoms, and may or may not be affecting her vision, and may or may not require her to have brain surgery in the next months or years, left me questioning everything. When something goes wrong for me, I am often left to go back in time, try to figure out when I made the error, when did I make the wrong decision? How could this have happened? What did I do? Because “something wrong with my daughter” was just another way of saying, “something is wrong with me.” I had so many questions, and there was shock, and then searching. The one question that hit me hardest was, “Am I that person now? That person who has a sick child? Am I that person, with that life?”

And, there I was, like a character in a movie or the protagonist in a Sunday morning feature, living in a pediatric neuro unit, surrounded by illness and fear, and the unknown. I was living out those moments I had pitied in others, I was that person I used to feel sorry for, that I never thought I would be, that truly, I never thought I could be.

I remember stepping out of the U-bahn that night, feeling like the world turned, a new angle, a shifted light, and everything looked more vivid. I made my way from the train station, navigating back to our apartment, along our street in the center of this foreign capital, this foreign country. For the first time, I did not feel like an outsider. I was really seeing, really feeling everyone around me. Suddenly we all seemed more vulnerable. The children passed by me in strollers or raced by on scooters and I wondered, did any of them have an invisible health condition, were their mothers stricken with a degenerative disease? The elderly, seemed so frail, and I could sense for the first time, how long their days must feel. There was such humanity in suffering, empathy in suffering, and, reality in suffering. There was real life in suffering.

First I thought, why me? Then, why not me? And then… of course, me.

For so long, I lived outside of these vulnerabilities and fears. I had spent so much of my life running from them, trying to make decisions that would protect me from this kind of pain, but, of course, it was always there. I used to see parents of children with children who were disabled, diseased, or dying and think, “Poor them, I could never handle that,” but this thinking, was a kind of distraction, a distancing, as though, if I couldn’t handle it, if it was so far from my realm of understanding, it wouldn’t happen to me.

During that week in the neuro unit, I sat with the other parents, watching them push through the waiting, and the discomforts, and the anguish of watching a child in pain. I watched them fight and care for their children with nothing less than Herculean strength. I was there with them, in the trenches, no longer pitying those who had been dealt a less fortunate hand, but admiring them, seeing them for the myriad ways they drew strength, stepping up to their daily challenges and their lives. Seeing that, they could absolutely handle it, and of course, they do.

And we’re all tired, and we’re drinking 18 cups of coffee a day and trying to figure out what we can possibly eat at the cafeteria and wondering if it’s weird to get pizza delivery to a hospital, and are we even able to eat anyway. But we get by, surviving those seconds, and minutes, and hours that make up the days.

The things we think we cannot handle are there to teach us that we can.

For the first time, I didn’t need perfection, I wasn’t above it all. I was in it. There was something in this new reality that made me feel so utterly blessed, so connected and human. I no longer had to fight for a perfect life. And, when you’re in it, you see, it is not a life of pity, but a life of love and strength. I found, that I was able to handle hardship, and I would do it, however it came. I thought, “I can do this, I will do this.” And more, “I have the strength and compassion and courage to do this.” Somehow, even in those dark nights, battling my worst fears, I never felt more capable. I never felt stronger.

It won’t be the last time, I get sucker punched with fear or loss, or feel the grip of my own vulnerabilities and of those around me. And even when we think we cannot take anymore, when we need to break past the hospital walls, take a deep breath, sit beneath the trees and just stop to rest. In these private moments away, we may cry, and mourn, the perfect lives we had imagined, or long for those painless lives we will always wish for our children. We will take notice of a cherry blossom, or a patch of clouds, the smell of grass, and feel the earth and the sun. We will know we are connected and whole, and we will go back inside, and love with everything we have.