I am not Catholic, but on my wedding day, a Catholic priest dubbed me a “Searcher for God.” This is the story of my search.
I was raised by atheists in a (then) communist country in Eastern Europe. Even though we were atheists, we honored Catholic customs and traditions. My wife, on the other hand, was born and raised Catholic. We met on September 1, 1996—the first day of high school. Jelena was the prettiest girl in my class, and I soon realized she was also the smartest. Being a somewhat shy and insecure young man, it took me almost a year to ask her out; by that time, we were already best friends.
Not long into our dating, tragedy struck as Jelena’s father died in a car accident. Perhaps unconsciously trying to fill a void that had been created in their lives, Jelena, her sister, and their mother would go to the local orphanage and take in children for a weekend. They would take them to the zoo and playgrounds and return them after the weekend was over. On one particular occasion, they invited me, and I obliged.
The experience will be etched in my memory as long as I live. As Jelena and I entered a room, about 15 to 20 children stormed us with smiling faces. They started pulling our trousers, asking: “Will you be my daddy? Will you take me home?” They smiled the whole time but with a kind of deep sadness, as if they knew this was their only way out of there, their only way to be truly loved. It was soul-crushingly, gut-wrenchingly sad. When we stepped outside, I told Jelena: “If we ever end up married, for every child of our own, we have to adopt one from here.” The feeling was mutual and we kind of made an unofficial pact.
The way we would eventually honor it was something completely different indeed.
As fate would have it, Jelena and I finished high school and went to college together. In our senior year, out of the blue, we decided to tie the knot. It was clear we were meant to be together. Before even graduating, we decided to head back home, as I discovered a very lucrative new opportunity—snail farming. We got a piece of land and found a small cottage nearby where we were allowed to live free of charge, and everything was looking bright.
Then one day, as I was helping my brother on his farm, my phone rang. It was my wife. From the first few words she uttered, I could tell that she was nervously excited, maybe even a little bit frightened about something. And then, entirely unexpectedly, she uttered the words I will remember forever: “How would you like for us to become foster parents to a little boy?”
What? I tried to remain calm and collected and started asking all the—as you will surely agree—appropriate questions: “What do you mean foster parents to a small boy? What small boy? Where is he now? How old is he? What’s happening?” But as I was asking these questions, something in the back of my mind was starting to get happy and excited. This is the beginning of the story of my son Aleksa and also the part where you should really strap in.
Blessed with a little boy
By the time we learned about the existence of our son, he was two and a half years old. Born out of rape, he was placed in a foster home. His mom returned to her husband and two sons, hoping one day her husband would accept the baby. When she was not able to pay his foster family anymore, in despair, she went to a Catholic priest for advice. It just so happened that this priest was leading a prayer group for married couples where we lived. Luckily, one of the married couples was my wife’s mother and her new husband. So, one day, the priest asked them all to pray for a young boy, his birthmother, and their family. When my wife heard this story, she asked her mother: “So? Will you take the boy?” Her mother replied: “No, we are too old. Why don’t you take him?”
Why not indeed? After all, we did make an oath.
It was November 8, 2006, when our son was “born” into our family. We refer to this day as Aleksa’s second birthday, and we celebrate it still. As much as we feared how this adoption thing was going to work out, from the very first day, going to sleep together and waking up as a family felt perfect. He was perfect. Being a family felt so natural, so right. After all, Aleksa was just an innocent child who needed someone to call his own. The fact that we didn’t share the same genes made no difference whatsoever.
Take a step back, Biology, your powers are weak here. Love is in this house.
Our bliss, however, was to be slowly but surely interrupted. It started soon after his third birthday, first as a simple gaze, then a simple cry. Then it became more frequent. Doctors said it could be epilepsy, so we took him to a child neurologist in Novi Sad, where we used to study.
“Don’t worry. Many children have epilepsy. With a few meds, they usually grow out of it in adolescence.”
Oh, how I wish that doctor had been right!
The snail farm turned out to be a dud. And because of Aleksa’s condition, we felt it would be better if we lived near his doctors. So we sold everything and returned to Novi Sad. We settled in, Aleksa started kindergarten, and after a few months, we started our very own pet shop. Things were looking bright once more.
Oh, how I wish that had been true!
Aleksa wasn’t getting better. He was getting worse. The doctor tried changing the meds a few times, but it was starting to be apparent that something else was going on. It wasn’t until 2010 that we finally got the answer. By that time, Aleksa was unable to walk by himself, he was forgetting words, and we were sure he was having eyesight issues. After a whole team of doctors ran all kinds of tests, their answer was as follows:
It’s not just epilepsy. It is something else, but we don’t know what it is. Go home and when he progresses more, only then, from his symptoms, will we be able to determine what the problem is. And, by the way, there’s nothing wrong with his eyes.
WRONG! All of it was WRONG on so many levels. “Go home and wait for your son to deteriorate more?” That’s your answer?
We were devastated! We were furious! Immediately, Jelena sat down and googled, and by about 3 a.m. the next morning she found it. Just a laywoman, just Google, and she found out what all those doctors couldn’t. The key was eyesight. Jelena was sure Aleksa was losing his eyesight, and she managed to find a paper citing three neurodegenerative conditions that cause eyesight issues. We finally found our foe, and its name was late infantile Batten disease. We searched more and the blows kept coming: Symptoms develop after the age of three, progressive epilepsy, loss of motor skills, loss of vision, early death. Life expectancy: 12 years.
No cure. No cure. No . . . cure.
No. That can’t be true. There must be someone looking for a cure!
We got up, wiped our tears, dusted ourselves off, and prepared for battle. And a fierce battle it was. It lasted for over a decade. We teamed up with other families, traveled to Chicago, visited conferences, met other children like Aleksa, and talked to experts. One doctor was on the brink of finding a cure. There was no time to waste! We found a potential new treatment in China that could slow down the progression but not cure our children. So, until the clinical trial was supposed to start, we would go to China and nurture our children as best we could.
To this day, that trial still hasn’t started.
Aleksa fought bravely until 2017. He surpassed all doctors’ predictions and died peacefully in our arms.
I remember, while we were still looking for answers, a local doctor told us: “Why don’t you give him back? You are still young. Don’t throw your life away.”
What did we do? We sold our pet shop and returned home to take care of our son. A job, a career, it all meant nothing! All that we cared about was being with our son and giving him all of our love and attention. The experience we had with our baby boy, the love we shared . . . nothing compares to that, not even remotely!
“How would you like for us to become foster parents to a little boy?” Even today, when I think back to that question, my answer is: There’s nothing I would love more, and I would do it a thousand times over!
Our little boy changed us forever. He enriched our lives and made us better people. He taught us what real values in life are, and he showed us that we were stronger than we ever thought possible.
Still not a day goes by without suffering our loss. Not a day goes by without wishing he was still here. And for those of you struggling with loss, here’s a quote that has helped me deal with the pain: “Embrace your pain. It is all you have left. And remember: If the scars are deep, then so was the love.”
So even when I am having bad days and experiencing unbearable pain, in a strange way I am happy in my suffering because I know the love we shared was immense, and it still is to this day.
Paying love forward
You might be wondering where we are today. At present, we are planning on building a summer camp for children with disabilities, the first of its kind in our country. And we are foster parents to two little orphan girls with Down syndrome. We watch how they grow and learn things that experts told us would not be possible. Each second of each minute of each hour of each day, we know our life now would never be as rich if it wasn’t for our son and the love we experienced.
And to this day, I am still searching, and I still haven’t found my God. Or have I?
I leave it up to you to decide.