Our story can be viewed from 2 angles:
1. How was I before and how am I now; and 2. Before Germany and after moving to Germany.
I was born in Macedonia and I have lived there for 30 years. In the last 4 years, my family and I moved to Germany.
I was pregnant with Јоана at 29 years old, after 2 years of marriage. At first, it seemed like a normal pregnancy. I see it that way until today, despite 2 little incidents. The first incident is that I bled a little in the 8th week of pregnancy. I went straight to the doctor who said that the baby is fine, and these things can happen. I just need to stay home for 15 days and take some pills and everything will be fine. Until today it’s unknown whether this is somehow related to Joana’s condition.
The second incident happened in the 34th week. I was doing a routine checkup, and the doctor made an ultrasound, and said that the baby seems a little bit smaller than it supposed to. She said it will be born with 2200 grams maximum. Now, I really can’t tell if this is also related, because those measurements cannot be very precise, and finally, Joana was born in the 39th week of pregnancy, 3 kg, which is a normal weight for a baby girl.
However, she didn’t breathe in the first minute, and the Apgar-Score was not very good (7-5-7). Since we don’t have any diagnose until today, we can only guess whether she was born with some kind of genetic disorder and that’s why she couldn’t breathe in the first moments, or her brain damage is because of the lack of oxygen in the first few minutes of her life.
We were released from the hospital a few days after, but before that, the doctor came to talk to us. He said he is not sure why she had problems breathing right away, and it would be nice to take her to a specialist, just to be sure that everything is fine.
At first look she was a normal baby. She was breastfed, slept normally, better said, all the time, like any newborn, but I knew deep inside that something was not right. It was something in the doctor’s tone that was disturbing to me. Like he suspected something is wrong, but cannot define what.
We didn’t talk too much about that with my husband. There were no reasons for panicking because the basics: feeding-sleeping-pooping, were normal. After a month, we went to a specialist who said that giving the description: normal eating, sleeping, no diarrhea, no vomiting, everything looks great. I mean, there is really not much you can expect from a 1-month old baby.
So, we decided we will go on with our lives, stay positive and happy.
I’ve noticed that she is not focusing on her eyes, and does not look at me or anyone. Then we’ve started noticing that she was almost 2 months old and she couldn’t hold her head alone. And a few weeks later, she got the first seizures. It hit us like thunder.
I will skip the time from when she was 2 and 6 months old. We had a feeling that the world is crushing above our heads. We’ve completely ignored our feelings and jumped right away into solutions: go to a specialist, get a second opinion, get a third opinion, find the best hospital, connect with other parents, provide the best physiotherapy, read articles (yes we knew we are not supposed to try to become doctors on Google, but we had to read about epilepsy, hear others people stories… That gave us hope that she could have a normal life, despite those seizures).
In my article Having a special child can be a wonderful experience, I was listing reasons why people consider having a special child so terrible. I put it under number 5 that “it depends on which country you live in the moment. How does your culture see persons with disabilities? Is the state involved in helping and supporting families with special children? Are there safe sidewalks and public transport appropriate for persons with disabilities?”
We’ve tried to make some genetic researches in our country, but simply there aren’t many laboratory capacities to do that.
So, we decided to take Joana to Ljubljana, Slovenia. She was 6-month-old. We wanted to do an MRI, and we agreed on the phone to do some basic genetic research. My husband and I both worked in a bank, and we knew nothing around the medical staff. And we thought when a specialist would see her, they will explain to us how to cure those seizures. At that point, our hopes and thoughts were based on the logic that she is too young, and this doesn’t mean anything. There are a lot of people with epilepsy who live normal lives. We couldn’t wait to hear what the doctors have to say.
The second day there, we sat down with the doctors, and our stomachs became small like peanuts, as we saw their serious faces. And then we heard it: Joana has brain damage. And she was tested for 10 different diseases/genetic disorders etc., and they didn’t detect the problem. So, if we want to proceed with other researches it will cost us additionally. We already paid a great amount of money for the first research. It was a foreign country, where we didn’t have health insurance. At the moment, the facts are that she has brain damage, and has unknown decease and no one can make any prognoses but most likely she will have physical and mental challenges. That was the first time that the question: how long will she live, came up.
Fast forward until today, I am truly in peace and I feel healed. And I love my life just as it is. I wouldn’t trade myself for no person in the world. But I still feel shaken when I think of those moments. That was the crushing moment, the heaviest of all that was happening in that period. It became heavy for me to only breathe.And I am absolutely sure, that because it was such a terrible truth because it hurt us so much, we needed a thought/action/plan/idea that would save us from the big pain. That’s why my husband said what he said 15 minutes later.
So, we remained alone in the room, my husband, Joana (who was sleeping carelessly), and me. I tried not to fall apart with tears in my throat, and we looked at each other, and my husband said: we are moving to Germany. And he said that not in a form of a question, not in a form of an idea, but with a lot of peacefulness and like it is the most logical step. And I felt inside my body a glimpse of relief and said: Yes, let’s do that.
I feel like I need to explain a little more about us here. We were completely different persons than. Not a risk-takers, wanting to keep things simple, went to college, found corporate jobs, going on vacation in summer. We were not thinking too much if we want to work what we worked, the important thing is that we have security in our lives. We had our own home and a car, and we didn’t have to pay rent. We were completely well seated in our comfort zone.
That word “comfort zone” diminished in a second, we’ve decided that we will move in Germany. When Joana was 13 months we were already in the city of Neuss in North Rhein Westfalen, just 10km from Dusseldorf. We didn’t speak the language but we managed somehow to communicate a little bit on English and just a tiny bit of German.
I felt wonderful. Like we’ve made the best decision from the day we’ve got there. In the first 2 years my husband was working labor jobs so we could pay rent and have health insurance. Besides the fact that we lost the security that was known for us, and now we were paying rent and working labor jobs and were faced with a different culture and we didn’t have a car in the first year, we felt good. We were pleased and kinda proud that we decided to make this move. That gave us the courage and hope that we can do even more for our baby.
For Joana we found everything we hoped, and more.
We were lucky to get a recommendation for a doctor in Uni Clinic Dusseldorf, that is Joana’s doctor until today. They made MRI and basic blood researches. They said that she doesn’t have clear symptoms about any disease. It could be one of the mitochondrial diseases or some other genetic disorder, but it’s very unclear. So, they did more serious research, Exome Sequencing, in a laboratory in Munich. They have tested 20.000 genes and 1.800 genetic mutations, and the results were- that there are no results. In the last 4 years, a few types of research more were made. One was for Angelman syndrome when she was 3 years old and a few more. Its open question for now.
But the facts are that she has brain damage, her head is a little bit smaller for a girl her age, and she is facing mental and physical challenges.
In the meantime, she received a lot of physio, ergo, and logotherapy. She started to go to kindergarten, except for the last 7 months, which are the most challenging for her.
To sum up, moving to Germany has brought us some level of peace and satisfaction about how we handle the fact that we have a special child. Plus, it is an only 2-hour flight to Macedonia, and we often visit our family. Germany is a nice country; we live in a nice city and the people are great. We were learning the language and started to communicate more and more, which was satisfying for us and have built our self-confidence.
But there was still a great amount of sadness, worry, trying to fix her, frustration, self-pity, feeling sorry for her and what things she is missing in her life, everything that healthy children her age can do.
I remember one day, I woke up after a nightmare, and felt relieved that it was just a dream. And after 5 minutes as I started to plan the day I was aware of my feelings and they were the same feelings I was feeling in that nightmare, and I was shocked in the knowing: I feel like I am in a nightmare all the time, every day.
My programs were that having disabilities is the ultimate tragedy. That is totally unfair and cuts you from so many possibilities. I am being honest from the bottom of my heart: I couldn’t stand the fact that my child has disabilities. The emotions were mixing, a little bit of guilt, a little bit of shame (did I do anything wrong in my pregnancy or did we take her to the doctor too late?). Then sadness, then worries (How is she going to be? Will she suffer? How long will she live?). Then frustration, then self-pity (all the things we could have done if things were different, now we can’t do this, we can’t do that…). Sounds familiar? I don’t know what was the reason, but these emotions were extremely strong at her birthdays, my birthdays, and New Year’s. I practically could barely handle those days.
We had good and scary cycles with Joana. When things were good, she was a happy girl who smiles a lot, who enjoys long walks in the park and loves be in Kindergarten. She ate with appetite, loved cuddling, enjoyed long naps, singing, and simply spreading joy all around her.
In the scary episodes- well, let’s just say there was a lot of crying and screaming, struggling with sleeping, some eating issues and long hospital stays.
But I admit – even in her best days, I couldn’t reach the feeling that I am not worried for her, sad for her or for me.
That was until September 2018, when I felt that something shifted inside me. I was trying to speak to God like million times until that moment, and to get clarity. Especially in the hard times. But suddenly an idea appeared: what if “Why me? Why my little girl? What did I do wrong?” were not the right questions? What if the whole idea of the challenge was to find happiness in the situation like it is? What if unwanted situations in life are blessing in disguise, waiting to be revealed? What if the suffering is a choice and there is a much wider picture here?
Only by asking these new questions, I felt a little relief. And then I come across so many people that write and speak about challenges in life, about our power to heal our pain if we start to look at things from a different angle. I’ve learned that personal development is the key. That all thoughts, all suffering, all limiting beliefs are inside me, and I am only projecting them in real life. I learned to accept, to relax, to trust, to believe that Joana has her own agenda, that we all have the inner beings that are leading us through life, and showing us how to become more from what we are. I learned that I need to trust her and that I shouldn’t push against.
One night after all these new ideas were running in my head, Joana cried very hard and couldn’t sleep. I took her in my arms and I hugged her, and I whispered in her ear: I trust you. I trust you and I know that you know how powerful you are. I am not going to try to fix you anymore.
And she stopped crying, and a few minutes later she fell asleep. It was a turning point for me.it was so clear how me being peaceful is making her calm. And my grief and feeling of suffering would make her even more nervous. And from that moment I become very dedicated to personal development because I saw that only being the best version of myself, brings good to her.
Just to be clear, I am not saying that every time a blue moment came, that tactic- me whispering at her ear was helping. It didn’t. But I took it as a sign that now I am on the right track. That no one is doing anything to me from the outside. No one was punishing me, tempting me, or testing me. But I was given the opportunity to learn from a different perspective.
Oprah Winfrey has a quote: “What I know for sure is this: The big secret in life is that there is no big secret… There is just you, this moment and a choice”.
Dr. Shefali says: Each one of us will go through a crisis in our lives, if we haven´t already. There is no escaping of the crises. The nature of life is such that there are constant rocks and mountains on our way”.
Personal development is a journey with no end. This was a very short version of our story for the last 5 years. Follow my blog for more details of our journey.