Who is Joana?
Who is Joana?
Besides being my daughter, Joana is also my teacher, someone who uplifts me, the person who motivates me the most, and the reason I started work on myself and develop as a better person – and she did that without saying a word😊.
If she didn’t say a word, then how?
Well, she lives her life from a different perspective than most people do. She is physically and mentally challenged. That didn’t match my perfect picture of what my life should look like and what kind of a child I want to raise. Having a special child didn’t match my system of beliefs and programs that I carry from childhood about what’s normal.
Her physical and mental challenges became a challenge for me to accept the fact that now I have a special child. That brought me into the direction of asking questions and finding answers about why this happened to me/us as a family, can I be happy again, how not to feel so desperate all the time, how to help my child, can I help her at all, am I doing a good job, did I made some kind of mistake because of which this happened and so on…
Looking for answers to all these questions helped me develop as a person, broader my understandings, change my perspective of how I used to look at life, and at happiness and “normal” in general. I’ve become very happy, relieved, enthusiastic about life and I started to help other people to achieve that too.
So, who is Joana?
Joana is my 5-year-old-endless blue eye-beautiful daughter who is perfect to me more than words can say.
She was born with brain damage, and it’s pretty difficult for me to explain her condition in a few words, mostly because we still have no diagnose for her. So, it is unclear whether she was born with brain damage or some genetic disorder and that’s why she didn’t breathe in the first minute of her life, or, for some other reason she didn’t breathe in the first minute and that’s why she has brain damage.
Until today doctors did many researches at her, like exom-sequenc, mitochondrial deceases, Angelman syndrome, other syndromes…and still no answer. She has unknown diagnoses and it is unclear whether she has a rare decease or some genetic disorder.
In the first two months of her life I’ve noticed that she is not smiling and didn’t look directly at me or anyone. But not every baby is the same, so we thought it will come later. And when she was 2 months old, she got the first epilepsy seizures. Until she was 6 months old it was clear from the MRI that she has brain damage and will probably have mental and/or physical challenges. At that point we’ve decided to move from Macedonia to Germany, which we believe has the best health care system in Europa.
That’s pretty much the time when we (my husband and I) started to change altogether and grow as persons. We didn’t saw changing countries as that big of a deal at the time. It was sort of like an instinct to us: get the baby, change the country, move somewhere better, move to the North Pole if needed if we knew that there will be better for her, but that was the first time that my husband or I stepped out from our comfort zones. And stepping out of your comfort zone is the first step in changing your life for the better.
And it is always one decision away.
This article is about Joana, I will get into more details about our family adventures in the article Our story, but I want to say that the step we’ve taken was huge and we were aware that it was a bold one. Change the country just like that, live behind our friends and family and our careers (my husband was working 11 years, me 9, both of us in a bank), and move 2.000 km away, in a country where we didn’t know the language or the culture or had any idea – how are we going to figure everything out.
Joana is now 5 years and 6 months old. She is moving around in a wheelchair, does not seat on her own, and cannot hold her head.
She is happy. She is a fighter. Very persistent and with strong intention. Loves long walks in the park. Loves to go to kindergarten. She loves to listen to music. She loves hugs and kisses. Loves to hear other children playing and making noises. That’s why she enjoys being around her cousins.
Her condition was going up and down in the past years. The last few months are the most challenging ones until today but she is an incredible fighter. I truly admire her.
Joana will be present in the articles to come and in my videos as well. After all, she is the teacher who thought me what is the beauty of life and how to live😉.