Hello dear Argonaute friends,
My name is Johannes and I was born in August 2013, so in the AGO2 stone age. I liked it so much in my mother’s womb and I was so wedged that a normal birth was not possible - so I was born with an emergency cesarean section. I was small and slender, but breathing was no problem, however sucking was very difficult for me. It was only thanks to the endless patience of my mother that I took in enough breast milk. Maybe the doctors already suspected that "something was wrong", but nobody said anything. After a week I was allowed to leave the hospital.
My parents were overjoyed, they had achieved everything they had set out to do: Their educations were complete, they had bought a nice house and finally I came to live with them.
The next six months were probably the most beautiful and happiest for the three of us. My parents always saw me through "rose-colored glasses", they didn't see or didn't want to see that my muscle tone was much too low, that I couldn't drink adequately, that I needed the duration of a whole feature film to get full, and that I only gained insufficient weight. The rest of my development was not going as expected either. At the age of six months, during a routine check-up, our pediatrician told us that there must be something "wrong" with Johannes.
Thus began my journey as an Argonaute, unnoticed, incognito. My journey took me to many doctors, through many clinical exams, many blood draws, many genetic tests, but no one could find anything. In the first years, my low muscle tone was the leading symptom, I couldn't sit alone, couldn't eat alone, even the bottle had to be held by my parents. Once a week an early interventionist came to the house, then I started physiotherapy, occupational therapy, logotherapy, ....
Besides these problems I became a vampire. I was awake at night, screaming as if possessed by demons. My parents couldn't think of sleeping, and I sucked the lifeblood out of my parents' veins. I myself was so afraid of sleeping that I began to cry as soon as I entered the nursery.
When I was about two and a half years old, I had a focal seizure for the first time. In kindergarten, I was cared for by my own pedagogue, and had many mats around me and always my emergency medication.
My parents, however, did not let their heads hang down. We regularly went on trips. No matter whether it was an Italian sandy beach, Croatia or Corsica. With the "Wandertragerl" on my dad's back I explored the world: The macchia in Corsica, or a 2000 meter high summit in South Tyrol. In a child's seat in the car or on a plane - it wasn't easy, but we had fun and really grew together as a family. My parents had to feed me, though I could already drink on my own. For walking I was still much too weak in the beginning.
From the neurological side, I began to develop absences. I would twist my eyes upwards and be unresponsive for a short time. From then on I was given regular medication; it was not easy for my parents to explain to a three year old who can't speak and or understand that he should swallow a bitter medicine. It was helpful that my father knows a lot about medicines, especially those for sleeping. After a few phone calls and a very helpful pharmacy, an oral medication was prepared as a suppository (I had fewer seizures and I could sleep much better at night). My seizures were well controlled and I also started to walk with help. When I was about 7 years old, I gave my parents and the kindergarten a special present, as at the end, I took my first steps - alone!
Unfortunately, this joy lasted only for a short time. My absences became more frequent again and, above all, I completely lost my muscle tone with every seizure. I fell to the ground unchecked, which gave me a lot of bumps and hematomas. I was in a special outpatient clinic for epilepsy, and again got new medication, which unfortunately still does not work. My parents now work part-time, so they have more time for me, but also more time for themselves to regain strength.
I had become a stately young man, and even if I still can’t speak, I can assert my head. I have to be fed most of the time, but drinking works very well. Either I sit in my stroller or an adult holds me tightly by the hand. On bad days I have over 100 seizures.
At a check-up at the end of 2021 my attending physician told me that something might have come up during a repeated genetic examination. And on 23.02.2022 at 10:00 o'clock I made a stopover on my journey: I disclose my secret and reveal myself as an Argonaute. My journey now really takes up speed, as I am searching for other Argonautes with whom I can share my experiences, whom I can possibly meet, and with whom I can play.
Johannes
