Sopo Jokhadze, 24 years old, Tbilisi

,,I have two children. Tsotne is 4 years old, Ioane – two and a half years old. I was 22 weeks pregnant when doctors diagnosed Ioane with Microcephaly. When I heard it, my first question was if the child could live. I couldn’t think about anything else. They answered that yes, he could. After consulting with a geneticist, they offered to terminate the pregnancy with artificial delivery. I was faced with a choice, which was unexpected and I asked, nervously, why did they ask me that if the fetus’s life wasn’t in danger. I realized later that it was their duty to do so… after that my pregnancy continued as usual.

Microcephaly is a condition when the brain is three times smaller than normal and the brain folds are broadened. Ioane was also diagnosed with epilepsy and has been having prolonged seizures since he was seven months old, and it damaged his brain even more — more than half of his brain is already atrophied. Because of this, we stopped the therapy and exercises, which was supposed to help his physical development. He can’t sit independently; his motor skills are limited.

At first, of course, we were afraid. However, getting all the information I could before his birth was a tremendous help. I found out everything I could, and I knew what I would have to do. But there were still problems I couldn’t handle. For example, when he started having strong seizures, they could last for an hour, two, or sometimes even for four-five hours… After turning 7 months old the seizures shortened in length. It’s me who calls them short, but even a half-hour is a long time for a seizure, but considering Ioane’s condition, it looks like a faint to me. Then we also had occasions when we got just in time in the hospital, he was already blackened and couldn’t breathe. It was then that I realized what a mother feels when she loses a child. Going through these seconds and minutes, all of my fears were gone. I was afraid of little things before, but all of that went away and only this fear remained. 

Although we don’t live together anymore, the father of my children helps me out as much as he can. Their father and his mother are people I can trust blindly, they’re taking great care of him and they know every single detail. When Ioane is sick, we spend almost 20 days or two weeks per month in the hospital and I have to be there all the time. When that happens, Tsotne stays with his father and grandma. In fact, Beka’s mother has raised Tsotne for the last two years. When I was pregnant, I got him already used to the fact that he would have a little brother. I didn’t want him to be jealous of his brother and when Ioane was born, I tried to arrange permanent contact between them. We have started from elementary things, putting on socks, helping change diapers, taking care of him; I always tried to get him involved in everything and he liked it too, he was with me and Ioane all the time. It gave good results. However, there was a period when Ioane often had seizures and I had to be in the hospital for two weeks or more, I was rarely at home so he was angry at me for being lonely. If I was at home, he didn’t come to me, didn’t greet or hug me… Then it went away. I always talk to him and explaining the situation. I never tried to distance him from Ioane’s situation. On the contrary, I believe he has to know everything. 

When Ioane’s seizures start, the first thing I do is giving him Diazepam. If it doesn’t help, then I call an ambulance. Then my options are exhausted and I alone can’t help him — his breath is inhibited. There are periods of seizures so frequent that even his daily medications aren’t enough. How I’m dealing with it psychologically, I don’t really know. Sometimes I take it all too hard. When something like this happens and Ioane has a two-hour convulsion, I stand there and I look like the undisturbed, heartless person; I can’t express my emotions. Until all this is over and Ioane’s at home, I remain strong, but then, when I realize that he’s calmed down, then’s when it all hits me. I have my moments of weakness, but I don’t stress too much. I know that it’s my job, it’s my responsibility, I made the decision and I have to handle it myself. I made this move deliberately and I’m happy with my decision. I don’t regret it even for a second. 

I call Ioane ,,Iokodzuna” because he looks like a little sumo wrestler with his fat rolls, facial expressions, eyes and the main reason – he is the number 1 for me, the strongest and the most fighting person. 

Ioane doesn’t have a disability status, I had to collect some documents and then he got measles, we had a terrible period that lasted long and I didn’t have the time. When he’ll get a status, we’ll have some benefits. 

Many people think, that if a person has to face a problem like this, it’s a tragedy. No, this is not a tragedy, on the contrary, it’s a great source of power. Ioane gave me such strength in my life, he has changed my life, my views, I appreciate things I would never even think about. The only downside is the pain. There were situations when I couldn’t keep him calm for two or three days, he was in my hands 24/7, he couldn’t sleep, and nothing helped. That’s when I thought for a second, why should a baby feel pain like this?! if he was born to suffer so much, then I don’t want it, I’d prefer if I didn’t have him and I’d suffer instead of him. But then I realize that I have Iokodzuna and Iokodzuna is very strong. There are questions about his life expectancy. I don’t know and I’ll never know, but until he’s alive, he’ll be the happiest person in the world. He is such an honest, loveable person that he can’t bring anything but happiness. This is the most wonderful thing for me.” 

 

 

Author: Nino Gamisonia

Photo: Salome Tsopurashvili