Nene Dalakishvili, 40, Tbilisi

I was married at 22 and lived for 7 years with a man who was completely different from me. My eldest child, Mariam was diagnosed with hydrocephalus caused by birth trauma. They discharged us from the hospital, not telling us there was something wrong with the baby. In fact, during the childbirth, the pediatrician approach me a few times to complain that it took me too long to give birth. Her shift was ending and she was eager to go home. On the day of discharge, the same pediatrician told me: “you are a young clueless girl, so I guess I have to remind you that you are supposed to give 40 laris to me and 20 laris to the nurse.

Mariam was only 2 weeks old when we were first hospitalized. I will never forget the ambulance driver steering the wheel with one hand and, with the other hand stuck out of the window, swearing at other drivers as they refused to let us pass.
Actually, this driver’s efforts proved life saving for Mariam. In the children’s hospital we were met by an amazing staff who did their best to save Mariam, even though I could tell that they did not have much hope. They even hinted at leaving the child, as she was thought to be hopeless. Maybe I was very young and did not realize the gravity of the situation but this is exactly what helped me to stay strong. I never assumed that Mariam would not make it.

Hydrocephalus is a condition when the excessive accumulation of fluid in the brain is not compensated for and it causes unbearable headaches. The fuild creates harmful pressure on the tissues of brain and if a patient is not treated by surgically inserting a shunt system, the patient may have movement disordres and life sustaining functions may be damaged. Mariam had slowing of movements and strabismus in one eye. By the way, one NGO checked on orphanages and found out that the children with this condition were treated with only diuretics. The NGO concluded that the condition of these children was equal to torture murder.

The only treatment for hydrocephalus is a shunt system, which costs around 750 US dollars. I don’t know if anything’s changed by now, but until five years ago, there was no State support so the parents had to pay for it. If you were deprived, you had to get used to the idea that you child would meet the fatal end.

Mariam has undergone 16 surgeries, because the doctors at times messed up and the shunt valves festered in the head or in the stomach. In the meantime, I educated myself quite well in medicine. I know almost all the brain surgeons working in Tbilisi hospitals. I know who is good or mediocre, or who is mediocre but empathetic. For example, I know one brain surgeon who is from the family of doctors, who, on one disastrous night when we rushed Mariam to the shopital with a headache, came to the reception complaining that we woke them up. I have met a doctor who is unable to help but at least tells you who will. I have even met the doctors who will scold you for visiting them and send you back to the doctor who initially treated you. Fortunately, the doctors who are both empathetic and professional are a majority.

I have one ugly memory from the times newly born Mariam was hospitalized, the grandmother of one of the children in the next-door ward would stroll in, look down on Maram, shake her head regretfully and leave. There was one kid, a third child in the family, who was abandoned by the family for having been born with Down syndrome. Only the father visited his child sometimes and brought food, the mother was depressed and never showed up. One nurse took care of the baby, taking his linen and clothes home and washing them. We, mothers of other children, sometimes changed clothes or fed him fro the bottle. All the babies had their mothers by their side, but this tiny creature lay completely alone. On day, the relatives bustled in, brought a priest, borrowed a tub from us, baptized him and left clearly relieved of all the responsibilities. They never returned.

Once, when 6-month old Mariam was being prepared for yet another surgery, I happened to glance into her eyes and the look in her eyes told me she was a fighter. I am sometimes told that I’m a hero, but I don’t agree. If anyone is a hero, it is Mariam, who has been overcoming all the difficulties in her way. It’s just that she was too young to make decisions on her own and we – mostly I and her two grandmothers – helped her in that.

Mariam underwent the last surgery about 3 years ago in Aversi. The surgery was administered by Lasha Bakradze, who I stumbled across accidentally, because none of his colleagues told me that there was such a high level professional in Georgia. Lasha Bakradze corrected all the mistakes made by the doctors for years and every time I hear about someone with problems similar to Mariam’s, I advise them to go to this person.

I can usually find justification for human behavior but there are things that cannot be justified. If I am bearing a burden, you, the biological father, must shoulder this burden too because you are a parent just like me. When we are young, we all make some mistakes and irresponsible decisions but when you have a family, you must make a clear choice. Our family problems started with drugs and ended with alcoholism. Every time he drank, he became aggressive. There were 3-4 month periods when he did not drink and the life went back to regular: he took kids for a walk, took care of them, bathed them, but after three months he would do something outrageous again. I would take my kids and run away to my mother’s place, then we would make up but our peaceful life lasted for only a few months, followed by fight, rows, and beating again. Mariam’s condition worsened from time to time and it was difficult to cope with two problems at a time. The only positive outcome of our marriage is my children. When I gave birth to Tata, I was eager to find out what it was like to raise a child without any health problems. I am not going to live forever, but Mariam needs someone to rely on. If I did not have a brother, I would struggle in life. I believe a child must not be growing up alone and must have a sibling.

One day I woke up and realized that I had had enough. I packed my stuff, took my children and left. He was surprised when I did not go back. He asked if I’d stopped loving him overnight. These things don’t happen in the blink of an eye. I am very patient, but the last drop makes the cup run over. Then followed threats, uninvited calls, but this time I knew for sure that I was to continue my life alone and I was to be both the mother and the father for my children.

I forbade myself to cry because even your children don’t want you unhappy, complaining and messy, let alone anyone else. You must be a role model for you children. During those 7 years, I lost too much time both in terms of professional and personal development. It took me quite long to beat depression and love myself for who I am; to realize that I am not worse than others, to restore my self-confidence and return the face of a human. Sometimes you want to depend on someone and say that you’re tired but you should not burden others with your problems. You should smile often and never whine.

The most important thing for me is to let my children know that I am their supporter and their friend. I am happy that they have the right values. They know that it is wrong to laugh at others, that it is wrong to beat someone for a different orientation and they must stand up for those who need protection; that we are all but human. I may wish a certain future for them, but when they grow up, they must decide who to love, who to live with, what profession to pick. And I must respect their choice.”

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