Little Mari knows: if you really want something, it will happen for sure. Doctors say that miracles happen, but not this time, not with Mari... How to live with this? Should the little beauty know about this?
“Mom says I'm beautiful. And I also think that I have a nice face ... What do you think? If I can walk, will I make a good model? I will be doing my makeup myself, will be doing my hair myself, I even know how I will behave on the catwalk,” - Marie closes her eyes and imagines how she walks in beautiful outfits in front of the audience. Then tears appear in her eyes, and she quietly asks: “Do you believe that I can? Do you believe I can do it?"
Manana and Levan, parents of Mariam Kasradze, are refugees from Tskhinvali. They left their home village of Kekhvi, in what they were wearing - home clothes and slippers. They started life in Tserovani from scratch. First, the war, which took everything away, then another blow - the incurable illness of their daughter.
Manana: When I was eighth month pregnant, I learned that the child would be born disabled. A sonographer showed me the screen and said that nothing could be done. Mari had a low birth weight - 1800 grams and an open wound - her spinal cord was exposed. Due to her serious condition, she had to be operated on urgently at the Zhvania clinic. In those days, I felt like I was out of reality, hit on my head with a hammer. I was in complete confusion and despair. But one of the doctors said important words to me, they helped me get together: “There is no time for worries and bad thoughts now. You have no time to go limp. Save your child, fight."
Marie was diagnosed with a spinal hernia. At the age of three, she had one more surgery - she was operated on the pelvis. We did not have the status of socially unprotected persons then, and we paid for everything ourselves. My daughter has been operated for six times during her 11 years, but none of the surgeries brought even a small result. She is paralyzed from the waist down; she has one leg shorter than the other. Mari spends all day in a wheelchair. I would like her to be as mobile as her peers - so that she could go for a walk with her friends, so that the simplest things would be available to her. This is our pain. I have not fully accepted the fact that my daughter will never get on her feet. I cannot accept this. If there is at least one opinion against ten that something can work out, we will try it. The operation on her feet was done unsuccessfully, incorrectly, as the doctors admit. You know, I don’t want to give up this ray of hope. It hurts and it’s scary to hear from the doctor: "You should not delude yourself – she will never be able to walk.”
Our main misfortune is overlaid with everyday problems which should be solved immediately. We are focused on survival - that's what drives us crazy.
- What does Mari need? Tell me about your life, your problems, and needs.
Manana: She constantly needs diapers - at least three packs a month. One pack’s price is 37 GEL. My baby does not feel the urge to urinate. We need nutritious food for Mari. What can I do with my beggarly cleaner’s salary? Poverty and lack of money sometimes oppress even more than the disease itself. Mari was born very weak - she was unable to latch on and suckle. We had to transition her breastfeeding to formula. But we had no means. My husband discovered some shop in Didube where they used to lend him Humana formula - he only had to leave his ID card there. I recall with bitterness the case when I asked to lend me some yogurt and cookies in the store for my baby and they refused me. I left the store crushed. It's terrible to be poor when your child is hungry and sick.
We take Mari for treatment course to a clinic in the capital. This program is funded by the state. There are physical exercises, classes with a teacher - we travel to Tbilisi 10 times a month. This is quite difficult every time. You should take the minibus with the child in your arms and find a place to sit. Quite often all the seats are occupied, and you have to stand on your feet. This situation brings me to tears. If Levan, my husband, takes our daughter there, he always flips out and swears. During the winter lockdown, we gave up travel. Intercity transport was stopped, and taxi drivers asked 40 lari for one-way trip. Unfortunately, living conditions in Georgia are not at all adapted for disabled people.
But if you are the parents of such a child, you will learn to be strong. You have no right to give up and despair. Just serve your child and be happy when they are happy.
- Manana, it is so nice to hear that your husband supports you in everything. Please tell us the story how you met.
Manana: We met at my classmate's wedding. She got married in Kekhvi. The first impression of my future husband was - a calm, kind person. We liked each other and started dating every day. We didn’t wait long, didn’t hesitate - we got married in one month. I moved to Kekhvi. I really liked his family - mother, father, brothers. I was so enveloped by love and happiness that I did not at all strive back to my parents’ home, as is often happens to newly-made wives. I really thought that I would get old there together with my dear husband and live to see my grandchildren. We planned to build our own house, to be engaged in agriculture. The land is very rich there, it’s a fertile province. There are beautiful apple orchards. I also dreamed of such an apple orchard. It was a tremendous pleasure for me to work in the garden. I planted cucumbers and tomatoes. I willingly tended the cows, fed the chickens. It's a joy to be close to the land. It is a joy to have a good harvest. We dreamed of wealth, of a carefree and prosperous life. But the war ended everything ...
We fled in slippers and home clothes to escape the shelling. We left our home, left everything, thinking that we would be back soon. We thought everything would pass and we would be back, that it was something temporary. But to this day, the village of Kekhvi is occupied.
Levan experienced our departure especially hard. He cried every day. From that day on, our beautiful dream ended and a life full of hardships and difficulties began. Here, in Tserovani, the state had built cottages for us - refugees. When we moved here, we found out that a cottage was equipped with beds inside the room, kitchen furniture, all the necessary appliances and there was also some foodstuff for awhile. A year later, in 2009, Mari was born, later our son Vladimir.
Our family has become even stronger and more united from the experiences we have gone through.
- How are things going with work?
Manana: Is work the point? Many can puzzle a person with work. You can have a job - and have a meager salary. I am a cleaning lady, my husband is a worker, and we cannot cope with expenses, we cannot change anything in our life. Our relatives are refugees too. My mom helps us with foodstuff from time to time. I would like to mention one good, caring person who stood by us, who supported us as best he could in difficult times. This is Levan Zautashvili, the former governor of the Mtskheta-Mtianeti region. He is always very attentive to Mari, many times he brought us food and clothes. He never missed our daughter's birthday. He is very kind person, he is very close to us. He does not do it for show.
- It's great that such officials exist. This is encouraging.
Manana: I can give other examples when strangers helped us. Eviko Basishvili, an emigrant, lives and works in Italy. She left Tserovani, but she keeps helping her relatives. When she sends package to them, there are always some gifts for Mari too. It’s very touching and nice. Our neighbor, journalist Nana Kakhniashvili, told us about the Chernovetskyi Found and helped us to contact you.
- You are in the right place. Because the Fund unites hundreds of caring people. You can name specific problems you have and count on real help.
Manana: Sometimes I lose hope and devote myself to heavy thoughts. But this is weakness. God has not forgotten about us. He gives us not only tests, but solutions and tips as well. Your Fund is just such an opportunity. We need this breath of fresh air to take a break from problems.
I would like to ask for a gas water heater. In a house where a sick child lives, the lack of hot water is a disaster. We have problems with the plumbing in the toilet. Our beds are unsuitable for sleeping. We have no dining table. Terra Bank gave a working desk to Mari. We will be very grateful for any help.
- Manana, are you happy with the online study, does it simplify your daily routine? Or you don’t like it, despite the difficulties associated with the transportation of Mari?
Manana: The last thing I want - is for my daughter to be alone. I try to prevent this with all my might. Alone at home, in a wheelchair ... No way!
Thank God, schools in villages opened earlier than in the capital. I take her there in a wheelchair in the morning and bring her back in the evening. I got a job as a school cleaner because of this - to be by her side. Mari does her homework on extended school, and then I pick her up.
As a mother of a sick child, I have many fears. I was especially nervous at the beginning: how would other children accept her, would they shy away from her, would she be isolated? But it was for nothing - classmates take care of Mari, they help her to move from one classroom to another by her wheelchair. I'm only worried because the school is big, it is crowded during breaks, the children are running around like crazy - so Mari as not to be hit by them.
A psychologist worked with me, he taught me how should I behave with my child, how should I develop confidence in her.
- Did you take his advice into account? What should you do in no way?
Manana: Suppress, take the initiative, scold.
- Mari completed her homework. So, we can talk to her, right?
Manana: Yes please.
- Marie, what subject do you do first?
Mari (11-year-old): Mathematics, it is my favorite, then English. I really like music too. And when I have free time, then I can do experiments with makeup.
- I wonder who you are experimenting on?
Mari: On my granny (laughs.) She lets me to paint her eyes and lips. How else can I study to be a stylist if no one will allow themselves to be painted?
- You want to become a stylist?
Mari: Very much! This is my dream. When I grow up, I will certainly learn. You know, everything related to beauty attracts me. I can watch for hours how models walk on the catwalk, what beautiful outfits they are wearing, how people clap for them, how they film them from all sides. I want to be like that, I really want. Mom says I'm beautiful. And I also think I have a pretty face.
- You're a real beauty!
Mari: And I am a show-off too. Mommy asks me to get a haircut, it is difficult for her to take care of my long hair. But I refuse. I want to be beautiful so that everyone will notice me. I do everything for beauty and for the mind. I read a lot (now it is "Rasmus the Tramp"). I even eat oatmeal for breakfast. But it happens that I look at my wheelchair and get very sad. How I wish I could throw it away!
- Dear Mari, honey, I'm sure you will certainly become a stylist. And you know, there are models in wheelchairs.
Mari: Thank you.
Children's dreams are so fragile... Mari's words made me cry. If we support her, give her confidence, her dreams will certainly come true. Unfortunately, in the situation where Mari lives today, it is difficult to remain confident. In addition to an incurable disease, there are everyday problems, lack of money, which her parents cannot cope with. These honest people fight at all their might but still cannot cope. We should not let Mari lose hope. There is nothing worse than a child who gave up on themselves, a child who does not believe in anything and does not dream. We will not surrender our Mari to the power of sadness, depression, and loneliness! May she be happy! Think about how you can contribute to this.
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