Mother Olya

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Mother Olya remembered her first conversation with the doctor for the rest of her life. The doctor who was doing the ultrasound of the newborn Kira, not even looking at her, said in an emotionless voice: “There is no brain in her head, but a complete mess. And with the internal organs, too, everything is bad. She won't live long - she'll die within a month, don't get attached." From these words, breathing suddenly stopped, and the entire surrounding space narrowed to one point. Mother Olya was sitting and trying to understand the words that escaped the doctor's moving lips. "Oral-facial-digital syndrome type 1" - there are no more people with a similar diagnosis in Ukraine. Then the world turned upside down for her.
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You will still give birth to a healthy one,” the doctors advised, but mother Olya did not even allow the thought of abandoning the child.

“It was an incredibly hard blow. If only I had learned about everything during pregnancy, I would have been ready – I would have found doctors, hospitals, I would have learned everything about the disease and the necessary treatment. All 17 days, while Kiriusha was in intensive care, I didn’t leave her – I washed, changed a diaper, learned to feed her with my milk from a syringe – because of the splitting of the upper palate, it was difficult for her to eat.

Sometimes I tried to apply it to the breast, because contact with the mother is very important for the child. I believe that if a child is loved, it feels happy, especially if there are parents next to it. These kids have a better chance of getting out and doing a miracle”.

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Now Kira is 3.5 years old, but she does not look her age, her development corresponds to the development of a one-year-old child. She understands everything, but instead of words, she makes lingering sounds, walks with difficulty and must constantly take antiepileptic drugs. Mother Olya takes care of her rehabilitation, surrounds her with care and heals with her love.

I am sitting in front of mother Olya, who unrestrainedly kisses Kira, turns her over, lifts her up on outstretched arms, which makes the baby burst into laughter, and makes sounds, taking part in the conversation of adults. She likes when guests come to visit her.

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“Kiriusha, the photographer has come! He will take photos with you. Let’s choose the most beautiful dress for you.” Fair-haired and smiling Kira drags her mother to the closet and, while mother holds her in her arms, she, with a serious look, begins to take out hangers with things with a small handle and dump unsuitable clothes on the floor. When the closet was empty, the favorite dress was found – like a ballerina.

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Mother helps Kira get dressed, and now she is ready to pose. Kira does not stand still, she always wants to go somewhere, watch something – a real fidget.

Mother Olya recalls the events that took place almost 3.5 years ago, as if it were yesterday. At first, it was incredibly difficult – confusion, a constant need for at least some kind of support, a continuous search for information about the diagnosis and qualified specialists. Soon the husband could not stand such an emotional and financial burden, and life together began to crumble: different health care providers, lack of money for rehabilitation, diagnostics, drugs – I constantly had to take care of Kira.

“The most difficult period of my life began when I was left alone with two children and without work – sometimes it happened that I chose: who eats today, me or my children. There was a time when I was employed in three jobs, grabbed at everything in order to get at least some money. The husband loves Kira, but in his own way. He is ready to hug her, kiss her, play with her, and even take her to his place on the weekend a couple of times a month. But he does not think about how much money it is necessary to buy Kira diapers, medicines and food … unfortunately – no. He knows how to love from afar,” she says.

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Over the years, mother Olya has learned all the available information about the syndrome. “I was surprised when I found only one paragraph of 3 sentences in the local medical library. One paragraph! In Ukraine, I am almost the only source of information about the syndrome – our doctor became so interested in this disease that she even asked me to speak to medical students and show them Kira ” mother Olya says.

Suddenly, Kira begins to choke, she frightenedly looks into her mother’s eyes. Mother Olya takes her in her arms and in a calm voice, without taking her eyes off, says to the baby: “Everything is fine, breathe, like this. Everything is fine, Kiriusha, breathe, breathe…”. And the sudden attack passes quickly.

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Mother Olya continues to speak slowly, either becoming serious or diluting her story with something vital and ironic. But there is something that makes her heart shrink and that she doesn’t want to think about at all. “The worst thing for me is to see that Kira’s development has stopped. I’m afraid that the moment will come when antiepileptic drugs will stop working and another epileptic attack will occur, and then – a halt in development or even a rollback. The first time Kira stopped developing at 5 months. I was terrified. At that time, she should have already tried to roll over, get on all fours, and she – the next six months without any changes. I constantly had disturbing thoughts: that’s it – this is our ceiling. Then rehabilitation, stimulation, drugs … and slowly the development began. From time to time these stops occur, and each time I worry about it – will further development continue or not? And at this terrible moment, you have to somehow support yourself so as not to fall into despair.

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At such moments, waves of impotence roll in, and mother Olya wants to cry. But this is rather atavism, since she forgot how to cry a long time ago. Mother Olya is strong – she has decided a long time ago, no matter what happens – to go to the end.

When you talk to her, you are involuntarily charged with her positive energy. “I am an incorrigible optimist. If you ask me what I would like to change in my life, I will answer “nothing”. I stopped asking myself “why?” and learned to live for today, calmly do everything in my power. We would not have made such progress in treatment if ordinary people, relatives, and my friends had not helped us. I am very grateful to them”.

It is impossible not to believe mother Olya when she says in a calm, trustworthy voice: “I will put Kiriusha on her feet, by her adulthood she will be a full-fledged member of society, someday she will be able to create her own family and have children”.

Kira fell asleep in her mother’s arms. The little ballerina got tired. Mother Olya puts her to bed, looks with tenderness and love, takes her favorite toy and puts it next to her: “Everything will be fine. We can do this!” – like a prayer, whispers barely audible.

Black and white photo

Friends, if you want to financially support your mother Olya and Kira, they will be safe for you.

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