She is nine. But when you start talking with her, it feels like there is a quite a mature girl in front of you. Ksenia Gvozdyak is striking at a glance, because she is very wise. Perhaps, because she has had to struggle a lot. To fight a rare bone-muscular system disease – arthrogryposis, which does not allow her to walk. Her mother, Oleksandra Gvozdyak, tells about the struggle of a little girl from Lviv, the struggle which began even before her birth.
– Mrs. Olexandra, first of all, tell us when you found out that Ksenia has arthrogryposis?
– I gave birth to my children – my twins Ksenia and Danylo, when I was 33 years old. My pregnancy, which turned out to be a difficult one, was preceded by a very long treatment. The doctors even said that there’s no need to carry this pregnancy to full term. But because it was my first and very desirable pregnancy, of course I was all for keeping it. In my fifth month, the doctors told me that one of the twins had physical problems, and according to the ultrasound it looked like arthrogryposis. Then I was sent to Kyiv and there I had a thorough examination. Doctors prepared us for the fact that all Ksenia’s internal organs will be affected. Because this disease is not yet properly studied, the doctors didn’t know very well how to treat it. They told me the disease developed due to the commencement of oligohydramnios, and the child was trapped. As I was explained, when the fetus was developing, she had no growth space. Then the doctors started amnioinfusion and IVs, thinking that the child will have more space this way. As a result, the amount of amniotic fluid was increased, but not with Kseniya, but Danylo. In my sixth month of pregnancy, it was advised that I undergo a partial-birth abortion of one fetus, doctors call it “intrauterine cranial decompression”, when they put a catheter in the foetus’ s cranium and aspirate the brain, the skull collapses and the foetus is then taken out. I refused. I could not do this. And in my eighth month of pregnancy I was completely prepared for the fact, that I will have such a child.
I don’t know why, but even when I had no children, I kept hearing a lot about the rehabilitation center “Dzherelo”, and I have chanced upon children with special needs very often. And, perhaps, internally, on a subconscious level, I felt that if I have this child, I will be able to accept it. So I was not in a fell mood, like when one just wouldn’t want to live. I had a goal, a lot that needed to be done.
– What was Ksenia’s state of health after her birth? And what has been achieved over the years in the physical development of the child?
– The doctors told me once that the child would not be able to sit up, talk, control the urination, and so on. The said she will be more like a sapling than an infant. Today we have a somewhat different result. We’ve consulted different Lviv doctors. Everyone just threw their hands up in the air. The neurologists were telling me that it’s not their problem, because it is an orthopedic disease, orthopedists were saying, “Why should we take care, as specialists, of the kid that can not feel own legs at all?” Up to three years old, had one ridden a tractor over her legs, she wouldn’t have felt anything. Then she began gaining some feeling from the top her groin down, and then she began to get a feeling in her hips. Since Ksenia’s birth, none of her legs nor arm joints had any mobility. Her right hand was more adapted to the movement and the left was generally curled up behind her back. Now Ksenia can sit, crawl, she can feel her legs. She draws, colors, writes – of course all of that is difficult, but with the help of an assistant, for example, or with me at the house, she can write. All that Ksenia is capable of now, became possible due to the fact that she always worked independently. I can say that 98 percent of it is her own work, not mine. I believe that when a child has a desire to do something, you ought not to limit her. When Ksenia was about a year old, she had been attempting to sit up on her own, and I was only trying to support her a little bit. I was told by everyone: “Don’t do that! You may not do this and that!”. When Ksenia was three years old, she could already more or less sit independently. Everybody around us was telling me to prop her up with pillows to create ideal conditions for her, I never did it. She was falling, she was crawling. First, crawling was very hard, she would lay down on her stomach and try to help herself up with her hands. Then she began kneeling. Knowing what those doctors told us – that all of that would never be possible, then what Ksenia manages to do today is already a great achievement for me.
Up till now we haven’t been taking any medication. In fact, it was only the physical work. It was her ardent desire. I was really more like an observer. When we went to Kharkiv Institute of Pathology of the Spine and Joints named after Professor Sitenko. They took my child in and outlined a more realistic plan of action. In Kharkiv the specialists told us that my kid has a lot of perspectives, we just need to work with her and undergo surgeries. The first one was done simultaneously on both legs, on the ankle joints proper. After this surgery, we could at least start putting some shoes on Ksenia’s feet, because before this it was impossible to find any kind of shoes that would fit her feet. In Kharkiv specialist are constantly watching over her. Now they said that we are to do a surgery on the knee and hip joints.
– What about Danylo’s health after birth, was everything well?
– With Danylo we had even more problems than with Ksenia. Due to the fact that during pregnancy I did the amnioinfusion, there was too much fluid in his amniotic sack, then after the birth the doctors had to drain the water from his lungs, bronchi, he could not breathe on his own. Ksenia herself took her first breath right upon being born, and he’s been on mechanical ventilation for 2 weeks. At first, we were told that Xenia would have problems with internal organs, = but it was Danylo who had been diagnosed with heart disease,the secondary atrial septal defect. Three years ago he had his surgery. After surgery Danylo got a disabled person status. A year ago he had this status removed. And now he is completely healthy.
– How did you prepare Ksenia for school? And how is she studying?
– When Ksenia was three years old, we started going to the educational and rehabilitation center “Dzherelo” and had been going there for five years. I can’t even express how glad I am that we went, because there was a lot of intercommunication. Before, I didn’t know what to do in this situation. Really, parents with such children mostly stay at home. It seems to me that had she stayed at home, she would not have become the person she is now. And in the “Dzherelo”, among those people, those children, she started feeling differently, she started striving for something. Because over there she had a different life. Of course, to some mothering equals smothering, but I believe that a child should be among its peers. I don’t know how Ksenia would have behaved where she taken from home straight away “transferred” to school. And post – “Dzherelo”, she adapted to the school life with ease, she finds common language with other children, so there are no communication problems. She attends regular school, together with Danylo. But Danylo has already completed the second grade, and Ksenia – the first. She went to school being already eight and a half years old, because of the surgery in Kharkiv.
Ksenia has a perfect attendance record. Although we do have some “perks”: during the schoolday Ksenia is allowed to be exempt from certain lessons in order to have a break, the child may rest during the lesson too, so she be not overburdened by it. But we absolutely don’t go with this, because Ksenia is strong enough to attend all the classes, and secondly, I don’t want to be too soft on her. For example, if in the future Ksenia will have to undergo some sort of long-term treatment, then, of course, she might start lagging behind her classmates in school. We are not going for the Cinderella effect, I just believe that each child, regardless of their physical condition, must be studying at school for their own personal development.
– And is there a school aide for Ksenia?
– A trained assistant – a teacher helping her, sits by with Ksenia at each lesson. For example, she manually helps Ksenia write. And I transport Ksenia to school using our usual small stroller, then carry her to the second floor and put her in a wheelchair, which she uses during lessons. She is able to drive up to the board, she can manage it independently. Danylo’s class is on the same floor, and he visits her often, or then she makes an effort to go and see him. I always come in after the first lesson – there’s a lunch break and I bring Ksenia something to eat, I also sit down with her, we talk. At school, the only problem we have is with the lavatories. So I come again after the third break when she needs to go to the toilet. After lessons I take her home. When the school year started, during the first month I was by Ksenia’s side at all times. But she flatly refused my presence, repeatedly. She said she didn’t feel right with her mother next to her, since she couldn’t express herself freely. She constantly says that she has to be independent. Therefore, the need for my presence at the school simply “disappeared”. Ksenia wants to be among people and wants to impress others. She has a desire to make people like her. And that is what drives her. Classmates, their parents, teachers all treat Ksenia very well. I was not even hoping for that, because I was a little frightened. But we are not faced with negative attitude at the school.
Additionally, Ksenia has been studying English for three years now. When she had a long – term rehabilitation and I was unable to take her to her English lesson, she studied with the tutor on the phone.
– If you need to come to Ksenia’s aid during the day, how are you able to hold down a job?
– I do not have a job. Additionally, I am divorced, so today the entire financial load is on my mother, who took this burden on six years ago. We receive a pension for Ksenia, from time to time I have to apply for financial help from the State, because the father of the children isn’t paying the child support. We do not have any patrons. Sadly, recently my mom has had a car accident, so I will have to find a job and start working again. But then the need to home-school Ksenia may arise. She is strongly against it, she can not imagine me keeping her at home. The problem is that we don’t have any other relatives, my kids have only me and my mother, their grandmother.
– In taking care of your daughter ,what things are the most demanding?
– It is difficult to bathe her and to take her across town or basically any long distance transport. There were cases when just at our approaching the bus or trolley bus doors ,the driver simply closed them in our faces. Aboard, it’s not much easier, because now Ksenia weighs 25 kilos, and of course the wheelchair is heavy. People help, mostly women or young people. Journeying by train is also very problematic. When we have to travel to Kharkiv, it is virtually impossible to buy a ticket for the bottom bunk. I addressed the railway authorities, but it seems no one there can solve this problem. The time I came to the railway station with Ksenia’s ID- card, one of the managers told me: “You want to travel – get the upper bunk ,and if it doesn’t suit you, it is not my problem”. Once, when we were returning from Kharkiv, with tickets for the upper bunk, one boy told me that he is ready to switch places with us, additional charge provided. However, in Lviv he gave me those money back.
There are difficulties everywhere, but I think that this does not deter us. So we and Ksenia travel and go wherever we please. If Ksenia wants to go to the Opera Theater, we go there; she wants the Philharmonics- we go to the Philharmonics, and if it is the circus, then we’re going to the circus. If I have to get both Ksenia and the wheelchair up to the fifth floor, then I ‘ll manage it somehow. The worst for me actually would be my child stuck at home all the time. Because such children can’t just be locked up on the Nth floor seeing the world out of the window, they have to communicate with others and socialize.
– How do people from your circle of communication react to Ksenia’s condition?
We heard a lot of quite unpleasant things from them. For example, some acquaintances visiting us asking: “So, what? Is she still not walking?”, and I would say “No, not yet.” ,then them saying “Oh, you poor thing, having to drag her around with you all the time. Oh, see, you were told to get rid of that baby. You should have done so! Why would you need those trials and tribulations?”. Even with Ksenia present, older people allow themselves these judgmental “opinions”! With my child hearing and comprehending everything!
One day an acquaintance of mine told me: “Oh, God, what an affliction! How great is your toil and torment!” I told her: “Perhaps, your own grandchildren are your toil and torment. And my children are nothing like that to me”. That is, these children of mine are my joy, my good fortune, my life, after all. With them I feel really blessed. To my friends it seems I’ve become a new, different person. Until I had my children, I never liked kids. Before, when I used public transport while going to work, I used to get off the bus when any child started wailing, kids irritated me so much. My own children do not vex me, and now neither do other people’s young. I am very pleased that I’ve got my children. And I do regret that I have not considered giving birth when I was younger.
– How does Danylo communicate with his sister? Is he helping her?
– If not for Danylo, It would have been that much harder for me. I absolutely can safely leave them home alone. When I am home, they might get into a brief skirmish, quarrel or refuse to share things, and so it is my duty to act as a judge-cum-peacemaker and put them in different rooms. If I am not home, he is such a nanny for Ksenia. Although, I am a bit worried, because at nine years old, it’s time for him to go out see his friends for a bit. Danylo feels as if he is duty-bound before Ksenia or, perhaps, there’s a degree of guilt. When his friends call on him to come out and play, he always leaves for 15-20 minutes and then returns home saying “I’ll stay with Ksenia”. He is very responsible, especially in respect to Ksenia. He’s a big help to Ksenia, he brings her the chamber-pot sometimes. When she is hungry or thirsty, he will bring drink or food. If she wants to draw, Danylo completely organizes the whole process. He knows how to correctly arrange her cushion, how to put her legs in the correct position, if she isn’t able to do that on her own. He is my second pair of hands.
At times Danylo tells me: “Mom, I’m so sorry… If only she could walk!”. In all probability, he played a very important role in her ability to crawl, to reach out for things. Because he’s walking, he constantly wants to do things, and she is always trying to match him.
– How does Ksenia see her illness?
– We had some very difficult times when Xenia was four or five years old. When we went out for walks and I took her out in the stroller, sometimes people stopped to stare at her. And Ksenia would say, “I don’t want to go out, they’d be all gaping at me ”. Now, if someone’s gawking at her, she can even say to that person in a boorish way: “What’re you staring at? Am I a living flover arrangement?” (laughs). Or she may say, “Do you see pineapples growing on me now, or what?” She believes that her illness is both not normal and normal at the same time. And Ksenia always says to me, “Mom, perhaps God has other plans in store for me”. I’m also trying to alleviate my heavy thoughts with this notion.
Ksenia has a lot of friends. She finds it easier to communicate with the elderly, with adults. She calls them on the phone, on Skype, and they call her too. And she should talk to everyone. If you listen to her speaking, you will get the impression that there’s nothing wrong with her. For example, for me this is a bit odd. I can’t say that Ksenia has an inferiority complex due to her illness. I would even say that today she feels good in that condition, but I don’t know how it will be later on. Probably the teenage years would be the most difficult for her.
– Mrs. Olexandra , what helps you most of all, what lends you strength and hope?
– My children. My children are my source of inspiration. I know that, apart from me, there is no one to support them, I know that I belong by their side. Perhaps, children are something I was looking for all my life and this I am very happy that I finally found. I think I do have a good life.
I can say that I have never regretted that I hadn’t done what I was offered to. And I only worry that Ksenia might one day tell me “Why hadn’t you done it, when you should have had?” All of my worries concern her, not me. And If I only I were a decade younger, I could have given her more. Or physically helped her more. We have no guarantee that Ksenia will one day walk, no one ever gave us any promises, but at least we are encouraged by them, we have a big hope for this. Of course, this will not be a full- fledged kind of walk, but it is important that Ksenia were able to do everyday tasks independently.
One woman, whose daughter is also ill, told me that her friends came to her child’s birthday and told this woman: “Oh, what did God punish you like that for ?”. And the woman responded: “Why must it be a punishment? Maybe it’s my salvation?” And I think the same way.
P. S. From year 2013 Ksenia is engaged in physical therapy at “Innovo”.
Spoke: Irina Kondratyuk
Photo: from the archive of the Hvozdyak Family