Evelina openly shares that people often only see from the outside what someone else’s life is like and have no idea what the daily reality truly is. And there is everything in it, but Evelina, despite everything, emphasizes – she is very lucky.
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“I used to share my life before, but the social world is really deceptive. Sometimes people think you live like a princess – I don’t go to work, I drink coffee in the mornings, exercise, walk, travel. Almost a rosy life,” says Evelina. She continues that there are many more colors behind all that.
“My son is already grown, he is 17 years old, so taking care of him is definitely not easy. I have long had the idea to create a video and show what the morning routine is like with a child with a disability, how much effort it takes. Not everyone understands that when a person is dependent, they can’t even blow their nose. You have to take care of everything. One day I did just that. I was shocked by the attention we received! The video spread very quickly, I realized that people find it very interesting,” the woman shared.
She added that her friends and family encouraged her to continue sharing and not to stop. Although Evelina thought children would not interest anyone, it turned out completely the opposite. “Many people wrote to me and supported me. I still receive messages that our daily life really lifts spirits, that the content is interesting, and others wrote that raising children with disabilities and watching the content I create makes them feel calmer and easier. Maybe that is what drives me forward,” said the woman, who on the occasion of her son’s 17th birthday also founded Kristupas’s charity and support fund.
Not everyone understands that when a person is dependent, they can’t even blow their nose.
As Evelina says, he will never be able to take care of his own future, and there are indeed many needs that the family cannot always meet. “We established a support fund for our son so that people could donate their 1.2% or contribute by a simple transfer. With that money, we have already acquired good noise-cancelling headphones and a treadmill for Kris’s sports at home,” Evelina shared.
The first signs – just a few months old
Kristupas’s diagnosis is genetic diseases. As Evelina says – the list is long, including a specific mixed developmental disorder, cerebral palsy, and other disorders, but according to her, many people do not understand the names of diseases and diagnoses.
Everything was fine when the baby was born, but problems appeared when he was three months old. As the woman now recalls, infancy was very difficult because the child cried a lot, but specialists thought it was stomach problems, and it was hard to understand what was wrong. However, when he calmed down after being prescribed medication, Evelina immediately realized that his development was delayed.
“From four months old, we practically lived in the hospital searching for a diagnosis. It turned out that at that time Kristupas’s disease was the only one in Europe. The consequences are that he has physical and intellectual disabilities, cannot walk, although he can walk when led, and has no balance. I noticed that maybe he doesn’t understand words, but visually he perceives the world. For example, he sees a plate, leans to eat, sees a toy – he wants to take it and play,” the woman talks about her son.
She adds that on the other hand, it’s not like her son just lies down; on the contrary – he is active, turns around, rolls over. And his character is strong-willed – Kristupas is stubborn, funny, sometimes very dramatic, but how else – after all, adolescence, but cheerful, smiles a lot, enjoys life, and that is one of Evelina’s missions. As she says, it is precisely those emotions from Kristupas that help her understand what he wants and what he doesn’t.
“I don’t need him to walk or do something very impressive. Other mothers invest a lot and give all their strength, but my goal is for him to be happy and feel comfortable. The fact is that I would like him to be independent, but we rejoice in small things. For example, he can already drink his morning smoothie by himself while holding the bottle. For me, that is already good,” said Evelina.
It is very important to accept help from others
When asked where she draws positivity from, the woman says it is simply a trait of her character. “I probably only now realized that I am positive,” Evelina laughed. “I thought I was just joking and funny. Humor is very important to me, and I can’t imagine looking at the world any other way. I remember it was a shock when they said I would have to arrange disability documents for my son. But I did everything I had to do to make it good for my child,” the woman said.
She shares that she and Kristupas’s father separated when their son was just two, but they both took care of him. At that time, as she says, there was no other choice – she had to choose night groups so she could work and have the strength to take care of herself and the child.
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And his character is strong-willed – Kristupas is stubborn, funny, sometimes very dramatic, but how else – after all, adolescence, but cheerful, smiles a lot, enjoys life.
“I use those services, whatever I could get, because otherwise I would have just gone crazy. Maybe my positivity came from that – I didn’t just lie at home hugging my child. Many mothers were afraid to leave their children, thinking they wouldn’t be cared for, especially when the child cannot speak or tell, so those fears were even greater. But if you go down that path – you will go crazy. You shouldn’t even have the opportunity to go somewhere. The fact is, you have to look for a way out,” Evelina speaks boldly.
Currently, the woman says she lives comfortably, has established a routine, and uses services available to the family – both paid and free. For example, when needed, the children and youth boarding school helps a lot, where Kristupas receives all the necessary care, can stay overnight or on weekends, so Evelina has a chance to catch her breath.
According to the woman, the services provided to her son are sufficient – an occupational therapist, physiotherapist, social worker come, and he also attends the special education center “Šilas,” where specialists work with him all day. “There is help, but as I say – are parents ready to leave their children there? I am very satisfied with the services provided, I communicate with the staff, so I am glad there is such an opportunity for both him and me. Still, my main job is child care – I cannot leave him alone for a minute,” the woman said.
She adds that balancing work and child care is too difficult and would take all her strength, so she chooses a slower pace of life to take care of herself, her physical and psychological health.
“I choose to be physically and psychologically capable so I can continue nursing when Kristupas returns from school, and have time for my hobbies. Having time for yourself is important – that is probably one of the secrets of positivity. I love life very much, love myself, and try to invest in myself. If I didn’t exercise, I would fall apart. I need good physical shape because I have to lift my son and help him; a stable emotional state and rest are also necessary. I raise chickens – that is my meditation,” Evelina smiles.
She adds that she is not alone in all this – her current husband Andrius, whom she calls Kristupas’s father, is one of her biggest helpers today – he bathes Kristupas, feeds him, changes diapers, and is by his side. “We have been together for eight years. I can say I am lucky, but I also looked for a good man; he didn’t just fall from the sky,” the woman laughs and adds that her husband is a very positive and optimistic person, so they support each other in all life challenges and stages.
“I accepted my life as it is. Others resist a lot, constantly ask why this happened to them. I never asked such a question in life; it seems illogical to me – should it have happened to others? There is a situation – you have a child with a disability and you think about how you will live on. You solve things and live. Many things can be solved along the way. We don’t get nervous, don’t overemphasize what is unnecessary, and enjoy the little things. A morning cup of coffee already gives me a lot of joy. Small things help notice that life is very beautiful. I know we are lucky and we live very well,” Evelina said.
Having time for yourself is important – that is probably one of the secrets of positivity. I love life very much, love myself, and try to invest in myself.
She adds that she tries to socialize with Kristupas and the whole family – they go to the city for walks, shopping centers, cafes, sail boats in Trakai, and try to take him to the sea as often as possible because he really likes it there. “We want him to experience as much as possible, not to be kept closed and hidden at home,” said Evelina.
What would be her advice to a mother, father, or friend who is on a similar path? “Don’t forget yourself and be sure to seek help from outside. You cannot live only for the children – you all have to enjoy life equally. Don’t be afraid to ask for and accept the help that belongs to you,” the woman said.
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