‘My family is my home’, says Slovakian artist and carer of twin boys living with disabilities
Denisa Hrbáňová sees herself first and foremost as a mom. But when she comes home to her studio at night, alone with her thoughts, and the lingering scent of paint, turps and plaster, she inhabits a new role. Here, smeared in paint, is a time she can call her own — to indulge her creativity and be an artist.
Denisa’s interest in art dates back to when she was a child. Throughout her teenage years, her only ambition was to become an artist. She applied for a place to study art at Slovakia’s Bratislava university, but due to health concerns, she missed the entrance exam. After a difficult year with a series of health setbacks that kept her confined to her bed, she started to pull her life back together. She got accepted to a different school and later founded a family business with her mother and brother selling clothes. She also found love and got married. For Denisa, it appeared that her life was back on track. However, the birth of her twin boys, Maximilian and Alexander, changed everything.
They were born nearly 3 months premature on the 27th week of her pregnancy and diagnosed with polio. Maximilian had only one part of his body affected. Alexander’s disability was much more serious. As well as being only partially sighted, he had severe mental ill health problems.
“I was taking care of my sons 24-hours a day.”
“It was very, very, very difficult. It was the one of the hardest periods of my life, says Denisa. “I was taking care of my sons 24-hours a day and I started to look for some kind of therapy. I was always interested in the arts and I wanted to create something. So I began to paint in the evenings.”
Today, the children are 11 years old. Maximilian is attending a regular school and gaining independence, but Alexander is still confined to his wheelchair.
“I soak his hands into the paints so he can feel and touch it.”
“I try to lead the boys to this therapy with art as well,” she explains. “Maximilian sometimes paints with me or he makes his own statuettes. Alexander’s condition doesn’t allow him to do something like that so at least I soak his hands into paints so he can feel or touch it.”
Denisa believes that art has a therapeutic quality. She describes herself as a “healthy person” but adds that unfortunate events “launched an anxiety and I just desperately needed to get rid of it.”
Denisa is very active and besides painting she makes statuettes, jewellery from recycled materials and even designs interiors for her family and friends. She says she cannot restrict herself to any one activity and feels the different disciplines feed off each other.
“I am a carer though I did not choose this career.”
Denisa mostly gives her artwork away for free, but sometimes she sells it to complement her income to help pay for expensive medical treatment for the boys.
“I am a carer even though I did not choose this career,” she says with a sense of resignation. “The government sends me 240 euro a month which is not even a living wage. I would like to do something different but I cannot afford to have a professional carer. However, I would never put them, not even one of them, in an institute. They are my kids. It is very difficult but when Alex smiles at me I know it is all worth it. He feels better and safer at home.”
Nevertheless, the family of four tries to live a full life. Whenever possible they enjoy a family holiday together and even recently moved abroad to neighbouring Austria.
“This is our home now but I do not mind moving somewhere else where my family will be happy and content,” she says.
Whether in Austria, Slovakia or anywhere else — and despite the huge emotional and physical drain of raising twin boys with disabilities, Denisa is adamant that the only place she can truly call home is the company of her boys and husband.
Denisa is a carer of 10-year-old twins boys Maximilian and Alexander who were diagnosed with polio at birth. She studied to become an interior designer during her maternity leave and now mostly designs for her family and friends with the little time she has left. Evenings are spent in her art studio where she devotes herself to painting. She recently set up the Náš Palček association dedicated to children with multiple disabilities and her art works can be found at LEDESTA. In November 2017, she will be taking part in EUFAMI’s ‘Home’ exhibition.
Interview carried out by EUFAMI Events and Fundraising intern, Paulina Gono