One of the great joys of being a parent is seeing your children grow and succeed, but what if you couldn’t see or hear?
“It’s very important for me to be involved in my children’s lives ... because my son must have his father there and have my support,” he said in an interview with the Epoch Times that he was able to do with his Focus 14 braille display, which helps him communicate through tactile sign language.
“I always try to find solutions, so we can get along. Being a present father is very important to me.”
Svensson has Usher Syndrome, a rare inherited condition that affects both hearing and vision, leading to partial or total hearing loss and vision impairment.
He was diagnosed with Usher Syndrome at the age of 28. Before that he worked as a truck driver, living a “free and good life” on the road. Things changed, however, when the rare condition started to take over, slowly damaging his vision and hearing.
“It changed my whole life, and I had to adapt to a life where I couldn’t be free in the same way,” he said.
Svensson says living a “normal” life is pretty much impossible for him, but that hasn’t stopped him from living a good life. With his two children from a previous relationship and his fiancée and her two children, he continues to make fatherhood his top priority. Naturally, one of his favorite places to support his children is on the soccer field.
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The proud father wrote on his Instagram story: “Participation. This word that for common man may not be something you think of, but if you are outside, that word means everything. For me, being able to participate in Hugo’s matches is priceless. That is why it is so incredibly important that I fight (although it is incredibly difficult at times with all the refusals) to fight for participation.”
Svensson added that it is not just about him, it is about being there for his kids.
To understand what is happening in the soccer match, he has an interpreter tapping him on the back, giving what are called “social haptic signals.” His white cane is also placed on the ground in front of him, so he doesn’t accidentally walk onto the field during the game.
Receiving support from his family and his interpreter has been incredibly important to him, he says.
“When I get the help I need, I am 110 percent,” he said.
Having moments like this with his children keeps him going, despite the challenges.
“My children are [a] big inspiration [to me] to keep on fighting,” he said. “It’s for them and the future that I’m working for. I am very driven to improve life for myself, but also for others with deafblindness because there are so many people who are absolutely amazing but never get the chance because society doesn’t provide the right support.”
