Seven years ago, Eugene Hoyte never gave much thought to the plight of people with disabilities. In fact, he had never even had close contact with any.
Since the birth of his son Krishon Harris, who turns eight in September, Eugene has come to fully understand the struggle of caring for a disabled person as well as the challenges people with physical or mental disabilities face.
He admits readily that the old time adage, “walk a mile in my shoes . . . until then do not judge me” is as true mondayas true can be.
Krishon suffers from hydrocephalus, a condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.
“I came home one evening and I told his mother, ‘He head getting very big’ and she said not. When we took him to the doctor, tests revealed he had fluid on his brain,” Eugene said.
Before Krishon was eight months old, he had to undergo several surgical operations, including the placement of a shunt to reduce the swelling.
He has partial vision in the left eye, suffers seizures, cannot speak, has collapsible legs and is wheelchair-bound.
“He can call some words. Sometimes the words would come out plain as day, like one time he said ‘Eugene’ and I could not believe it,” his father said.
Krishon’s health concerns meant that his mother Hetty had to give up her job to care for him, leaving Eugene as the sole breadwinner.
“Any morning I wake up and do not feel like going to work, I get up and go because I have to do what it takes to make sure he is all set,” said Eugene, who works at Courtesy Garage in the tyre repair department.
Most mornings he is out of the door at 5 o’clock and some nights when Krishon is awake, dad would make him tea, and lie down with him until he is ready to go back to sleep.
When Krishon is hospitalised, Eugene also takes on night duty, spending many nights at the Queen Elizabeth Hospital.
“I would come to work on mornings, leave work and go straight to the hospital and spend the night with him.”
Nonetheless, Eugene says Krishon is his “joy”.
“On Sunday, once daddy is home, we are in the bedroom and we spend the day together and he does not want anyone in the bedroom with us. If his mother comes in he gets a tantrum and says, ‘Out! out!’
“One Sunday I was helping his mother in the kitchen and he was upset, so when I got around to him he would not take me on. I had to play with him to get him back in the right mood.”
Eugene noted that even with a disability, his son is very perceptive and emotional, and knows who and what he wants at a given time.
The sound of his father’s voice can help calm an upset Krishon, but he loves when his mother feeds him. That is something Eugene cannot do if his mother is around.
“If you are going to do anything to Krishon, you have to tell him first because since he cannot see it, it will scare him, so you have to let him know what you are doing.”
Eugene recounted an experience.
“A strange thing happened where one evening I told the boss I wanted to leave work early and when I got to the hospital, Krishon was crying and kicking up a fuss and would not let the doctor do anything to him. I had to say, ‘Krishon this is good for you, calm down’ and he was settled after that,” Eugene said.
The proud and committed dad said people who see him and who know of Krishon always commend him for his dedication.
“People often remark how strong I am as a father since when a man has a child with a disability, they just shift and leave the situation.
“I have to say he is loved just as much as any of my other children; he just needs a bit more care.”
He admits that since Krishon came into his life he has had to adjust, but it was more an opening up of his eyes.
“My life has not really changed; it just made me look at life a bit different. To understand a disability, the shoe has to be on the other foot.”
The extra care and attention Krishon needs is not too much for Eugene to offer. He works hard to provide financially and, luckily, Krishon does not have a special or strict diet to adhere to, even though he loves eggs but would not drink water.
However, making sure Krishon does not get sick is a priority.
“If there is a cold or any sickness going around, Krishon will catch it. He cannot fight off things the way other children would. Because he is not moving around and cannot walk, his immune system is not as strong, but other than that he is a fighter,” Eugene said.
He said they had to be careful around him.
“I work with tyres so when I go home on evenings, before I even touch him, I make sure I take a bath first.”
Eugene said that being a member of the Barbados Organisation of Parents of the Disabled (BOPOD) has helped him tremendously in terms of making that adjustment.
The association has assisted with transportation for doctor visits, hampers and foodstuff, but its main role is lending moral and educational support.
He said the association was not doing too well in terms of membership, though.
“A lot of people who have children with disabilities, they do not feel that they should come out and join the society, but the group helps because you can hear people share their stories of how they went through it,” Eugene said.
He noted too that in general, people these days were more accepting of people with disabilities compared to years ago when disabled children were hidden in the home.
“When I go out with Krishon, people want to ‘carry him away’. He is a sweet child and everybody that sees Krishon, they like him and gravitate toward him,” Eugene said.
In 2013, they did a family cruise, taking Krishon to St Kitts, St Lucia and St Maarten, and plan to do another soon. Eugene said he recognised that Hetty had to be taking care of Krishon daily and it could be tiring, so he wanted to give her that time off.
