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‘I put my sons on the chest by touch’

Image: Nine IJf

Suleima Luciano (30) is together with David (38) and mother of two sons: Sheldon (almost 4) and Darion (2). With both eyes she sees only four percent.

“It sounds complicated, cone-rod dystrophy. Usually I just say I don’t see well. The further away, the trickier the details. This way I can distinguish contours and colors, but don’t ask me about the difference between dark blue and black. My visual impairment is hereditary, but I am the first and only one in my family to have it. Fortunately, my sons see fine; Sheldon recently pointed to a plane that was so far away that my husband had to look three times.

In Curaçao, where I was born and raised, you don’t go to the consultation office for an eye test. It was only when I started reading that I noticed that I kept the books very close. As a teenager I learned Braille. I’m fine with a magnifying glass and the speech function on the computer, but keep up with Braille in case I ever go completely blind. I’m not afraid of that, by the way. My sight has been stable for years and I am someone who lives day by day.

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Reward

In 2015 I climbed Kilimanjaro. I like adventure and challenging myself. The first day I walked, as I am used to, without aids. But I soon realized: a mountain is a different story. There were stones and tree roots everywhere, so I continued in the footsteps of my guide.

“For most people, the reward is the view, but I could barely make out the mountain peaks from the sky. It was the victory, that great feeling.”

The journey up took six days. It was very tough – not seeing where you are going makes it extra spicy – ​​but once at the top: what a reward. For most people, that’s the view, but I could barely make out the mountain peaks from the sky. It was the victory, that great feeling: I did it. The experience has strengthened my perseverance even more. I also want to pass on to my children that you can do more than you think.

Suleima Luciano cone-straight dystrophy

Bears on the road

I never doubted motherhood. That may be the advantage of a limitation: you learn to think in terms of solutions. I put my sons by touch on the chest and shampoo and shower gel I keep apart with braille stickers.

The only trouble is that sometimes others think I can’t make it. “How do you change a diaper?” and “What if your son drops something?” I hear regularly. Usually I politely cut it off by saying I know where to find them if I need help.

“I don’t see everything, but I feel like a mother like anyone else”

Fortunately, not everyone sees bears on the road. I also get compliments that it is great that I take the train alone with the children. Somehow I understand that people see it that way, but at the same time: I don’t know any better. I don’t see everything, but I feel like a mother like anyone else.”

This article appears in Kek Mama 11-2022.

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