‘I know better than anyone that you can be very happy even with limitations’
Image: Nine IJf
Simone Marsé (40) is engaged to Yves (41). He has a daughter (13) and a son (11) from a previous relationship and together they have two daughters: Zoë (7) and Billie (3). Simone has Usher syndrome, where you slowly become blind and deaf.
“I was born deaf and when it turned out that I had poor eyesight at the age of six, I was diagnosed with Usher. It’s a progressive disease. So my vision – like looking through a straw – gradually deteriorates. I have been using a guide stick for a number of years and I pick up less and less things in my environment. Unfortunately, working is no longer possible, because that takes too much energy in combination with my family. So I take care of my daughters full time.
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Usher Mother
When I was a teenager I doubted whether I wanted children. Could I handle that? But as I got older and met other Usher moms who were doing just fine, I thought, I should be able to do it too. Of course it is a challenge, especially with two children. On the street I lose my eyes and I explain to the girls that they must come when I call, but they are still children – nothing is more fun than playing hide and seek. One time I lost Billie in the supermarket and asked an employee for help. Just in time, because she had already walked to the exit to look for raisins.
“Going to Efteling alone with my daughters felt like a victory”
Still, that’s not a reason to stay at home — it can happen to any parent. I don’t let my limitations stop me. I don’t want to deprive my daughters and myself of the fun of an outing. The three of us even go to Efteling. Admittedly: the first time it felt like a victory, but now I don’t turn my hand around for it anymore. It does, however, require some preparation. I always have my guide stick with me, an SOS bracelet for the girls and we make clear agreements. They really have to stay with me and tap me if I lose sight of them for a while.
Zoë often stops Billie when Billie threatens to run off. I never asked her that and I explain to her that it is my responsibility, but it just comes naturally. She understands well that I don’t hear and see everything, although it sometimes frustrates her that I can’t always understand her.
No research
Usher is hereditary. While I’m naturally very happy that our daughters were born hearing and seeing just fine, I’ve never really worried about that. After their birth, I also consciously chose not to have them examined. for what? I know better than anyone that you can be very happy even with limitations.”
This article appears in Kek Mama 11-2022.
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