Benti’s disease brought us closer

leoni: “On average, everyone is up around half past six, except for the oldest, who fortunately can sleep longer. In the past half-year, seven people have already been busy with repair work or painting in the basement.”

Mikhail: “That’s nice for our girls, they can enjoy themselves very well. This actually happens every day. On the weekend they can watch a movie when they wake up, but not during the week.”

leoni: “At about 7.30, we all have breakfast with oatmeal, yogurt, and granola. I really love that comforting mess.”

Mikhail: “Around 8:15 one of us leaves the house with three kids on the cargo bike, and they have to go to three different locations. Fortunately, the schools are not too far from each other.”

leoni: “We start work at nine o’clock.”

Mikhail: “Usually one works in the house and one in the office. We have an extra study on the second floor. If the babysitter is at home with the youngest, you can’t work quietly at the kitchen table.”

leoni: „I’m cycling to the office in south Amsterdam in fifteen minutes. That’s why we moved to Amstelveen. On the weekends we can do all the cultural things in Amsterdam and eat with friends in the city, but during the week we feel calm in the ‘suburb’. “

Mikhail: “At the end of the day, one of us takes the eldest from BSO and the other relaxes the nanny at home with Bente and Clemy. We don’t have fixed days, one of us at the shelter about half past five. Whoever gets home starts cooking first. At 6:15 we eat and at 7 it’s Children in the bathroom.”

leoni: “That’s right: the later you get home and start the evening ritual, the less the kids cooperate. I’ve learned, especially from Benti, that it’s important not to feel pressured yourself. Once they feel upset, they will work against it.”

Incurable disease

Mikhail: “A girl, among us, has tuberous sclerosis, an incurable disease. She started having an epileptic seizure in nursery when she was about one year old. She was examined by a neurologist and blood tests showed she had a genetic abnormality.”

leoni: “Her body makes cells build up in organs. There are already benign tumors in the kidneys, heart and brain – the latter also causes epilepsy. For two years we slept very little and we transferred a girl from one hospital to another. In terms of development, she is fine, but she suffers a little of all symptoms associated with this condition.

Mikhail: “Epilepsy can be very well eliminated with medication, but benign tumors can get bigger and smaller, and we have to watch that carefully.”

leoniFortunately, it has no effect on her life expectancy. Benti is a very funny girl but she is very sensitive and school is very difficult for her. She’s a bit socially backward and she’s a totally busy kid, but we’re not too concerned with her condition. She started in October at a private elementary school with smaller classes and more guidance. We wanted to put off BSO for a while, so we started with an in-house nanny. We were hesitant to go for a third.”

Mikhail: “As for the dynamics, our third daughter is very cute.”

leoni: “In the end it goes well.”

Mikhail: “The two biggest moms around Clyme and sometimes they’re a bit wild so you have to act like a police officer.”

leoni: “Bennett’s status has completely changed us as individuals and as a family. We’ve gotten much closer, all the cliches are true. Don’t worry about the little things anymore.”

Mikhail: “I used to think that choosing school and work was important. I learned to let go of all expectations I had on my children.”

leoni: “We engaged a family coach and consulted educational help books to ensure survival of family life with three children, including one anxious.”

Mikhail: “For example, we discussed how to make sure others feel heard, too.”

leoni: “When Mia is upset, we try to really pay attention to her and not say ‘You’re the biggest, don’t whistle.’ Her feelings might be there, too.”

Mikhail: “Now we’re making sure that one reads the oldest and the other reads the middle, so that everyone else gets his attention.”

monkey cage

leoni: “We often put the kids to bed just the two of us. If Michelle wasn’t around, it would be a monkey cage. I’ll let all of this happen, as long as it’s fun. You’re more than the structure.”

Mikhail: “This is necessary to have some time to yourself after rush hour.”

leoni: „At home we make the family happy Equally† I might work less but then pick up some extra stuff like organizing play dates and kids’ parties, but it’s just like my home.”

Mikhail: “About eight in the morning we’re sitting downstairs and watching the news, or we open our laptop.”

leoni: “Maybe you do sports three times a week. I do Pilates and I started taking piano lessons.”

Mikhail: „I have tennis lessons on Tuesday morning. Then I start working out a little later, but I have a great day because I exercised in the morning. Sometimes I go for a run during lunch. You just have to keep fit with work, three kids, and a social life.”

In Rush Hour, he tells couples and singles how to combine work and private life. to share? Send a mail to werk@nrc.nl

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