Maria: ‘We love our daughter and

we’ll keep fighting until the end.’

 

Maria and Paul have two sons and one daughter. Marlie suffers from the Vici Variant Syndrome and has multiple disabilities. The life expectancy of children with this syndrome is low. Read part one here.

 

When Maria and Paul learn their youngest child suffers from Vici Variant Syndrome, they don’t get much time to process the news. They have to answer the hospital’s questions. Ethical questions about life and death. If Marlie ends up in hospital with a life-threatening condition, what kind of treatment would the parents want? ‘It’s very hard,’ tells Maria. ‘Cruel. Marlie is our flesh and blood. We love her and we’ll keep fighting for her until the end. But we have to be realistic. You can’t imagine somebody asking such questions when your child is healthy. But in Marlie’s case those questions were asked.’

 

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‘We had to answer immediately. It couldn’t wait. Her health was very poor. At any moment something could happen which would cause her to end up in hospital, in critical condition. Now we have on paper that if needed, everything has to be done to safe her life. Thankfully Marlie still fully enjoys this life, it’s a very sweet girl. Who are we to decide about her life?’

 

 

 

‘And after you’ve received the devastating news? You go home and you have to carry on,’ says Maria with a sigh. ‘The most difficult thing is this: from that day onwards the future is gone. Everything has changed. I have had to learn many new things. That’s something you don’t want at all, but you have to. It hurts when I see children of her age. They walk and ride their bicycles. When I look at Marlie, I miss seeing that development,’ tells Maria. ‘In a way she’ll stay a baby with the development of a three or four month old. Only her body grows.’

 

 

 

‘It takes a lot of time and energy to deal with it emotionally. We have kept all baby things – they’re at our attic. I still can’t get myself to sort them out. But with each pregnancy we have a 25 percent chance of a baby with the same syndrome as Marlie has. That makes it so hard. I can’t comprehend it. My mind says one thing, my heart the other. If I would be certain we would get a healthy baby, the choice would be easy. Now we worry. We also are responsible for our two boys.’

 

 

 

‘Sometimes it feels as a burden that we know so much nowadays. At the other hand I’m realistic and very happy with medical progress. The children are OK with the idea of another baby. Some time ago my son said it was time for a new baby, because it’s 2016. They were born in 2007, 2010 and 2013. I asked if he wouldn’t mind getting another brother or sister like Marlie. ‘Not at all,’ he said. That touched me. Children accept the situation as it is. They don’t ask why Marlie can’t do some things. We can learn something from that. They enjoy each other’s company. Often the boys lay down next to her in the playpen.’

 

kinderen

Picture: Luuk Schudde 

Sadness and joy close together. It’s fragile and we feel helpless. Especially after rude comments from outsiders. ‘How can you be happy with her?’ somebody asks Maria. As if it wouldn’t be possible to love a handicapped child. Then suddenly she smiles. ‘People always compliment me with the nice clothes she wears and how pretty she is. That’s in the hospital records and that makes me feel good. She always looks very nice, but when she has to go to the hospital for tests I pick beautiful clothes and spend extra time on her hair. When we’re in the hospital in Sneek, they all come to her small room to have a peek. To see how beautiful she looks.’

 

 

 

Another rude question: ‘Have you had an ultrasound scan at 20 weeks?’ The answer is no. ‘Early on in the pregnancy I already got many scans at the GP’s office, because of my high blood pressure.’ Because Maria didn’t want to know the sex of the baby, the 20-week scan didn’t seem necessary. ‘Luckily the GP never noticed any anomalies,’ says Maria relieved. ‘I wouldn’t have wanted to know. Then I wouldn’t have been able to enjoy my pregnancy. Now I did.’

 

Dutch text: Alice ten Napel. Picture: Maria Feenstra.

Translation into English: Daniëlle van Westen.

 

Next time in part 3: Everything changes after the diagnosis. Family Feenstra even has to move to get a house with a bedroom and bathroom downstairs.