‘Sometimes I’m on the phone

all morning, to get a referral.’

 

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 lowRead part 1, part 2 and part 3 here.

 

Maria lists what caring for Marlie, her daughter with Vici Variant Syndrome, entails. ‘In the morning I have to start the feeding process, through a tube, which takes an hour. We do that five times a day. Then I prepare her medication. Two drinks for her epilepsy, one drink to make it easier for her to cough, one laxative and three times a week she gets antibiotics. I can give that to her myself via a special catheter. That’s wonderful. To make it easier for her to cough, I have to give her steam-treatment for ten minutes, twice a day. When she has a cold or when she’s sick, that can get up to six times a day.’

 

marlie-met-sonde

 

‘In fact I’m busy feeding her and giving her medication all day long.

I have to order her food and medication.’ She chuckles. ‘One advantage: they know me very well at the pharmacy. I don’t have to tell them my name anymore. Between everything else I take care of the house. That’s fine. Even though Marlie keeps the washing machine spinning… sometime I’ve just finished doing all the laundry, and she throws up again.’

 

‘Since Marlie’s birth I worry all day long.

Everything seems to be a struggle. For example: when she’s ill, she needs antibiotics immediately, otherwise she’ll get very ill quickly. When I get a different GP during evening hours or during the weekend, I have to explain again what’s wrong with her. Something it feels like I’m nagging. And sometimes I’m angry. Then everything gets to me and I draw wrong conclusions quickly.’ 

 

 

 

‘Caring for Marlie takes a lot out of me and it never stops.

At night I’m exhausted. In bed I think: ‘I’m glad this day is over.’ Some time ago we were on holiday with family. Only then family members realized I’m busy caring for her all day long. I’m glad we started with day care two days a week recently. On Monday afternoon I go swimming with her.’

 

‘When the weather is good, we like going outside together.

To enjoy the sunshine. Marlie really likes that. We get some fresh air. Recently we got an adjusted bike. Thankfully nowadays the medical aids look good, they look normal. When we have time, we cycle to the harbor, or through the fields. It enables me to clear my mind and enjoy the small things in life.’

 

marlie

It’s not only the care-giving that makes it heavy.

When Maria requests medical aids, she encounters a lot of bureaucracy. ‘Sometimes I’m on the phone all morning to get a referral. Don’t get me wrong, we’re very thankful that the healthcare in the Netherlands is so good. Unfortunately you only discover that when you have to rely on it. It’s fantastic that all those medical aids are available. But it’s difficult you still have to fight for it. You have to keep explaining what her limitations are. As if you would apply for medical aids for fun. Well, no. I don’t want an adjusted bike for my child. I want her to be healthy. But I don’t have a choice.’

 

A few months ago Maria went through a difficult time.

‘Since 2015 our town doesn’t have funds for adjusted busses any more,’ she tells. ‘Incomprehensible. Nowadays every pregnant woman gets the 20-weeks scan for free, and abortion rates rise when the child is handicapped. These vulnerable children are not welcome in our perfect society. Get rid of them! No adjustments anymore. The citizens have to take care of it themselves and are left alone. There is no room for adjustments in a perfect society. That how it felt for me.’

 

 

 

When Maria couldn’t get help from institutions run by the local government, she was advised to contact local politicians.

So she placed an emotional appeal on her Facebook page. That was shared hundreds of times. ‘Politicians, why have you made this decision? Is this the beginning of the end?’ she asks fervently. ‘Will it be impossible to raise these children in the future? They belong to us and they have the right to live. They are created in Gods image! And on this earth nobody ever will be perfect! I’m looking forward to a response from politicians. Because I don’t think I’m the only concerned mother…’

 

‘It hasn’t resulted in anything tangible,’ tells Maria.

‘But I had to defend Marlie, because nobody else does it. I have to go on and I will do exactly that. Thankfully I enjoy being with her very much, too. Sometimes I wonder what it must be like for Marlie not to be able to do anything on her own and always have to depend on others. Does she hate it? She can’t tell us herself. But Marlie is a content little girl. Most of the time she looks very happy. And we are happy to have her. And we are happy with every day we get to enjoy her. We wouldn’t want to miss it for the world.’

 

2017-08 Dutch text: Alice ten Napel. Pictures: Maria Feenstra.

Translation into English: Daniëlle van Westen.

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