"This shouldn't be this hard.“
Aldís with her son, Ragnar Emil who suffers from spinal muscular atrophy in its most severe stage. He needs assistance for each moment of his daily life. Photo/ Facebook
"My biggest and most important role in life is to keep my chidlren alive and safe. And the biggest, most demanding and most difficult task is to keep Ragnar alive. And that's what I literally do, every day of the year, 24 hours a day, to keep him alive."
Sigurðardóttir deals with her role with love and humility but she criticises the system which she finds hard to deal with. She describes having to supply paperwork every year that taking care of Ragnar is actually a full-time job which means that she can't work. "People are quite shocked to hear this," she says in an interview with mbl.is on the response to her post. "People just can't believe that our system is this flawed. But that's how it is."
A life lived in constant fear
In her Facebook post, published last night, Sigurðardóttir goes into detail of what is involved in being the mother of Ragnar. His condition, SMA-1 is so serious that he needs assistance with every single task in his daily life. She says that she lives in the constant fear that her son will leave her. "I love Ragnar more than words can describe. So much that my heart aches every single day. I love being his mum. It's the best thing in the world. But it's so very hard. The fear is the most difficult part. I live in constant fear. That he wil say goodbye to this life."
Sigurðardóttir describes how difficult it is to deal with the system. "I will never understand why things are complicated so much. Why? Why does the mother of such a seriously ill child have to prove that she can't work? A mother that keeps her child in intensive care at home 24 hours a day, every day of the year? A mother of a little 9-year-old boy who has to constantly make excuses and struggle? Just because?"
Told off by health officials
Among the examples she gives is being scolded by health officials for a crack that occurred in one of the many pieces of technical equipment that Ragnar needs, and for forgetting to charge a battery."This shouldn't be this hard. The rest is hard enough. My work is solely on tending to Ragnar's every need."
She cannot hire a nurse because it is considered to be too expensive. Instead, she gets 200 thousand ISK per month from the social insurance administration. Ragnar goes to school 2-3 times a week and she is now asked whether she "can't just go to work now?" and whether she needs that money at all.
Sleep deprived, depressed and anxious mother seeks work
"Is a mother not allowed to breathe a little? My husband works full time and much more to help keep us afloat financially and people also criticise the fact that he works so much. And we are still asked whether we need that 200 thousand kronas from social services each month for my enormous work."
She adds that if social services do intend to stop paying her the parental compensation each month because of her "extraordinarily great free time" she would like to use the opportunity to advertise for employment.
"Seeking work for a sleep deprived, fat, depressed and anxious mother of three who is already working 280%. She can work 2-3 mornings per week for 2 hours at a time. She may have to leave work at any given hour because she's always on duty at her other work. She may also have to get time off whenever her child is sick, which is usually for several weeks at a time. That's realistic, isn't it?"
Aldís Sigurðardóttir was interviewed in Icelandic by Sunna Logadóttir.
