Lilja's story

On her way to 18, Anna was a little inexperienced in life and especially as a mother, so she asked for the doctor's assessment and he took a hammer out of his bag and tested little Lilja's reactions. They were abnormal and he informed Anna that she had a daughter with cerebral palsy, who she shouldn't expect to live past the age of 20.

Anna would do ANYTHING to help her daughter. Lilja's father wanted to place Lilja in the 'mental institution' in Iceland, as it was called back then. Anna didn't dare choose that solution because it would mean that Lilja would spend her life in a bed.

Two years passed and one day Anna's doctor told her that a talented professor from Denmark was coming to Iceland and the doctor would try to get Anna an interview with him. Two years later, at Rigshospitalet in Copenhagen, and quite by chance later in the conversation with the professor, he asked about Anna's surname, which sounded more Danish than Icelandic, and Anna told him about her Danish roots.
The professor looked at Anna and said:
'Well, then you can get Danish citizenship and get Lilja into an institution in Denmark'.

From Iceland to Denmark

The professor had set Anna thinking, and while Lilja was in Rigshospitalet, where Anna was met by a doctor one day with the words 'You have to take your child and go home to Iceland, because we have enough with our own Danish children.'

Anna contacted the Icelandic Embassy in Copenhagen. They informed her that although Anna's father had traveled to Iceland and lived there for 20 years, he had never given up his Danish citizenship and therefore Anna and Lilja could stay in Denmark.
Anna's background in Iceland was not the best, her mother was furious with Anna over her pregnancy and marriage, Lilja's father was not the future and therefore the decision was easy. Anna broke out of her marriage and stayed in Denmark at the age of 21 to fight for her then 4-year-old daughter Lilja.
Six months later, they were both Danish citizens.

Lilja understood a lot of everyday words in Icelandic and over the years learned to understand Danish. Her first word in Denmark was 'mother', but she never got a real language. It was more monosyllables and she communicated a lot with her eyes. Lilja said 'no' by sticking out her tongue and also used her body to show sadness or joy.

The time at Rigshospitalet in Copenhagen

For the first time after arriving in Denmark, Lilja was in Rigshospitalet and nothing happened because the doctors didn't know how to help her. Lilja was unhappy and cried a lot when Anna left her.
As a result, a doctor forbade Anna to go into Lilja's room so they wouldn't have to worry about Lilja crying.
Anna continued to show up faithfully every day and stood outside the door and followed Lilja's daily life in the hospital.

After 4 days, a nurse came by and asked Anna: 'Why are you standing here staring?' - Anna explained about her ban and the nurse said 'Bloody nonsense' and changed the decision.
Anna was welcomed back to the ward and was able to care for her daughter.

Cool and arrogant doctors

Anna was always curious to find out how much Lilja really understood and one day she asked an experienced female doctor. Anna had to find an institution for Lilja and it was important for Anna to find an institution that matched Lilja's needs and abilities.

It was a very formal time in the 1950-1960s in the hospital system and Anna was addressed as 'They', 'Them' and somewhat condescendingly 'Little You'. The female doctor coldly replied to Anna:
'Your daughter is placed under 'Mental Health Services', so you can tell yourself that she is mentally retarded!'

Anna slowly learned the 'game' and how to deal with arrogant and self-important doctors, who then behaved like kings in the country's hospital wards. Anna was both beautiful and smart, and when she had to accompany Lilja to important medical consultations, Anna would dress up, do her hair and apply make-up. This way she could get the doctors' attention and she had a charming Icelandic accent in her Danish language, which the doctors liked.

When Anna had an opinion about how Lilja was feeling or what she reacted well or badly to, she would attempt a dialog with the doctors, but most often the response from the doctors was condescending and dismissive:
'How would you know, little lady?'

From child to adult and from a care home on Strandvejen to Ebberødgård

Lilja came from Rigshospitalet to a care home north of Copenhagen. It was a good time and a big change, because here the children were treated very lovingly. They didn't just lie in a bed all day, but got up and dressed and sat up and ate every meal.

In 1958, Anna meets Arvid and they take a liking to each other, but Arvid is a sailor and Anna needs a fixed point in her life, so she breaks the connection.
In 1959, Anna meets her future husband and they settle in Bagsværd.

When Lilja was 6 years old, she was moved to the notorious institution 'Ebberødgård' in Birkerød.

Girls and boys lived together as children, but when Lilja became a young girl, she was moved to the adult section. It was a hard time for Lilja, who is very unhappy to be in the adult ward and both Anna and Lilja's doctor try to find a better place for Lilja, but no institution will open their doors because they consider the paralyzed girl to be too demanding.

Years pass - Anna visits her daughter once a week and it is very clear that Lilja is unhappy. She is also not allowed to use the few functions she has.

It takes 7 years before they manage to find another institution.

Anna's husband is fond of Lilja, who often comes home on weekends and she loves being at home.

In 1960, Anna has her second child - son Bjørn.
The marriage doesn't work out and in 1968 Anna moves to an apartment close to her ex-husband's house in Bagsværd. They have a good relationship and her ex-husband continues to be affectionate with Lilja, building her a pelvic chair out of an old wheelchair, among other things.

In 1972, Anna starts working at a dance restaurant in Copenhagen, where she again runs into Arvid, a widower. Love blossoms and they buy a house on the same street where Anna's ex-husband and Bjørn's father lives.

Lillemosegård: for better or worse

The institution is located in Søborg and in some ways it turns out to be a new start for Lilja. Here, they began to try to communicate with Lilja via a blackboard and signs, but there was a terrible downside because the residents were not cared for and washed, so Anna had to do a lot of the hygiene herself when she came to visit.

Anna once had to cut her daughter's bottom because Lilja hadn't had her diaper changed for days after defecating in her diaper.

Anna lives a good private life.
She loves Arvid dearly, they go dancing together, enjoy life with work, vacations and parties, but they always find time for Lilja, who gets her own room in the detached house.
Lilja loves to party and dance and Anna and Arvid try to involve Lilja as much as they can in their everyday life.
They went on vacation to Spain nine times with Lilja.

When Lilja had been home for the weekend, she got sad when she had to go back to the institution. Anna tried to explain to her that 'if mom doesn't go to work, we can't afford to go on vacation'.

Institutional offer with a single room

In 1989, at the age of 36, Lilja moved to an institution at Hans Knudsens Plads in Østerbro and a whole new life began. It was a very good place - considering the institutions at the time - where a lot was done to develop the residents' functions.

There was good communication between the caregivers and the parents, and a diary was kept so that Anna could always follow Lilja's life.
Initiatives were also taken to provide the residents with a better and tastier diet, and at the time, raw food was a big craze. What the institution hadn't realized was that the residents were starving because they couldn't thicken the food and therefore weren't getting enough nutrition. Then the blender came into use and some important dietary advice was written down for the care staff.

Lilja was suffering from pneumonia and had just been hospitalized for 3 days when Anna comes to visit the institution but does not find Lilja in her room. She searches everywhere and finds her lying completely naked on a stretcher in a bathroom. Ice cold and unhappy.
Anna immediately contacts the nursing staff who explain that Lilja has been given a 'Klyx' (laxative) and cannot get dressed until she has 'delivered a result'. Anna is furious and demands that the procedure be banned in writing, otherwise she will go through the system with her knowledge of the institution's handling of the residents.

A loving mother's many struggles come to an end

At the end of May 2004, Lilja is hospitalized again for a few days and she comes home to the institution on June 1. The next day, Lilja is sitting at the institution having lunch. Meanwhile, Anna is at home and has taken the phone plug out of the wall. She had some important work to prepare and it was important not to be disturbed.

Lilja's mouth suddenly fills with blood and she dies at the age of 51 in the ambulance on the way to the hospital. The institution tries countless times to contact Anna, but when that fails, they contact Bjørn.
Bjørn comes walking up the garden path and Anna wonders. He puts his arms around her and gives her the message. Anna reacts by hitting Bjorn on the arms and shouting 'No, no, no, no.... I should have been there!', as she starts to cry.
Anna then contacted the doctor who had discharged Lilja the day before her death, but he was unable to help further. Lilja's body had given up and it was thought that a main artery had burst.

On June 8, 2004, Lilja was buried.
The garden of the detached house in Bagsværd was full of guests - caregivers, family, friends of Lilja and friends of Anna. There was entertainment and good humor because Anna wanted to give Lilja a final moment with those she loved the most. Party, dance and joy.

Institutional life from 1953-2004

Anna was nicknamed 'The Witch' by the nursing staff just because she demanded that Lilja was treated with respect. She fought many battles with both nursing staff and management and wouldn't put up with just anything.
It took perseverance and Anna relied heavily on the few talented and good people she met over the years.
Anna wished that the caregivers had an education in disability - that the caregivers had at least taken some training courses in disability so they knew and understood what it required.
Lilja spoke with her eyes and in this way told Anna about the caregivers who were not nice to her when Lilja was alone with them.

Anna's final remark

Anna emphasizes that Lilja was soul and body, but many never understood that Lilja had a soul and a body and was a human being of flesh and blood.
Lilja is the person Anna has loved the most in her life and she finds it hard to make peace with the fact that Lilja was never welcome in this world. Anna still misses Lilja and life after her death has been empty, although Anna has also felt a sense of relief because it was a long and hard fight.