ThePruneBellyGirl

A postcard arrives for the girl at Children's ward IV at Karolinska Hospital in Stockholm. April 28, 1968 is cancelled on the stamp with the old king. The postage is 45 öre. There is a cartoon dog on the postcard. And a small cat that is hissing at the big dog to defend its prey, a bone on a plate, towards the dog, that has plastic balls for eyes that the black pupils can roll around in. But cats don't usually eat dog bones.   Hi Mariana! Here you get a little doggie for your name day. If you squeeze his stomach you will hear what he does. Grandma and Grandpa have been here to visit us. We hope you can come home to us soon. Ask the doctor if you aren't well soon. Bye bye! Greetings from Mom and Dad. The girl presses the card. Which beeps. Maybe it means "Happy name day!" in postcard doggie language.   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #han...

Another mother has gone home from Karolinska Hospital and has left her daughter, her name is Anneli, with a bag of candy as consolation. The “Non-Stop” candy, the candy coated chocolate lenses, are beautifully colorful. Yellow, red, green, brown, black, orange. The girl steals the bag of candy from Anneli. The girl usually never gets candy. And the girl is only two years old, so she doesn't even eat Anneli's Non-Stops. She just plays with them and crushes them. Non-Stop. Anneli screams and cries. Over the loss. And the girl's mother promises herself to never ever leave her own daughter with a bag of candy as consolation.   At Karolinska Hospital 1968 #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #karolinska #separations   These poems are originally written in Swedish and translated by myself. So if the translation sounds ...

The girl is to be left in the hospital with nurses and doctors. She clings to her mother and her father and cries. The girl is to be allowed to go home to her mother and her father. She clings to her nurse and cries. Always these separations.   The Prune Belly Girl and nurse Eva at Karolinska Hospital  #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #separations  These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...  

The mother writes a letter to the father: Stockholm October 21, 1968 Hi! I have to write you a few lines. When we call, it's always so urgent. A s you can imagine it's terrible to be here, I sometimes wish I was at home, but Mariana is so happy when I come down to her, that there are no limits to it. She kisses and hugs me and is so cute. It's just a shame that she has to suffer so much. I think she will take quite a lot of damage this time. And now she's so big that she remembers more. /.../ It's so sad for her, you can't believe it, she has such pain and they don't get any painkillers when they're so small." The girl gets no painkillers. Not for any kind of pain.   The maternity flat and children's ward are marked on the postcard   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #karolinska  These poems are originally written in Swed...

The doctors' round comes sweeping into the girl's room at Karolinska Hospital At the head, the chief physician and docent N.O. Ericson, accompanied by a whole bunch of medical candidates and nurses who listen attentionally as the chief physician explains that here we have Mariana, and when she stands she looks like a pregnant woman, and when she lies down she looks like a sunked sofa. The candidates laugh.  The associate professor looks pleased.   The mother goes up to the maternity flat and cries.    #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #karolinska  These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and ...

The mother travels to Karolinska Hospital in Stockholm to visit her daughter. She is staying in the maternity flat. It has eight beds for mothers and a kitchenette. And a pay phone for pennies. It has a view of the North C emetery. Which fits well, because there are always children dying, children at risk of dying at Karolinska Hospital. And whose mothers return to the maternity flat. red eyed from all the crying. And who pack and leave Karolinska Hospital without their child. There is no fathers' flat. If or when the f ather wan ts to visit, he has to stay in a hotel. #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rarediseases #survivor #childhood #handicap #autobiography #karolinskahospital    These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there......

In hospital, at the children's ward at Umeå Hospital, there are visiting hours. Then you are allowed to visit your child, your sick child, your perhaps terminally ill child, for one hour. Or maybe two. At most three. For the rest of the day, parents should not disturb the order in the hospital. Not disturb their own sick child. #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases  #survivor #childhood #handicap #autobiography    These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...

Another letter arrives from the hospital. Stockholm April 7, 1966 Mariana wishes her Mum and Dad a really happy Easter. In the fifth photo from the top you can see my tiny teeth, I am always happy and sweet. All the sisters on the ward help to spoil me. Today I weigh 8.939 grams. The best thing I know is food. Happy Easter wishes the Staff at Crown Princess Lovisa's Children's Hospital The photos were taken by a photographer working at the x-ray clinic   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases  #survivor #childhood #handicap #autobiography    These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...  

The girl is coming home for the first time. In October. That's when she gets that gold heart. But she gets so sick the day after coming home that she has to go to the hospital. The tickets from that day! "The patient is admitted for observation and care, mostly because the mother feels very stressed and doesn't believe she's capable of handling the emergency situation." The girl stays in the hospital for almost two months before she can come home again. In December. So there will still be a Christmas, a merry Christmas with a child. Their firstborn girl, who is a newborn and five months old. They take the girl with them to their grandparents. On New Year's Eve they cast tin. And interpret the figures as hopeful signs. After the Epiphany, she has to go to Lovisa's Hospital in Stockholm again. For four months. Then back to t he children's clinic in Umeå. Back to Lovisa's and then ...

On the way to Värmland from Umeå; which by the way is called the City of Birches because birches were planted along all the streets after the great city fire, the devastating fire, (but that's a whole other story); well, on the way from there the mother and the father stopped in Stockholm to visit their newborn daughter for the first time, who is now one and a half months old. To hold their newborn in their arms. To feed her with a bottle of Semper milk substitute, because the breast milk, the mother's breast milk, has been pumped out to some other child when the girl, their own girl, had been sent to Stockholm, and perhaps the milk had been mixed up with tears. But that doesn't matter now when they hold their girl in their arms. And they buy a pink checkered dress at in the expensive store NK for their girl. They sleep in the car, it costs nothing to sleep in the car, and they buy an expensive dress in the...