ThePruneBellyGirl

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 ...

A letter arrives from Crown Princess Lovisa's Children's Hospital: Stockholm October 14, 1965 Dear Mrs. Mattsson! Here I am sending you a couple of photos of Mariana, she is such a good girl now and everything is going so well. She is getting Semper supplement, juice and purees and it is going so well. Today, October 14, Mariana weighed 5,130 grams so she is a big lady now. Mariana sends big hugs to mom and dad. Warm greetings from Sister Ulla  #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...  

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...

It's calling from Sachsska Children's Hospital. - Little Sara is doing so well, the nurse, sister Ulla, chirps into the phone. - Her name is not Sara! the mother replies with despair in her voice. - Her name is Ma riana! The nurse, sister Ulla In the medical journal it actually says Sara. Also Berggren. The mother's maiden name. Sara Berggren. Black on white. Although sometimes it actually says Helen. So if the girl would seem a bit schizophrenic, although it's called bipolar nowadays, she could always blame that Sara. Mariana-Sara. It sounds like another one of those completely twisted combinations of mismatched names that are so typical of northern Sweden. Or like a dance band.    #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, o...

Go home and make another baby, they don't say. Not explicitly. But still. In a way. In what they don't say but still say impliedly. For this child, this newborn child, the one you just had, the one you made this time, that child is not up to much . Go home and try again.   #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...  

A day old, the girl is baptized in emergency. The girl is not in distress. Not in need of any emergency baptism. She is already His. He, who has created her. Baptized in the swedish lutheran church. Later coming home to the Catholic Church. You have called me by name. Before You formed me in the womb, You chose me. She already belonged to Him. But okay then. In their distress the distress of others, the baptism gave them comfort. Comfort in their distress. #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases  #survivor #childhood #handicap #autobiography #emergencybaptism    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 and the father get a few minutes for themselves with the girl, their newborn daughter, their firstborn daughter, before they take the girl to a hospital in Stockholm. They carefully lift the blanket around their daughter to take a sneak peek at that huge belly that no one really knows yet whether it might contain a tumor. Or something else. Then a nurse comes to pick up the girl with the prune belly. They fold the blanket back. As if guilty. Caught of having looked at their own daughter. They say goodbye. The girl says goodbye. The first goodbye of all the goodbyes that will come.   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases  #survivor #childhood #handicap #autobiography #separations #newparents    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, hop...

A da y old, the girl is taken by air to Stockholm. Carried in a baby bag. A nurse is flying there with her. The mother and the father goes home from the hospital. Without the girl. It will take un til October before she comes home to her parents for the first time. She gets a golden heart in memory of that day. The date is engraved. October 23, 1965. She is three and a half months old. The next day she gets a fever and a cough and has to be hospitalized again.   #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 new-born girl is so pretty and so sweet. And everything is actually normal, looks completely normal. If it weren't for the belly. “ The abdomen is soft and flaccid and appears to lack a muscular wall. To the right of the abdomen the colon is seen with clear peristalsis. To the left a mass of string-shaped resistances. No urethral orifice can be found.” The wrinkled belly looks like a dried plum. The swollen belly looks like an inflated balloon. But without a string to hold it in. But there's no air in the balloon. Not helium either. But what is in the balloon? A tumor? The X-ray only shows - something. A decision is made. To refrain from further investigation, to abstrain any action at the hospital in Umeå. This case is so complicated that it must be referred to another hospital. To a larger hospital. To a hospital far away. To the Crown Princess Lovisa's Children's Hospital. In Stockholm. The girl is not fly...

The year of grace 1965, July 7, by the way, it is Wednesday and the time is 11:13 a.m. At Umeå Hospital, at the maternity ward, a girl is born. A girl with a prune belly. Sixty years later it is time to write her story. The story of the girl with the prune belly. It was about time then. That it was written. Maybe at the last moment.   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rarediseases #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...