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fredag den 16. januar 2009

Sundhedsplejerskens første besøg - The Health visitor’s first visit.

Det er tidlig morgen. Jeg er stået op for at tage imod Arthurs sundhedsplejerske. Hun skal komme for første gang, for at se til Arthur. Jeg har lavet the og sat kager på bordet.

20 minutter for sent kommer Hanne Dorthe. Hun er perfekt - Som en sundhedsplejerske skal være - Lige efter mit temperament. Vi finder hurtigt hinanden, taler i tusinde år om alt mellem himmel og jord. Hun noterer ned i Arthurs bog, at han vokser og trives som han skal. 
Jeg fortæller om Arthurs rystelser, hun er helt uforstående. Jeg nævner sygeplejerskens kommentar, men Hanne Dorthe ved ikke hvad "Et umodent nervesystem" betyder. Hun fortæller, at mange børn har uforklarlige anfald.

Halvanden time senere går Hanne Dorthe og vi aftaler at ses snart igen.  

The Health visitor’s first visit.

It’s early morning. I woke up early because Arthur’s health visitor is coming today. All newborn babies in Denmark has a health visitor attached the first year of their life to check that everything is okay and to keep an eye on the babies wellbeing. It’s her first visit so I made tea and put cookies on the table.

Hanne Dorthe arrived twenty minutes late and she was perfect – her temperament and everthing about her was exactly as I hoped it would be. We could talk for ages about everything and nothing and she wrote in Arthur’s journal that he thrives just as he should. I told her about Arthur’s tremors which she had never heard of, nor had she heard of an immature nervous system. But she explained that babies often had unexplainable attacks.     

She left after one hour and 30 minutes..

mandag den 12. januar 2009

Hvorfor ryster mit barn? - Why Is my child shaking?

Det er nat, kl. er lidt over 04, Arthur er 36 timer gammel. Jeg er alene med ham på en hospitalsstue. Lyset er slukket og jeg står og kigger på Arthur, der sover i hospitalsvuggen. Hans krop bevæger sig, stille sitrer den. Det er som om en rystelse gentagende går gennem hans lille krop. Jeg kører sengen ud på hospitalsgangen. Lyset er dæmpet og der er helt stille. Midt på gangen er et kontor, hvor nattevagten sidder. Jeg kører hospitalsvuggen hen ad gangen... Igen ryster Arthurs lille krop. En sygeplejerske kommer ud fra kontoret. Jeg spørger hende forsigtigt, i frygt for at lyde dum: "Hvorfor ryster mit barn?"

Sygeplejersken kigger på Arthur og hans krop ryster igen. "Han har bare et umodent nervesystem" svarer hun.


Its in the middle of the night just past 4 o’clock. Arthur is only 36 hours old. I am alone with him in our room at the maternity ward. The light is turned off and I am looking at Arthur who is sleeping in his hospital crib. His body is moving, he is quivering. It looks likes the shakes are repeatedly shakes through his tiny body. I rolled his hospital crib out in the hall. The lights are dimmed and its quite. There is an office in the middle of the hall were the night shift sits. Arthurs body starts to shake again as I roll his hospital crib along the hall. A nurse exits the office and apporaches me and eventhough I am afraid to sound stupid, I ask: “Why is my child shaking?”

The nurse glances at Arthur and his body starts to shake again. “He has an immature nervous system, that’s all.”


Arthur 11-01-2009

14. februar 2012
For tre år siden blev min søn, Arthur, født.
Fire måneder senere fik han den sjældne diagnose Startle Disease - Hyperekplexia.
Denne blog skal fortælle Arthurs historie og beskrive hvordan han udvikler sig. 
De første mange indlæg er skrevet ud fra notater og tankestrømme og cirka-datoer.

february 14th 2012
My son Arthur was born three years ago,
Four months later he was diagnosed with a rare
disease called Startle Disease aka. Hyperekplexia. The purpose of this blog is to tell his story and describe his development. The first many entries are written on the base of my notes, thoughts and the dates are not exact.