"The hole in his back is completely overgrown and there is no longer risk for infection. He has been growing like an average baby, he eats quite normally for his age, though he does not try to chew; he likes to watch his brother and sister at play, laughs at them, but does not play himself. Though he moves his hands, he does not have any feeling in them and he does not use them . His head is not too big, but rather heavy, it grows very slowly, about 1 cm a month. He looks very healthy, but we don't know how long he will stay with us. We hope it won't be too long though, for life cannot be much fun like that, even not for a baby"
"We would like to hear from you whether Crippled Children or any other institution would like to have his body after death. We don't attach any value to corpses and we would like it, if it could be used for some kind of medical research. Please let us know, too, the address of the association who takes in and gives out corneas of eyes. As I said, Johannes looks healthy and he may be with us for some more years, but we want to know what to do in case something happens to him"
Amazing that Hans had an open wound with direct access to the brain, he had no infection a 11 months. Amazing that in 1960, our parents were proactive to think about medical research and organ donation as a way to have Hans' life be significant.
The DSCC (division of Services for Crippled Children) replied:
"If in the future, the care of your son becomes too much for you, I would suggest that you go to the State's Attorney and file papers to have the child admitted to the Lincoln State School. There is a long waiting list at the present time..."
In the 1960's, it was common for children with diabilities to live in facilities, rather than with their families. Caroline, child #4 was born Feb, '61. My parents sent this letter in March of 1961.
"It might be a good idea to try to get him on the waiting list for Lincoln State School, although we don't want to bring him here or anywhere else as long as we can take care of him ourselves, unless an institution would be better for him."
and in Oct of 1961:
"We appreciate your interest in Hans, and I should write you more often how he is coming along. But my family keeps me so busy and there is really no change at all since our last visit in April."
5th child, Wilma was born in March of 1963. Mom wrote this letter to DSCC in Sept '63:
"It's almost two years ago since you last heard from us. There has been no change in Hans' general condition since you have seen us in April, 1961. He still spends his days in the same stroller, fingering the same baby-gymset a little with his right hand, laughing at some sounds and crying at others. He has some sores on his head, of which I have given up hope to ever see them healed. They apparently drain enough to keep his head from growing. I keep them clean and covered with bandages, boiled in boric acid and that helps them get smaller, but then they get swollen and red from pressure from within and the new skin comes off and we can start all over again. It does not seem to hurt him much though, except that he does not want to sleep on his left side. His sores on the right side are worse, but he does not care and sleeps good, but he stays awake for hours on his left side till I give in and there is peace for the rest of the night. His head measures 71 cm now and has not grown since last January."
Mom regularly sent Hans' head measurements to Dr Henry G Schwartz, Neuro-surgeon at Barnes Hospital in St. Louis.
Jan '62 - 65 cm
Oct' 62 - 70 cm
Feb '63 - 71 cm
In Oct '63, my parents considered an option to place Hans in foster care. To do so, Hans had to be on the waiting list at the Lincoln State School. This description was included in that application.
"Johannes is paralyzed from waist down, he has had some use of his left hand, but does not use it anymore; he plays some with his right hand with a cradle-gym hanging over his stroller in which he spends his days. He does not walk, does not talk, does not chew, taking only liquid or mashed foods. His head started growing right after birth and measures now 71 cm in circumference, it has not grown since last January. He knows his parents and brothers and sisters and likes to watch them, but it is impossible to say how much or little he understands."
To be continued - tomorrow.
No comments:
Post a Comment