My Life as a child with a birth defect in the 1950's

My brother in this last year said I should write the story about my life as a disabled child in the hospital. I suggested that he ask me questions I could respond to; he never responded to my request. Recently I asked someone if they would help me become a better writer. She said you have to have insight about what you are saying in order for it to mean something to others. I'm not sure that is true, about the insight, sometimes it is just about what is similar, or what is different, that evokes reactions, positive or negative from others. I'm not sure about my insight or whether I can remember enough to make my life story interesting to others. Maybe as I write I will remember more things and maybe my insight will grow as I write. So here goes, I'll give it a try.

I was born on 8/20/50, on a Sunday around noon. My mother said I was a 10 month baby. I was a breach birth, my mother said I messed up her bladder. She also said that because I was born around noon she missed breakfast, she missed lunch and because it was Sunday all she got for dinner was cold cuts. I weighed a little more than five pounds. My mother's cousin, who is like a sister to her, said that I had a beautiful face with a peach complexion. My mother's sister- in-law, Aunt Mildred, told me, just this past year that when my mother brought me over I was all wrapped up in blankets with just my face showing and my mother wouldn't let Aunt Mildred remove the blankets so she could see me. Aunt Mildred said when my mother left the room Aunt Mildred took a look at me and she knew something was wrong because my feet were up by my face. Aunt Mildred said my mother told her the doctor said to take me home and I would be all right. Aunt Mildred said she told my mother there was something not right, and she should take me into the Alfred I. duPont Institute for a check up. (At the same gathering where I heard this story, I learned that Aunt Mildred's son, Jimmy, had spend some time at the Alfred I. duPont Institute also.) I don't know when my parents took me for my first appointment, but at age 6 weeks I entered the hospital for the first of a series of stays. My disability is Arthrogryposis Multiplex Congenita. The joints and bones from my hips to my toes are effected by my disability.

My first admission to the hospital was on October 2, 1950 through April 21, 1951, 203 days in the hospital. I had a closed reduction of congenitally dislocated hips and was casted. Back then there was a baby ward up stairs, later babies and older children were kept in the same first floor wards, a boys ward and a girls ward. The boys ward had a few more beds because there are more disabled boys than girls. In 1950 through 1964 parents were only permitted to visit once a month, in the auditorium with all the other parents for two hours. Patients were only allowed to have two visitors at a time, children were not allowed to visit, so my brother who was 1.5 years older than me was never allowed to come into the hospital to visit me. My maternal grandfather, Gramps, would watch my brother and toward the end of the visit my mother would go out and my grandfather would come in for a while. Needless to say, I do not remember much about my initial stays at the hospital.

My second admission was on August 13, 1951. I celebrated my first birthday at the hospital, my parents have never talked about this. I went home on August 18, 1952, so I was able to celebrate my second birthday at home. I was in the hospital for 368 days. During this time I believe Miss Payne a nurse connected with me. I remember her calling me Miss Ice. I just had a fleeting feeling of deep emotion as I wrote that, and my eyes welled with tears. I had a picture of Miss Payne holding me on her hip in my wallet while I was in Seminary, but someone stole my wallet and I lost the picture. A few years ago I tried to contact Miss Payne. I called the hospital; they said if I wrote a letter they would forward it to her, I never heard back from her. During this hospital stay I had a series of operations; on October 25, 1951 the doctors manipulated both my feet under anesthesia, applied casts and manipulated both my hips. On November 29, 1951 I had a posterior capsulotomy of the right ankle. On January 3, 1952 I had an Achilles tendon lengthened and posterior capsulotomy of the left ankle. On March 6, 1952 I had a arthrography of the right hip joint. On April 17, 1952 I had insertion of heavy Kirschner wires in the supracondylar region of both femurs of the hips and application of long leg casts. On March 25, 1952 I had arthrograms of the hips. I don't know when I went home, but I was in the hospital again for a third admission on March 9, 1953.

I believe that it was during this third admission that I had my first sense of something bigger than me and outside of me. I also believe that this is when I was given the concept and also chose to believe the world is a good and safe place. The baby ward was on the second floor and
there was also an upstairs porch off the baby ward. I remember being outside with leg cast on sitting in one of those three or four legged walkers with wheels on the porch. I had on a tied under the chin baby bonnet which I was told to leave on, and which I immediately took off. I think the action of making an independent (I am looking for another, stronger word, but cannot find it) choice to take off the bonnet also made me aware of the outside environment. I just remember being in the green tree tops with the sun shining and a few white clouds in the sky, there seems to be a breeze and I felt like I was in a bubble of safety and love. Maybe this is what people mean when they say the world is the baby's oyster. In my forties I found the phrase by Einstein that says: "At some point one has to decide if the universe is a safe place or not." Perhaps this happened during my fourth admission, but early on I had a sense that there was something larger that existed and would take care of me. To be continued...

Thank you for reading my blog. Your friend, Iris