At My Beginning….
I was born in a small town hospital where my mother was born, and where my Grandmother and Great Grandmother had been born just a few miles away. There had been no noticeable problems in my mother’s pregnancy. She was 20 when I was born and was very healthy. Dad was 21 and the same. I don’t think either of them had ever head the words Spina Bifida before the first few weeks of my life. No one knew any answers they just sedated my mother as they told her that I would be rushed to the nearest children’s hospital about an hour away.
Doctors in the next few weeks said many things to my mom that she has told me made no sense to her then at all. Things that later, much later, she realized that they were trying to update her of my condition in almost ‘code words’ as they were unsure what she knew or what she could handle. “Her heart is very strong.” “She smiles a lot.” “We can’t know anything for sure at this early of a date.” “Time will tell.” “We didn’t have to use the ventilator.” “We need your husband to sign some papers.” My mother did not learn what all of those statements meant for a very long time. But soon she found a way to deal with what was going on, whether she understood it all or not. And those poor people at the hospital had no idea that they were talking to a fireball.
Those papers that needed to be signed by my dad, soon she was signing them. The hospital had a rule back then, now please remember this was the late 50’s, that only the father could sign permission to admit papers, surgical consent and the like. My mother explained that it was fine, except that he was at work about an hour and a half away and they could let her admit me and sign the forms or we could just go back home. Guess which one they choose? The statement about her baby smiling was code that they didn’t think there was an MR/DD problem. Heart being strong was code that her baby would probably make it. Knowing nothing for sure at an early date, was code for not knowing if her child would ever sit up. Not having to put on the ventilator meant that her baby had passed a milestone she wasn’t even aware was happening.
I spent most of the next nine months in the hospital where parents could only visit about once a week. I did walk first aided by a stool, then a walker and for the last 50 years forearm crutches. I went to public school for six years and then to private because of busing and stair issues. And soon my mother and I became fireballs together. Next week I’ll share some of the change from hospital stays then and now and the advantages I believe I reaped because of the time I was born. But until then… What was your family’s experience with your disability whether from birth or later onset in life?