What my family did that worked

February 7, 2006

I was born in 1956 (I know, dark ages) in a small town in Florida; I was almost

a year old before anyone could figure out what was going on with me. (My older

sister fondly remembers when I was errneously treated for a thyroid condition

and cried 24 hours a day.) My family did not have much money and could not take

me all over the place to see specialists. We did luck into finding a

pediatrician who had seen dwarfs during his training and so knew where to start,

though he could not identify SEMD (duh - it didn't have a name yet). My

childhood surgeries were done for the benefit of function - leg, ankle, and hip

straightening. Although I now wish adults could bounce back as quickly as kids,

those were difficult times, both physically and socially (being out of school,

etc.). But the functional issues made it worth it.

However, medical assistance was not what my family provided that helped the

most. They simply accepted me exactly as I was and loved me as much as all the

kids. They expected a lot of me - especially my mother - and I had to first

prove I could not do something before I could get out of it. They always

reminded me that I would have challenges in the real world, but that I had a

mind that could figure them out. I realize now that their assumption was always

that THINGS IN THE WORLD would be the problem, not ME. If I complained about

anything physical, my mother would firmly remind me that there were plenty of

people worse off, etc., and that I was able to deal with whatever I would have

to deal with, and that - thank heaven - at least I didn't inherit the

nose! She thus equipped me to like myself and to deal with the world even when

it was not too friendly.

I still have surgeries when needed to stay mobile, but I cannot imagine going

through one just to look like the world says I should look, even if I could then

reach more things. Being short is just not the end of the world, and there are

a million ways to deal with the inconvenience. I mean no disrespect to those

who choose otherwise, and it doesn't mean I don't like them or accept them or

whatever. It just means that I want to say that I firmly believe that what is

" wrong " with me has to do with joints that don't work properly, not my height.

My point is that my family gave me what I needed most: love and acceptance,

worth far more than all the " fixes " they could not give me.

Okay, I'll sit down now.

Alyce

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