Tonight I would like to refer to the beginning of the book, Poster Child, only because it struck such a cord with me when I read it last week.
When Emily was born her parents didn't know about her birth defect. This is common. After it is detected there is a frantic search for reasons why it happened. As humans we want to know what went wrong, what did we do, why us? I've referred to this phenomenon before. What had I done to make Madeleine's leg not grow? I ponder this often although I'm told it is futile.
I had a cold when I was six week pregnant, a bad cold with a high fever.
I have PCOS and possibly insulin resistance.
I did in vitro fertilization to get pregnant.
I carried twins.
I have been told that none of the above mentioned events caused Madeleine's Fibular Hemimelia. I still wonder what it was. Why does my child have an orthopaedic impairment? In my twins play group I'm the only one with a child like this. I remember the first few days of "Peps" meetings and I looked around at the other twins hearing their birth stories and I asked myself why I was the only one facing this.
As humans we do this. We want to know how we have affected our daily events with our choices. Do we really have the choice? Is it God? Is it free will? I have no idea. I cannot speculate and do not claim to know that answer.
"Suffer the children" Michael once said. It is our fault that Madeleine is deformed.
"The Devil made her" I have been told. God would never make a baby deforemed, would never allow a child to suffer; it is the Devil's doing.
"Maybe you weren't suppose to have children" (with reference to IVF). Maybe God punished you for messing with Mother Nature.
"What did you do in your pregnancy that made her leg stop growing?"
"Is there anything else wrong with her?"
"How's Max? Is he normal?
These are questions I have been asked and statements others have made to me.
"She was hysterical. She took the blame for me, for what I was: deformed. there is that tricky line in Exodus she'd memorized as a child, the verse that promises that the sins of the fathers (and mothers) will be visited upon their sons and, in this case, their daughters. Here I was, a condemnation of her life...
The nurse gave Mom a look she would get used to. Later, I would also come to know it well: a look of pity, sadness, with kindness and a bit of unexplainable triumph mixed in. A strangely open yet mysterious look- penetrating and diffuse. ' We just don't know what God is going to do."