Amy Julia Becker makes a great point about finding out that her child had Down syndrome.
There is some false, yet underlying assumption that pregnant women have to go through genetic testing to know if their child has the disability.
But more importantly, that tiny bit of medical information, in essence tells us nothing. Not only are the doctors “ill-equipped to interpret test results and to offer a fair and balanced description of Down syndrome” but the fact itself does nothing to describe who these little people are. The medical information does not describe these little girls and boys, who despite their disability, will have all kinds of interests, quaint personality traits, and precious moments.
Being a parent of a child with Downs is as joy-filled and full of surprises as any parenting experience would be.
Genetic testing merely puts parents on a search and destroy mission without ever allowing them to know who their child is.
In the hospital, we received a diagnostic portrait of our child. Some of it was spot on: she has tubes in her ears and wears glasses. She needed a heart procedure. She still sees therapists every week. And yet the diagnostic portrait, even though it included some accurate facts, never showed me anything true about our daughter. It never told me that she wouldn’t love dress up clothes or baby dolls but that she would love spelling words and playing Monopoly. It never told me that she would sneak the iPad under the covers—not to play games or watch videos—but to read Matilda. It never told me she would form a friendship with my 88-year old grandmother, and that together they would read and sing and look at pictures. It never told me how much of her life would be worth celebrating.