One mom’s view: There’s no such thing as a perfect child
February 17th, 2010In an essay that’s in the most-viewed spot at the [Toronto] Globe and Mail‘s website, Edmonton mom Sue Robins says she felt as though she’d been slapped when a fellow preschool mom asked her why she didn’t get prenatal testing. Robins’ son, Aaron, has Down syndrome. After escaping to her car, Robins burst into tears. An excerpt:
Why do I have to justify my son’s very existence? Why isn’t it okay that he’s alive? What are you afraid of?
For those of us who have children whose extra chromosomes could have been detected prenatally, it is a long and lonely road. We get asked these questions. We get frantic calls from friends who are considering amniocentesis because their triple-screen prenatal test has come back elevated. The whole genetic testing thing is fraught for parents who have kids with disabilities.
One day it won’t just be “us.” With the clever mapping of genes, there may be tests for all the lovely imperfections of life that make us human. All in the quest for the blue-ribbon baby.
What I should have asked the mom in the playground was, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?”
When you can answer those questions, I will answer your questions.
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February 17th, 2010 at 8:17 pm
We’ve actually done just fine so far. We’ve had far, far more positive comments and very few negative ones, and I’ve certainly not had anyone ask me about prenatal testing. It is sad that in this day and age with diversity all around us that some of us so-called typical (I would call compassion and sensitivity deficit) people feel the need to let others know that they are the purveyors of how we as a society should live and care, or not care, for others. No one has the right to dictate who should have the right to be here. We will all be affected by disability in our lifetimes, either personally if we are blessed to make it to old age, or with our loved ones. A just and compassionate society must have room in its list of priorities to assist and support people in most need of help. That being said, we should never immediately assume that people are asking for government hand-outs just because they have a child with a disability. Lots of families out there are working very hard to avoid just that.