I read about a pregnant woman who received her Down syndrome test results. The doctor told her she had a “1 in 5 risk” of having a child with DS. Then I thought to myself….
You have a 1 in 5 chance of having a child with DS….stats, stats, stats ….stats are not really as interesting or as important as emotions. Emotions make up the universe of our human experience. They are the result of what happens to us combining with who we are. They have the complexity and the subtleties of all of the colors on the spectrum in combination with all of the lighting, shadowing, and full effects that make up the experience of “color”.
Data is like one simple metric. It’s like saying red is 428 THz. Nobody experiences “428 THz”. The frequency of red is good if you want to measure some change over time (did the color change?) or if you want to classify the color (it is red, not blue). But, knowing it is red will not help you understand the impact it could have on your life. A brilliant bouquet of red roses has a very different impact on someone than the blood red drips from a scraped knee. So this doctor told you he saw a higher than normal likelihood of seeing “red” rather than “blue”. And he used my favorite word “risk” – as if he even begins to understand the implications. Surely someone who had a more close relationship with someone with DS would not see a “difference” as a “risk”. Red hair is not a “risk”, nor are “larger feet”.
The question is what would happen if you had a child with DS. If you were like most, you would mourn the death of some imaginary perfect child. And it would be difficult. But then the interesting and amazing thing happens…you learn to love this child…..and the child opens your eyes to a different wonderful world….and the child touches you in a very deep way that changes who you are and how you view the world. You are part of a new tight knit community that is amazing and welcoming ( like here and here and here).
Parents of children with DS are less likely to get a divorce (and one mom’s take here). They report raising their child as overwhelmingly positive and often describe it as the single most transformative experience of their life. Those stats revolve around emotions. The emotions are the interesting part of the discussion. And it is missing from most of these conversations.
I’m one of those fathers. Every day I think how lucky I am.
Only 1 in 700 births end up being to such a transformative and positive experience. Every day I think how lucky I am that, by fluke, I get to be my daughter’s parent.