About

My second son was born with Down Syndrome.  We hadn't known he would have it prior to his birth (there was a 'soft marker' called echogenic bowel, which is statistically correlated with having Down Syndrome, but in 90% of cases it actually means nothing), and the diagnosis wasn't confirmed until two days after his birth, just before we left the hospital.

Dealing with the news was very difficult, and we know there are a lifetime of challenges ahead of us, but that's true for anybody who has signed up for parenthood.  We are determined to live the happy, adventurous life we always wanted for our family; I don't want to document everything in this blog, but I thought I could record some of the insights and emotions of our journey using a kind of fable as parable.

These stories aren't real, but they are true.


In case you were wondering, here's a few answers to questions you haven't asked yet, to serve as a primer:

• So you're the King? And your wife is the Queen? Not quite.  I guess the King and Queen represent the wisest, most generous and happy parts of ourselves.  The parts that make the best parents.  Our fears and self-doubt will appear as other figures in the stories; i.e., the King and Queen are idealized versions of us.
• Shark Boy? Our first son was born in 2009.  He got a lot of teeth very quickly (a long and miserable teething period), is always on the move (like a shark has to keep swimming to breathe) and he loves the water.  Shark Boy adores the Lightning Kid, giving him affection as much as possible, and has not once demonstrated an ounce of malice towards him.
• What kind of issues does the Lightning Kid have? Developmentally so far, none.  About half of kids with Down Syndrome have heart issues; we see a cardiologist, though he hasn't identified any issues with his heart that need surgical intervention.  Still, there seem to be borderline issues that need to be monitored.  We have also gotten bad, though highly ambiguous results from at least 7 different hearing tests, though the best evidence that he can hear is how he responds to our voices or other noises.  In short, he's doing very well overall, and what problems we're dealing with are on the borderline (which is better than definitively bad)... the ambiguity of these inspired the post: The Edge of the Knife.