Embracing Chaos

Last week I listened to a radio program about Daniel Kish, a blind man who rides a bicycle by means of “echo-location.”  From babyhood Daniel has always clicked with his tongue, and used the sound bouncing back to him to read his terrain.  His mom never discouraged him from clicking or climbing, although she was told to do so.  He climbs trees, mountains, and rides bikes, and says he can see.  There’s more to his story – apparently the brain uses sound waves to create a kind of vision, as it does with light wave information. (Meet Daniel here:http://www.youtube.com/watch?v=xATIyq3uZM4  or listen to the radio program I heard: NPR’s Invisibilia from Jan 22, 2015 )  Daniel is a leader, and gifted man whose unique abilities identify him far beyond his disabilities. He teaches other blind people how to see.  I was very moved and inspired by him and his work.

My son is not like Daniel. He is also not like Adam Beck, famous to those who have read Martha Beck’s Expecting Adam.  Adam is a young man with Down’s Syndrome, described by one friend of his family as having “angels the way dogs have fleas.” Although Adam doesn’t say a lot himself (or didn’t as a boy), his mom describes him as a conduit into the spirit world who caused remarkable things to happen in his parents’ lives – visions, perceptions, and connections outside time and place.  Adam is inspiring too, in a unique, heart-centered way.

Recently re-reading Expecting Adam, I felt kind of gypped.  I know that Owen has changed my life for the better.  But my experience of life with my son has not been anything like that.  No one who knows Owen would claim that he has “angels the way a dog has fleas.”   He is far more likely to be perceived as 1)  lot of work, and  2) annoying, and, possibly, 3) kind of gross.  During the morning van ride to his day program, Owen’s peers would find him most memorable for burping and passing noxious gas. I love what he says, and what he makes me think of, but it isn’t visions.  I am pretty sure there are angels around him, but they don’t show themselves. He’s a happy guy who spends a LOT of time dismantling plastic or wood into smaller bits of the same.

Owen is a gift in my life.  He has been a conduit for angels to make some critical changes inside of me.  Slowed my impatient stride a little, improved my sense of humor, strengthened frail emotional boundaries. Not glamorous, but I like myself better this way.  I’m a more useful member of the globe.  I have no doubt that Owen has impacted the lives of every member of his family,  maybe the lives of the people in our neighborhood, possibly his schools, his caregivers.

But the impact would be subtle.  He is not out there teaching blind kids how to ride bikes.  Owen is like a present that sits quietly, in the middle of busy lives.  The gift is there, but you could miss it.

And although Daniel has never met Owen, and their disabilities are galaxies different from each other, still Daniel is a gift to Owen too.  Daniel’s story has caused me to think in new ways about what my son might be capable of, and how I might be unintentionally “creating his disability,” enabling him without realizing it.  What is the analogy to Owen’s world?  Are there things he could do, and he isn’t because I prop him up?  I am sure this is true.  I wasn’t born knowing how to parent my special son (or any of his siblings for that matter).  Riding his bike, climbing mountains, Daniel Kish enriches my understanding of my own son, opens my heart and my eyes, and shows me new ways to see.  Without that kind of help, we’re all cycling blind – and without echo-location.