Saturday, February 6, 2010

A Walking Litmus Test

Anyway, I don't know why I'm sitting here in my kitchen thinking that I have the market on "tragedy." Oops, that's such a pejorative (GRE) word. When Taylor was born, we actually did receive many sympathy cards--with flowers and praying hands, and gilded words that expressed such sorrow. No kidding. I'll show them to you. Gosh, I wish they had just sent me money for a pedicure. The sympathy cards sort of set the stage for what we'd be in for. When a newborn child is described with things like "suffers from" or "afflicted with" you can just imagine what kind of acceptance lies ahead. WHOA! Rough terrain coming right up.
Walking around with Taylor in Kroger or TJ Maxx or (I'm trying so hard not to say Wal-Mart---but, ok) Wal-Mart is like having my own personal litmus test next to me. A litmus test of love. A litmus test of who out there is comfortable in their own skin. A litmus test that detects when people look away, run away, pretend they don't see--because they can't allow themselves to "be with" the imperfections in their own lives. I'm going to just on record here without any PhD empirical data and tell you that 100% of blacks who we encounter always speak, always acknowledge, always extend a hand. Anybody need dissertation research? I don't know why that is, but it has been true for us.
Why do we look away? Why don't we embrace each other's scary parts? When we avert our eyes away from something that makes us uncomfortable, aren't we really averting our hearts..our own humanity? (Don't barf. Keep reading.) Come on, my brothers and sisters, what is it in you and in me that makes us scared to death of "different"? I mean, seriously, this is not something you can "catch." It's not contagious. What is contagious is just acknowledging that we're all supposed to be in this life together. It's a big boat, this life---- but it's all the same boat. Right about now I am trying so hard not to break into a chorus of KumBaYa. I can't get out my bongos right now though, because my 25 year old "litmus test" needs me to help him in the bathroom. So, wherever you're sitting, whatever you have on, could you just sing one verse--with all of your heart-- for all of us? It's a litmus test. Come By Here


  1. WOW, I don't know what to say except Taylor is truly blessed to have his loving family.
    Ya'll are blessed to have Taylor. Cindy always looked forward to seeing Taylor when they were young children and still speaks fondly of him today. I haven't seen Taylor in such a long time, but he won a place in my heart the first tiime I met him. Thanks for sharing!

  2. I remember when Taylor was born. John and I were working with Bo and I was pregnant with our first child. I found myself wondering how we would deal with it if we found out that our daughter had Down Syndrome. I knew then what I know now, that nothing can prepare you for that type of news. But by writing this blog, you are taking us along on your personal journey and giving us little glimpses of what life is like for you as a parent of a Down Syndrome child. By generously giving of yourself, you are helping us understand differences. I confess, I am guilty of looking away in a store but it's not because of discomfort but rather a lack of should I act? Why would I say anything if I don't know the family?

  3. You're reeling this New Yorker and old college buddy into your imperfect boat.. even if currently an ocean away in Prague. And I agree with you that together this boat floats;apart it sinks. And there's sure no guiding it with our eyes closed... and while it's hard as hell to lead with our eyes open, we cannot allow our suffering to lead us into paralysis. I'm reminded of this: "Hey, draw the boat away from the shore so I can teach, show you guys how to fish." The guy knew how to rest and keep on going. So does the Dali Lama who says "Sure life is suffering but once you accept that you can live and get on with it!" Hah. Taylor bypasses all of that... he's out there with the abundance. While for those of us who "know" it's a different choice. One that depends on how you look at it. I believe in Darwin and scientific discovery but I also look at the results of The Age of Reason and seem much to be desired, i.e., "knowing isn't everthing. There is much more to pursue. Rock on sister.

  4. kamerica, I just learned how to post a comment on my own site.
    I love the question you pose about what, if anything, one might say to a family with a child with special needs. I don't want to speak for all families (so speak up some of your other parents of SPED kids!) but it can be as simple as, "Oh, I like that kind of soup too." "Looks like ya'll are out having a good time." "Isn't it wet outside?" Anything--very banal, chit-chatty kind of thing. Elevator talk. I wish my mother were still on earth. She would talk to anybody about anything...So embarrasing, but now I look back and see how she was really just connecting us with one another.


Thank you so much for your comments. I know it's scary to put yourself out there. I really appreciate your being on this journey with me. You really are brave..