Yo soy La Lay

adventures in family, faith, and Down syndrome


The man seemed nice enough while we were waiting for the elevator.  He was clearly a pharmaceutical rep, wandering around the medical offices, selling his wares.  He asked Ellie her name and, miracle of miracles, she shared it without bursting into tears.

As we entered the elevator, he furrowed his brow and said, “I don’t mean to be forward, but does she have…. problems?”

Oh Lordy.

“Oh!” I replied, “She has Down syndrome.”

“Well, that’s just… I mean, two people… You are normal, no issues, it isn’t right that you would have something like that.”

You son of a bitch.

Grace, my brain told me, give him grace.  He doesn’t know.  He cannot know.

“We love it!” I exclaimed, probably a little too brightly.  Tessa burst into tears.  He was quite clearly baffled and muttered something about how she’ll never be….  and then he stopped.  I continued to put on the cheerleader face and explained to him about how we have high hopes for her and the therapy and she is doing great.

The man literally ran off the elevator when the doors opened.

This is what I don’t understand:  Why is it acceptable to put any child into a box marked undesirable?  Why assume that anyone, but most especially an 18-month-old baby, is completely incapable of a valuable life?  And why the hell does it matter if she ends up smart or high-functioning or independent??  She very well might, but really, if she is happy… and believe me, she’s happy… I care about nothing else.

I live in an ivory tower of sorts, with loving supportive family and friends who genuinely follow our lead when it comes to raising our little lady.  If they feel anything to the contrary, we are blissfully unaware.  The crushing reality of how others around us perceive this life, just for tonight, has knocked me to my knees.

But just for tonight.

Tomorrow, the work continues.  Tomorrow, fresh-faced and perhaps well-rested, we carry on with the hope of acceptance and of inclusion and of love.  My prayer tonight is that he, that unsuspecting man in the elevator, is as rattled as I am.  I pray that we opened his mind and heart just a little bit.  I pray that Ellie remembers her mom’s response more than his words to me.  And I pray that somehow, we have made a little tiny difference.