October is Down syndrome Awareness month and I have participated by doing absolutely nothing. It all seems so far away and irrelevant here in Windy City Afghanistan where Jack Jack is a valued member of our small expat community, one in a small tribe of American kids that goes back and forth between our houses and experiences the same sort of curious stares that all the kids get as weird foreigners. The extra chromosome does not even warrant as many comments as Dash’s exuberant (read: loud!) English and Violet’s curly hair.
The two times I’ve been asked specifically about Jack Jack’s Down syndrome went much different than I’d expected.
I was with all three kids at the airport, waiting to fly to Capital City. In a small space like that we definitely attract attention and Mr Incredible and I were fielding questions left and right.
One gentleman leaned over to me and pointed to Jack Jack and in halting English said, “this baby…he..is…normal?” Now if you know me at all you know that word “normal” makes me crazy.
But I understood what he was trying to say, so I bit back my usual sarcastic response and said, “He has what is called Down syndrome.”
I was about to explain in a bit more, when the man interrupted me and said, “what I want to know…will the baby…will he grow up? Will he live?” And the man looked so sad and sincere when he said it that it broke my heart.
“Yes, he will grow up. He will live a good, healthy life.” The man smiled at me and nodded happily and then turned his attention back to the other people in his group.
On our way back to Windy City, in the airport in Capital City (what is it about airports?) it happened again. We were struggling with getting ourselves through the multiple, exasperating body and luggage checks so we could sit in the domestic terminal. By about the fifth time I’d been searched and the contents of my purse had been commented on, I was out of patience and the romance of travel was long gone.
I was trying to corral the three kids while Mr. Incredible took care of the bags when a security guard leaned down into my face and pointed his finger at me. I was just about ready to have a heart attack when he gestured at Jack Jack and said in a low voice, “In my brothers house, we have a boy — like this. He is very special. You take good care of your gift from God.” And then he shepherded us into the terminal.
From his view behind us, Mr. Incredible thought for sure we were in trouble for something, and knowing how thin my patience was, he was certain I was telling this guy off in no uncertain terms and that he was going to have intervene. Really, the man does know me well, but I was glad to tell him that in this case, we were being complimented on having God’s blessing in the form of Jack Jack.
I’m still hoping to connect with Afghan families who have little ones with Down syndrome and hear more of their stories. For now, we are content with how accepted Jack Jack is in the community and as for awareness — well Dash is doing a good job with his especially loud voice and everyone is more than aware of our presence in the neighborhood.