This is what it’s like to live with Down Syndrome
Vendors beckoned people in the mall to try their product. And, it was crowded. I needed to pay a bill and pick up something at the grocery store, so there I was, one of the many.
I noticed a boy, about eleven or twelve standing behind his mother. She was trying some new-fangled coffee. He had Down Syndrome. I paused and stood behind a kiosk selling fountains, crystals, and Buddhas. I didn’t want to look creepy by staring, but there is this need to try to figure out in some way what is ahead. I’ve seen hundreds, possibly thousands of photos of kids with trisomy 21, and I’m accustomed to the one-dimensional view. My son is so familiar to me, but sometimes the future seems so unknown. Will he live with me for the rest of his life? Drive? Be tall? Short? I don’t have as much of this feeling with my daughter. She also reveals little glimpses of herself as a teenager by rolling her eyes at me, being a bit snippy with me, or wanting to put on make-up before we go shopping.Addison’s development stays so much in the now, I can’t clearly put this picture together of what is all coming. I mean I don’t have his charts done or obsess what he’s going to “be” or “look like.” It’s just a small curiosity that surfaces, especially when I see another child with Downs.
The woman handing out the coffee gave the boy a yellow balloon. He waited behind his mother as she tried another flavor. The balloon was on a stick and he flapped it back and forth with the intent and focus of a small child that had never seen such a thing before. Then, the vendor asked how he was. He got a little shy and answered and then took a few steps back to his mother. He placed his hand on her back and whispered something into her ear. They smiled together as if they knew some grand secret. Tears tingled behind behind eyes. The mother took her coffee sample and the pair walked off to the next booth. I turned and as I left, I had a better sense of exactly what I was getting into.



Sandpiper on 18 May 2008 at 4:17 pm #
I can’t imagine what it must be like to move there, but we have talked about the possibility of doing it someday.
Jeanette on 18 May 2008 at 10:26 pm #
I am a mother of a 10 month old daughter, Sydney who has downs. She is such a delight and a blessing. I read your most recent post and could relate exactly. We are involved in a strong local community for kids with downs and are lucky to share our lives with others who have walked this path before us. I too look at kids that are much older and wonder what Syd’s life will be like.
I have bookmarked your site and I plan to read more another day. It looks very interesting, but it is too late tonight. I took a quick browse through and your family is beautiful.