The American College of Obs and Gyns is recommending that every pregnant woman be offered a test to screen for Down Syndrome and other chromosomal defects.
“About one in 800 babies has Down syndrome, a condition where having an extra chromosome causes mental retardation, a characteristic broad, flat face and small head and, often, serious heart defects.”
I’ll own that I’m hypersensitive to this issue; after all, I have a daughter, Sarah, who is 23-years-old who has DS. Sarah has a twin sister, Shannon, who does not have DS. Were we surprised when the girls were born? You betcha. Even the OB/GYN was surprised.
We knew we were having twins, but twenty-three plus years ago, one ultrasound to prove it was the only protocol at the time. After all, I was 29 and already had two other children. No high-risk or hereditary concerns.
For those of you who read my blog, you already know that Sarah is more than mental retardation, a broad, flat face, and small head. She is so much more than an extra chromosome and a “condition.” She does not have any heart defects, except when her boyfriend tells her that he’s thinking about his old girlfriend. Sarah does not think she is cute or beautiful. No, my friend, ask her. She will tell you that she is GORGEOUS. And, as for her head, I assure you it’s certainly not microscopic and, for however small it’s rumored to be, it certainly can be stubborn.
She writes stories on her computer, her AlphaSmart, and any notebook she can find. She’s an avid Word Search puzzle fan, and she works the most complicated snake-around things I’ve ever seen. She folds clothes, she empties the dishwasher, she helps me cook, she sets the table, she cleans her bedroom and bathroom, she rakes and sweeps outside, she bowls, she is wild about going to LSU games with her father, she loves “Game Days” when LSU plays, she loves hanging out in book stores and picking out books to read, she has extensive movie and CD collections (some purchased with her own money from her own job), she has her own cell phone and knows how to use it to call anyone at anytime (ask her siblings), she orders her own food at restaurants, she adores her niece, she can spell better than many of the high school juniors I teach, she reads and studies her Bible almost every day. And if you’ve never been to church to witness Sarah singing, you are truly missing an extraordinary worship experience. Sometimes she signs along with the songs. Her love for the Lord transforms her when she is celebrating. She tells me that some nights the moon looks like a banana, and on other nights it looks like a pizza. She listens to “I Can Only Imagine” by Mercy Me and talks to me about Bailey, my grandson/ her nephew who went to heaven when he was a month old, and how happy he is with her Meemaw and Papa in heaven.
For the record, she has the small ears and crooked little fingers also characteristic of DS. She has forearms that are not exactly proportional. She missed the simian crease in her palms. She has the misfortune of having a short mother (4’11”), so that combined with the tendency for DS adults to be below average height–we’re just glad she’s 4’5″. And, also for the record, her twin, Shannon, is vivacious, beautiful, equally stubborn, and also without heart defects.
So, if 1 of 800 babies have DS, that leaves 799 who do not. And what guarantees do those 799 have that nothing will ever happen to them for the rest of their lives that will, in one way or another, damage them mentally, physically or emotionally? Any one of my other four children could, by virtue of an auto accident or sporting accident or random mishap, be rendered as retarded or more so than their sister.
My children learned sympathy and empathy at early ages. Some kids at school would ask if they were retarded like their sister, and sometimes adults would make the dumbest statements, often in front of Sarah. We’d have to remind people that having DS did not mean she was deaf. Once someone asked me which of the kids were the twins. One lady looked at me, and I couldn’t make this up, said, “Are you sure?” Another genius, when I was having the girls’ pictures taken at a studio, pointed to Sarah and said to me, “What’s wrong with her?” (I think my reply was, “Nothing. But what’s wrong with you for asking?”).
If I had a choice, would I want Sarah to be “normal”? Well, of course. ( And I’ll save that definition of normal for another time.) For years I was terribly angry with God. God, who could raise Lazarus from the dead, wouldn’t take away a chromosome? Then a friend of mine pointed out to me that Lazarus died twice.
But God didn’t fix Sarah. God used Sarah to fix me.
I am a better person for having had the privilege of being Sarah’s mother. Her life is infinitely awash in goodness. At times, she’ll look at me and say, “I love my life.”
I dare us normal people to say that with the conviction she does.