Down Syndrome Awareness Month

October is Down Syndrome Awareness Month.

Awareness is something I wish I had had more of.

I wish that I had known more about Down Syndrome before. Not before my pregnancy, or before Annie’s birth. Just before. Most people don’t know that much about Down Syndrome unless it affects their lives. And even then it’s not until it affects their lives that they do know. More times than not, when parents find out their child will be born with or has been born with Down Syndrome they know close to nothing about what it is or what it means. Things unknown and foreign can be a very scary and overwhelming, even unwanted. I think that’s the hardest part.

This doesn’t mean I wish I had gone through with genetic testing so I could research and prepare. Had that been the case, I would have found very little of the awareness I wish to share in this post. If I had chosen to undergo testing, would I have been a little bit better prepared? Maybe. Since Annie’s diagnosis, I have done a lot of reading and research. Some very helpful, some NOT. In honor of this Down Syndrome Awareness Month, I plan on sharing all the things I wish I had known. It’s hard to know where to start, but here goes…

I wish I knew not everything you read is always what it seems.

If you look Down Syndrome up in the dictionary, this is to some degree all you would find.

Down syndrome |ˈdoun ˈsindrōm|(also Down’s syndrome) noun

congenital disorder arising from a chromosome defect, causing intellectual impairment and physical abnormalities including short stature and a broad facial profile. It arises from a defect involving chromosome 21, usually an extra copy (trisomy-21).
ORIGIN 1960s: named after John L. H.Down (1828–96), the English physician who first described it.
usage: Of relatively recent coinage, Down syndrome is the accepted term in modern use, and former terms such asmongol, Mongoloid, and mongolism, which are likely to cause offense, should be avoided.

Words that stick out to me when I read this definition are defect, intellectual impairment, and physical abnormalities. All of these words would be scary to any expecting mother, especially when there is very little awareness of what living with Down Syndrome is like.

I know that I shouldn’t take offense when every time I pick up a book on Down Syndrome, I first come across the word “defect.” Defect suggests a fault or imperfection. The exact definition of defect is “a shortcoming, imperfection, or lack.” So every time I pick up a book on the syndrome my daughter has, I have to read this rather negative word. Usually the readings I have come across describe this defect in greater detail: “something goes wrong during fertilization,” and “mistakes can occur during meiosis,” or “Down Syndrome as a result of faulty chromosome distribution.” However, not once in all this reading have I come across the cause for this “mistake.”

So, my thought is if no one can determine why Down Syndrome occurs, who gets to determine that something “went wrong,” or “mistakes were made,” or “that a fault occurred?”

Certainly something “different and unique” occurred. But if we can’t even find the cause today, when science is at a point when we can detect the presence of the 47th chromosome as early as 8 weeks into pregnancy, who’s to say it was a mistake?

Down Syndrome is not a fault or imperfection, rather, it is a development that deviates from what scientists (and, as a result, society) deems to be the “norm,” “benchmark,” or whatever you want to call it. Imperfection is hysterical in its own right. Who in this world has a “perfect” baby? There is an obsession among people in the last half-century or so (arguably longer) with PERFECTION. The perfect hair, the perfect body, the perfect house, the perfect score – and on. Instead of calling the development of a 47th chromosome a “defect,” “fault” or “imperfection,” we should do the simplest of things and recast the 47th chromosome in a positive light and call it “extraordinary.” Who in our perfection-obsessed society doesn’t love extraordinary? Few, if any. This is the same attitude I wish existed toward Down Syndrome and people with Down Syndrome.

So, until someone can prove otherwise, I choose to ignore the books and to believe that something “special, unique, and extra” happened that “normally” doesn’t. I choose to believe that there is a reason for this extra appearance in 1 out of 700 or so pregnancies. I choose to believe that there is a reason higher than science – since science can’t prove it – that Down Syndrome exists. I choose to believe that Annie was made the exact way she was meant to be. And you know what? I am thrilled with that!

Almost forgot to mention….Our baby girl is 6 months today! And it’s been the best six months of our lives. Happy half-year Annie! The picture at the top of the post was taken today. The slideshow starts with a pic of Annie just hours old, then a day, then a week then months 1-6. She’s getting so big!

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3 responses »

Jen on 10/02/2011 at 12:46 am said:

She’s getting so big and is so cute! And I see so many similarities between cousins Annie and Nick! I love her!

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Shauna on 10/02/2011 at 10:24 pm said:

Well put! Reagan had a heart defect. It was repaired. She does not have a chromosomal defect. She just has different chromosomes. I don’t buy into political correct speech, but I do believe in accurate descriptions and words like flaw and defect and mistake are really not accurate. Our children were designed by God and are perfect even if they are different.

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Mary Beazley on 10/03/2011 at 7:17 pm said:

I totally agree: it was an extraordinary happening!

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