Down syndrome: it’s not the end of the world

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Since giving up facebook for Lent yesterday (has it only been one day??), to fulfill my need to connect with the world I was catching up on blog reading. One blog that popped up in my Reader was written by a pregnant woman who recently had a first trimester scan that had an elevated reading of nuchal translucency (involving the skin on the back of the neck). It caught my eye because that was the marker Kyle had on ultrasound. Like this woman, I also did not pursue further testing. She ended up getting news that the elevated reading might have been a mistake, and the following measurement was better.

She describes very thoughtfully how she went through the “devastating” process, “living the nightmare” of a possibility that her child might have Down syndrome, and came to realization that all children are perfect gifts. I appreciate her honesty and I found her path to acceptance beautiful.

The comments, however, had that vibe… that must have been horrible, so glad you have a happy ending, so glad your child will be perfect.

On the Babycenter Down syndrome pregnancy board, this is something that comes up a lot. People will write that they are devastated and scared because of a marker on ultrasound or elevated levels on their blood tests. We all respond with encouraging stories about how much we love our kids with Down syndrome and how much joy they bring to our lives. Then a few weeks later when the NIPT comes back negative, no Down syndrome, the report is often something like this: thank God my child is normal! the results came back, my baby is healthy! thanks for helping me with my horrible nightmare, but my baby is just fine! See ya never!

I do get it, and a few times I have been the friend who comforts another on undesirable test results. One happened when a friend and I were both pregnant for the first time. You hear the news, your face becomes somber, and you think about how awful it must be for them. Of course, my response was different after Kyle was born. I remember telling one friend my thought that “if only all parents could be so lucky to have a child with Down syndrome.”

So maybe we can stop thinking that a positive prenatal indication of Down syndrome is the end of the world? How about instead of getting that somber, sympathetic face and feeling sorry for our poor friends, we change our way of thinking? How about when we hear someone has a prenatal indication of Down syndrome, we think about the parents we know who have a child with Down syndrome and the joy they experience. If you don’t know one, you’re reading this, so take my word for it:

Our kids are gifts, our kids our important members of our families, our kids have bright futures, our kids have amazing abilities, our kids change our perspectives, and our kids teach us how to enjoy life.

I am talking about Down syndrome, but I am also not. Read the above sentence again. It goes for a baby with or without Down syndrome. And just like that blogger realized, our kids are perfect gifts, no matter what.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

0 thoughts on “Down syndrome: it’s not the end of the world

  1. terrypetersen

    Our granddaughter with Down syndrome was in her mommy’s office when she picked up some work on the desk and read the word purpose. Ella is five-years-old. No, she is not potty-trained. She does not speak with fluency. Moreover, we are awaiting her second open heart surgery. But, is she a gift to all of us? You had better believe it!

  2. Pingback: Appreciation for you, the readers, on my first “blogiversary” | for Elysium

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