Wednesday, September 3, 2014

I’ll Take Mine with Down Syndrome, Please

This is not new.  Back in 2011, I wrote the blog post below in response to comments by a healthcare professional about aborting babies because they had Down syndrome. In July 2013, I wrote the blog “Taking Away the Down Syndrome” in response to the new research that says they may be able to shut down the extra chromosome.  It is my all time top blog in terms of readers. I don’t want to reinvent the wheel today though. I just want to post what I’ve already said. Rachel and others with Down syndrome are not afflicted. They are not broken. Research says that most people with Down syndrome are happy. Their siblings are happy. Their parents are happy. That doesn’t mean it is not hard. That doesn’t mean it isn’t exhausting. It is called living.
So here you go.
I’ll Take Her With Down Syndrome, Please
Reprinted from November 2011
This weekend we traveled to Little Rock to the Arkansas-Mississippi State football game. One of the highlights of fall for me is traveling to the Little Rock games where we spend a little time with my family and my sister, dad, Jonathan and I go to the games. It’s our tradition and I love it.  We ran into a good friend of ours, one we don’t see often but we have common ground way beyond football. She has invested 30 years of her life into children with disabilities. We have some great conversations.  She has a pure love for individuals with Down syndrome and other disabilities. She has a true respect and a beautiful grasp of what all of it means.  She was sharing about a family (no names involved) she had just met who had a baby with Down syndrome.  Apparently some of the early tests showed a high risk for Down syndrome.  A nurse told them the sex of the baby followed with a comment that they might not want to know this because if the test confirmed the “baby was a Downs, they would want to abort.”
Sweet baby Rachel 4 months.
This appalled our friend.  This should appall us all.  We shared with her some stories we have heard from families through the years. Many stories where health care professionals made such judgments and insensitive statements. Many people who have never even met a person with Down syndrome but they feel comfortable interjecting their own personal views on a family during an emotionally fragile time.  We went on to share with her about the new prenatal tests that will be only a needle stick as early as 10 weeks into a pregnancy.  Like us, she is not opposed to tests but she was truly shocked by the stories of how biased information is presented to families and how openly celebratory some seem about “eliminating” the Down syndrome population.
jaffe age 3 looking back
Dr. Brian Skotko had an op-ed on this very subject in USA Today last week.  Under comments, this was posted by a reader: “just can’t imagine why with knowledge ahead of time one would allow the birth of a baby with any major mental or physical handicap to occur. You wouldn’t walk into a Best Buy and say, “Excuse me, I’d like to buy a broken television,” would you? So why would one allow a broken child to be born?”  I had a prenatal diagnosis.  There are days that I don’t like some of the things associated with Down syndrome. I make no secret that given a choice, I wish Rachel didn’t have Down syndrome.  I did not say that given a choice, there would not be a Rachel. I had that option available.  Even on the worst day, I would never want there to not be a Rachel. I hope you followed that.  My question for the broken toy guy is this: What do you do with people who break after we get them here?  Do we then start to determine that this person became addicted to drugs or alcohol so we need to get rid of them?  This person was in a serious car accident and has brain damage and physical limitations now. Do we get rid of her? Perhaps we could also apply that to poor parenting skills and eliminate those who are substandard parents as well.  There are lots of broken people in this world but most of the people I know who have Down syndrome can’t be included in that group.
For those of you who are Christ followers, a very wise friend said this to me in the early days of our knowledge that Rachel would be born with Down syndrome:  “It is okay for you not to want her to have Down syndrome. That doesn’t mean you don’t want her and that doesn’t lessen your faith.  Even Jesus told his Father, the creator of the universe, “not my will but yours be done” (Luke 22:42). With that, I will take mine with Down syndrome please.
rachel up close at 8th dance

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