It was a warm, spring day and I was sitting on a soft, blue bench waiting for a strawberry and banana smoothie I had ordered for lunch. My phone rang, I answered, and the nurse quietly asked for me.
With a hesitation that foretold what she was going to say, she slowly and apologetically told me my lab work proved negative for two of the pregnancy complications they were testing for, but was 90 percent positive for Down syndrome. I wasn’t shocked or upset, but I was a little numb. I stepped into a monthly four-hour meeting at my six-month-old job and just sat there, drinking my smoothie, wondering what my new life would look like now. It’s hard to process the kind of information that changes your world in an instant.
It is completely normal to go through a mourning period after learning a child will be born with Down syndrome or any other condition that will limit typical development. I didn’t mourn my little Noah, though. I already had the blessing of having multiple typical children, and I knew he would be special and add to our lives in ways we would appreciate. I did become defensive, though. I hated the reactions from family and friends who apologized for my loss. I understood their sentiments, but the idea that Noah would be anything “less than” ignited the angry mom inside me. And I was afraid he would be less than.
Everyone had so many questions, and I didn’t have any answers.
Yes, he will read. He will go to school. He will have a job. He will live a full and happy life.
Down syndrome, or Trisomy 21, is caused by an extra copy of the number 21 chromosome. The average life expectancy of a person with DS is 60. The National Association of Down Syndrome stresses that “the most important fact to know about individuals with Down syndrome is that they are more like others than they are different.”
And that is why the recent CBS report from Iceland is so tragic. CBS proclaimed that Iceland is “eradicating” DS births. The kick in the gut is that Iceland is eradicating DS births through prenatal testing and abortion. Multiple news outlets quickly reacted to CBS’s euphemistic report on eugenics in Iceland. They called out the fact that Iceland is not “eradicating” DS by cure or medicine, they are eradicating DS by killing those babies who test positive for it. An average of two babies with DS are born each year in Iceland. Two.
First, can you imagine being one of two people with a particular trait born in an entire country? In the United States, a baby with DS is born for every 792 live births. People with DS in Iceland have lost their community.
Second, the people of Iceland are missing out on experiencing the joy and happiness that people with DS exude. It is their gift. And in our lives of sickness and pain, failures and embarrassments, happiness is survival.
Yes, people with DS have more health problems than the average person, and their development is delayed. Approximately 40 percent have congenital heart defects. And many have respiratory, vision, hearing and/or thyroid conditions.
But their emotional intelligence – EQ – is off the charts. Noah can tell when someone across the room is sad or disappointed. He’ll go to that person and give him a big hug. He cradles his head in the crook of your neck and stays there, skin to skin, just loving you. You may think that’s no big deal, but researchers have found that hugging limits illness caused by stress.
The Utah Down Syndrome Foundation is celebrating its 40th year this Saturday at its annual Buddy Walk in West Jordan. Other events are also being held in Wellsville, Centerville and Washington City throughout September and October. The day is filled with fun and games that families enjoy together, in a community that supports and enriches the lives of those with DS.
It’s too simple to say that people with DS are here to help us be happy. That’s just a byproduct of their rich and vibrant community. They’re here to live full and happy lives, and they deserve a chance to thrive.
Because they are more like us than they are different.
Francisco Kjolseth | The Salt Lake Tribune Tribune staff. Michelle Quist.
Michelle Quist Mumford is an editorial writer for the Salt Lake Tribune who will be walking in the Buddy Walk this weekend while trying not to lose any children in the large park with hundreds of people.
Follow @MichelleLQuist