She Isn’t the Sister I Wanted, but She Is Who We All Needed

My sister with Down syndrome isn’t the sister I wanted. But she is exactly the sister I needed. And every family member and friend who knows her feels the same.

Over the weekend, Ruth Marcus wrote in her article in the The Washington Post entitled “I would’ve aborted a fetus with Down syndrome. Women need that right” …

“That was not the child I wanted. That was not the choice I would have made. You can call me selfish, or worse, but I am in good company.”

It was published on the day I celebrated my 39th birthday with my parents and older sister who has Down syndrome. She wrote “For Sandra Peoples: open on your birthday!” on the front of my card and slipped a $20 inside. Although she’s well known in our family for sending birthday cards, it’s pretty special when she includes some of her hard-earned cash. One of her many gifts is making others feel special on their birthdays.

When she was born in 1977, my parents and the doctors didn’t know life would look like for her and for us today. In fact, a young doctor took my dad into a supply closet and offered not to perform the life-saving surgery she needed on her digestive track if my parents wanted her to die just days after her birth. There was no prenatal detection, so abortion based on her diagnosis hadn’t been an option, but this was pretty close. My parents refused, believing her life was valuable. And that decision changed our lives in hundreds of ways, but all for the better.

Marcus also writes,

I respect—I admire—families that knowingly welcome a baby with Down syndrome into their lives. Certainly, to be a parent is to take the risks that accompany parenting; you love your child for who she is, not what you want her to be.

But accepting that essential truth is different from compelling a woman to give birth to a child whose intellectual capacity will be impaired, whose life choices will be limited, whose health may be compromised. Most children with Down syndrome have mild to moderate cognitive impairment, meaning an IQ between 55 and 70 (mild) or between 35 and 55 (moderate). This means limited capacity for independent living and financial security; Down syndrome is life-altering for the entire family.

Down syndrome is life-altering for the entire family. But so are many other things you can’t detect with prenatal screening. Like my son’s autism. Like divorce. Like dementia. Like diabetes. Like unemployment. Like a food allergy. Diagnoses and disappointments come into all of our lives, whether we choose them or not.

What you can control is loving your child for who she is, not what you want her to be.

(And loving your sibling for who she is, not what you want her to be. And my boys loving their aunt for who she is. And my husband loving his sister-in-law for who she is.)

Wednesday, March 21st is World Down Syndrome Day (celebrated then because people with Down syndrome have a 3rd copy of their 21st chromosome, Trisomy 21). I hope the voices of those of us who know and love people with Down syndrome will speak loud and clear about the blessings they bring to our lives, not because of what they can or can’t do, but simply because of who they are—created in the image of God. 

Sandra Peoples is the editor for Key Ministry and Not Alone on Patheos. She is also the author of Held: Learning to Live in God’s Grip (a Bible study for special-needs parents) and the upcoming Unexpected Blessings: The Joys and Possibilities of Life in a Special-Needs Family.