By Eileen Haupt, Co-founder of KIDS (Keep Infants with Down Syndrome)
A tender recent video gone viral, made by “50 mums, 50 kids, and one extra chromosome” for today’s celebration of World Down Syndrome Awareness Day, beautifully expresses the deep love that exists between mothers and their children with Down syndrome.
Sitting in their cars, performing their own version of carpool karaoke, they sign the lyrics to Christina Perri’s, “A Thousand Years,” joined by their adorable 4-year-old children with Down syndrome. The joy emanating from the mum and child duos in this musical exercise is impossible to miss. The playfulness of the duos, along with the hauntingly beautiful lyrics of Perri’s song, create a unique and beautiful portrait of the experience of having a child with Down syndrome.
For this video Perri’s lyrics fit perfectly:
Heart beats fast
Colors and promises
How to be brave?
How can I love when I’m afraid to fall?
But watching you stand alone
All of my doubt suddenly goes away somehow
One step closer
Juxtapose the happiness of these moms and children against two recent op-eds by Ruth Marcus, deputy editorial page editor of the Washington Post. Marcus candidly asserts that she would have aborted her “pregnancies” (in other words, her two children), had they been prenatally diagnosed with Down syndrome.
Congresswoman Cathy McMorris respectfully but powerfully responded to Marcus’s incredibly insensitive remarks. In turn Marcus suggests, “[R]espectfully, that while McMorris Rodgers’s choice was the right one for her and her family, it would not have been the right one for me and mine — nor for many others who reached out with their stories, both about living with relatives with Down syndrome and terminating such pregnancies.”
How can we possibly know that bringing a child with Down syndrome to birth is “not right” for us? When we haven’t held that baby, or looked into her eyes, or have seen her smile, or heard or laugh?
When we haven’t seen the impact that baby would have had on our “normal” sibling or siblings? Or grandparents, aunts, uncles, cousins, neighbors, friends, or school teachers? When we haven’t seen her take her first steps, and learn to read and learn Math, and make jokes?
Respectfully, Ms. Marcus, none of can possibly know that this child isn’t “right for our family.”
Consider: Is our “normal-at-birth” child who becomes diagnosed with autism as a toddler right for our family? How about the child who is diagnosed in childhood with some unexplained learning disability? How about the “normal” child who is in an accident and suffers brain damage? How about when cancer gets its grip on our “normal” child? What about a “normal” teen who develops an eating disorder, or becomes an alcoholic, or becomes addicted to painkillers or other drugs?
Are these children “right” for our families? Of course, they are. Do we not love them through it all, regardless? A child with Down syndrome is no different, and may, in fact, prove to be less challenging than children with some of these conditions and disorders that are not detected before birth.
There is no guarantee that our “perfect” child will always stay that way, or that we will get through motherhood without a broken heart.
No doubt, at least some of the mums in the karaoke video at first thought that their children were not right for their families. I’ll bet many of them cried when they first received the diagnosis and feared the unknown. They probably grieved the son or daughter they wanted to have.
But no doubt their babies with Down syndrome also transformed their sadness into joy, and they are now able to say that they wouldn’t change a thing.
Time stands still
Beauty in all she is
I will be brave
I will not let anything take away
What’s standing in front of me
How to be brave? When the culture, in its ignorance, tells the pregnant mother who has learned from prenatal testing that her unborn child has Down syndrome, that the child is better off dead?
Listen, instead, to the karaoke mums who sign the words to “A Thousand Years.” Whether they each knew their child’s diagnosis or not before birth, they demonstrate the unconditional love that generally comes naturally for their children.
Darling, don’t be afraid
I have loved you
For a thousand years
I’ll love you for a thousand more