Today is International Down Syndrome Awareness Day. Get it? 3/21 or three chromosomes on #21. Clever.
Down Syndrome International encourages people all over the world to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. This year’s theme is “What I bring to my community.”
An adorable “carpool karaoke” video with 50 moms and their children with Down syndrome has gone viral. They lip sync and sign to Christina Perri’s “A Thousand Years” and it’s the cutest thing ever. They belong to a Facebook group called Designer Genes, a group for parents of children with Down syndrome born in 2013 and 2014. Perri and James Corden, well-known for his Carpool Karaoke with celebrities, have both retweeted and commented on it, driving views into the millions.
I was pleased to see that the baby Gerber has chosen to represent its company is a darling little guy with Down syndrome, Lucas Warren. He was chosen out of 140,000 other cute babies who had their pictures submitted to Gerber‘s search for the “nation’s cutest baby.”
Twenty-seven years ago, I was in Romania to adopt for the first time. One of the little girls we adopted — Alexandra — had Down syndrome. It was surprisingly difficult to even find her because, at that time, Romania did not want to admit any children in the country were born with any kind of differences.
She was 18 months old when she joined our family, weighing a mere 13 pounds. She came with scars on her head that were never had explained, but we wondered if someone had tried experimental surgery. It’s certainly possible. When we tried to give her a bath, she would scream and try to crawl up our arms so she didn’t have to touch the water, clearly terrified of what “bath” used to mean. She had handprint impressions on her tiny little body where she had been hit so often. Not surprisingly, she also had attachment disorder.
Here’s where my naïveté and unconscious bias showed up. I thought all kids with Down syndrome were the same: loving, happy, able to walk and talk. Not so. Like literally all children, Alexandra was unique.
She learned to be happy, but first she was terrified of people. She literally cried every time she was held for the first year and a half she was home — and she absolutely hated the camera. Family pictures from that era have four smiling children and one wailing. Every. Single. Time.
She became happy, but she first had to learn how to trust. She never did learn to walk, but she did a funny snowplow stance with her head on the ground and bum in the air that got her around the house. She also was never able to talk verbally, but she did learn a few signs. “More,” “milk,” “cracker,” “thank you,” “hungry.” And, most touching, “I love you.”
She passed away when she was 5½, almost 23 years ago. She changed the small community of our home and neighborhood.
I love that we have Down Syndrome Awareness Day. I’m horrified that far too many moms who find out they are pregnant with a baby with Down syndrome choose abortion. The waiting list of parents wanting to adopt a child with Down syndrome is miles long. The blessings of raising a child with Down syndrome are immeasurable.
Happy 3/21!
Holly Richardson
Holly Richardson, a Salt Lake Tribune columnist, loves to connect with other moms who have children with disabilities. We are a tribe and I hear you.