My granddaughter, Lucy, has Down syndrome. When she was born 11 years ago and I heard these words, I was shattered.
Stereotypes take a long time to die. My head was full of them, despite knowing Chris McLean, who has Down syndrome and has been part of our extended family for more than 40 years, despite having watched the television series “Life Goes On” and seeing how much a person with Down syndrome can accomplish.
I boomeranged back to images I’d seen as a child and articles I’d read then, and worried about Lucy’s future and our future as a family. How could we live with fear and sadness and worry the rest of our lives?
The beginning of everything is the hardest. When you have a baby with Down syndrome, the beginning is extra hard. Doctors tell you all the medical issues that might arise with your perfectly beautiful newborn, and it’s overwhelming. If every baby placed in a mother’s arms came with a long list of life’s tragedies that statistically might happen, women would stop having children.
Eleven years later I’m aware that the journey has not been without challenges. Fear and sadness and worry come and go in everybody’s life. The difference is that life with a typical kid is like a ride on the freeway. There are some stops and starts, traffic, bridge repairs, closed exits, and there are accidents now and then, sometimes fatal ones. But mostly it’s 60 m.p.h., no detours, no traffic lights, no potholes.
Life with a kid who has Down syndrome or autism or Asperger’s or cerebral palsy or muscular dystrophy or anything that makes her different from most everyone else is like traveling a country road in Maine.
The road is narrow and it’s hilly and it twists and turns, and for long stretches you’re all alone on that road. And it’s always slow going, stop signs and animal crossings and sleepy little towns where the speed limit is actually enforced. And when it rains the road is slick and dangerous. And when it snows it is almost impassable. And sometimes you wish there were an exit to a well-lit, smooth, straight highway.
But there isn’t.
But there are people you meet along the way on these country roads, people just like you who are on the same journey. Plus extraordinary, ordinary people everywhere who feed you and fill your car with gas and smile and look at your child in the back seat and talk to her because they really care.
October is National Down Syndrome Awareness month. In Massachusetts, we celebrate this with an Annual Buddy Walk and Family Picnic around Lake Quannapowitt in Wakefield. Eleven years ago, I didn’t know about this walk. I didn’t know that so many love and care about people with Down syndrome. And I didn’t know how that love and care grow and spread to other people who are different.
Eleven years later, I still wish I could make every challenge for every person I love disappear. I wish I could take away just as I wish I could take away diabetes and cystic fibrosis and muscular dystrophy and cancer and heart disease and worn-out knees and macular degeneration and anything and everything that makes life harder than it already is.
But I would never take away Lucy. Lucy is a perfect soul in an imperfect body. Everything she does we celebrate. That’s what you do when you’re on a country road.
You celebrate the beauty of daisies growing wild on the side of a road, a hot-pink front door, a misty meadow at dawn, deer in that meadow, and a child who struggles so hard with speech, finally speaking in sentences.
You see so much beauty when you’re forced to slow down. You see magnificence.