There was no Internet in 1989, when our daughter Jillian was born with Down syndrome. No worldwide web of information and consolation, no virtual gatherings of hoping and coping. Only a few well-meaning folks from Good Samaritan Hospital and the local Down syndrome association, stopping by the hospital room to drop off flyers and brochures that were essentially little catalogs of what our daughter would never do.
We accepted their kindness. Then we threw everything in the trash.
My wife Kerry and I didn’t know much about Down syndrome. We knew a little about raising a child; Jillian’s brother Kelly was three years older. We did know one thing. We held it as an article of faith, whether our child was born with a disability or not: Let your children define themselves.
Don’t assume or stereotype or preconceive. Allow your children to tell you who they will be and how far they will go.
From the awful day Jillian was born to every beautiful and perfect day thereafter, we let Jillian be Jillian. As she got older and entered school, we demanded that others do likewise. You wouldn’t chain your “typical” child to a narrow pre-judgment. Why would you do that to a child with a disability?
Kerry and I developed three mantras when it came to raising our daughter. They were essential to our journey; they can be beneficial to anyone’s journey.
Expect, don’t accept. We don’t often get what we expect in life. We rarely get what we think we deserve. We get what we’re willing to put up with. When it came to Jillian’s education, we didn’t put up with much. We expected Jillian to be treated like any other student. We accepted nothing less.
See, don’t look. Seeing is open, empathetic, and engaged. Looking is lazy and judgmental. See Jillian for who she is. Do not look at her and judge. Think of how much better the world would be if everyone lived that lesson.
Seize the moment. Then linger in it. Jillian achieved almost everything any kid achieved. It just took longer. The longer we spent getting Jillian from A to B, the more we savored the journey. It could take her 10 minutes to learn to spell a one-syllable word. It took her a month to master a two-wheeler. You don’t put in that kind of time, then not enjoy the success when it happens. Take time. Make time. The little wins are just as important. Even now, nearly three decades later, I pause every day to appreciate something: a sunset, a well-struck golf shot, the feel of Kerry’s hand in mine. Life is better when we slow down to enjoy it.
Jillian turned 29 recently. She defied all the words in those well-intended flyers. She graduated high school and attended four years of college at Northern Kentucky University. We ride 20 miles on the Little Miami Bike Trail. Jillian works two jobs, and she has a dog. She has been married for three years. Jillian and Ryan live in a two-bedroom townhouse for which they pay all the rent. They’re completely self-sufficient.
They shop for groceries and walk Gracie the dog. They cook, they clean, they have date nights, they’re active citizens of the world. All we did was give them the same opportunities we’d give any of our children.
Everyone deserves the chance to live a dream. No one should be judged without having that chance. Hearts and minds work best when they’re open.