When Jillian was in college at Northern Kentucky University, Kerry and I made a habit of checking her bank balance. Jillian’s concept of money was not the greatest. She assumed it flowed endlessly, and once wrote herself a check for $500 when she needed spending cash. We didn’t want her bouncing checks.
This was of greatest concern around the holidays. Suddenly, we’d see substantial dollars evacuating the bottom line. “Where’s your money going?”
“I buy gifts,” she said.
Gift cards for people in the men’s basketball office. (She was a manager on the team). Lunches for players. The generosity was nice, and typical Jillian. Even if mom and dad ended up subsidizing some of it.
This time of the year is made for our kids born with Down syndrome. They are what the season should be: Grateful and giving, mindful and kind. Happy.
Jillian’s greatest strengths are our greatest weaknesses. She owns none of our wasteful emotions: Anger and jealousy, agendas and guile. She gets the big stuff right. Whom she loves and who loves her. I don’t think she’s unique. Jillian is, in fact, typical of our children.
In An Uncomplicated Life, the memoir I wrote of Jillian’s first 25 years, I included a chapter titled “Number 47” a reference to the 47th chromosome that defines her Down syndrome:
“Number 47 contains a lot that makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness, a plan for how to be better. Number 47 puts out the fires of ego and envy, vanity and guile. Thanks to 47, Jillian lives a life of joy, giving and receiving in equal time. Nothing defines her more. Number 47 isn’t a governor on her aspirations. It’s an extra storage tank for all her good stuff.”
The holidays should be a time of joy. Often, they are a time of lamentation. Why do I feel so lonely? Where do I fit? The season makes us wonder what makes happiness, and if we are doing all we can to achieve it and share it. It’s a good time for introspection.
I wish for a few things every year at this time: Health for loved ones, gratitude for family and friends, mindfulness for all I have. I wish for the ability to retain some of that, every day of the year.
Jillian comes by it naturally.
I’ve never liked the term “special” as applied to our kids. We all think all our kids are special. We believed Jillian was special just because she was our child. There is an exception to that logic, though. When it comes to grasping what the spirit of the season means — and living that spirit all the time — Jillian is special. Same as all our kids born with Down syndrome. We have a lot to learn from them.
Thanks for reading.
Expect. Don’t Accept.