The Power of Living in the Moment
Jillian’s disability forced us to slow down. Which allowed us not just to live, but to have a life. The suburban dream exacts a toll. In time, mostly. We are so busy chasing what’s next, we lose sight of what’s right in front of us. We don’t take the time. We’re too busy. As John Lennon put it, “Life is what happens when we’re busy making other plans.’’
Kerry and I couldn’t tell you the first time our typical son Kelly tied his shoes or spelled a simple word correctly. I don’t recall even helping Kelly learn to ride a bike.
Because Jillian’s triumphs took longer and were harder won, I remember all of them. It took her two months to ride the bike. I will never forget the moment I finally let go of the back of the bicycle seat.
Being present in the moment is the difference between seeing a sunset and imagining one. It took Jillian two hours to spell the word “store’’. When she finally did it, I danced around the kitchen table like we’d just won the lottery.
“S-T-O-R-E,’’ I shouted. “Store, store, store!’’
We need the little moments in our lives. The little wins. Without them, and the work needed to attain them, the big wins lose their meaning.
Expect, Don’t Accept
We don’t often get what we expect in life. Most often, we get what we’re willing to put up with. That goes for big corporations and small gatherings around a school conference table, where parents and educators determine the academic futures of people with special needs.
The Individualized Educational Program (IEP) is based loosely on the notion that everyone involved wants what’s best for the student. This is the case for parents who are content to accept what the educators deem is best.
We didn’t. We expected Jillian to be educated in a regular-ed classroom, with an aide, and with federally mandated special programs, if needed. This took money, and money meant fighting.
Expect Don’t Accept stands as a guiding principle for everything we want in life, and everything we stand for. It is a big reason Jillian’s story transcends special needs, because it involves persistence, courage, hope and vision.
It’s possible to get what we expect. But only if we dedicate ourselves to the pursuit.
See, Don't Look
Seeing requires empathy, not sympathy. Don’t judge my daughter for what she looks like. See her for who she is. Seeing is active and engaged. Looking is passive and encourages judgment.
Seeing is a civil right. Imagine the human potential squandered over the centuries, by people who looked without seeing.
An Uncomplicated Life tells Jillian’s story, from the day she was born until the day she became engaged. It’s inspirational, it’s joyful, it’s emotional, it’s instructive. You’ll feel good for having met the protagonist. And uplifted. Jillian is who all of us could be, if we chose to be our best selves.