Kerry and I came up with a few mantras that guided the approach we took to raising Jillian. They’re universally relevant thoughts that I employ just about every day. The biggest:
1. See Jillian. Don’t look at her. Very often as parents of special-needs kids, perception is our biggest hurdle. Once we clear that one, everything else goes smoother. Do not judge Jillian by what she looks like. See her for who she is. Seeing requires empathy and engagement. It is active. Looking is passive and judgmental.
In my book about Jillian, An Uncomplicated Life, I suggest that seeing someone isn’t merely a necessity. It’s a basic civil right, Imagine the human potential we’ve wasted in this country over the centuries, because we looked at people rather than saw them.
2. Expect. Don’t accept. Know the law when it comes to your child’s education rights. Expect it to be followed. Accept nothing less. So often, we don’t get what we expect or want. We get what we’re willing to put up with. Expecting and not accepting is the difference between battling and settling.
3. All you can do is all you can do. Live in the moment. Raising a special-needs child requires a lack of memory and a tight-fist focus. Dwelling over yesterday is a waste of time. Pondering tomorrow can be overwhelming. Kerry and I always asked ourselves, “What can we do today, this moment, to make Jillian’s life better?”
As I wrote in the previous post, living in the moment also means slowing your pace, which is a wonderful thing.
4. We’re only as good as the way we treat each other. Jillian taught us this, both by how she treats people, and how people treat her. Those who have taken the time to See her have been rewarded with a forever friend who owns no guile or agendas, and passes no judgment. Jillian makes you feel good for knowing her. She inspires our better selves.
In line with that, I’m going to try to offer phrases here every day, taken from the book, that hopefully will resonate with you.
Today’s phrase is a quote from Jillian, when she was about 15. A little background:
Jillian had been sick with a chest cold all morning. Since I work mostly at home, I was there with her, rubbing her back and fetching her Kleenex as she expelled mucous into a waste basket. By mid-afternoon, Jillian felt well enough to get out for a quick workout at our local YMCA. She thanked me for nursing her all morning.
“Of course, Jills,” I said.
Then, she said this:
“If you love someone, they’ll love you back.”
I’m not sure our existence gets any better or more easily understood than that.
Check back here often, for more mini-inspirations. We’re all very lucky to have kids who inspire.
You can also find a lot of these on the Twitter feed @jilliansbook.