Mondays with Mike: There but for the grace…

We’re thankful Gus is happy up in Wisconsin.

We had a two-turkey Thanksgiving, with a different set of great friends on two consecutive nights. I am thankful for, among other things, the extra notches on my belt.

Of course I’m thankful for a lot more. The aforesaid friends, my nephew Aaron and his children, Beth and her million-member family, living two L stops away from White Sox park, a great sounding stereo, the list goes on and on.

In the background, always, there is thankfulness for the people in Watertown, Wisconsin, at Bethesda Lutheran Communities. They house and care for our son, Gus—and for lots and lots of others with developmental disabilities. And I’m thankful that my fellow Americans have deemed Gus and people like Gus worthy of our care. That we all take heed to the idea that the measure of our society is how we care for the most vulnerable.

But in the shadow of that thankfulness is searing fear and smothering dread. Fear that the rug will be pulled out from under Gus and his housemates—a real possibility if some have their way—and dread that we simply wouldn’t know what to do if that happened. I’m in relatively good health and reasonably fit—but I struggle to get Gus in and out of his wheelchair these days, let alone in and out of a shower or a car seat.

That’s why a supremely sad story that played to an end yesterday has lodged in my consciousness and probably isn’t going away anytime soon. A 57-year-old woman was found dead in her Schaumburg house on Saturday, an apparent suicide.

The woman. Bonnie Liltz, was scheduled to go back to prison today, after she’d been released for several months to receive health care she couldn’t get in prison.

A couple years earlier, Liltz had pleaded guilty to involuntary manslaughter—she’d given her severely disabled, 28-year-old daughter Courtney a fatal dose of medication through Courtney’s feeding tube.

Liltz had serious health issues of her own, and she succumbed to the fear and dread I just mentioned—she couldn’t bear to think about how or if her daughter would be cared for if she died. Or what would happen when her own deteriorating health made it impossible to care for her daughter.

It was a reasonable concern, even if you think Liltz’s actions were not reasonable. Illinois routinely ranks near the bottom of 50 states in terms of care available for the developmentally disabled population. It’s shameful—and it’s a large reason we travel 2-1/2 hours to see our son, Gus. Wisconsin, as well as pretty much every other state, does a lot better job. Much poorer states, by per capita income, do a whole lot better—I put at least some of it down to the corruption tax we all pay here in Illinois, but that’s for another blog post.

Liltz had been sentenced to four years. She served several months before being released conditionally for medical care. She apparently couldn’t bear returning to prison knowing she was very likely to die there.

I completely understand that the court held Liltz to account. Even if she was motivated by her love for her daughter, it’s a slippery slope when we start thinking about treating people like our son Gus or her daughter Courtney differently under the law because of their disabilities.

So yes, a crime was committed. But I can’t consider Liltz a criminal. I think I’ve traveled some of the same roads she traveled. Fortunately, I never reached the point she did. But I‘ve been close enough to see it.