That’s Gus and me during a visit to his home in Wisconsin (photo by Mike Knezovich).

A BBC News story titled Chaos, upheaval and exhaustion for Ukraine’s disabled children caught my attention earlier this week. The piece was written by Fergal Keane, a BBC News reporter who rode with a bus full of children with disabilities and their caregivers escaping Kharkiv to safety in Poland.

The city of Kharkiv was one of the first targeted in the Russian invasion. My heart goes out to these children, and, especially, to their parents. I know firsthand how heart wrenching it is to realize you can no longer keep a disabled child safe at home and resolve to find a group home or facility where they can get professional care. But having to say goodbye to your disabled child to keep them safe from war? Unimaginable.

The bus had been travelling for thirty hours when Keane was writing his story. The journey started with car rides through war-torn Kharkiv to the train station, then a train ride from east to west to finally board the bus. The trip to the train station was the childrens’ first trip outside of a bomb shelter since the Russian invasion began. In his story, Keane writes that “shells were falling close by and the noise sparked terror in the children.”

Many of you regular blog readers know our son Gus was born with developmental disabilities due to a genetic condition called Trisomy 12p. Gus can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him.

Gus communicates by crawling to whatever it is he needs. He can manipulate a wheelchair, too, and when he wants to hear music, he rolls himself to the piano. Gus laughs and sings with the tunes and claps with delight whenever he hears live music.

As a child, he loved to hold hands, especially while swinging on a porch swing. But as Gus grew bigger and stronger, Mike and I grew older. And weaker. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. We placed him on waiting lists all over the country, and when a facility four hours away contacted us to tell us they had an opening, we took it.

Gus cried his entire first week away. So did we. But we knew where he was, we knew who would be taking care of him, and we can go and visit him anytime. All luxuries these parents in Ukraine likely won’t have with their disabled children.

Unimaginable.

An earlier version of this post was published at the Easterseals National blog.

Sunday night we had a dinner party. Let’s say that again: Sunday night we had a dinner party!

My mom’s recipe.

It wasn’t the very first time we’ve had people over since Covid has quieted—but it was the most pre-covid normal. This time we weren’t wary and self-conscious—we were celebratory.

I did forget how exhausting it can be to cook a big meal and clean and all that. I also forgot how absolutely soul-satisfying it is to sit down and talk, laugh a lot, and eat a great meal together.

And, yes, it was a great meal. My mom, Esther Knezovich nee Latini, used to make manicotti for special occasions. And since Sunday was a very special occasion, I made it.

I worked off a hand-printed recipe written on brittle, stained, lined notebook paper. I’ve only made it a few times myself and it’s been years since I did. That’s partly because it’s so ambitious.

This manicotti—the kind I grew up with (like these)—rolls a cheese and spinach mixture inside of homemade crepes, not pasta. The result is a delicious filling in a delicate and light wrap. Topped with Bolognese sauce, it is to die for.

My crepe-making skills have rusted. Let’s just say that some of them came out sort of irregularly shaped. But that didn’t matter. With a green salad and Beth’s homemade bread and wine and a chocolate tart from a culinary friend for dessert and neighbors to share it all, it was divine.

This week two years ago, Illinois and Chicago shut down for what we thought would be a few weeks. Two days after that, I voted in a primary election. Two hours after that, I got the worst chills I’ve ever had, and readers know the rest of the story.

It’s not over because it’s never over until the fat lady sings and the dumbasses get vaccinated.

But it’s feeling pretty good.

When the American Society for the Prevention of Cruelty to Animals (ASPCA) selected Hanni and Beth: Safe & Sound as the winner of its Henry Bergh Children’s Book Award back in 2008, my sisters accompanied my second Seeing Eye dog Hanni and me to the American Library Association convention in Anaheim to receive the award. Stephanie Burke, the director at the library in Cliffside Park, New Jersey was in the audience along with her aunt, who teaches at an elementary school in Fairview, New Jersey. They introduced themselves to us, we hit it off right away, and before we all left the convention hall I thrust promotional postcards and flyers into their hands. “Hanni and I would love to come visit!”

Next thing you knew, we were off to New Jersey. Stephanie’s mom worked at a school in Fairview, too, so Hanni and I had not just one, not two, but three different gigs while we were there: one at Stephanie’s library, one at her aunt’s school, and one at her mom’s school.

After I’d booked my flight with Hanni to Newark, Stephanie generously offered to pick Hanni and me up there, drive us to our hotel, and chauffeur us to our library and school visits the next couple days.

Stephanie offered to take Hanni for walks when necessary, too. She even picked up afterwards when Hanni “emptied.” Now that’s a friend one never forgets!

Stephanie has kept up with our Safe & Sound blog ever since that visit (hi, Stephanie!) and wrote me directly last month to catch me up on things going on in her life. For one, she is married! Now her name is Stephanie Burke Bellucci, and their son Declan is in First Grade. “He attends the Academy of Our Lady of Grace, which you visited all those many years ago,” she wrote. “Time sure does fly!”

The day she wrote, Declan’s homework had included reading about a person and their Seeing Eye dog. “A very nice story in his school reading book,” Stephanie said, adding that she’d lent her copy of Hanni and Beth: Safe & Sound to Declan’s teacher, who read it out loud to the class the next day.

“I was wondering if there’s a way we could arrange a quick visit with you and the students in Declan’s class and the other First Grade class,” she wrote, commenting on how, thanks to the pandemic, Declan’s classroom is pretty high-tech now. “So you could join with a simple Zoom login and be projected on the white board,” she said. “Let me know if this is something we can coordinate.”

Of course I said yes. I mean, c’mon! Compared to all the things Stephanie had done for Hanni and me (see above, about picking up) during our in-person visit to New Jersey all those years ago, Zooming in with her son’s first grade classroom would be a breeze.

And it was.

What fun to hear questions from first-graders, so different from the questions I’ve been getting during visits to third-grade classrooms the past couple years. Some examples:

• • How do you make your books?
  • Who was your first guide dog?
  • What is your favorite book that you wrote?
  • How do you drive?
  • When did you start to be blind?
  • How can you draw the pictures for the books?
  • What ages were you when you went to the school when you were blind?
  • How did you know how to cook food and to pour water and to write the book if you were blind?
  • How do you go shopping?
  • Did you ever have a second guide dog?
  • How do you clean your house?

Pretty sure my answer to that last question was, “Not very well.” Or maybe I said, “Just ask Mike.”

For the first time ever, you can find out for yourself how I answered that (and all the other questions the first graders asked). How, you ask? Super-Stephanie saw to it that the Zoom event would be recorded, she sent it my way, my friend Sharon Kramer had it transcribed in to words, and my husband Mike Knezovich created a YouTube you can link to here or watch it below.

You know what they say: it takes a village. A big thank you to Sharon and Mike here in Chicago, and to Stephanie Burke Bellucci and the teachers and first graders at the Academy of Our Lady of Grace in New Jersey for helping make this all happen. You’re the greatest!

The original South Loop Neighbors Authors Night was cancelled due to a Chicago snowstorm, and the kind folks at Half Sour are welcoming us tonight. With covid numbers continuing to “retreat” now, we’re hoping more people will feel comfortable attending.

I and three other local authors will make presentations starting at 7:00 p.m. The presentations will be available on Zoom, too. (Be sure to get the updated Zoom link at the bottom of this post.)

Here’s the info:

South Loop Neighbors’ Authors Night at Half Sour, 755 S. Clark in Chicago. It’ll be at Bar 2. Enter Half Sour on Clark, then head all the way to the back and make a left into a cool, art-deco bar room

Wednesday, March 2, 2022

6:00 p.m. to 7:00 p.m. social hour (cash bar)
7:00 p.m. to 8:00 p.m. central time: presentations and Q&A

Authors will give ten-minute talks about our books and our lives as writers. Keeping the talks short should allow some time for questions after the presentations.

Thanks to Sandmeyer’s Bookstore, books will be available for purchase and we authors will be more than happy to sign copies for book buyers.

Oh, and Luna the Seeing Eye dog will be there, too.

Should be a nice neighborhood event. Very flattering to be one of the chosen authors along with Amy Bizzarri (111 Places in Chicago that You Must Not Miss);  Sylvester Boyd (The Road from Money); and Greg Borzo (Chicago’s Fabulous Fountains).

Can’t make it in person? Watch us online instead. Here’s the zoom info:

Meeting ID: 824 2688 5555

Passcode: SLN2022!

https://uic.zoom.us/j/82426885555?pwd=TTd6Z2ZienlaUkhkWG5YTituSldBZz09

Apologies for dereliction of blog duties the past few weeks. To be honest, I’ve just felt a little empty, with nothing to say.

Don’t worry, not that empty. I’m not despondent and no more or less anxious about the state of things than usual. In most ways, my life is as good as it’s ever been, save for the part about having more flesh, less hair, and having started my Medicare research. Gulp.

Maybe it can be summed up as broad dissonance. I’m more or less healthy, my work is meaningful and my colleagues are young and terrific. Beth is healthy and going gangbusters with her teaching. Gus is safe. I am fortunate.

Except recent events recall the height of the cold war, when nuclear obliteration was much nearer top of mind than it has been for a long while. And it’s been long enough since we lost our friend Janet that’s it’s really sinking in that I won’t see her again. That’s never going to be right.

A favorite movie of mine is Grand Canyon. The cast includes Danny Glover, Alfre Woodard, Steve Martin, Kevin Kline and Mary McDonnell. Kline and McDonnell play a couple whose  marriage is teetering—but the movie’s about a lot more than that eternal theme—give it a watch.

Anyway, there are several lines from that movie that are etched in my memory. These are three short ones:

Themes of this movie resonate today.

McDonnell’s character: Everything seems so close together.

Kline’s character: Hmm?

McDonnell: All the good and bad things in the world. Everything.

Last Thursday some generous friends treated Beth and me to dinner, followed by a performance of the Chicago Symphony Orchestra. The CSO is always magnificent but that night, Riccardo Muti conducted Beethoven’s 9^th. Though Beth and I have been to the symphony plenty, we’ve only seen guest conductors, so this was a real treat.

When Muti took the stage, he took the microphone and spoke briefly about the day’s news of the Russian invasion of Ukraine. I can’t remember precisely what he said—it was impassioned and solemn and heartfelt. What I do remember is his point: That the music he and the orchestra were about to perform was the opposite of what was going on in Ukraine. The opposite of hate, violence and war.

And when the 120+ strong chorus belted out Ode to Joy, they made his point