Posts Tagged 'Gus Knezovich'

Okay, here’s how it is

Me with Gus at lunch in Wisconsin.

It’s our son’s birthday! Gus is, gasp, twenty-five years old today. Seems a fitting occasion to dust off one of the first essays I wrote and recorded for National Public Radio:

Commentator Beth Finke describes the struggle of placing her developmentally disabled son into a group home and the unexpected relief it’s brought both of them.

You can listen to the essay from the NPR site, but if you’d rather read it, hey, I’ll print the transcript here, too. First, though, some back story.

My producer/coach on this piece was Ari Shapiro. These days Ari reports on the White House for NPR, but back then he was a mere voice in my headphones, coaching me to sound more natural during the recording session. My speech was particularly stilted on the first line, “Our teenage son wears diapers.” I tried it over and over, and over and over again, until Ari came up with a brilliant solution. “Start out saying, ‘Okay, here’s how it is,’” he suggested. “Then say the first line.”

It worked. Sound engineers edited out those first five words, and when I start talking about Gus in the finished piece it sounds like I’m talking to you from across the kitchen table. Here’s the transcript of that essay:

Our teenage son wears diapers. He can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him. Gus’ genetic condition doesn’t have a name like Downs or Asperger’s. It’s known by its clinical description: Trisomy 12p.

Mike loved his son from the day Gus was born. It took me a lot longer. Truth is, I was angry at Gus. He wasn’t the baby I expected. A baby was supposed to bring us joy. The way I saw it, Gus brought nothing but trouble.

I did therapeutic exercises with Gus. I cuddled him, played the piano for him. But none of it was heartfelt.
Until one night, when I was singing Gus to sleep. Suddenly understanding washed over me: None of this was Gus’ fault.

“You didn’t want it to be like this,” I said, starting to cry now. “It’s not your fault, is it?” Over and over I repeated it. “It’s not your fault, Gus.” I kissed and hugged him, finally able to love him and to tell him so.

Sixteen years later, Gus communicates by crawling to whatever it is he needs. When he wants to hear music, for example, he scoots to the piano. Gus laughs and sings with the tunes, and claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing.

But as Gus has grown bigger, Mike and I have grown older. Shortly after Gus’s sixteenth birthday, we realized it was time for him to move away. We HAD HOPED to have Gus live near enough to drop by, TO take him out for ice cream, have him for an occasional weekend. Like so many other states, however, ours is in a budget crisis. IT’S ALREADY SHUT a residential facility that was home to hundreds of people with developmental disabilities.

Realizing the waiting time for Gus would grow even longer, Mike and I placed him on waiting Lists all over the country. A facility four hours away contacted us last summer. They had an opening.

Gus cried his entire first weekend away. So did we. “It’ll take some time for us to all get used to each other,” the social worker assured us over the phone. On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter, realizing it really was me. When I stood him up to transfer him from the wheelchair to the car so he could join us for lunch, I realized how much he’d grown. He was up to my chin!

As I leaned down to kiss Gus goodbye, he took off. Couldn’t wait to wheel himself back to his friends in the activity center. Now, when we visit Gus, it’s all fun. No hoisting him onto the toilet, no muscling him into the shower, no changing his diapers. No drudgery.
He seems relieved, too, finally allowed to do things independently of his parents. Hmmm…maybe Gus has more in common with other teenagers than I thought.

Today, nine years after Gus left home and that piece aired on NPR, I raise my cup of java to our 25-year-old and the dedicated staff at Bethesda Lutheran Communities who make his life — and ours — so wonderful. Happy birthday, dear Gus. Happy birthday to you.

A Father’s Journey to Understand His Extraordinary Son

My guest blogger returns! Here’s a book review from my husband.

What we can learn from people like Gus

by Mike Knezovich

This is a great book, but I'm not linking to Amazon. Go get it or order it at your local bookstore.

As many of you are lucky to know, Beth has a knack for giving poignant, thoughtful gifts. She was true to form this past Father’s Day when she gave me a book called The Boy in the Moon. I just finished it. And what a read.

Beth doesn’t mention our son Gus very often in these blog posts of hers. Like other parents, we love our son. Think about him. Worry about him. But loving a child who has severe disabilities can be difficult to explain, so we tend not to try.

As for me, I admit I wonder what people think of what it’s like raising a son like Gus. I can get angry if I detect pity — or condescension — toward Gus, toward me and Beth, or the unspoken wonder that we could love a kid like Gus. And I can get hurt if people don’t ask or don’t know how to ask about our son. And then, when they do, sometimes they don’t really want to hear the answer.

Over time, I have come to understand that Gus, and life with him, simply had to be a mystery to others. After all, our son’s life has been—at least in real time—something of a mystery to me. Gus lived with us at home for 16 years, and all that time I had no way of telling others what it was like. And I have no way of telling people what it is like having him live away from us, either.

Now I don’t have to. Ian Brown, a writer for the Toronto Globe & Mail, has done it for me, and he’s done it better than I could hope to in his book The Boy in the Moon. So here’s a request: Go out and buy The Boy in the Moon. And read it as soon as you can fit it into your schedule.

That's Gus and Beth at a lunch date near his home in Wisconsin.

I’m not asking you to do this just for me and Beth and Gus. I do admit to selfish motives, though. If you read this book—which is the author’s account of raising and trying to understand his son Walker, who has a rare genetic disorder that leaves him with multiple disabilities—you will know what it has been like raising Gus. Ian Brown’s accounts are superbly written and uncannily similar to my memories—from receiving the genetic diagnosis to the 16 years of sleep deprivation to what it was like to parade around hyper-normal places like Disney World when things are not normal.

But more than that, you will understand why it all was worth it. As the author writes about his son Walker, “Everything about him compels me, unless it terrifies me, and sometimes it does both.”

The first half or so of the book covers Brown’s experience as a parent and a husband, but the rest is a look at what disabled people like Gus and Walker have to offer the rest of us. What they can teach us. You might be skeptical that they can. Or anticipate saccharine platitudes. I understand. But it’s richer and more complicated than that.

Beth and I and other families and caretakers know that people like Walker and Gus teach us extraordinary things. This book explains how and why better than I can—I hope you’ll read it.

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April 2014
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