Mondays with Mike: The kindness of strangers

September 1, 2014 • Posted in blindness, Mike Knezovich, Mondays with Mike, parenting a child with special needs, Uncategorized by

Every time we visit our son Gus in his little yellow house in the quiet little town of Watertown, Wis., we love seeing him. And we are always, just a little, discombobulated. Even after 12 years of his living away from us.

Gus and Beth.

Gus and Beth.

Gus is severely disabled. He can’t talk. He can walk a short distance, clumsily, using a walker, but he spends more time in his wheelchair—which he can propel and steer well enough to get around the little ranch home he shares with three other developmentally disabled guys, and with the staff of Bethesda Lutheran Communities, which operates the home.

He invariably recognizes us, letting us know by letting out a sort of shriek of joy, just as he claps his hands right in front of his face. He makes Gus noises—anyone who’s been around him knows what that means. For those who haven’t, I don’t think I can describe them adequately. But they tell you a lot—whether he’s happy, sad, puzzled, anxious.

Saturday—when we visited to celebrate (in advance of his 28th birthday on September 3)—he was especially pleased to see us. The shrieks and claps and laughs went on pretty much all afternoon.

We walked him in his wheelchair to the little park across the street. We wheeled up to a picnic table, where Beth reclined to catch some rays. Some kids were there—and it was a scene that I remember well from my youth but which I rarely see today. They were anywhere from, o,h 5 to 11 years old. They were playing kickball on the baseball diamond, while their bikes sat parked near the pavilion.

Beth caught a few rays on Saturday.

Beth caught a few rays on Saturday.

There were arguments about in-bounds and out-of-bounds, cries of joy when some one kicked a good one. And then they broke up and reconvened to start a new game of dodgeball of sorts on the playground. It was a game that an outsider could only partly understand, but they clearly had crafted and memorized their own rules.

What really stood out about the whole scene: There was not an adult in sight. The kids had organized this themselves. It was straight out of our childhoods. During summer vacation, we’d leave early and come back late. Entertaining ourselves with invented games, getting bored, inventing new ones. It all was kind of quietly astounding, a dreamy escape to the past.

Gus enjoyed it all, too. He can tell when people are having fun, and he gets tickled by that.

While we sat and took in the breeze and the sun, a little guy—the one I reckon to be 5—came by to pet Whitney, who was off harness. He told us about his dog. Pointing to Gus, he asked whether “that guy broke his knee.” After some back and forth, we surmised that his grandma had “broke her” knee and had been in a wheelchair, hence the question.

We eventually said goodbye and walked Gus back home. We said our goodbyes. It was a good visit.

When he first moved away, we’d stay longer, and usually stay overnight. Things changed when we realized: He’s happy to see us, but really, he’s got his own life now. Not like our contemporaries’ kids—who are going off to college, starting careers and such. But it’s his life nonetheless. He’s happy to see us, we’re happy to see him. It’s our normal.

Always, I wish we lived closer than the 2-1/2 hour drive we have, so we could just drop by when we felt like it.

But always, I leave grateful that he has a home. That he’s done just fine out of our house. There have been glitches, sure, but there were glitches when he lived with us. We didn’t get everything right.

There was a time when I thought I could never let him live elsewhere. To trust him to the world. That’s what all parents have to do. In that way, Beth and I are like all parents who watch their kids leave. Except we’re not. Of course we’re not.

Years ago Beth, in her infinite wisdom, arranged for me to talk to another father who’d thought the same way about his son as I did—no one can take care of Gus like we can. Like I can. And this father ended up hitting an inevitable wall.

That helped me see ahead, and realize, I needed to learn to trust Gus to the world. For me, for Beth, and for him. So far the world’s doing a good job.

Jamie On September 1, 2014 at 12:07 pm

Beth looks like a super model and Gus looks so old now!

Monica Joyce On September 1, 2014 at 12:12 pm

Hi Beth and Mike,

I always love catching up on Gus. He was born shortly after my son Ian was. So happy to hear how happy he is. Monica Joyce

Dean Fischer On September 1, 2014 at 12:19 pm

Thanks Mike. I enjoyed this story of your day with Gus.

Hank On September 1, 2014 at 12:27 pm

Another great piece, Mike. Glad Gus is doing well.

Kim On September 1, 2014 at 1:49 pm

Mike, I started following Beth’s blog because I was interested in Seeing Eye dogs. I live near Nashville TN and work at a facility called Brightstone. Brightstone provides a work and social environment for adults like Gus. My colleagues and I adore the adults we’ve been entrusted with and we try to help them have the best lives possible. I bet that’s also true of the people who care for Gus. Those of us who choose this type of work aren’t in it for the money– we do it for joy. I’m glad your son is doing well. I understand how hard it was for you to let him go. Tell Beth “Hi!”

Mike On September 3, 2014 at 8:09 am

Kim, thanks for weighing in. I learned about DD folks from my sister, who worked a great deal of her life with those folks. She sincerely enjoyed them, and I learned why when I met them. You folks mean the world to your people and to their people. Thanks.

suemartin571563429 On September 1, 2014 at 5:58 pm

Great post Mike. I
have often wondered about Gus, since reading Beth’s book, Long Time No See. It’s wonderful to know that he is doing so well. It™is wonderful to know that all three of you have reached a place where you are all happy and comfortable. I could picture the yello house and the children playing their games, recognizable and made-up.

Doug On September 2, 2014 at 8:12 am

Wonderful, loving, thoughtful

Bev On September 2, 2014 at 1:37 pm

I can just hear the shrieks, claps and laughs. Sounds like it was a great visit!

Fancy Nischer On September 2, 2014 at 3:34 pm

I have not met Gus but that was very touching. I can feel the joy of Gus in your writings! I am going to recommend your blog to a friend of mine with a disabled child. He is blind and has a muscle disease – but a joy of their life. Thanks for the insight!

Monna Ray On September 2, 2014 at 4:10 pm

Thanks for the story of your visit. I feel like I know your family now and want to hear your stories. Monna

Sheila A. Donovan On September 2, 2014 at 7:27 pm

It’s marvelous that Gus is able to recognize you and is able to express his excitement and joy about your visits.

Chris G On September 3, 2014 at 8:00 am

Happy Birthday, Gus! I hope he has many reasons to laugh today.

Mel Theobald On September 3, 2014 at 10:16 am

Happy Birthday Gus. Beth and Mike, like so many others who have not met him except on the pages of LTNS, it is a joy to have this update. Beautiful.

Colleen On September 3, 2014 at 3:14 pm

Well said, Mike. Happy Birthday Gus!

Sandra On September 3, 2014 at 3:37 pm

Enter your comment here…Happy birthday Gus!!!

Sandra On September 3, 2014 at 3:38 pm

Happy birthday Gus!!!

Judy Spock On September 4, 2014 at 12:35 pm

Thank you for this heartening account. What we Œknow and don’t varies infinitely, but what we Œfeel is universal, and Gus has it just right…! xxoo Judy

Mondays with Mike: Boy in the Moon | Safe & Sound blog On September 8, 2014 at 8:53 am

[…] here. We got such a great response to that beautiful post Mike wrote last week about our visit with Gus that I asked him if he’d be willing to let me re-blog a book review he […]

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