Beth 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 wrote here a few years ago. Here it is.

A Father’s Journey to Understand His Extraordinary Son

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.

The Bears open their season at Soldier Field today, and though I’m not much of a football fan, I’ll be cheering on Chicago quarterback Jay Cutler. He was 25 and quarterbacking for the Denver Broncos when he was diagnosed with Type I diabetes, joining a team of 2 million other Americans like me who live with the chronic disease every day.

Diabetes is a difficult disease to understand, in large part because of the two different types. Type I is the one that was formerly known as juvenile diabetes, Type II used to be called adult onset diabetes, and both diseases have to do with insulin, which helps move sugar from the blood into cells for energy.

A person who has Type II still has a pancreas that produces insulin, but in some cases because the person has a poor diet and/or is overweight, their pancreas just can’t keep up. In others, people develop a kind of insulin resistance which limits the effectiveness of insulin. Many of the people diagnosed with Type II diabetes can improve the condition (even reduce or eliminate the need for insulin injections altogether) by watching their diet and exercising.

A person diagnosed with Type I diabetes has a pancreas that doesn’t work at all — it doesn’t produce any insulin. No matter what we do (exercise, diet, whatever) our bodies will not make insulin. We either have to take multiple injections of insulin throughout the day, or wear an insulin pump.

There is no behavior that causes Type I–it’s an autoimmune disease — some trigger wrongly tells the body to attack the cells that produce insulin. It usually occurs in childhood. I was diagnosed when I was seven years old, long before short-acting insulin, home blood glucose monitors or insulin pumps came on the scene. In recent years it has become increasingly common for people Cutler’s age or older to be diagnosed with Type I, and thanks to advances in care of Type I, we can test our blood sugar levels regularly at home and give ourselves insulin throughout the day to match our food intake and exercise levels. The more we test our sugar levels, the easier it is to walk the tightrope between high and low blood sugars.

It’s never a walk in the park, though, and I cannot imagine what it must be like for someone to walk that tightrope with millions of people watching TV as he fends off 300+-pound gorillas rushing to knock him down. In an interview in Diabetes Forecast magazine, Cutler was asked how he uses a blood glucose monitor to check his blood sugar level on game days. His answer:

I check my blood sugar about four or five times before the game—try to stay around 150 to 160 [mg/dl] before kickoff. Most of the time, I prick my finger every time we come off the field, especially in the first half.

When asked if he worried whether his teammates, the media, or fans might blame his Type I diabetes as a reason for poor performance, Cutler said he didn’t want sympathy, he just wanted to be judged like every other quarterback. “But living with diabetes in the public eye does make it harder,” he said, conceding that if he goes out and has a bad game, some people might assume it’s because of his blood sugar numbers. “I just try not to worry about it and go out and play my game.”

A short YouTube video shows Cutler visiting with kids in a hospital who have just been diagnosed with Type I. He figures if kids meet him and then see him on TV playing football, they’ll realize that Type I doesn’t have to stop them from doing what they want to do. They’ll just have to learn to manage the disease, and be good with numbers. Like #6

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And now, an update on a few favorite female friends.

Eliza Cooper ended up not racing in that Brooklyn Bridge Swim after the NYC Swims director decided that athletes with disabilities would have to pay an extra fee to participate. A few weeks later, Eliza and her volunteer guide from Achilles International swam 1.2 miles in the ocean, rode a tandem for 56 miles and ran 13.1 miles – they completed a Half Ironman Triathlon, and they finished one hour earlier than they’d anticipated. But wait. There’s more! This past week Eliza started her first day of graduate school –at Columbia University.

Our sensational sister Cheryl was there to visit Flo every single day for the past couple years, whether Flo was still living alone in her condo, or in the hospital, or in a rehab facility. Cheryl went with Flo to doctor visits, she helped Flo with paperwork, and she was there with her kids and grandchildren at Flo’s side the day she died.

Cheryl flew to the Pacific Northwest last month for some well-deserved quiet time on her own, but before she left she went through Flo’s things and divided them into boxes for the siblings. She returns next week, and before then I’m heading to Blind Service Association (BSA) in downtown Chicago with a bag full of papers from my Flo box. Many of the papers are letters I wrote that Flo saved, and the generous readers at BSA have volunteered to read everything out loud to me. I’ll supply the Kleenex.

Nancy Faust just signed a contract to play for the Kane County Cougars again next season. The Cougars are a minor league team in Geneva, Ill., and when I say Nancy is playing for them, I of course mean she’s doing that on her Hammond B3!

I’ve been a fan of the Kane County Cougars ever since they hired me to work in their ticket office in 1994, and now that they’ve rehired Nancy to play every Sunday home game between May and September next year, I’m up for season tickets. All they need to do is come up with a “Nancy Package”: Sunday games only.

This season The Cougars have the most wins of any major or minor league baseball team in the country — the last time they had a championship season like this was back in 2001, when the team was led by Miguel Cabrera and Adrian Gonzalez. The first game of that series was on September 10, 2001. The Cougars won that game, but everything was cancelled after that.

Myrna Knepler is a writer in my memoir class. In a guest post here called when your birthday falls on September 11 she describes the reaction she gets when people at banks, at airports, or at doctor’s offices ask her for her date of birth. “They always comment,” she says. “And sometimes, they commiserate.”

Myrna has learned to refer to the date as “the eleventh of September,” but says figuring out how to commemorate it is still a conundrum. She’ll be 80 years old this year. I say we celebrate the entire month.

Which one is 4, and which one is 14?

Hanni is still going strong, and her human companion Nancy Bollero reports that The 14-year-old star of Hanni and Beth: Safe & Sound is getting creative in her old age: she taught herself to turn the quilt she sleeps on inside-out so she can shape it into a giant ball. “She rolls the ball to a new spot every day,” Nancy told me, describing the artful way Hanni arranges her favorite toys and bones once the ball reaches its new destination. ”And she still wags her tail like mad, thwomping it against the hardwood floor to let everyone know she’s proudof her work.”

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 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 28^th 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.

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.

When I assigned “The Best Job I Ever Had” as a topic for the memoir classes I lead, two writers in one class came back with essays about jobs they had when they were 11 years old. Last week’s post featured excerpts from Hugh’s essay about putting paper Trains together in 1942, and today I’m sharing excerpts from the piece his fellow writer Bob Eisenberg wrote about another unusual job during that decade.

Bob Eisenberg is not only a good writer, he’s a great artist, too.

Bob starts his essay explaining that when he was eleven, his family rented an apartment right across the hall from a man who had his own business pedaling fruit and junk items from a horse and wagon. One morning at the end of the school year, their neighbor stopped Bob to say He needed a helping hand on his wagon. “He asked if I new anyone who wanted a job,” Bob wrote. . “I jumped at the chance – I pointed to myself and said ‘Me!’” From Bob’s essay:

The start of my work day was my favorite part. I’d get the big brown work horse out of his stall and guide him into the alley. Then I’D pull out the empty wooden wagon and attach the long wooden wagon poles to the horse. I’d sit in the driver’s seat THEN AND WAIT for Mr. Dunn.

First stop? South Water Market. “Our journey started with me holding the reins and driving, Mr. Dunn sitting RIGHT THERE next to me guiding me all the way,” Bob wrote, explaining that Mr. Dunn took over the reins once they arrived at the market. “He guided the horse into the stall so we could load our watermelons properly.”

Once the watermelons were loaded and paid for, they headed back to their “Little Italy” neighborhood, just south and west of downtown Chicago. Again, from Bob’s essay:

Mr. Dunn drove the horse and wagon through the alleys WHILE I stood up in the back of the wagon, cupped my hands around my mouth and yelled, “WATAMEELO!” People ran down stairs from their back porches to buy our watermelons. We talked and laughed with everybody and shared news of the day as we heard it from people along the way.

Bob worked with Mr. Dunn all summer and earned 20 cents for each watermelon sold.  “Buy the end of the day, I felt like I was wealthy.” When summer turned to fall, they turned to buying instead of selling. “I stood in the back of the wagon and yelled, “RAGSALION!” which meant rags and old iron,” he wrote. “People came running down from their porches with old cloths, old pots and pans and all sorts of junk they wanted to get rid of.” “Everything Bob and Mr. Dunn collected was taken to the junk yard and sold. “At the end of the day I was exhausted, but very happy,” bob wrote. “My first job gave me the feeling of self worth and independence at a very young age.”