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.

Happy Birthday, dear Flo

Flo turns 94 today. She’s having her cake and eating it, too.

Flo – that’s my mom – turns 94 today. My four sisters and I schedule our annual Sisters Weekend around Flo’s birthday each year. Two years ago we all gathered in Louisville to visit our brother Doug and his wife Shelley. Last year we stayed at an Inn on the Fox River and treated Flo to her first ever pedicure.

This year we thought we’d treat Flo to another hotel room with us and take her to a musical. She liked the musical idea. “But how ’bout you girls all stay here with me?” she asked. “We can have a slumber party. It’ll be fun!” The apartment building Flo lives in is not an assisted living center, but a lot of golden agers live there. Her unit is pretty small. Two of us would have to sleep on the floor. We said, “Sure!”

Every three months, Flo’s building hosts a Friday evening cocktail party. Wouldn’tcha know it, last Friday was the night! Here’s how the party works: everyone brings an appetizer to the party room, affectionately known as the “Caribbean Room.” You’re supposed to bring your drinks down one at a time, and when you want another drink, you go back to your apartment, mix it, and carry it back to the Caribbean Room. Flo knew what she was doing when she chose her particular unit. It’s very close to the Caribbean room!

My brother-in-law Rich made a shrimp plate for us to share as an appetizer. Everyone oohed and ahhed. Rich and Cheryl’s kids (my niece Janet and nephew Ben) stopped by the party with their kids. Flo was tickled to have her great-grandchildren there, and the kids were well-behaved. When one of the other golden-agers complained about having kids there, Flo just shrugged it off. “Oh, well,” she said. “You can’t please everybody!”

Jack--one of the great grandchildren--hitches a ride with Flo.

Flo still walks on her own, often using a walker. She reads the newspaper every morning, and she passed her driver’s test last week. She gets behind the wheel once or twice a week, limiting herself to daytime drives. She can’t hear well, but she isn’t grumpy about that. If she doesn’t hear you, she cocks her head and says “hmm?” in such an adorable way that you just can’t help but smile.

During the car ride to dinner after the musical, Cheryl asked Flo how she liked the play. “It was good,” Flo said. “I just wish I could have heard what they were saying.”

”I know what you mean,” I called out from the back seat. “I wish I could have seen what they were doing, too!” Flo laughed. We all did.

Flo wanted dinner to be simple, so we headed to a tavern called Stimac’s. When the strangers at the next table found out it was Flo’s birthday, they asked her what kind of music she liked. Next thing we knew, Glenn Miller’s “In the Mood” was playing on the jukebox. All of us, including Flo, rose to our feet to dance.

On the way home, we sang “Shine on Harvest Moon” and “Down By the Old Mill Stream” in harmony. Hard to know how we can top this next year, but knowing Flo, she’ll come up with another great idea. Happy Birthday, Dear Flo!

Flo on the Pot

That's Flo calling from the bath-phone. Get it, Robin?

 

Flo – that’s my mom — turned 93 on Monday. My four sisters and I celebrated by taking Flo to Geneva for a two-night stay in a beautiful restored old inn. This was in Geneva, Illinois, but if you talk to Flo about it all, you might think we brought her to Switzerland.

Trying out her poster bed, enjoying her first ever massage, looking over the balcony at the series of brides being photographed in the courtyard below…Flo was enthralled. We did a bit of walking around town, but most of our time together was spent in our two adjoining suites, talking, laughing and drinking wine.

My sister Bev had brought her laptop along, and conversation often turned to topics like Facebook or Twitter. At one point Bev skyped her son Brian, who teaches English in South Korea. Flo could hardly believe her eyes – she was watching her grandson on the computer screen from all these thousands of miles away. “I just can’t keep up!” she’d explain. “I’m not in this world!”

That phrase became the theme for the weekend, and after Flo’s first trip to her hotel bathroom she was convinced she really was in another world. It wasn’t the bidet that threw her off — it was the phone. “It’s right by the toilet!” she giggled. She’d never seen – or imagined – such a thing, and she could hardly get over it.

With our encouragement, she went back in the bathroom, picked up the phone and gave my husband Mike a call. She practiced her lines out loud as the phone rang. When Mike answered, she was ready.

“Mike?” she asked, somehow managing to stifle a laugh. “You know were I am?”

“Well, you’re probably all sitting at a round table, each with a glass of wine, right?” It was a pretty good guess. Flo was delighted to tell him he was wrong.

Sisters, sisters.... From the top (of the stairs) that's Bobbie, Bev, Cheryl, Marilee, me, and mom Flo.

“No,” she said, taking another big breath to avoid laughing. “I’m sitting on the pot!”

Mike was stunned to silence. Flo repeated. “I’m on the pot!” she said, finally bursting into giddy schoolgirl laughter.

As the weekend drew to a close, we asked Flo what it was like, living into her nineties. She said she doesn’t really think about her age much. “One thing, though,” she said. “Every year, something new happens. And it’s always something I would have never, ever thought of myself.”

Flo, having her cake and eating it, too, at 93.

Happy Birthday, Dear Hanni

It’s Hanni’s Golden Birthday today — she’s 8 years old on the 8th of February. We are celebrating Hanni’s birth, of course. But I gotta admit: while Hanni spends the day playing around and giving me paws, she’s giving me that other sort of pause, too.
In the “frequently asked questions” section of the Seeing Eye website you’ll see that The average Seeing Eye dog works, well, you guessed it. Eight years.
Of course, we all know Hanni is wayyyyyy above average. She’ll be working far past her birthday. But this magic number “8” does stress– double meaning definitely intended here – the fact that retirement looms on the horizon.
Different guide dog schools have different policies about retirement. Some schools “rent” the dogs to their users. Those schools have more say as to when the dog should retire. At the Seeing eye, the dog belongs to the guide dog user. That means we are the ones who decide when it’s time for our dogs to quit working. We judge this by their health, and by their willingness to work.
Gee, kinda like human retirement, huh?
When retirement time comes, I can bring Hanni back to The Seeing Eye so they can find someone to adopt her, I can keep Hanni at home while I work with my new dog, or I can give her to a friend.
A dog lover in northern Wisconsin has already offered to take Hanni when she retires. Northern Wisconsin is lovely, but a very long distance from Chicago. It’s hard to imagine traveling more than a couple of feet to hug Hanni. Or trusting a dog other than Hanni to lead me around and keep me safe.
I don’t like thinking about what will happen to my beloved golden retriever/Labrador cross when I go to Morristown for a new dog. But heck, why waste time thinking about that now, anyway? It’s time to celebrate. With good ol’ Hanni.