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.