It was still light out when Preuss pushed Toby in his wheelchair out of the restaurant. Toby hummed all the way back to his group home, and Preuss joined him, adjusting his tone to Toby’s in such a way that they performed a sort of call-and-response all the way down Twelve Mile to Toby’s street, and then to his group home.
Toby’s housemate Katy was getting her own bath, so Preuss pushed Toby down to his room and got him in bed with the overhead lift. Preuss took the boy’s clothes off and laid a bath towel over him until the bathtub was free.
Preuss looked around the room. He had set it up for Toby when he was sixteen, so it reflected the world of a teenager, with posters from the concerts that Preuss and Toby had gone to—mostly artists that Preuss himself was interested in, and thought Toby would like based on the CDs he listened to. Judy Collins, Arlo Guthrie, Los Lobos, the Chieftains . . .
There was nothing wrong with these for a young man’s room. Preuss himself had not put up any posters or decorations at all in the room he grew up in at his parents’ home in Ypsilanti; he never felt at home enough there to want to personalize it, even with posters of the musical groups he loved. But as he sat looking around, Preuss felt the urge to change things, to create a new environment for Toby with different kinds of stimulation suitable for the young adult he was becoming.
The question was, how to decorate the room. It wasn’t like Toby could tell him what he wanted.
Because Toby couldn’t communicate verbally, Preuss never knew if Toby was happier with routines he could count on, or with changing and challenging surroundings. Preuss wasn’t sure if his son could actually see the posters on the wall or not, with his profound visual impairments; he might not have even realized what was on the walls. Maybe this was all for Preuss’s own benefit.
No matter. He knew nothing would be lost by assuming the best for Toby’s abilities, and everything to be gained. Otherwise, Toby would wind up staring at blank walls, as Preuss himself had done growing up. Except Toby’s disabilities would keep him even more isolated than Preuss had been. No, Toby needed as much stimulation as possible, not only visual but aural as well.
Katy’s aide stuck her head in the doorway. “Tub’s free,” she said.
Preuss got bare-naked Toby back in his wheelchair and pushed him into the bathroom, where he used another overhead lift to swing Toby out of his wheelchair and into the tub.
Where he screamed, chortled, and chirped in absolute delight as his father gave him his bath and shampoo. And, after that, a good long soak with the bathtub’s jets. With dreamy, half-closed eyes, Toby floated in the frothy water until his father had to hold him down on his bath chair with a gentle hand.
Back in his room, Preuss dried his son off and dressed him in an extra-large tee shirt with an image of the original album cover of “Alice’s Restaurant,” with an impossibly young Arlo Guthrie sitting at a table with a napkin stuck to his bare chest. Preuss played a few songs on the twenty-dollar garage-sale guitar he kept in Toby’s room. After that, Preuss found an old episode of Law and Order on Toby’s television and they watched it together, and then Preuss put Judy Collins on the CD player, kissed his drowsy son goodnight, and went home.
There he played his red Les Paul for another hour, took a shower, and got into bed.
But he couldn’t stop thinking, and wound up replaying the day’s events in his head.
He thought of Antoinette Lee and her own sorrow, and thought again of the ubiquity of sadness in the world. He had once heard Frank Zappa say that stupidity, like hydrogen, was one of the building blocks of the universe. But Preuss thought the real building block was sadness. Not even suffering, as the Buddhists thought, but pure sorrow. Loss was universal, and the opposite of the sadness that followed in its wake was the tiny pilot light of joy that allowed Toby to be happy and other people to carry on in the face of all the death, all the grief, all the people—the Jasons, the Meeshells, the Greg Braidens—who disappeared from our lives by the day.
And Toby, like a keeper of that small flame, transmitted it to all who came near. And while Preuss could not, by any stretch of the imagination, be called joyful, his contacts with Toby did lift his heart, and so he made as many of them as he could.
Thoughts of Toby comforted him for the rest of the night.
Click Follow to receive emails when this author adds content on Bublish
Comment on this Bubble
Your comment and a link to this bubble will also appear in your Facebook feed.