By the time he got to Toby’s, the boy was already in his room, relaxing on his bed. He was breathing softly with his eyes half-closed. Toby was small for his age—20 at his last birthday, the week before—and because of all his disabilities he was profoundly impaired and completely dependent on others for his care.
Despite everything—his cerebral palsy, cognitive delays, visual impairments, microcephaly, scoliosis—Toby was as cheerful and loving as anyone Preuss had ever known.
Preuss loomed into Toby’s field of vision. “Hey,” he said. “How’s my boy?”
Toby purred softly in reply. He gave his father a twitchy smile. A rivulet of drool spilled down his cheek. Preuss blotted it with the bib Toby wore embroidered with, “Spit Happens.”
Preuss took his son’s hand, severely bent at the wrist from the CP contractures. “Did you have a good day at school?”
Toby made a small sound, a little grunt. He was non-verbal, but as familiar with his son’s manners of communication as he was—Toby made his needs and moods known through facial expressions, body language, and vocal inflections—Preuss recognized the sound as part-affirmation and part-complaint.
“Too hot in there today?”
No response, except for Toby’s gentle breathing. Toby turned his head slightly so he could see his father out of the corner of his eyes, which was where the vision therapist said his limited vision was strongest.
The temperature outside went only into the mid-60s today, seasonable for fall in Michigan, but the air conditioning in the classrooms at Toby’s school had been on the fritz since the week before. It had been hotter and more summer-like then, and the heat still lingered in the classrooms. Preuss knew it would be hard on Toby even with fans in every room.
He looked for the notebook where Toby’s teacher, Mrs. Rice, made her daily comments about how Toby was doing. It was in the tote bag that Toby’s nurses sent in with him every day, containing several changes of clothes and extra diapers.
Mrs. Rice confirmed it was very hot inside the classrooms in Toby’s program, but she said they spent most of the day outside and Toby enjoyed all the nature he saw and heard. The heat in his classroom aggravated his seizures, though. They hoped to get the air conditioning fixed by tomorrow.
“I bet you did enjoy the nature,” Preuss said. “We’ve taken our share of nature walks, haven’t we?”
Toby made another small grunt. On their outings, Preuss pushed his son’s wheelchair around the area’s nature trails and ponds, as well as around the neighborhood of the group home and Preuss’s own home in Ferndale. Toby loved to be outside, with his father narrating the things they saw and heard and smelled.
Now, as Preuss stood in Toby’s room watching his son, Toby’s eyes fluttered, then closed all the way. His breathing evened out.
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