It was time to catheterize him. Every day at 8 a.m., 12 p.m., 4 p.m., and 8 p.m., someone drained his bladder. The task required fine motor skills that he didn’t have, so Kali or Lydia or a school nurse continued to do it for him. This morning, Marko woke and got himself out of bed. He dragged himself to his chair and got in it, then went to the bathroom to get his catheterization kit. He brought it to Kali in her room. She pretended to still be sleeping because she liked the way he had of waking her. He would slow down his chair and push the door open ahead of him, then inch in without letting the chair bump the door. The whole process was nearly silent. Kali loved the sweetness of it, because he intended to wake her up anyway; he just wanted to do it with a gentle kiss to her hand and a whispered, “Good morning, Mama.”
That time, Kali’s hands were in front of her, tucked up against her chest in prayer pose. Kali couldn’t move them without betraying that she was awake. He was so quiet there behind her for what felt like a very long time. She wondered what he was doing. She pictured him sitting there looking at her, watching her sleep. He could have just as easily been zoned out, staring at the floor or wall, she knew. But Kali seemed to feel his gaze trained on the side of her face. Kali stirred and turned over. He was bent forward, looking under her bed. Kali shot up and dropped her blanked over the side of her bed. Her dream bed was under there, and she didn’t want him asking her about it.
Marko smiled at Kali. He smelled like urine again and, in spite of trying to smile back, Kali frowned. The line instantly appeared between his eyes, and he frowned too.
“What’s wrong?”
Kali smiled as big a smile as she could make. “Nothing, my love. Good morning! How are you?” His face relaxed. He looked at her with one eye turned in, something that often happened in the mornings or at night if he was very tired. Kali reached out and tousled his hair. He nuzzled his head against her hand and reached for her. She pulled him from his chair into her lap and held him like a baby. He was still so small. The last time Kali had had him weighed, he was right around fifty pounds.
“Here,” Kali said, sitting up and pulling him to the floor, “let’s get you cleaned up.” Kali pulled off his diaper. It was soaked through. She would have to change his bed sheets again. She cleaned him up and inserted the catheter tube. The tip of his small penis was red and irritated. Kali put Vaseline on it to soothe it, even though he couldn’t feel it.
Marko was oblivious. Not just because he couldn’t feel anything down there, but also because he wasn’t aware of the stigma. As a paraplegic, dealing with urine leaks was as routine and uneventful as visiting the toilet is for non-paraplegics. It simply didn’t bother him. It bothered Kali though. At school, his diaper sometimes showed, sticking up over the waist of his jeans. Kali felt embarrassed for him because the other kids could see, and she’d seen them looking.
When his bladder was completely emptied, Kali withdrew the catheter tube and cleaned it.
“Feel better?” she asked, putting a fresh diaper on.
“Yes, thanks,” he said, and Kali felt bad. Because he didn’t feel better. Of course he didn’t—he couldn’t feel a thing, not the tube, not the irritation, not the urge to pee. It was Kali who felt better, knowing that his bladder was empty and that he would be okay for at least four hours.
Although many kids with spina bifida could feel when they had to pee, which allowed most of them to actually use the toilet, at least some of the time, Marko could not. Kali used the toilet for Marko only when he had to poop. She would sit him on it and jiggle him around some until a few nuggets come out. Lately he had been so constipated, though, that the pressure built up in his intestines was pressing on his bladder and causing him to leak a lot between catheterizations.
“Mom, do you know why my skin starts to look so wrinkly when we’re in the water too long?”
“I don’t actually know.”
“Because the oil in our skin that makes it waterproof, called sebum, seeee-bum, gets all washed off. Then, the water soaks into the top layer of the skin and makes it soggy.”
“How do you know so much?”
“I look stuff up.”