Flashback: August 9, 1982
Bryan tiredly shuffled through the dark hallway toward his bedroom, pausing for a moment at his sons’ door to listen for Kai’s breathing. Quiet. He’d been doing well the last few months, having fewer attacks and sleeping through the night more often than not, and it made Bryan smile faintly. When he reached his own room, he found Ann dressing a fussing Sara like she’d only just changed a diaper.
“Finally. I want to hit the road.” Ann picked Sara up and supported her on one hip while she grabbed a duffle bag and threw it over her shoulder.
“You know I always get home at the same time after a nightshift,” Bryan said wearily, toeing off his boots. “Do you really have to go?”
Ann huffed and shifted Sara in her arms. “My mom doesn’t have much longer, you know that, and she hasn’t met Sara yet. I need to do this. It’s only a couple days.”
“Kai hasn’t met her either, but you’re leaving him behind.”
Ann rolled her eyes and let out a long breath. “Kai’s too much trouble. You know that. It’ll be hard enough dealing with Sara by myself.”
Bryan hated how Ann saw Kai as a burden, how she clearly played favorites with their daughter, but he was too tired to fight about it again. “You’re taking your meds, right?”
“God dammit, Bryan!” Ann shouted, then lowered her voice when Sara started to fuss. She took a grounding breath. “I was a spontaneous person when you married me. Deciding to visit my mom doesn’t mean I’m off my meds, for fucksake.” She shook her head. “I gotta go. I’ll call when I get there.”
Bryan rose and hugged them both quickly, planting a kiss on the top of Sara’s dark hair. He didn’t like the idea of Ann taking off alone, but he also knew short of tying her to the bed there was nothing he could do to stop her.
Jon woke before Kai, who was curled up into ball on his side in their shared bed, facing the wall. He’d slept through the night again, Jon noted with a warm smile. Even though his brother’s breath came out with a faint wheeze with every exhalation, he hadn’t had a nocturnal attack, making this two weeks running where Kai’s breathing hadn’t ripped him from sleep.
Jon checked the time. Nearly seven. He could afford to let Kai sleep an hour longer, and slipped quietly out of bed to take his insulin and have some breakfast. He didn’t have a reliable way to check his blood sugar at home; the stupid strips he sometimes used to test his pee were notoriously inaccurate, so Jon had settled into a routine. As long as he made sure he took his insulin and ate at the same time throughout the day, his blood sugar stayed as stable as he could make it. He sometimes still felt sick or irritable when things got out of whack, but they couldn’t afford for him to go to the hospital for the blood test more than a couple times a month, so he had to make due.
Kai was still asleep when Jon returned an hour later. This time, his brother had rolled onto his back, his legs spread and bent like they’d just fallen that way when he’d shifted, and his arms stretched out to his sides. His breathing was worse now, though, his chest jerking and the wheeze more audible, both on the in- and exhalation. He needed to cough and take his morning nebulizer treatment.
Jon gently shook Kai. “Time to wake up, sleepyhead.”
Kai didn’t wake easily, and he tried to brush away Jon’s hand, but finally, he opened his eyes, his eyebrows furrowing in a sleepy glare.
Jon laughed. “Come on. We need to do your coughing game. Do you need to go potty first?”
Kai pushed himself up so he was sitting and shook his head.
“Are you sure?”
Kai nodded, but Jon noticed his hand go to his crotch and squeeze.
“Uh huh. Come on.” Jon scooped Kai up, even though Kai gave a snort of protest, one of the few sounds he could make, and pushed against Jon’s chest.
“Myself!” Kai insisted.
“I know you like to walk,” Jon said as he carried Kai toward their bathroom, “but this is faster.”
Kai snorted again and slapped Jon’s chest in protest, but then he started to cough, that rapid, wheezy cough that sometimes preceded an attack.
“Easy. Easy,” Jon said, rubbing Kai’s back. “Do your pee pee really quick, then we’ll do your coughing game and you can breathe your magic medicine and you’ll feel better.”
Most of Kai’s fight had left him as his breathing became his primary focus, one of his small hands gripping the fabric of Jon’s T-shirt tightly.
Jon helped Kai get his PJ pants and briefs down and sat him on the toilet. “Pee down, OK? In the bowl. I don’t want you spraying yourself or the wall or the ceiling or me, OK?”
Kai’s eyes gleamed with a hint of mischievousness, but he nodded and used one hand to support himself on the seat while the other angled his stream down. He coughed a few times, a weak wet cough that didn’t seem very productive, and Jon had to hide a frown.
While Kai did his business, Jon washed his hands and set up one of Kai’s nebulizer chambers with the medicine he needed.
Kai clicked his tongue, his way of getting Jon’s attention, handsfree, to say he was done. He coughed again, though this time it was less desperate. Shifting positions in the morning often did trigger some coughs, and hopefully that was all this was. Once Jon went through Kai’s chest percussion routine and got him to cough up some of the mucus, his brother would feel better.
Jon set the nebulizer chamber aside and got ready to help his brother, who was trying to pull up his underwear and pants with only one hand while his other gripped the edge of the seat to keep from falling in since he was so small. It was pretty funny how stubborn Kai was, and how important it was for him to do things for himself. It always made Jon worry he would hurt himself, but their father thought it was important that Kai be as independent as possible.
Kai did manage a half-assed job of getting his pants back up, then started looking around in a way that signaled he was figuring out how to get down. Kai had made this attempt more than once and usually ended up falling hard on the tile floor, so Jon quickly scooped his brother up just in time, shuffling him to one side so he could use his other hand to flush and grab the nebulizer chamber.
Kai was pissed at Jon’s intervention, but he only squirmed for a moment when Jon reminded him he’d get to play with his dinosaurs if he settled down.
The respiratory therapist who’d trained Jon and Bryan how to do Kai’s chest physiotherapy had suggested they motivate Kai with a unique toy or activity to keep him occupied, since it wasn’t easy to get a toddler--even a disabled one--to sit still for thirty to forty minutes. So Bryan had taken Kai to the thrift store to pick out some toys, and Kai had found a set of dinosaurs that were well used but still had some life in them. Kai’s favorite was some kind of small two-legged dinosaur that was either defective from the start or had been warped by the boy who’d owned it before, because when you set it on the ground it’d fall over since its legs weren’t quite straight. Kai called it K-dino because he said it was just like him.
Jon got Kai’s dinosaurs out and handed them to him, then settled down on the bed with Kai in his lap, his back to him. He started the nebulizer treatment and fixed the mask on Kai’s face, then supported Kai with one hand while he used the other to pound his back, making sure to keep his hand in a cupped position and to find that perfect balance between hard enough to shake the mucus loose and not so hard as to hurt his little brother. Meanwhile, Kai had his favorite toy in his hand and was “stomping” him through the air.
Once the nebulizer treatment was over, Jon removed the mask and got a pillow in place and carefully lifted Kai onto it, chest down, helping him get in position. Kai never let go of his toys; he was used to this. Twice a day for six months this had been their routine, more than half an hour of shifting Kai from sitting, onto his stomach, then flat on his back, then to each side in a couple different positions, pounding and then tapping to loosen the mucus that Kai couldn’t cough up easily otherwise. The routine was time consuming and Kai hated it (except for his dinosaurs) but Kai had been breathing so much better since and had actually managed to stay out of the hospital.
“Big dinosaur coughs for me, OK?” Jon encouraged Kai with his own coughing, and offered Kai some tissues to spit into.
Kai did his best, hacking up an enormous amount of gunk for such a small boy, then handing off the used tissue to Jon and pushing off the bed, carefully lowering himself to the floor.
Jon shook his head but checked the tissues for the color and consistency and smell, all of which could signal an infection even before Kai got terribly symptomatic. Although the mucus was thick, like always, it was clear and odorless, which meant Kai was healthy. And his energy level showed it as Kai had already dragged himself across the floor to the chest of drawers. Jon started cleaning up, glancing over at Kai every so often out of habit. His little brother had opened the bottom drawer--his drawer--and pulled out a pair of his long brace socks and was playing with them. Kai sat beside the dresser, his legs spread out straight in front of him in a “V”. He’d slipped one sock onto his arm, making a puppet. When he realized Jon was looking at him, he held the other in front of his nose and acted like it was a trunk.
“Are you an elephant now?”
Kai grinned hugely and nodded.
Jon chuckled faintly. “I’m going to rinse this,” he said, referring to the nebulizer chamber, “and go make you some breakfast. Put your braces on and meet me in the kitchen. But if you don’t use your walker, I’ll give you oatmeal instead of French toast.”
Kai pouted and stuck his tongue out. Then he put his hands on his hips, one still sheathed in the long sock, and stared at Jon defiantly. Then his eye gaze went to his walker, which stood nearby, and back to Jon again.
“Even if Mom went away for a few days, you still have to wear your braces and use your walker. That’s the rules.” Kai hated both, but especially the walker. He preferred doing things his own way and didn’t like being told what to do, even if the real truth was Jon knew he liked the freedom the orthotics and walker gave him.
Kai blew a raspberry and crossed his arms on his chest.
“OK, guess I’ll go start making the oatmeal.”
Kai’s brows furrowed one last time before he gave in and loudly pulled his braces out of the drawer one by one.
Jon was almost finished making the French toast--one of the few foods Kai loved and would devour without coaxing--when Kai made his way into the kitchen, using his walker, like he was supposed to. The walker had wheels, and so Kai essentially pushed against it with his upper body, and the momentum helped him pull his legs forward one step at a time. He had gotten quite good at using it and never fell anymore; in fact, he could move fairly quickly with the thing. Certainly faster than he could on his own, and as stubborn as he could be about using it, Jon had caught him more than once “racing” up and down the hall to see how fast he could go until his breathing made him stop.
And Kai did that now, charging forward, stumbling over his feet a little and crashing into the counter. But he acted like he’d done that on purpose, a huge smile peeling its way across his face. “READY? FOOD READY?” Kai asked, and when Jon didn’t respond immediately, he reached up for the counter, first with one hand, then the other, trying to pull himself up so he could see. Kai was strong, especially for how tiny he was, but he was too short to reach enough to get a solid hold, although he didn’t give up. In fact, Jon was convinced he would spend an hour or more trying to climb onto the counter if left to his own devices, so Jon scooped him up, fighting him a little, but when Kai realized Jon was settling him on his hip so he could see the food, he calmed.
He watched for a moment while Jon flipped the toast, but then when it was ready, he tapped on Jon’s arm and mimicked the motion of a spatula flipping.
Jon sighed. “You’re going to make a mess.” But he gave in, like he always did to Kai, and turned off the heat. Then he shifted Kai in his arms, propping up a knee for Kai to have something to stand on, partially supporting his brother with his torso, his arms wrapped around him to hold him up, but leaving both Kai’s arms free. Kai wiggled his fingers against his chest, his thumb touching, almost like the sign for “fancy,” but Jon knew that was Kai’s way of showing his delight since it could also represent laughter. Kai reached for the spatula, struggling to balance it in his small hand, and then went to work attempting to scoop the toast from the pan onto the plate.
Even though Kai’s muscle disease primarily affected his legs, and he signed all the time, his doctors and therapists were always encouraging the Taylors to challenge Kai’s motor skills. It took Kai a few attempts, and he dropped the toast more than once back into the pan, but eventually he got both pieces onto the plate, throwing his hands up in accomplishment.
“When you’re older, I’ll teach you how to make it, OK?” Jon promised, setting Kai back on the floor, not letting go of him until he had his hands on his walker again.
Kai grinned hugely and was already starting to maneuver his walker so he could turn around, leaning on it so he could shift the position of his feet with the help of his upper body and gravity, then standing upright to balance himself without it while he moved it a few degrees, then repeated until he finally was facing the direction he wanted, at which point he took off at his full speed toward the table.
Jon chuckled and cut the toast into bite-sized pieces for Kai, then grabbed the plate, a fork, and the syrup, carrying them over to the table. Kai was already there, trying to pull himself up into the chair. Transfers like this were one reason Kai hated his braces, because they inhibited his mobility and weighed him down, but of course he was stubborn and determined, and he’d figured out a way to do it, even if he looked adorable and silly in the process. He’d stand in front of the chair, perpendicular, and stretch over it, pulling half his body up so he was basically lying on it, face down, his legs still touching the floor. Then he’d pull and push, slowly getting closer to the far edge and gradually lifting his legs in the process. Then he’d pull on the bars of the back of the chair to help get himself onto his side, which gave him more maneuverability so he could pull himself up farther, until he was eventually in a sort of sideways seated position. Then he’d keep one hand on the bars of the chair back and use the other, flat on the seat, to shift a little more, finally guiding his legs with one hand until they were more toward the front. A few more pushes and pulls, and Kai was finally sitting the way he should be. Of course, he really needed a booster since he was so small, but they’d tried that and Kai couldn’t get up into the chair on his own that way. One day, Jon had left Kai to wait for him to put him in the booster while he’d gone to check on Sara since it had sounded like she’d fallen out of her crib. When Jon returned, the booster was on the floor and Kai was climbing into the chair in his determined way. Jon and Kai had fought about it a few times, but finally Jon had decided the exercise was good for his brother, and if it made him happy, then it wasn’t worth fighting over.
Besides, it was a source of pride for Jon to see how ingenious and focused Kai could be. Could someone retarded, the way some of his doctors still claimed he was, figure out how to climb up there on his own, when it was such a complicated maneuver?
“FRENCH! FRENCH! FRENCH! FRENCH!” Kai signed over and over, his hand flicking in the “F” sign, which was how Kai signed French toast.
Jon chuckled, set the plate in front of him, and squeezed some syrup on top.
Kai tried to reach for the bottle himself, but Jon had made that mistake only once--he swore he was cleaning syrup out of Kai’s hair for a week afterward--so he made sure he kept it out of Kai’s reach. Kai pouted. “MORE! MORE! MORE!”
Jon rolled his eyes and drizzled more syrup over his brother’s breakfast, feeling like he would go into diabetic shock just from watching Kai eat so much sugar. But the doctors said Kai needed all the calories they could get into him, so Jon didn’t hold back. “Use your fork,” Jon reminded Kai. “I mean it,” he added with a stern look, since Kai sometimes got frustrated with the fork and dug in with his bare hands, leaving a horrendous sticky mess.
Kai stuck his tongue out, and very purposefully grabbed the fork, waving it in the air as if to say, “See, I’m using it!” Adjusting his hold on it a few times with the help of his other hand. (Kai insisted on using a “big kid’s” fork and not a baby one, even if it was unwieldy for his small hands.) Finally stabbing a bite and bringing it to his mouth with a satisfied smile.
Jon kissed the top of Kai’s head. “I have to do some laundry, but I’m going to bring you some milk first. Smack the table loud if you need me, OK?”
Kai nodded as he chewed, licking some syrup off the tines of the fork, gloriously happy.
Jon had to admit he missed Sara, but it was nice being able to focus only on Kai, and the house was quieter without her and their mother. Jon imagined he’d be able to get a lot of the household chores done and still have time to read that medical book he’d gotten from the adult section of the library.
As he gathered up dirty clothes, he realized his mother had taken almost all of Sara’s things with them. And part of him wondered if maybe she wasn’t planning on coming back.
Bryan woke, feeling sore but rested. His mind immediately went to Ann and Sara, but he knew worrying would get him nowhere. He just hoped Ann would call when she got to her mother’s, so he knew they’d gotten there safe. He moved to stretch but met an unexpected resistance. And then he heard it. Soft, slightly wheezy breathing, so Bryan shifted so he could see better and caught a glimpse of Kai, curled up and asleep beside him. He was wearing nothing but his pajama top and his briefs, and Bryan managed to see Kai’s pants, brace socks, shoes, and braces all in a line along the floor from the door to the bed. How Kai had managed to climb up into the bed by himself, especially if he’d taken off his braces, Bryan wasn’t entirely sure, but he couldn’t help watching his little son sleep, a surge of pride filling him at how determined Kai was, how much he’d survived and how far he’d come. As recently as a couple years ago, Bryan had worried that he’d have to give in to Ann and put Kai in a home so he could get the care he needed that Bryan couldn’t provide, even working three jobs. But now Kai was an energetic four-year-old, and even if he couldn’t breathe as well as other kids his age, and even if he needed help walking, and even if he couldn’t speak, he was bright and happy and Bryan knew that someday, he’d do great things.
Kai stretched his arms and yawned hugely, and when he opened his eyes and saw Bryan, he flashed a huge grin.
“Hey, sleepy boy. Did you sneak in here to be with me?”
Kai nodded. He used his hands to gesture how he’d quietly snuck up to the room with his walker, then stripped off his heavy braces and crawled along the floor to the bed, then used the footboard to help pull himself onto the high mattress. His smile broadened.
Bryan laughed. “You climbed up here all by yourself?”
“Such a big boy,” Bryan said, rolling onto his back and pulling Kai with him, holding Kai up in the air above his chest, tickling him subtly.
Kai lit up, giggling, even if his laughter was mostly silent. He threw his arms out, trying to brace himself against Bryan’s chest to push away from him.
Bryan eased up, sitting Kai on his stomach, his son’s legs on either side of his abdomen, careful to support Kai’s torso so he wouldn’t fall. “Look at how big you are,” Bryan teased. “Soon you’ll be bigger than me!”
That made Kai laugh again, shaking his head. “You silly,” he signed with one hand. Then he touched his index and middle fingers to Bryan’s nose, as if carrying the sign for “silly” from his own nose to his father’s.
“Does that mean we’re both silly?”
Bryan smiled. “How’s your breathing today?”
Kai’s eyebrows dipped momentarily in confusion, but he answered by taking a huge breath. He coughed a little, frowned, and tried again, this time managing the breath without a wheeze or cough, offering a thumbs up with both his hands. He wobbled a little and his hands went to Bryan’s chest in reflex to catch himself, but Bryan adjusted his hold on his son so he was secure, and he felt Kai relax.
“Big, dino breaths, huh?”
Kai nodded. “This morning I did my dino coughs,” Kai said, demonstrating a couple, “and Jon made me French toast! With lots of syrup! Yum!” Kai acted out putting the syrup on his food in a spiral, his eyes following his hand in a silly round and round until he shook his head like he had made himself dizzy and laughed. “I ate it all up!”
Bryan felt an easy smile tipping his cheeks. The long hours were worth it to see Kai like this, happy and relatively healthy. He tried not to think of all the times in the last four years they nearly lost him. “If you’re breathing big dino breaths and you ate all your breakfast, does that mean you want to go to the park?”
Kai’s eyes lit up with excitement. “Park?” he asked as if in confirmation, using his homemade sign, which was two fingers bent and rocked in the air as if to imitate the motion of someone on a swing.
Kai clapped his hands together. “Can I go on the slide?” Kai asked with one gesture, two fingers representing a person’s legs moving downward as if to represent going down a slide.
“We can try, but you know it doesn’t work well with your braces.”
Kai’s eyebrows dipped and he frowned like he didn’t understand.
Bryan shifted so he was supporting Kai with one hand, signing crudely with the other, using the made up sign Kai had invented for his orthotics, “Your braces get stuck on the slide.” Too much friction, so Kai couldn’t really slide down well when he was wearing them.
Kai nodded to signal he understood, but then his eyes lit up and Bryan didn’t have to read minds to know what Kai was thinking.
“No. You must wear them. Must.” Bryan used a finger to guide Kai’s chin back to front since Kai had stubbornly broken eye contact to say, “I’m not listening.” “You need lots of practice walking with your braces. Don’t you want to learn to walk better?”
Kai frowned, his expressive features radiating hurt.
“Hey, hey, shhh,” Bryan soothed, lifting Kai and settling him into his arms, along his side. “I want you to learn to walk better so you can go wherever you want and do whatever you want and you won’t need anyone to help you. You want that, don’t you?”
Bryan checked Kai’s face. Kai looked like it was taking him a minute to work out what Bryan had said. Kai could communicate fine in sign language, and he understood English, but when it got too complex, he sometimes got lost. The doctors said it was an auditory processing disorder, which was basically their fancy way of saying he was brain damaged and couldn’t always interpret the things he heard, especially spoken language, like a normal child could. But it was one reason the deaf school had been willing to accept Kai into their preschool program even though, technically, Kai’s hearing was fine. Bryan and Jon tried to sign to Kai as much as possible, but it was difficult for Bryan to learn when he was working so much.
Bryan took a breath and tried to explain in sign. “IF YOU LEARN WALK GOOD, YOU NEED HELP NEVER. YOU WANT THAT, RIGHT?” Jon had explained--from reading several books on the subject of course--that ASL had its own grammatical structure distinct from English. But Bryan didn’t worry about that, and simply tried to transpose English words into their corresponding signs, hoping that would help Kai understand.
Kai nodded, but he still had a hurt, stormy expression.
“I love you. Always. Don’t tell Jon or Sara, but you’re my favoritest.”
Jon entered the room he shared with Kai, carrying a basket of laundry to fold, surprised when he found Kai, sitting on the floor, wearing only his briefs, his shirt, and his braces. His pants and walker were nowhere in sight. Kai had a sheet of stickers--dinosaurs--that Bryan had surprised him with one day--and was peeling them off their backing and carefully placing them all over his orthotics. Kai looked up and grinned at Jon, pointing to his handiwork. Dozens of tiny brown and green dinosaurs that stood out vividly against the white plastic of his braces. “Dinosaurs!” Kai announced with pride, using the sign he’d invented, four fingers pointing up on the top of his head moving downward to represent the crest that some of the dinosaurs had.
Jon set the basket down and sank to his knees beside his brother. He tried to pick one of the stickers off, and Kai slapped his hand away, flashing a glare. “Mom is going to kill you.”
“Mine! Dinosaurs!” Kai said again, intensifying his signs with a determined look in his eyes. Almost as if to say, “they’re mine, and I have to wear them, so why can’t I decorate them with powerful dinosaurs?” Kai pointed to the shelf where Jon stored Kai’s three cough-time dino figurines. “Want. K-dino,” Kai said, referring to his favorite one, the figure with the “limp.”
“Those are only for coughing time. You know that.”
Kai pouted and crossed his arms on his chest.
Jon sighed. He could try to peel off the stickers later, when Kai was sleeping. Although maybe he’d leave them. They obviously didn’t hurt the functionality of the braces, and if it would convince Kai to wear them more readily, even better, right? The doctors and Kai’s physical therapist had insisted that if Kai didn’t wear his braces regularly, not only could he lose the ability to walk at all, his legs could grow deformed. “OK. I won’t tell mom about this for now. I am jealous, though. They look so awesome,” Jon said, pointing to some of the stickers. “I wish I had braces with dinosaurs on them, too.”
For someone so young, Kai had an extremely expressive face, and right now a rainbow of emotions played across it and Jon couldn’t quite pick them all out. Kai peeled off a sticker and stuck it to the fabric of Jon’s jeans. Then he stared up into Jon’s eyes for a long moment. “ME DIFFERENT. WHY?” He pointed to his own legs and then Jon’s as if to make a point.
Jon sighed. “I don’t know.” Then he stood for a moment and got Kai’s dinosaurs, setting them all out. “All different. See? Everyone is made different. I have gray eyes. You have blue eyes. Different.”
Kai frowned and grabbed one of the toys, walking it along, then switching to the second, and finally, to K-dino, which couldn’t stand up on his own. Then he looked back up at Jon. “ME DIFFERENT. LIKE K-DINO. SAME. WE DIFFERENT WHY?”
“Cause variety is the spice of life,” Jon said, getting a little tired of Kai’s questions.
Kai glared because it was clear he didn’t understand what Jon had said. He mimed a normal walk with his index and middle finger, and then pointed to Jon. Then he did a limping walk and pointed to himself. He pointed again to his legs, then did his made-up sign that meant “hurt,” his fist tightening in on itself, and asked, “Why?” again. Kai wanted Jon to tell him why Jon could walk normally, why his legs didn’t hurt him, but Kai’s didn’t work right.
Jon met Kai’s eyes, such an intense, vivid blue, demanding an answer. Eyes that seemed older than his four years. But then Kai had lived through more in that time than many people did in decades. How did Jon give Kai the answers he wanted in a way a four-year-old could comprehend? “The kids at school are different from you, too, right? The kids at school are deaf. Their ears don’t work. You’re hearing. Do your ears work? Yes, they do. Understand?”
Kai’s face was a caricature of confusion as he seemed to consider what Jon had signed. Finally, he pointed to himself, then held out a hand with his index finger up, far away from his body. Then he clapped his hands. He then put his right hand out again with its index finger up, but it snapped around, like a person who heard a sudden noise. Then he shifted his shoulders, signed, “KIDS SCHOOL” and clapped again, then acted oblivious, looking around innocently, using the sign for clueless. Then he pointed to his ear and shook his head.
“Yes,” Jon signed and spoke. “DEAF. HEARING. DIFFERENT.”
Kai nodded, but his brows were still knit like he desperately wanted to understand. It was the face Kai often made when the Taylors were all speaking in English at once and Kai couldn’t follow the conversation. You’d think that most kids in that situation would have just ignored everyone and gone into their own world--and Kai had been like that when he was younger. But now, now Kai desperately wanted to understand everything, and he hated being left out. “Why?”
Jon sighed. Just because Kai couldn’t talk didn’t mean he couldn’t bombard Jon with “whys.” “Because the kids at your school were born deaf and you and I were born hearing.”
“Just like you and I are different from each other, we’re also different from the kids at school. You have trouble walking and I don’t, but the kids at school can’t hear and you can.” In sign, those concepts were much simpler and clearer, very visual, comparing the different groups in space, and using some gesturing.
Kai seemed to consider this. But then he stared down at his legs again. “But why different? Why?”
Jon tried to contain his irritated sigh. If Kai had his way, they’d spend all day with these endless questions to which he was never satisfied. “Because if everyone was the same, the world would be boring.”
Kai’s eyes grew glossy, and his lip trembled. In essentially four signs, he said, “I don’t want to be different. I want to be the same as you.”
That broke Jon’s heart a little, and he lifted his brother into his lap, cradling him against his body, rocking him slowly. “Because if you were the same as me, you wouldn’t be so special.”
Kai had insisted on wearing shorts to the park so his dinosaur sticker makeover on his braces wouldn’t be hidden. When they arrived, Bryan parked the car and Jon hopped out so he could carry Kai to the playground, but Kai insisted he wanted to practice walking.
Kai’s walker wouldn’t work on the uneven ground, so Jon took one of Kai’s hands, and Bryan took the other, and, a little stooped over, they helped lead him to the playground, one slow step at a time. The walk, which would probably have taken Bryan and Jon a couple minutes, took fifteen, but he was so proud of how well Kai was managing. He struggled a little picking up his feet and keeping his balance once they got to the sand, but he looked up at them with a huge smile of accomplishment, his eyes bright, and that was worth the aching back.
“What do you want to do first?” Bryan asked.
Kai tugged until his father released his hand, his balance faltering a bit, but Jon helped him. He pointed toward the swings, then bent his index and middle fingers like someone sitting and rocked it in the air, to imitate a person swinging.
“All right. Swings it is.”
Together, they helped Kai walk toward the swings. Bryan was very conscious of how people stared at Kai. At first glance, because Kai was so small, people probably thought he was about two years younger than he was, and so the way Bryan and Jon had to help support him while he walked wouldn’t have seemed abnormal at all. Maybe even cute. But then a second, longer look would reveal Kai’s braces and the proportions of an older child, and the looks of fondness would turn to pity and sadness. Bryan knew he’d have to get used to that eventually, but it didn’t change how much he hated how people saw Kai as only his disability. He was so much more than that. He was an amazing spark of a person, and Bryan worried that Kai’s whole life he’d be fighting to get people to see that he was more than his walk or lack of speech. Even with Ann, Kai’s own mother, that battle had already begun.
When they were only a couple feet away from the swings, Kai started to pull at their arms. He wanted so badly to walk on his own; he was a fiercely independent person, and stubborn, too, who loved finding ways to do things without help, even if he needed to do them differently. It’s one reason he’d resisted the braces for so long; he had gotten around well enough without them, at least around their house, as far as he was concerned, and he didn’t like someone else imposing their will on him. Now that he was more used to them, though, he seemed to like the freedom they gave him--he didn’t need to be carried places--but he didn’t want to use the walker. He wanted to make his way without it. It was always something with Kai.
Bryan nodded to Jon, who reluctantly let go of Kai’s hand. Bryan made sure he was helping support Kai on his weaker side as they got close enough Kai could reach out and grab the frame of the swing set, beaming in triumph. He yanked at Bryan’s hand now, his face saying, “I got this, Dad.” Bryan chuckled and released him, noticing Jon paled. Jon worried so much about Kai.
“He’s OK. He’s not made of glass,” Bryan said. “He’ll never learn if you don’t give him a chance.”
Kai was stretching for the nearest swing, trying to reach it without letting go of the support with his other hand, his face a vivid picture of frustration and determination.
“People are staring at us, Dad,” Jon said in a harsh whisper.
“Then let them stare.”
Kai cautiously let go of the frame and tried to take a step closer, but that put him off balance, and with nothing and no one supporting him, he fell, face forward.
Jon immediately rushed up to him, scooping him from the floor and cradling him, checking him for injuries. Kai was a little scraped up, but he seemed more angry that he couldn’t do what he wanted than from being hurt.
“It’s OK,” Bryan assured him, taking him from Jon. “You did really well.” He turned, shifting Kai so he could clearly see where Bryan pointed. “That’s our car all the way over there. You walked that whole way.”
Kai looked at Bryan with a complicated expression. He was clearly still annoyed with himself. His gaze drifted to take in the other children playing, running, climbing. He looked up at his father, his eyes filled with such raw, complex emotion Bryan couldn’t begin to determine everything his son was thinking. Then Kai buried his head in Bryan’s neck.
How could anyone think Kai was retarded? He was only four years old and some change, and yet he could see how the other kids weren’t like him. He could feel the very mature frustration in seeing others do things that he struggled to do. To see them running and know he couldn’t do it. Bryan wondered if Kai even thought about whether he would ever be able to do the other things that his schoolmates could do, that he saw other kids do any time he was around them.
Bryan wanted to believe Kai could do anything he set his mind to. Maybe Kai would never walk without assistance. Maybe he’d never be able to jump or run like other children, but Bryan was determined not to let that stomp out the spirit of the same little boy who, despite anyone’s expectations, had climbed into bed with him.
“We can go home if you want,” Bryan said, though he really didn’t want to take Kai away, not yet.
Kai shook his head and pointed to the swing.
“That’s my boy,” Bryan said, setting Kai in it and making sure he was holding on firmly and that he wouldn’t fall out.
Kai turned his head, watching several other, older children farther down the row of swings pumping their legs to swing themselves. He stared down at his feet and managed to lift his legs a few degrees, his right more easily than his left, but he couldn’t hold them there; the extra weight of his braces probably didn’t help. Kai snorted, one of the few sounds he could make with his breath, and tried again, and again.
Jon attempted to intercede, but Bryan put out a hand to stop him. “Let him be.”
“But he’ll never be able to do that,” Jon whispered.
“Sometimes, trying and failing is better than never trying at all.”
After a few minutes, Kai gave up lifting his legs on their own and instead tried using a hand to pull them up, but he could only do one at a time without completely letting go of the swing. It was only when he did that and nearly fell face forward out of it that Bryan lunged to intervene, scooping Kai up into his arms again.
Kai’s face was a powerful blend of anger, frustration, and annoyance as he pointed at the other kids.
Bryan sighed. “Someday, you’ll be able to do that. You’re OK.” He planted a kiss on Kai’s forehead. “Jon, get in the swing.”
Jon blinked. “What? I’m too big.”
Bryan didn’t have to say it again; a tilt of his head, a shift in his shoulders, and a dip in his brows, plus a flash in his eyes was enough to tell his older son that wasn’t a request, and he wasn’t going to say it again.
With a loud sigh, Jon sank into the swing beside them, his long legs spread since it was too low for him with his height. He gently rocked back and forth, back and forth.
“I am swinging,” Jon said peevishly.
“Jon,” Bryan said in a commanding tone.
“It’s too low.”
Again, just a raised brow was enough that Jon got the message.
Jon walked himself backwards, gripping the chains, then released, holding his legs in the air, careful not to scrape his feet, then bent out at the knees to complete the pumping movement that pushed him backward while avoiding hitting the ground.
Kai watched, fascinated, as his brother swung, too, but completely differently from how the other kids did it, from the way he’d tried to do it only minutes ago. Bryan knew Kai wouldn’t have the strength and dexterity, or the control, to swing Jon’s way, either, but he’d wanted to make a point.
“You know this already, my little mountain goat, but there’s all kinds of ways of doing something. Just because you don’t do it the same as other people, doesn’t mean your way isn’t just as good.”
Kai smiled. “Swing me,” he signed.
Bryan kissed his forehead, then placed Kai in one of the baby swings, the kind that were rounded and had leg holes so you didn’t need to worry about a young child falling while you pushed him. Kai was still plenty small enough to fit, and helped Bryan slip his legs through each hole.
“You were teaching him a lesson?” Jon said, abandoning his swing and going over to them.
Bryan only smiled. “How high should I push?”
Kai pointed toward the sky.
Bryan gave Kai a hard push and watched him soar.
Kai didn’t fight it, just road it, occasionally tilting his head back to show his grin.
“It’s a lesson you should learn yourself,” Bryan said as he pushed Kai, keeping the arcs long and high. “Find your own way. Don’t give up on what you believe in.” Bryan punctuated his words with a stiff nod. “I don’t want Kai growing up in a world of ‘no you can’ts.’ No one will ever reach their own limits if they let other people tell them what those are.”
“So Kai won’t know what he can’t do until he tries.”
Bryan nodded. “But the same goes for you, too. There will be plenty of times in life that people will tell you something can’t be done. But some of the best breakthroughs in human history came about because someone decided they wouldn’t listen to the ‘can’ts.’ Your brother has a fire in him, a determination that I don’t want to see extinguished. If we coddle him, he’ll lose that. Do you understand?”
“Good. Why don’t you push him some more, then see what he wants to do next. I’m going to go grab us some drinks from the car.”
Jon took Kai on a tour of the playground, doing his best to follow his father’s advice and let Kai try things on his own, intervening only when necessary. There was a lot Kai couldn’t do that other kids his age could, but he surprised Jon with his inventiveness and determination. Kai did get frustrated more than once because his braces, while giving him the support he needed--Kai wasn’t able to stand on his own without them--took away a lot of his flexibility and maneuverability. So he would sometimes want to do something, only for his braces to “get in the way.”
This happened on the slide, but they both knew and expected that, and Jon had Kai sit on a small towel they’d brought with them, which helped relieve some of the friction so he wouldn’t get stuck. But it also happened in the jungle gym, a series of boxes of different levels, some of which you needed to crawl through, which tested dexterity that Kai didn’t have. This particular section had a lookout tower, but you needed to climb a ladder to get to it, and though Kai’s upper body was strong, he couldn’t control his legs enough to manage, and his braces were too heavy and cumbersome for him to rely on his upper body alone. He tried and fell several times before he threw what--to everyone else--looked like a temper tantrum, spread on the floor of the little box below the tower, his hands pounding against the surface to make as much noise as he possibly could. But Jon knew that it wasn’t a tantrum like a normal child with a voice would throw. No, this was simply Kai’s equivalent of crying and screaming out his anger at not being able to do something he wanted.
Jon climbed up part of the equipment to reach Kai, to see if he could help his brother, but Kai pushed Jon’s hands aside violently. He used the sides of the cube to pull himself back to his feet and flashed a scowl at Jon. Though behind the angry facade Jon saw tears. Saw a penetrating look like the one from earlier that day, when Kai had pleaded for Jon to explain why. Why couldn’t Kai do things the other children could?
“Sandbox?” Jon asked, using another one of their home signs, an outline of a box, followed by a digging motion.
Kai sniffled and wiped his nose on his arm, finally nodding. One of his legs was spasming visibly, kept in check partially by the brace, and Kai looked tired. Or maybe he was in pain. Still, when Jon expressed his inner doubt on his face, Kai shook his head and pointed more insistently toward the sandbox.
Kai was delighted when Jon recommended Kai take his shoes and braces off so the sand wouldn’t get stuck in the velcro or the metal joints, and once Jon had set Kai into the sandbox, Bryan gave him permission to find a shady spot to read while Bryan stayed on the bench nearby and supervised Kai’s play. Kai loved the sandbox. Loved that he could move around on his own without the orthotics inhibiting his movement, loved how the other children were more on his same level. Right now Kai was burying his legs and building a kind of castle over them, a little boy about his age joining in. The boy was rambling in English, and Bryan wasn’t sure if Kai understood him or not, but they seemed to be communicating fine, and Kai was happy, so Bryan didn’t feel a need to intervene.
He sipped from the thermos of coffee he’d brought with him. Four hours wasn’t nearly enough sleep after back-to-back shifts over the last week, but he treasured time spent with his sons, so he’d manage.
A young mom who had been sitting by herself on one of the other benches saw Bryan and walked over. “Do you mind?”
He shielded his eyes with his hand and shook his head. “Go ahead.”
She smiled at him, clearly flirting.
Bryan smiled back, but not in an encouraging way. He knew he was good looking, and hard physical work kept his large frame in shape. In fact, he was probably more muscular now than he had been in high school. “He yours?” Bryan asked, pointing to the boy playing with Kai.
She smiled that proud smile only a parent could manage. “Connor. He’s nearly four. And he’s yours?”
It was Bryan’s turn to smile. “Kai. He just turned four a few weeks ago. I have another, older son around here somewhere. He’s almost twelve. Too old for the playground. So he’s off reading.” Bryan chuckled. “Is Connor your only child?”
“For now,” she said with a smile, rubbing her belly. “I’m due in December.”
“Oh. Congrats. I have a two-year-old daughter, too, but she’s with her mom today.” After Bryan said that, he realized that could have come off as an invitation. “Visiting grandma,” he added quickly.
It didn’t help the flirtatious eye she cast toward him. “I’m Melody, by the way,” she said, offering her hand.
“Bryan,” he said, accepting it.
“I don’t remember seeing you here before.”
“Oh, I work a lot. This is a special treat.”
“Hey, don’t!” Connor whined.
It looked like Kai’s foot was spasming, causing him to kick some sand in the air. Kai shook his head and started to dig his leg out from the sand mound they’d made. “My leg is acting bad. Sorry,” Kai signed. He still didn’t always understand that most people didn’t know sign language, and he’d often sign to strangers and be confused when they didn’t respond.
“You’re weird,” Connor said.
“Your son doesn’t talk?” Melody said, starting to realize that Kai was different.
Bryan suspected he was going to have to intervene soon. If Kai was hurting, he was going to get grumpy, and when he got grumpy, he sometimes lashed out. Especially if he was frustrated on top of everything. “No, he--” Bryan went to put the thermos in the bag he’d brought, but Kai’s leg kicked again, whacking Connor in the knee, and the boy started to cry. It made Bryan stand up suddenly, knocking the bag over, causing one of Kai’s braces to spill out of it.
Melody saw, then glanced over at Kai, whose left leg was visibly spasming now. “Oh. I’m sorry. I’m so sorry.” That look of pity that Bryan hated. And worse, Melody went to her son and picked him up, carrying him off with barely a goodbye, looking him over like she was worried he’d “catch” Kai’s disability.
Kai was crying now. Whether it was because of pain or losing his playmate, Bryan couldn’t be sure, but he went over and picked him up, carrying him to the bench and settling him in his lap.
“Shh. Shh. It’s OK. You’ll be OK.” Bryan tested Kai’s legs to see how tight they were. A massage and stretch would help, but Kai needed some medicine.
Kai cried harder. “Hurt. Hurt.” Kai said, signing over the part of his legs that were apparently hurting him most.
“I know, I know baby boy. I’m going to mix you some medicine, OK?” Bryan shuffled Kai to one side so he could bend over and grab their bag, yanking it back onto the bench. He dug around until he found the tupperware container where he’d brought some applesauce, then a spoon and the baggie with Kai’s muscle relaxant. It wasn’t easy to do it while still holding Kai, especially with his leg spasming so bad, but he managed to get the dropper into the vial of liquid medicine and measure out the dose, then squeeze it into the applesauce and stir it up. Kai wasn’t supposed to take the medicine on its own, but instead had to eat it with soft food or drink it in juice.
Kai was really hurting, tears still falling from his eyes and all his usual independent fire leaving him as he leaned against his father and accepted each spoonful of the dosed applesauce until it was all gone. None of his usual fussing about food.
“You’re such a good boy,” Bryan soothed, shifting Kai in his lap so he could stretch each leg the way the physical therapist had taught him to do. Working his thumb into the arches of Kai’s feet to relieve the contracted muscles. Rubbing, kneading, stretching Kai’s small limbs to get them to relax. Bryan was just finishing when he could feel from Kai’s slackening posture that the medicine was starting to work. He cradled Kai in his arms, Kai’s head resting on his shoulder, his eyes half open, groggy from the muscle relaxant. “Such a good boy. You did so good today. I’m so proud of you.”
Kai was trying to fight sleep, but it was a losing battle. He snuggled into Bryan’s shoulder and finally let his eyes close the rest of the way. Yawning hugely, but his tears were dried, and his legs weren’t spasming anymore.
“Jon! Jon!” Bryan called, scanning the park without standing up. He noticed more people staring--kids and adults alike--but he ignored them.
Jon finally came rushing over, his book under one arm, looking panicked. “Kai . . . ?”
“He’s OK. Just spasming. The medicine hit and I think he’s asleep.”
Jon sighed, a huge breath of relief, and smoothed Kai’s hair. “Yeah, he’s sleeping. Let me take him so you can pack up and we can go home.”
Kai’s little hands were fisted in the fabric of Bryan’s shirt, and it took some doing to hand him over, but finally Jon had him on his hip, Kai’s head on his shoulder.
“Too much fun, I guess,” Bryan said fondly as he zipped up the bag.
“Do you think Kai will grow up and be able to . . . I mean, Mom and his doctors don’t think Kai will be able . . .” Jon sighed. Adjusted Kai in his arms as he followed their father back to the car. “Do you think he’ll always need someone to help him?”
“It’s my job as a father, and yours, as a big brother, to take care of him, but to also prepare him to handle the world on his own. And Kai will. I’m sure of it. He may have it harder than you, but he’ll do it. It’s important that we believe in him so he believes in himself, even if not everyone does. Never forget that, OK?” Bryan ruffled Jon’s hair playfully.
Jon laughed and ducked away, cradling Kai close to make sure he wasn’t jostled too much, but he was in a deep drug-induced sleep and wouldn’t wake for hours. They walked until they got to the car, and then Bryan helped Jon get Kai settled. “Dad?”
“Yeah?” Bryan asked, a little distracted.
“So . . . I . . . uh,” Jon swallowed. “I got a letter saying I got permission to take half my classes at the high school next year.”
“What? Oh my God, that’s amazing, Jon. You are so smart. I’m so proud of you!” Bryan finished with Kai and rubbed Jon’s head again.
Jon blushed a little, but he smiled. “I need you to sign the form. They need a parent’s permission. Since I’m so young.”
“Of course I’ll sign! Why wouldn’t I?” Bryan closed the back door and climbed into the driver’s seat.
Jon did the same on the other side. He glanced up at the rearview mirror and caught a glimpse of Kai, looking so innocent in his sleep, and he sighed. “If I go to the high school, I’ll be busy. I won’t be home as much, and I’ll have a lot more homework and projects. I won’t be able to take care of Sara and Kai the same way.”
“We’ll figure it out. Your education is important. Your mom can take care of Sara, and Kai’s more independent now. Everything will be OK.”
Jon sighed and nodded. He was quiet, and Bryan suspected Jon was worrying about Kai. No matter how much Jon wanted to finally be in classes that challenged him, where he could actually participate instead of studying something else the entire period because he was so bored, Jon was the kind of person who would sacrifice all of that for his siblings. More work would mean less free time in the afternoons and evenings, and it wouldn’t be as easy for him to take a day off school if Kai was sick. Honestly, Bryan knew it would make things harder for everyone, but Jon didn’t need to know that. He still wasn’t sure how he and Ann produced a son who was smart enough to get into Mensa as a teen, but he wasn’t going to let Jon give up his own future for his family. Bryan knew enough about that, and while he had no regrets--he loved his children more than he ever dreamed it was possible--Jon was only twelve. It was too young for him not to be a little selfish.
“You worry more than any adult I’ve ever met,” Bryan teased. “It's OK to focus on yourself sometimes. I love how much you care about others, especially your brother. But you need to take care of yourself, too.”
Continue to February 6, 2001 - Part I ------>