“Okay, buddy,” William says as he lifts me from my wheelchair and helps me walk. I always say I can’t walk, but if someone holds me under my arms, like William is doing right now, and kind of carries me along, my legs will move one foot after another until William lowers me to the floor into a kneeling position. Now I can stay upright and rock back and forth. This is funny because I don’t do this by choice; my body just rocks back and forth and I can’t stop it any more than start it—it just happens.
William rolls me onto my back, sort of gently lifting me by my legs so whatever size mess is in my diaper doesn’t get all mashed up even worse than it already is and spread around. He unsnaps the legs on my pants. He lifts my pant legs up and out of the way and undoes my disposable diaper by tearing the little taped fasteners, folds it over on itself, and sets it aside. Using a handy wipe from a big plastic tub next to the changing blanket, he wipes me until I’m clean. He’s never rough or in a hurry. Now he puts another diaper on me, snug but not too tight.
“That feel better?” he almost always asks.
I think back to him, “Yeah, thank you, William—I feel really bad you have to do this.”
And sometimes, like now, I wonder if he thinks back to me, “No problem, Shawn—you’re a good kid and you can’t help it.”
Truthfully, I kind of doubt that William thinks this, but his kindness makes me realize that he really does care about me.
This whole diaper-changing thing also makes me wonder about the huge difference between kindness and meanness. Think about it—I don’t have all that many interactions with people, I’m mostly just sort of “handled,” more of a problem than a person. William could be a total dick toward me, but he never is. Seems to me there are a million examples of how nice or how cruel people act every moment of every day. The way William so patiently and tenderly helps me is a great example of kindness. But meanness is always about half an inch away too. Life is such a jumbled mess of good and bad and totally random things, like having C.P. or not having it. William is kind, for no real reason, he just is that way. Other people, not so much.
This morning, for example, Mom was driving me to school like she always does in our special handicap-equipped van. Our house is on Queen Anne Hill, and the road leading down the hill from our place is winding and two lanes, one lane in each direction. There are a couple signs that read 30 MPH, but Mom takes some of the curves slower, probably thinking about me in my wheelchair bolted behind her and not wanting to toss me around too much.
I only caught a brief glimpse of a guy in a black pickup truck trailing us. With my eyes, a glimpse is all I usually catch of anything, so I’ve learned to observe as much as I can. The guy driving the truck looked middle-aged. He had a mustache and a baseball cap, a cigarette hanging from his lips. He was tailgating us, no more than a couple feet off our back bumper. I couldn’t tell if Mom noticed him or not.
At the bottom of the hill, there’s a bank with a parking lot that has driveway entries and exits coming off both the road we were on and the main arterial ahead of us. My focus had shifted away from the side mirror and the truck by then. I wouldn’t have given it another thought at all if I hadn’t been suddenly startled by the roar of his incredibly loud horn blast, no little beep-beep, but a sustained HOOONNNNNKKK! This sound caused my brain to shift my head in its direction and my legs and arms to twitch and flail around.
The black truck raced into the bank’s parking lot, its horn still blaring, and then I saw the driver lean forward and give mom a dirty look and the middle finger salute. It was like he thought she’d committed some huge crime against him by driving carefully down the hill. On the truck’s back bumper were a couple stickers: MY KID CAN BEAT UP YOUR HONOR STUDENT and KEEP YOUR HANDS OFF MY LIBERTY. And in the rear window of the truck’s cab there was a cartoon of a little boy peeing and staring backward over his shoulder with a nasty snarly smile. The truck bounced pretty hard, as if it were in a four-wheel, cross-country rally on TV. It shot through the parking lot and roared out onto the arterial, forcing several other cars to brake to avoid him.
Everything happened so fast. But when I finally managed to catch a glimpse of Mom, her face reflected in the rearview mirror of the van, she appeared calm and relaxed, as if nothing had happened. Not me, though. I felt tense and mad. I remembered a line I heard once in a movie where the good guy gets angry at someone and says of him, “I wish him ill.” In my own road rage toward that guy in the black pickup truck, I wished him ill every bit as much as I wish good things in life for William, my primary diaper-changer. I’m no perfect little angel, that’s for sure—I mean, would a perfect little angel wish that he could jump up out of his wheelchair, tear his T-shirt off like some steroid-addled wrestle-mania villain, and rip that jerkwad’s lungs out? I’m just a kid who once in a while wishes his life could be different than it is and who knows that wishes don’t change things all the time—or any of the time for some stuff.
5
It’s the next day, early afternoon. The front door to our house flies open and Paul bursts through. “Hey!” he yells. He’s in a great mood. A few days ago his hoops team won the state championship and he was the MVP of the game and he’s still riding high. Paul comes into the family room where Cindy and Ally sit, pausing only long enough to get a kiss on the cheek from Mom, who is in the kitchen. Cindy jumps up and gives him a high five. He walks over to me sitting in my wheelchair and messes up my hair. “Hey bro,” he says. With his fingers he combs my hair back into place.
Something is different about Paul lately. I can’t say exactly what it is, but for a long time he’s been so angry with our dad in particular and the world in general. I know from what I’ve overheard that Paul has been in a lot of fights—and I’ve seen him lose his temper more than once. It’s not a pretty sight. But in the past few weeks, his anger seems to have lessened. I’m glad for him. He’s always been an amazing brother, protective and kind. I love him.
He loves me a lot too. And he’s proved it in the most important ways. My brother saved my life even though he doesn’t know it. Paul phoned from Spokane just a few minutes after they won their basketball game, the night I was talking about before, the night that my dad planned to “end my pain.” Paul had wanted to share the moment with me. Dad was leaning over me, a pillow in his hands, when the phone rang. Dad answered. He and Paul talked. I was out of my body in a seizure during most of their conversation, but when I got back from my seizure, I heard Dad say, “I’ll tell him, Paul, I promise.”
When he hung up the phone, Dad’s face was covered in tears and he said to me, “Your brother asked me to tell you that he dedicated his game to you—and that he loves you.” Then Dad stood and leaned over me in my crib, tossed the pillow away, and pulled my blankets back up to my neck. He whispered, “You sleep now, Shawn. Sweet dreams.” And he walked quietly out of my bedroom, closing the door behind him. That was the end of my worries about Dad putting an end to my pain. And it was also the beginning of the rest of my life.
Today I watch Paul and Ally make eye contact. Neither says a word but both smile and blush. A long pause. Paul finally says, “Hi, Ally.”
She says, “Hi …,” pausing a moment longer, then adding, “Congratulations.” More blushing. They keep staring at each other.
In an instant my heart breaks into about a thousand pieces. I feel tears come to my eyes, totally involuntary tears since I can’t make myself cry any more than I can make myself not cry. My breathing, also out of my control, starts to speed along with my racing heartbeat. Sweat pours down my armpits and covers my forehead and temples. Ally Williamson, the girl I love more than anybody in the world, the girl I fantasize might someday love me in return, is going to be with my brother.
Paul is a great athlete—muscular and tough and brave, the kind of guy every guy envies, the kind of guy every girl dreams about. And even though I love Ally, want her, desperately obsess about her, and even though I noticed her first, Paul has no way of knowing how I feel. It�
�s pretty obvious Ally likes him too. How can I fantasize about Ally if she’s gonna be with Paul?
Man, no kidding, could life suck any worse than this? Seriously, if I can’t fantasize about loving Ally, if I can’t even hope and dream of it, what’s the point in being alive? And really, as long as guys like Paul are around, how can somebody like me ever hope to connect with anybody, not just Ally but with anyone? Maybe when my dad was thinking about “ending my pain,” he had the right idea, even if he doesn’t have a clue what real pain is for me.
Okay, I know, here I am, the Heartbreak Retard running wild. But I don’t care. Hey! For the first time, I feel like every other teen with a broken heart—baaaaaddddd!
6
It’s been eight days since Ally and Paul got together—the eight worst, most self-pitying-pathetic-little-me days of my entire life. What started with blushing and staring into each other’s eyes like a teen couple in one of those dreadful Lifetime (should be called Lifelong) TV movies has kept marching right along for Paul and Ally. Every stinking day.
A big difference for me between being in love and being brokenhearted is that nothing changes in my world except for how I feel. I can’t get up and walk around depressed, or break stuff, or give killer stares to total strangers just because they’re too happy or something. My hopeless inability to connect with others in any way isn’t true only of love and lost love; it’s true of everything for me. When something terrible happens, I can’t scream obscenities, or cut myself, or throw myself off the Space Needle. Things happen in my life, like in everybody else’s, but I can’t do anything about it, including telling anyone how I feel.
I could stand to blow off a little steam right now, especially since life is smacking me down pretty bad this week. Can’t a gimped-out kid catch a break? Today Mom and Cindy and I went into the pharmacy to pick up my anti-seizure medicine. Mom went off to shop for a few more things, and Cindy was rolling me down an aisle in my wheelchair. I started vocalizing really loudly.
A big lady in a floral dress came around to see what all the commotion was about. I am awfully loud, but the look on that lady’s face when she saw me, the revulsion in her eyes, was malignant. Cindy’s hands shook on the handles of my wheelchair, bad enough so I could feel it. The woman couldn’t tear her eyes away, like I was one of the fifty-cent sideshows at an old-time circus, Two-Ton Tony or The Bearded Lady or Shawn the Ahhhhhh Freak.
Cindy snapped at the woman who was staring, “Yo, take a picture, it’ll last longer!” shooting laser death glares at her.
The lady went beet red, turned on her heel, and left.
Cindy came around and knelt in front of me and took my hands in hers. Her hands still quivered, and she started sobbing. She had to take deep breaths before she could even speak. Some snot was running out of her nose and she kept sniffing. Finally Cindy let go of one of my hands and wiped her nose with the back of her hand.
“Don’t pay attention to her, Shawn,” she said, her voice soft and shaking, pausing and taking a couple deep breaths. “Don’t think about her.”
Much as I love my sister, I knew that Cindy wasn’t talking to me; she was talking to herself. And I knew that she felt terrible, an ugly mix of embarrassed, pissed, and helpless. To tell the truth, I felt that way too.
7
One thing about Mom is the way she always stays positive. She is feeding me lumpy cottage cheese mixed with applesauce. As she gently scrapes the edge of the spoon up my chin to capture the escaping food drool, she says, “Are you as excited as I am about Debi and Rusty coming to live with us?”
And who, you may wonder, are these “exciting” new roomies, Debi and Rusty?
Debi Eagen is a forty-one-year-old woman with Down syndrome, a genetic condition that makes a person developmentally disabled or, if you’re into labels, “retarded.”
By the way, about this word, retard, and my just saying it, I know that often people call someone a “retard” in a teasing way. Other times they say it to be cruel. It’s just a word. The folks who get most mad about it are the people in our lives who care for us and love us and want to protect us. It’s not us retards ourselves. Heck, we know what we are.
But the way I see it is this: if African American rappers want to call themselves by the “n” word, they can. And if people from any ethnic, religious, racial, sexual orientation, or any group, get to use the slang of their choice to describe themselves, then we people who are labeled developmentally disabled can sure as hell use the “r” word if we want to. Makes sense, right?
So Debi is a retard, like me. And like most people with Down syndrome, she’s slow but not helpless, or nearly as bad off as I appear to be. She may have the mental age of a four- or five-year-old kid, but she can do some things for herself, and compared to what I can’t do, well, there’s no comparison.
Many folks with Down are pretty active. On weekdays Debi goes to the North Neighborhood Community Center’s Learning Skills Program. Mom tried to get me into weekend activities there once, but it’s an adults-only program, plus you have to be able to use the bathroom on your own. No way. I’m a kid, not an “adults-only,” and potty training isn’t exactly in my immediate future (okay, it ain’t even in my distant future), so the weekend thing didn’t work out for me. But Debi will be going there Mondays through Fridays.
Rusty is coming to live with us too. But fear not, our house isn’t being overrun by a sudden attack of D.D. hordes. Rusty’s not developmentally disabled. In fact, Rusty’s not even human: Vampire? Zombie? Devil or angel? Nope, not even close. Rusty is a dog.
So why are Debi and Rusty moving in with us? Debi is Mom’s cousin; her parents are my mom’s aunt and uncle—well, they were anyway. Seven years ago Debi’s mother died from Alzheimer’s. Debi’s dad passed away last month, leaving Debi with no one to take care of her. Maybe everybody thought, since my mom already has one retard, why not give her another? I know that sounds harsh, but I think it’s true, at least partly true. Probably the bigger reason that Mom stepped up, though, is that there was no one else to take care of Debi, much less her dog.
We have two extra bedrooms in our daylight basement area that is almost like an apartment by itself, plenty of space for Debi and Rusty. Mom’s question, am I excited about Debi and Rusty moving in?—well, I guess I’m a tiny bit excited, maybe more like curious, about what it will be like to have Debi living with us. As for Rusty, not so much.
I heard Mom describing Rusty to Cindy and Paul as being “excitable,” but since she also said that he bites people, I think that’s a mild way of putting it. Excited? About a killer canine that bites people? Like I said, not exactly.
8
I’m parked at my usual place by the window when Debi and Mrs. Pearson, the social worker from the nursing home where Debi’s been living, arrive to check out our place.
Mom says, “Hi, Debi.”
Debi answers, “I like McDonnos.”
Mom glances at Mrs. Pearson, who says “McDonald’s. She likes McDonald’s. She says that a lot.”
Debi interjects, “I want go dare now.”
“After our visit, Debi,” Mrs. Pearson says. “Remember, we’re here to see your cousin Lindy.”
Debi blinks and looks at Mom, then nods. “Yeth,” she says softly.
Mom says “hi” again and Debi answers “hi” back.
My brain picks this moment to vocalize, so I chip in a loud “Ahhhhhh.” Hey, always glad to be part of the fun, right?
Debi looks over at me and asks, “Who dat boy?”
Mom answers, “That’s my son Shawn. Would you like to meet him?”
“No,” Debi answers, perfectly clear.
“Maybe later,” Mom says.
“No tanks,” Debi says.
I’m cool with Debi not wanting to meet me. I like that she’s so honest. I mean let’s face it, I’m a little weird looking, sitting here like an idiot.
Mom says, “Shawn’s going to stay here while I show you your room, Debi. Follow me.”
Mom leads Mrs. Pearson and Debi down the curving, circular stairway.
I hear them some, not real clearly, in the basement, their voices carrying up the stairs.
Mom: “Do you think you’ll like it here, Debi?”
Debi: “… mumble-mumble … McDonnos.”
Mrs. Pearson: “Yes, Debi, McDonald’s is good. Do you like your room? It’s a nice room, huh?”
Debi: “Yeth. I like. Rusty have a bed too?”
Mom: “Sure, Debi, Rusty will be welcome.”
When they come back upstairs, Mom and Mrs. Pearson shake hands. Mrs. Pearson says, “I’m sure there’ll be no problem whatsoever. I’ll sign off for her things to be delivered tomorrow, and she’ll be able to come the day after.”
“That’s fine,” Mom says.
As Debi and Mrs. Pearson start walking toward the front door, Mom nods at me. “Debi,” she says, “my son’s name is Shawn. You can meet him next time you come, okay?”
Debi looks back at me and stutters. “S-S-S … Swan.”
Mom smiles. “Close enough.”
Before I can stop my smart-ass mind, I think, “Duh-Duh-Duh … Debi.”
Come on, Shawn, knock it off! I’d kick myself if I could, for making fun of her, but I think, still sarcastically imitating Debi’s voice, “Tanks a lot, Mom.” Why am I acting like a spoiled pea brain? I’m probably just jealous. After all, I almost never get to visit McDonno … I mean, McDonald’s.
9
Yesterday Debi moved in. She had dinner with us, and then she went off to bed.
She comes out of her room this morning ready to go to what she calls “schoo,” dressed in a Winnie the Pooh sweatshirt, bright yellow pants with a fire-engine-red cowboy hat perched on her head, maybe five sizes too small.
Life Happens Next Page 2
