Authors: Terry Trueman
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 â¦,” 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 athleteâmuscular 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 heartâbaaaaaddddd!
I
t's been eight days since Ally and Paul got togetherâthe 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.
O
ne 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 uncleâwell, 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?âwell, 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.
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.
Y
esterday 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.
Paul smiles at her and says, “Howdy, Tex.”
Debi answers “howdy” right back.
Paul asks, “You rustling cattle out on the ranch?”
Debi smiles. “You funny, B-B-B-Baul. You should be comedy man.”
My reaction to her wardrobe is a little less charitable than my brother's. I'd like to say to Debi, “As a person with Down syndrome already, overweight, stubby, obviously a couple sandwiches short of a picnic, could you possibly make yourself look any more ridiculous?”
After Debi's bus arrives to take her to the Learning Skills Program, Paul and Mom talk in the kitchen before he leaves for school.
Paul says, “I'm thinking a little bit about Stanford, more as a baseball school than for football or hoops.”
Mom answers, “It's a great school.”
Paul starts saying, “I know it's expensive butâ”
Mom interrupts. “Wherever you decide to go, sweetie, you know your dad and I will do all we can to help. We're both so proud of you.”
After another mind-numbing school day, Mom picks me up and parks me by the window. It's not raining today, and in Seattle at this time of year, that's a minimiracle. Plus the sun is out and there is no wind to speak of, just a soft breeze. I can see the willow and locust trees in our yard, their little leaves mostly motionless and the sun shining on them. A few clouds, puffy, like cotton balls, sit in the bright blue sky. It's almost spring. But I have a hard time feeling very happy about it.
I'm thinking about Mom and Paul's conversation from this morning. I guess I'm feeling torn. Torn between pride for all my brother's accomplishments and for all the opportunities they are bringing him, but I feel angry too. I try to bring myself back to that positive place where I can remember a few good things about my life, but I can't. All I can think of is why? Why couldn't I have gotten just some of the things he's gotâlegs that run, an arm that throws, a girl like Ally? Heck,
any
girl.