Life Happens Next (2 page)

Okay, let's make this 12 items:

Ah, what the heck, just for good luck let's make it 13. I didn't even mention my dream life yet. Did I say dream life? Hey, Ally, here I come!

L
ast night I had another dream about Ally. I was flying; soaring is more like it. I do this a lot in dreams and also when I have seizures. That's when my spirit escapes my body and I'm no longer trapped, not limited, not so isolated. That's why I don't mind my seizures, even though I know, from hearing my family talk, that when I'm having one it looks like I'm being tortured to death. When you live in a body with zero control, escaping it, even if it's when you're asleep or having a grand mal seizure, is great.

When I have a seizure, I am released from the crippling constraints of my useless body. Time and space have no control over me. Neither does gravity or any other “real” things like walls, fences, concrete, wood, asphalt, steel bars. Nothing can keep me from going where I want to go or hold me back at all. But sometimes during seizures, and like in this dream, I don't choose a destination. It's more like a destination chooses me.

In my dream last night, I was coasting over Puget Sound, its dark water shimmering in bright moonlight, sea birds flying by my side, their black eyes staring into my eyes. After a while I shot up toward the stars. Then I swooped down and could see the lights of people's houses and streetlamps. I spotted my house and dived back.

Now it was daylight. I saw Ally sitting in our living room. She looked up and saw me. I paused, still floating outside the window. She smiled at me. And she spoke without words, her thoughts coming through loud and clear: “Shawn, I love you.”

Suddenly I was standing up tall and strong on my own two feet. And Ally came running out of the house, all slow motion, jiggling in just the right places and smiling wide. She was unbelievably happy and beautiful.

“I'm ready to go!” she said. I turned around and there was a gorgeous red Corvette waiting for us in the driveway. We settled into the leather bucket seats and Ally puckered her lips and threw me a kiss. That kiss floated through space toward my cheek and I power-shifted the 'vette, banging it hard from second into third, like a hotrod king in a video game, like a NASCAR wild man defying death. My engine screamed, Ally purred, and I …

… woke up. Lying in my crib with a wet diaper and a deep longing to be back in my dream—back where Ally and I were together. If I could have squeezed my eyes tight to make it happen, I'd have done it in a heartbeat—but I can't control my eyelids any more than I can control
any
part of my body.

So what I love about dreams and seizures is that I'm in control in my travels and my spirit is free. I mean how could I
not
have mixed emotions about returning to my body? I know I should be thankful for still being alive and all, but I always feel sad that my travels and adventures are over. This morning it was hard to wake up and realize that Ally doesn't love me. My only choice was to launch into a daydream to avoid the reality of my growing diaper rash.

Like most boys, my best daydreams are R-rated—R for restricted audience, no one under 17 allowed. In this morning's daydream, I went to Ally's house or what I thought her house might look like. I have no idea how I knew where it was, but in daydreams you just know stuff. Somehow I knew where her room was too. I peeked in and saw her single bed already made, her closet door ajar, filled with tops and jeans, flannels and hoodies and jackets, her shoes stacked on a shoe rack.

I heard a shower running and couldn't resist moving toward the bathroom at the end of the hallway. Light shone from below the closed bathroom door with a tiny bit of steam. I felt the warmth of the room, the moist air even before I got to the door and paused.

I knew for sure that it was Ally showering. From outside I could feel her presence. Then it was like Ally could also tell I was there. “Come join me, Shawn. After all, we're in love, aren't we?”

I've never actually had a shower in my life. Like I mentioned before, my mom bathes me, but I can't be left alone for even a second in a bathtub, because if I had a seizure or even just fell over, I'd drown. But in the daydream we were in the shower together, and it seemed as though Ally and I had been like this many times before. It was completely natural. Like I said, this dream is R-rated, so I won't go into all the details. We were just two people in the shower together and the girl was really, really
hot
, so you do the math.

The downside was leaving my daydream. I wanted to stay where I had been, longed to keep feeling the warm water and Ally's touch lingering … sigh … and you wonder why I like dreams so much?

D
reaming is one thing. Reality is something else. Like every Monday through Friday morning, I'm at school. And like most every other day, I've just made a mess in my diaper. You might think I'd get used to this since I've never used a toilet in my life, but I hate it. It's not like I have any choice in the matter. I know when I need to go, either number one or number two, and I wish I could just say, “Excuse me please, I need to use the bathroom.” But I can't. I can't say anything. I can't tap my foot, or make my eyes blink, or wiggle my pinky as a signal to get me to the john. I can't push a button on a communication board or make myself say “Ahhhhhh” as a signal. I can't do anything except, well, just let it happen and wait for someone to check me out or to notice the smell and say, “Shawn needs changing.”

I don't feel humiliation, exactly, or embarrassment since there's nothing I can do to change the situation, but I always feel sad and sorry for whoever it is who changes me. And at school that job usually goes to the teacher's aide, William.

“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.

I
t'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.