I was the one who named her. Mom and Dad kept suggesting dumb names like Fuzzy and Coffee, but I knew as soon as I saw her what her name should be. I pointed to the bowl on the table, which held my most favorite, favorite candies—butterscotch caramel. They’re soft enough to melt in my mouth, so I don’t have to chew, and oh, are they delicious!
“You want to call her Candy?” Dad asked. I shook my head no, gently, so the sleeping puppy wouldn’t wake up.
“Caramel?” Mom asked.
I shook my head once more.
“Why don’t we call her Stinky?” Dad suggested with a grin. Mom and I just glared at him. I continued to point to the candy dish.
Finally, Mom said, “I know! You want to call her Butterscotch?”
I wanted to shriek, but I forced myself to stay calm. I tried real hard not to do anything that would knock the puppy off my lap. “Uh,” I said softly as I continued to stroke the dog’s silky fur. I didn’t know that anything could be so soft. And she was all mine. It was the best birthday I ever had.
Butterscotch sleeps at the foot of my bed every night. It’s like she read the book on what a great dog ought to do: bark only when a stranger is at the door, never pee or poop in the house (she got over that puppy stuff), and keep Melody happy. Butterscotch doesn’t care that I can’t talk to her—she knows I love her. She just gets it.
One day, a few months after I got her, I fell out of my wheelchair. It happens. Mom had given me lunch, taken me to the toilet, and wheeled me back into my room. Butterscotch trotted behind—never in the way, just close by me all the time. Mom popped in a DVD for me and made sure my hands were properly positioned so I could rewind and fast-forward the film. She didn’t notice my seat belt wasn’t fastened, and neither did I.
She traveled up and down the stairs doing several loads of laundry—I’m awfully messy—and I guess she had started fixing dinner. The rich aroma of simmering tomato sauce floated up the stairs. Mom knows I love spaghetti.
She peeked her head in to check on me and said, “I’m going to lie down for a couple of minutes, Melody. Are you okay for a few?”
I nodded and pointed my arm toward the door to tell her to go ahead. My movie was getting good anyway. Butterscotch sat curled next to my chair; she’d outgrown my lap. So Mom blew me a kiss and closed the door.
I was watching something I’d seen a million times— The Wizard of Oz. I think most people in the world can quote sections of that movie—no extra brains required— because it’s one of the movies that gets played over and over again on cable channels. But I know every single word in it. I know what Dorothy will say before she even opens her mouth. “I don’t think we’re in Kansas anymore, Toto!” It makes me smile. I’ve never been to Kansas or Oz or anywhere more than a few miles away from home.
Even though I knew it was coming, when the movie got to the part where the Tin Man does that stiff little dance to the music of “If I Only Had a Heart,” I cracked up. I laughed so hard, I jerked forward in my chair and found myself facedown on the floor.
Butterscotch jumped up immediately, sniffing me and making sure I wasn’t hurt. I was fine, but I couldn’t get back up in my chair. Worse, I was going to miss the part where the Cowardly Lion gets smacked on the nose by Dorothy. I wondered how long Mom’s nap would last.
I didn’t scream like that time Ollie had jumped out of the bowl. I wasn’t upset, just a little uncomfortable. I tried to flip over, but I couldn’t from the position I had landed in. If I could have seen the television from where I had fallen, I might have been okay on the floor for a little while. Butterscotch makes a great pillow.
But Butterscotch went to the closed door and scratched. I could hear her claws ripping at the wood. Dad wouldn’t be happy when he saw that. But Mom didn’t come. So Butterscotch barked—first a couple of tentative yips, then louder and more urgent. Finally, she jumped up and threw her whole body against the door, making loud thuds. She’d bark, then thud. Bark, then thud. Mom couldn’t ignore all that racket.
I’m sure it was only a few minutes, but it seemed like longer. Mom came to the door, looking groggy. Her hair was all messed up. “What’s going on in here?” she began. Then she saw me. “Oh! Melody, baby! Are you okay?” She ran to me, sat down on the floor, and lifted me onto her lap.
She checked everything—my arms and legs, my back, my face, my scalp, even my tongue. I wanted to tell her I was fine. All she needed to do was put me back in my chair, but she had to do the Mom thing and double-check.
“Butterscotch, you’re a good, good girl!” she said as she petted the dog and hugged me tight. “Doubles on the dog food tonight!”
I’m sure Butterscotch would have preferred a nice thick bone instead, but she can’t talk either, so both my dog and I get what they give us. Mom carefully put me back in my chair and made sure my seat belt was latched correctly. Butterscotch curled up right in front of me, making sure, I guess, that if I slid out again, she’d be there to soften the fall. That dog is amazing.
Mom restarted the video from the beginning, but somehow that yellow brick road had lost some of its magic glow. Nobody really gets wishes granted by the Great Oz.
As I watched, I wondered if I were blown to Oz with my dog, what would we ask the wizard for?
Hmmm. Brains? I’ve got plenty.
Courage? Butterscotch is scared of nothing!
A heart? We’ve got lots of heart, me and my pup.
So what would I ask for? I’d like to sing like the Cowardly Lion and dance like the Tin Man. Neither one of them did those things very well, but that would be good enough for me.
CHAPTER 9
When I was eight, things changed.
I think I knew Mom was going to have a baby even before she did. She smelled different, like new soap. Her skin felt softer and warmer.
She picked me up out of bed one morning, then almost let me fall back on the mattress. “Whew!” she said. “You’re getting awfully heavy, Melody. I’m going to have to start lifting weights!” Her forehead had broken out in sweat.
I don’t think I’d gained any weight. It was Mom who was different. She sat down on the chair next to my bed for a few minutes, then suddenly ran out of the room. I heard her throwing up in the bathroom. She came back a few minutes later, looking pale. Her breath smelled like mouthwash. “I must have eaten something funky,” she mumbled as she got me dressed. But I think she knew even then. I bet she was scared.
When Mom finally figured it out, she sat down with me to break the news. “Melody, I have something wonderful to tell you!”
I did my best to look curious.
“You’re going to have a baby brother or sister real soon.”
I grinned and did my best imitation of surprise and excitement. I reached out and hugged her. Then I patted her stomach and pointed to myself. She knew what I meant.
She looked me right in the eye. “We’re gonna pray that this little one is fat and fine and healthy,” she told me. “You know we love you, Melody—just as you are. But we’re hoping this child doesn’t have to face the challenges that you do.”
Me too.
From then on, she put Dad in charge of lifting me. And although she never talked about it again in front of me, I knew she was worried. She gobbled gigantic green vitamin pills, ate lots of fresh oranges and apples, and she had this habit of touching her bulging belly and mumbling a prayer. I could tell that Dad was scared too, but his worry showed up in funny little ways, like bringing Mom piles of purple irises—her favorite flower—or fixing her gallons of grape Kool-Aid or big plates of grapes. I don’t know what made Mom crave purple stuff.
Instead of watching hours and hours of the Discovery Channel, I found myself in my room staring at an empty TV screen—just thinking in the silence.
I knew that a new baby was really time-consuming. And I also knew I took up a lot of time. How would my parents ever have time for both of us?
Then a really horrible thought popped into my brain. What if they
decided to look into Dr. Hugely’s suggestions? I couldn’t make the thought go away.
One Saturday afternoon a few months before the baby was born, I was curled up on our sofa, dozing. Mom had put pillows around me to make sure I didn’t fall off. Butterscotch slept nearby, and Dad’s favorite jazz station played a saxophone snoozer. Mom and Dad sat together on the smaller sofa, talking together quietly. I’m sure they thought I was asleep.
“What if?” Mom said, her voice tight.
“It won’t be. The chances are so small, honey,” Dad replied, but he sounded unsure.
“I couldn’t bear it,” Mom told him.
“You’d find the strength,” he said calmly. “But it’s not going to happen. The odds are—”
“But what if?” she insisted, interrupting him, and for only the second time I could remember, my mother started to cry.
“Everything is gonna be fine,” my father said, trying to soothe her. “We’ve got to think positive thoughts.”
“It’s all because of me,” my mother said softly.
I perked up and listened harder.
“What do you mean?” Dad asked.
“It’s my fault that Melody is like she is.” Mom was crying really hard then. I could hardly make out her words.
“Diane, that’s crazy! You can’t hold on to that kind of guilt. These things just happen.” I could tell Dad was trying to be reasonable.
“No! I’m the mother!” she wailed. “It was my job to bring a child into the world safely, and I screwed it up! Every other woman on the planet is able to give birth to a normal baby. There must be something wrong with me!”
“Sweetheart, it’s not your fault. It’s not your fault,” and I could hear him pull my mom to him.
“But, Chuck, I’m so scared this baby is going to be messed up too!” she said in a shuddering breath.
“Please don’t go there—don’t even think like that,” Dad murmured. “Statistically, what are the chances? Two children who . . .”
And I suddenly couldn’t hear him anymore because my head was pulsing with the things I wanted to say but couldn’t.
I wanted to tell Mom that I was sorry she was so sad and so scared.
That it wasn’t her fault.
That I was just the way I was and she had nothing to do with it.
The part that hurt the most is I couldn’t tell her any of it.
During Mom’s entire pregnancy, however, my parents’ attention to me never wavered, even though, yeah, I worried that it would. Dad did lots more as Mom got closer to her due date. He did some of the laundry, most of the cooking, and all the lifting and carrying. I got to school on time every day, got my stories read to me every night, and the three of us waited and hoped and prayed.
But Penny was born perfect and copper-bright, just like her name. From the minute she came home from the hospital, she was a really happy baby. Mom truly did carry a little bundle of joy into the house.
But I guess a new baby is rough on any parents, especially if they already have a kid like me at home. Sometimes there would be arguments. I could hear them through the bedroom wall.
“I need more help around here, Chuck,” Mom would say, trying to keep her voice low.
“Well, you pay more attention to the baby than you do to me!”
“If you’d help more, I’d have more time for you! With two kids, and one of them Melody, it’s not easy!”
“I have to go to work, you know!”
“I have a job too! Don’t throw that in my face. Plus, I’m up twice a night to nurse the baby!”
“I know. I know. I’m sorry, Diane.” Dad always softened and let Mom win.
“It’s just I’m so tired all the time,” Mom would say, her voice muffled.
“I’m sorry. I’ll do better. I promise. I’ll take off work tomorrow and take care of both girls. Why don’t you go catch a movie or take Mrs. Valencia out to lunch?”
It would get quiet once more, but even so, somehow I always ended up feeling a teeny bit guilty. Life sure would be easier if they had only one child—one with working parts.
I once got one of those electronic dolls for Christmas. It was supposed to talk and cry and move its arms and legs if you pushed the right buttons. But when we opened the box, one of the arms had come off, and all the doll did, no matter which button you pushed, was squeak. Mom took it back to the store and got her money back.
I wonder if she ever wished she could get a refund for me.
But Penny! Penny really was a perfect baby. After just a few months she was sleeping through the night and smiling through each day. She sat up exactly when infants are supposed to, rolled over right on schedule, and crawled on cue. Amazing. And it seemed so easy! Sure, she fell on her face a few times, but once she got it, she was off.
Penny zoomed around like a little windup toy. She learned that the toilet was fun to splash in and that lamps will fall if you grab the cord. She learned that golden retrievers are not ponies, peas taste funny, dead flies on the floor are a no-no, but candy is really good. She laughed all the time. She learned her sister, Melody, couldn’t do what she could do, but she didn’t seem to care. So I tried not to care either.
Dad and his camcorder followed Penny around like the paparazzi follow a rock star! We have hundreds of hours of footage of Penny being cute and doing adorable things. And, well, I admit it, sometimes I got kinda sick of watching a new video every time she learned something new. It sorta sucks to watch a baby do what you wish you could do.
Penny holding her own bottle.
Penny feeding herself teeny-tiny Cheerios from her high-chair tray.
Penny saying “ma-ma” and “da-da” just like the babies on Sesame Street.
Penny crawling on the floor and chasing Butterscotch.
Penny clapping her hands.
How did her little brain know how to tell her to pull herself up to a standing position? To hold on to the sofa for balance? How did she know how to stand on her own? Sometimes she’d fall over, but then she’d pop right back up. Never ever did she lie there, stuck like a turtle on its shell.
Dad still did our nighttime reading, but now it was Penny who snuggled on his lap. I was too big and too hard to balance, so I sat in my wheelchair, my dog at my feet, as the two of them read the stories I knew by heart. Butterscotch still slept only in my room. I liked that.
It really did make me glad to know Penny was learning the same books I loved so much. I wondered if she was memorizing them. Probably not. She didn’t need to.
I think Penny’s third word was “Dee-Dee.” She couldn’t quite say “Melody,” but she got the last part! I loved it when Mom put Penny in bed with me after her morning bath. She’d grab me and plant wet, baby-powder-smelling kisses all over my face. “Dee-Dee!” she’d say again and again.
By the time she was one year old, Penny could walk. She wobbled all over the house on her fat little legs. She fell a lot, dropping down on her butt, and laughing every time she did. Then she’d get back up and try it again.
That was something I’d never get to try.
With two kids in the house, our family routines changed. It took twice as long to get everybody ready each morning. Mom made sure Penny was dressed in pretty little outfits every day, even though she was just going next door to Mrs. V’s house.
My clothes were okay, but I was noticing that lately they were more useful than cute. Mom seemed to be choosing them by how easy they’d be to get on me. It was kind of a bummer, but I knew I was getting heavier and heavier to lift, and so changing me was harder.
I probably should mention that feeding me is a real process. I can’t chew very well, so I mostly get soft foods like scrambled eggs or oatmeal or applesauce. Since I can’t hold a fork or spoon—I try, but I keep dropping them—someone has to place the food into my mouth, one spoonful at a time. It’s slow.
Spoon, slurp, swallow.
Spoon, slurp, swallow.
Lots of food falls on the floor. Buttersc
otch likes that. She’s like a canine vacuum cleaner.
Drinking stuff is hard for me too. I can’t hold a glass and I can’t sip from a straw, so somebody has to very carefully hold a cup to my lips and tip a little bit of liquid into my mouth so I can swallow. Too much and I choke and cough, and we have to start all over. It takes a long time to get a meal in me. I hate the whole process, obviously.
And some mornings were really stressful.
“Chuck! Can you bring me Melody’s pink T-shirt from the clean clothes basket? She spilled juice all over her shirt!” Mom yelled up the stairs.
“Didn’t you put a bib on her, Diane?” Dad yelled back. “You know she makes a mess! Why don’t you wait and dress her after she eats?”
“So you want me to feed her naked? Just bring the shirt!” Mom snapped. “And a diaper for Penny. She’s got a stinker.”
“She’s two—isn’t she old enough to be potty trained?” Dad asked, coming downstairs with a blue T-shirt I had outgrown in one hand and a diaper in the other.
“Right. I’ll get to potty training tonight—on the twenty-fifth hour of my day!”
Dad picked Penny up. “Uh-oh, that’s a bad one,” he said, his nose scrunched up. “Did you give her sweet potatoes again last night? I thought we stopped giving her those because they always give her the runs.”
“Well, if you had gone to the grocery store like I asked, I could have given her something different! And that shirt is blue, not pink, and too small for Melody!”
Mom stormed out of the kitchen and up the stairs.
“Sorry, girls,” Dad said to us. He whistled softly while he cleaned Penny up, threatening to call the Haz-mat team. That was funny.
Then he finished feeding me breakfast, not caring that my oatmeal was getting all over the juice-stained shirt. “Why not? May as well make a real mess and make it worth all the stress!” he said with a laugh.
Out of My Mind Page 5