Dwarf: A Memoir

by Tiffanie Didonato

  I had lots of friends— real ones— but my closest friend was Katie Duso. She had brown hair like me, a lisp, and wide-set, oblong brown eyes. Katie was more of a tomboy than a girly girl, and we got along well. She helped me reach the art supplies at school and walked beside me like a bodyguard in the hallway so I wouldn’t get trampled.

  My half brother, Nicolas (from my dad’s first marriage), didn’t need a bodyguard. He could reach everything he wanted, including Dad’s system. He didn’t need to slide down the stairs when he visited on weekends. He could run down them and back up again in a flash. Nicolas had a full head of curly brown hair, small freckles across the bridge of his nose, and a gap between his two front teeth. He was an athletic kid, two years older than me, and I watched him accomplish everyday tasks with ease. It never dawned on me that things were difficult for me and easy for Nick because I was handicapped and he was not.

  Nick never treated me like I was different, either. Together we’d park ourselves in front of the TV and watch WWF and then reenact the tag team matches with our pillows. The typical younger sister, I wanted to do everything he did, and I begged him to help me make forts out of sheets and the dining room chairs. I chalked up our differences to his age and the fact that he was a boy. One day, I figured, I would be that age, too, and prove girls could do everything just like the boys.

  On many a weekday afternoon, I had doctors’ appointments at Children’s Hospital Boston. And doctors’ appointments often meant preparation for more surgeries. They were as normal as brushing my teeth. I had no idea that other girls my age didn’t visit the doctor as regularly as I did. Nor did I realize that my doctors’ appointments were nothing like my friends’ appointments when they got a cold or strep throat.

  In school, there was one other girl who talked about having surgery. She, like the rest of the kids in my class, sat in a glossy, colored chair. Mine was just thick, plain wood, and it was modified, as was my desk, to sit very close to the ground. I peered up at her, feeling like I was practically sitting on the classroom floor. I was so envious of her desk and that shiny red chair.

  Turned out, she had something else I wanted, too— her tonsils removed. It was nothing, she explained to me, and the best part was that afterward, she could have all the ice cream and Popsicles that her stomach could handle. She started the Tonsil Club shortly after, but I couldn’t belong because I hadn’t had mine removed. I longed to have that operation. It was not unlike when the newest Barbie came out. If other girls had it, I wanted it, too. But my tonsils stayed in my throat, and instead of ice cream, I had crushed ice with ginger ale after every operation, working my way up to Campbell’s chicken noodle soup. Even though I was left out of the Tonsil Club, I was very much included with the “normal” kids in elementary school.

  “Why are you small?” I’d get asked once in a while.

  “I don’t know. Why are you tall?” I’d reply with a shrug of my shoulders. And that was that. I was smaller and they were taller. It was what it was. I remember other kids getting teased in school for various reasons, though I actually never suffered the same fate. But my classmates did notice something unusual about me: I didn’t look like the rest of my family.

  “Are you adopted?” a girl named Mandy asked me innocently one day in school.

  “I don’t know,” I began. “What does that mean?”

  “It means that your mom and dad aren’t your real mom and dad,” she explained. “I think you’re adopted. You have a different mommy and daddy somewhere, because you don’t look like the ones you live with. They’re so much taller than you,” Mandy continued.

  My stomach felt like it was twisting into knots. Not my real mom and dad? Will I have to move in with new parents somewhere else? Images of being lost and alone, like Bambi in the woods, bombarded my imagination. I couldn’t shake my panicked feeling all morning, so over lunch I asked Katie if she also thought I was adopted.

  “I don’t know,” she replied simply.

  “Do I look like my mom and dad?” I pressed on. “What about Nick— do I look like him?”

  Katie shrugged. “Maybe Nick knows if you’re adopted. You should ask him.”

  Her answer gave me enough solace to get through the rest of my day. If I were truly adopted, I figured, surely he would have told me. Every weekend when Dad would pick Nick up, we’d play and laugh, and not a single word was whispered about adoption.

  “If you were adopted, there would be papers. A certificate,” Nick said after I told him what had happened at school. He barely looked away from his Nintendo game flashing on the TV. “We can look around. If we find a certificate, then you’re adopted,” he added, pausing the game.

  While Mom prepared dinner and Dad let Bruiser out, Nick and I made our way to the spare bedroom down the hall that Mom used for her sewing. She always kept the door shut, and the handle was too high above my head to reach, which created an air of mystery about what was on the other side. But Nick was able to open it for us. Looking past the piles of fabric and sewing supplies, we focused on a tall shelving unit loaded with odds and ends that didn’t seem to belong anywhere else in the house. I worried that maybe I didn’t belong, either.

  “I’ll start here,” Nick said, pulling a gold and brown tin box down from a high shelf. He popped open the lid but found nothing but spools of thread, buttons, and scissors.

  I removed each book off the bottom two shelves and sat on the floor.

  “Be sure to look at every page,” he ordered. “A certificate could be stuck between the pages.” He peered inside straw baskets and took a few more off the shelf and set them aside. Then he grabbed a folder balanced on top of some clothing patterns, sending the whole pile toppling to the floor. Everything scattered across the rug, including a single piece of paper with a fancy green design adorning the border. Nick reached for it and my heart pounded in my chest. It was covered in bold, typed letters; a round, gold seal; and official-looking stamps.

  “What is it?” I asked anxiously. “What do you have?”

  He held it close and just looked at me. “A certificate.”

  “Read it to me,” I demanded. “Please!”

  “No,” he said. “I don’t want to.”

  My eyes brimmed with tears as I grabbed wildly at the paper, but Nick put his hand on my forehead and held the sheet behind him, keeping it far out of my grasp. After fighting him for a moment, I knew what I had to do. I left the spare bedroom and walked down the hallway toward the kitchen. It felt like time had stopped as I approached my mother.

  “Mommy?” I said in the smallest voice, standing by the refrigerator.

  “Yes, honey?” she replied while stirring a pot on the stove.

  “Are you happy about me?”

  She dropped her wooden spoon, which landed with a clank on the side of the metal pot. Then she spun around to face me and dropped to her knees.

  “Oh my God,” she said, picking me up and holding me in her arms. “You are the best thing to ever happen to me. Of course I’m happy about you!” she said, squeezing me tighter. I felt her chest heave and heard her sniffle. “Of course I’m happy about you,” she repeated. Then she let me go and looked into my eyes. I watched as tears ran down her cheeks. It made me want to cry, too. “I love you more than all the stars in the sky. What would ever make you ask such a question?”

  I didn’t know what to say.

  “Why would you ask me this?” she asked again.

  Still, I remained silent. I shrugged and squeezed my small arms as tight as they could get around her. I wasn’t expecting her reaction and all I wanted to do was hug her, feeling comforted by the warmth of her body and the sweet smell of her perfume. I stopped worrying about being adopted and took a deep breath, feeling like maybe it was all just a big mistake.

  “You may be little, you may be short, but I love you, because you’re mine,” she said, continuing to hold me. “You’re mine. Always remember that.” And I believed her.

  That night, I slept
soundly under the tent Nick and I made together, and things went back to normal over the weekend.

  On Monday, I didn’t have the chance to tell Mandy I wasn’t adopted after all because Mom kept me home from school. I missed a lot of school due to my doctors’ appointments and surgeries. But on the days that I didn’t get to see my friends, Ruby would appear.

  “Play Cyndi,” she said, motioning to the play button on the Pioneer system. I hummed “Girls Just Wanna Have Fun” in anticipation as the tiny wheels in the tape began to turn. I was wearing my mom’s jewelry again, feeling confident that I looked a lot like her. The domed heart ring turned circles around my tiny finger and her long, beaded necklaces swayed from side to side as I shimmied atop the lobster pot.

  Before Cyndi could begin singing, Mom was standing over me, holding the very certificate Nick had found. She turned the music off with a flick of her long, salmon pink fingernail and tossed her feathered, blond Farrah Fawcett–style hair.

  “Why was this in your room?” Mom asked. She looked very confused. “This belongs to my sewing machine, Tiffie. If I lose it and something happens to my machine I can’t get it replaced.”

  I felt a rush of relief and a twinge of embarrassment.

  “I don’t want you going through my sewing room,” she continued. “There are pins and needles and scissors in there. You could get hurt. Promise me you will stay out of that room.”

  “I promise!” I shouted happily. “I love you.”

  “I love you, too! Now, it’s really time to go,” she said, motioning for me to hand over her jewelry. “We’re going to be late for your doctor’s appointment, sweetheart.” I wiggled out of the necklaces, my hair falling into my eyes as I pulled them over my head.

  On our way to the hospital that afternoon, Mom and I bopped along to my Cyndi cassette. The volume was turned up obnoxiously high and I made sure to sing along extra loud. Our time together in the car made the exhausting trip to Boston fun. It was a mini party in her car.

  Compared to our very small bedroom town of Douglas, Boston seemed like the land of endless possibilities. It was intriguing. Even if all I knew of the city existed between the walls of the hospital’s orthopedic ward, to me it was like the Land of Oz. It took forever to get there, but the huge silver skyscrapers and the cars, trucks, and ambulances that whizzed past us always enchanted me. Clusters of people maneuvered up and down the skinny streets, drivers blew their horns constantly, and my mom cursed at the ones that cut in front of our car.

  In my imagination, the people who sat up above our car in glass boxes— Mom called them tollbooth operators— protected the city.

  “Jesus Christ,” she hissed as she handed over money through her window.

  The tollbooth operator was expressionless and stood perfectly still with his hand outstretched.

  “Soon we won’t have a pot to piss in if you keep raising the prices.”

  After the hassle of the tollbooths, parking was the biggest challenge. We’d circle around and around trying to find a spot. Eventually it became a game. Who could spot an open space first? The way I had it figured out, if the operator at the gate was nice, the parking gods would be, too. If he was grumpy, we’d spend at least forty-five minutes hunting for a space. On this trip to the hospital, because I was already happy from dancing to Cyndi, I made sure to wave and smile at the tollbooth operator. And, poof! We got our best parking spot to date, right in front.

  Mom and I made our way through the wide corridors of the massive hospital, much of which was worn, faded, discolored, and drab. I never liked the furniture inside Boston’s Children’s Hospital. Furniture always made a big impression on me since chairs and tables were usually right at eye level. The hospital wood seemed too pale, as if it were sick. But I wasn’t sick. I was there to look at my bones on X-rays, to make sure they were straight and strong. I was also there to pick out a stuffed animal from the gift shop. Other kids didn’t have animals to accompany them down the halls or in their beds. Instead, they had tubes and wires with them, and mounds of blankets covering up their bodies. Some kids couldn’t sit up. They’d lie there, tired, sad, and scared, while their moms or dads hovered over them, wiping away their tears. I wasn’t allowed to cower like they did.

  “Everyone has problems; everyone has pain,” Mom would say to me during any moments of weakness. “Some you see and some you don’t see. But it’s there and crying doesn’t make it go away.”

  That made me wonder what my mom suffered from. What was her pain? I wanted to handle my pain the same way she did— with ease, as though it almost didn’t exist at all.

  As we walked down the long corridor toward Dr. Shapiro’s office, the lights above our heads cast a yellowish glow. Strange artwork dotted the walls throughout the hallways and waiting rooms. One painting in my doctor’s office always scared me. It was mostly an abstract, blotchy mess, but in the middle, there was a boy swimming in the ocean. He was raising his arm up out of the waves, but it was a frighteningly odd shape— like it had been badly broken in the surf. No one else seemed to be scared by it. But seeing it meant I was closer to yet another surgery, so it made my heart thump harder. Surgery meant that anesthesia, tubes, wires, big beeping machines, needles, and rubbing alcohol were on their way. I’d squeeze my animal tighter when I saw that painting, burying my face in its soft little head.

  From keeping my legs straight to correcting my clubbed feet to closing a small cleft in the soft palate of my mouth, I’d had literally dozens of surgeries since I was ten months old, and I’d battled arthritis for as long as I could remember. That’s the nature of the beast that is diastrophic dysplasia. But from what I gathered from the adult conversations, this next surgery would be a more complicated series of procedures aimed to make me more independent. And it would be nothing like what I’d been through before.

  The surgery coming up was more than the typical osteotomy to correct the irregular joints of my legs— a procedure I was used to and didn’t even really mind. I actually enjoyed the hard casts woven around my legs when I woke up. I could draw on them as much as I wanted. Mom made sure I never ran out of markers, stencils, and stickers for decorating the white plaster.

  Months earlier, my mother had watched a series on the news about a radical new procedure called bone lengthening. It was used to correct uneven limbs, and one doctor was performing the surgery as a way to lengthen the limbs of children with dwarfism.

  The procedure promised the potential for great results, but it was— it is— a grueling, painful process. In order to lengthen a bone, surgeons first cut the bone in half. Then they drill a thick stainless steel pin into each side of the broken bone and attach an external fixator. A week after surgery, the patient begins turning the pins four times a day (one-quarter millimeter each time) to achieve one millimeter in length between the broken bones daily. The hope is that, as the bone is stretched apart, the body will fill in the gap with new bone, thus adding length. When the patient wakes up from the surgery, the pins protrude from the limb, which is encased in a metal halo to keep it stable. The sight of a patient undergoing bone lengthening is a hard one to bear, even for a mother as tough as mine.

  Curious and inspired by the procedure and passionate about helping me live as normal a life as possible, Mom called Dr. Fred E. Shapiro. He was a little man who wore rimless oval glasses, a navy blue blazer, and a tie. It was a big deal to my mom that he taught at Harvard Medical School, and an even bigger deal that she trusted him. He was sweet, soft-spoken, and brilliant. Occasionally, he even made a joke. He had been my orthopedic surgeon since I was a baby, and I grew to love him as an important adult in my life.

  But in this conversation between my mom and Dr. Shapiro, there was almost nothing I could relate to— nor could I understand much of what they said. No one smiled. Everything was serious as they studied X-rays of my legs. Dr. Shapiro moved his pen vertically and then horizontally against the images of my bones. He was explaining something I couldn’t comprehend and he used wo
rds that I had never heard before, like “pin care” and “consolidation” and “angulation.” But I could make out that this surgery would take longer, be more painful, and generally be a bigger deal.

  While Mom was digesting the information, I began to get bored.

  “My birthday is coming up,” I interjected as they spoke, searching Dr. Shapiro’s face for that comforting smile. “We’re going to have pizza!”

  Dr. Shapiro glanced in my direction, nodded, and lifted a finger to indicate that he’d speak to me in just a minute.

  “There’s a window of opportunity,” he told my mother. “You can have it done twice, if you decide to do so, between the ages of eight and twenty.”

  “So if she wanted to do it a second time she’d be in her teens.” Mom paused, then looked at me with a small smile. “She could decide for herself then if it’s worth it.”

  Dr. Shapiro nodded.

  I loved it when I heard my mom say things like, “She can decide for herself.” I loved having any chance to make my mom proud.

  “We would strive for two inches in her tibias first, then two inches in her femurs for a total of four inches. It’s the recommended amount,” Dr. Shapiro concluded.

  One night not long after my appointment, I heard Mom explaining the surgery to my dad as I played with my Barbies.

  “No, no, no,” I heard Dad say. “More surgery? It’s never ending.”

  Mom kept speaking over him, using some of the big words I’d heard in Dr. Shapiro’s office.

  Then Dad left and went downstairs to see Bruiser. I heard the cellar door shut, then Mom appeared quietly in my doorway. I brushed the knotted hair of my doll and dressed her in a sequined outfit.

  “Tiffie,” she began, “would you like to do more things on your own without the help of Mommy or Daddy?”

  “I already do things on my own.”

  “You do things with books and tools,” she said, sitting down next to me. “Would you like to do things without those?”

  I nodded my head, thinking about all the books I had to slide across the floor to reach the Pioneer system. It was pretty tiring.