I wanted to go trick- or-treating. I had taken my Morticia costume out of its box hours ago so I wouldn’t gag from the smell of the flame retardant. I knew that it was getting late for a four-year-old to go trick-or-treating, because when I looked out of the window, I saw older kids in hobo costumes roaming the street, carrying pillow cases instead of plastic pumpkins. My mother told me that I had to wait for my father to go trick-or-treating. He was expected home from DC any minute. “You’ll just have to be patient. I have no one to watch your sister. Maria can’t go out on Halloween. It’s too much for her.”
My mother kept shooing me away from the front door when the bell rang. I think she didn’t want me to see the trick-or-treaters, so I wouldn’t feel bad that I wasn’t out collecting candy too.
My mother told me to bring Maria downstairs to play. “She needs to be distracted, the doorbell scares her.”
So I brought my sister downstairs to our rec room. I put the forty-five of “The Monster Mash” by Bobby Pickett on the record player. I turned the volume up loud so Maria wouldn’t hear the doorbell. I took my sister’s hands and swung her around to the music.
“He did the mash, he did the monster mash. The monster mash, it was a graveyard smash…” Maria laughed.
I pretended to be Frankenstein dancing, Maria laughed some more. I was sorta having fun, but I could see through the basement windows that it was now pitch black outside.
Maria has never had a Halloween costume. She has never gone trick-or-treating, because trick-or-treating is for make-believe-monsters, not real ones. You see my sister is profoundly disabled. She has a genetic disorder called Seckel Syndrome. It is incredibly rare, so rare that you will probably never meet a person with it, which is a problem, because when people do meet Maria, they get nervous, and sometimes they get scared.
You see, my sister is a bird. A bird that can’t fly, a bird that can’t sing, but yet, still a bird. She is small, about 4 foot 11 inches tall and very thin, about 50 pounds. Her nose is flat and beak like. Her eyes are large and hazel. Her hair is light brown with a soft wave.
Maria cannot sing like a bird, but she does make sounds. Noises of various pitches come from her bellowing her throat. The sounds are loud and startling. Her arms are wings that flutter about. Her hands are in perpetual motion, they usually land up by her mouth where she pauses them to pill-roll her fingers. There is nothing between her fingers, but she continues to roll, and roll her thumbs over each finger, again and again, while moving her arms up and down. She paces too, round and round in circles. Maria can be exhausting to watch.
I put my costume back into its cardboard box. I could see Morticia’s face staring at me through the plastic peep hole. I looked at her and said, “Next year.”
Hours later my father finally arrived. He didn’t say anything to me, just handed me a coloring book of Washington DC, along with a charm bracelet of the monuments before he headed into the bathroom to change out of his suit. Gifts had always been my father’s replacement for “time spent.” When he came out of the bathroom, I thanked him for the book and the bracelet. Then I went to bed by myself. No one tucked me in. I guess my dad was too tired from his trip, and my mom was too exhausted from giving out candy. I was so sad and disappointed about not going trick-or-treating that I clinched the charm bracelet, rolling my fingers over and over each charm again and again, crying, until I fell asleep.
My mother tells this story as an example of what a terror my sister Linda was when she was a little kid. After Maria was born, when Linda was four, and my brother Phillip was two, Phillip fell down the basement stairs. He got pretty banged up. While having Phillip checked out by his pediatrician, my mother asked the doctor to talk to Linda about hitting her brother.
My mother said to the doctor, “She was beating him with the baby’s bottle near the stairs, and then she pushed him,” indicating that it was Linda who was responsible for Phillip falling down the stairs.
The doctor turned to Linda and said, “So tell me about your brother’s fall?”
Linda replied, “I don’t know,” pointing to my mother. “She’s the one who pushed him.”
My mother laughed, “See, this is what I’m talking about. She has the devil in her, I’ll tell you… the devil.”
I always assumed that my sister did push my brother down the stairs. I don’t know how old I was when it dawned on me that maybe Linda was telling the truth and my mother was lying. Maybe my mother was trying to cover up her abusive behavior? When I asked Linda about this incident, she said that she thought that the pediatrician did believe her. Linda thinks the doctor may have called our father and told him that he thought my mother “might be going too far with her disciplining of Linda and Phillip. The stress of Maria’s condition can do that.” My father may or may not have alerted my extended family to my mother’s problems, but Linda said that my grandmother started to be around more.
My father’s family lived next door. My paternal grandmother Marietta (pronounced MadE-et) lived with my father’s brother Joe and his wife Mary, and their four children on the top floor of a two-family house. Downstairs my father’s brother Louie lived with his wife Angie, and their six children. Our brick ranch home was built on the lot that once was my grandmother’s garden. According to my sister Linda after Phillip’s fall Marietta started to come to our house more frequently to care for Maria. Linda and Phillip began to spend more time with their cousins next door. My mother was finally getting a break from childcare. According to Linda, my mother hit her and Phillip a lot less after the family started to help her out.
Thanks to my grandmother Marietta, my mother finally had some free time. She used the time to take driving lessons. My mother was 29-years-old, and she had never been behind the wheel of a car. Both of my parents, my father Anthony, and my mother Grace, are from New Haven CT, a city that had an extensive trolley system while they were growing up. They didn’t need to know how to drive in order to get around. Anyway, cars were for rich people back then.
Before Maria was born, my mother worked as a nurse at the Veteran’s Hospital in West Haven, a suburb of New Haven. She took the bus to the hospital. My parents lived in a small house in West Haven. A babysitter took care of Linda and Phillip. But a babysitter wasn’t going to take care of Maria. My mother had to quit her job. My grandmother offered my father some of her land that she had been using as a garden. They took it and built their house next door to my father’s family in order to have more space for their growing family.
West Haven did not have the public transportation that they were used to in New Haven. My mother would often tell me how she walked two miles to and from the grocery store with two toddlers and an infant in a pram. Prams were big back then; you could fit three little kids inside one and some groceries underneath. But it was not an ideal form of transportation, especially when it rained. Even though my father was not fond of the idea of his wife “having too much independence,” he agreed that it was necessary for her to learn to drive. Maria would need to be brought to doctors frequently, and he could afford a second car now that he had settled into a secure job at Metropolitan Life Insurance.
God’s Will Be Done
My mother didn’t know Maria was developmentally disabled when she was born. She was underweight, but all of my mother’s children were on the small side. It was little things about Maria that concerned her. She didn’t roll over like other babies. Her movements were awkward. Something was just not right about her. Maria only weighed 17 pounds on her first birthday. We lived close to Yale University and their pediatric department diagnosed Maria’s physical retardation in 1958. The term “retardation” had been a replacement for feeblemindedness or idiocy, but the word “retard” became a pejorative too and has now been replaced by the term “intellectually disabled.” It wasn’t until 1960 that her specific condition was identified as Seckel Syndrome, an extremely rare genetic disorder associated with delayed development, dwarfism and bird-like facial features.
We now know that Seckel Syndrome is caused by an autosomal recessive mutation, meaning both my parents have the same abnormal genes. One might think my parents were cousins for both of them to have such an unusual genetic abnormality. They might be. Pretty much everyone I was ever introduced to as a kid was my cousin. First, second, third… or just from the same village, or region in Italy, but somehow all cousins! On my mother’s side of the family there is also another rare genetic abnormality Friedreich Ataxia, a condition that causes impaired muscle coordination and abnormal curvation of the spine in two of her aunts. My sister Linda remembers their twisted bodies lying in a bed at my great Aunt Jenny’s house. They were frightening to behold but their faces conveyed much love to her.
Even though the field of genetics was new at the time of Maria’s birth, I think my mother had a sense that it might be better for her children not to marry Italians. But she didn’t explain this to me using science. She phrased it like this, “Never marry an Italian, they’ll treat you like shit and cheat on you. If you marry a Jew at least you’ll have a fur coat. WASP’s are the best.”
It is interesting that my mother recommended marrying a WASP, when white Anglo-saxon Protestants were who my family most criticized, because “they controlled Connecticut.” My family felt judged by WASP’s, yet they admired them. My mother always told me that life was going to be easier for me because I look like like a WASP. “You have blue eyes, your hair is light, you are tall – you don’t look like an Italian.”
My mother, brother, and sister Linda are all dark eyed with dark hair. My father had hazel brown eyes and his skin was lighter than my mother’s. Maria and I are the ones who take after his mother, Marietta. We are both light eyed, Maria’s hair was actually blonde when she was a baby. She has the same coloring as me, but life isn’t easier for her and I don’t think not looking like an Italian has helped me either. People just get confused when I explain my background because it doesn’t match up with my face.
An understanding of the double helix molecular structure of DNA had only been learned four years before Maria was born. The understanding of the factors involved in the inherent transmission of an autosomal recessive traits was far off in the future. My mother and the doctors around her didn’t truly understand why Maria’s development was abnormal. Even though the doctors suspected that because of the rarity of Maria’s condition, my mother would not have another child with Seckel Syndrome, she was still frightened by the possibility. The thought of raising four children, two of which would have special needs was enough to drive my mother to birth control, or at least the thought of using birth control. It was complicated.
My mother is a devout Roman Catholic. In 1957, the FDA approved “the pill” for severe menstrual disorders. In 1960 when the FDA approved “the pill” for contraception, the state of Connecticut did not allow doctors to prescribe it for contraception. It wasn’t until 1965 that the Supreme Court ruled in the case of Griswold v. Connecticut that states did not have the right to ban contraceptives from married couples. But even then, a woman had to get permission from her husband to be on “the pill” and my mother had to get permission from her priest. I could imagine her conversation in the confessional with Father Cortella:
“Forgive me father for I have sinned. I am considering going on birth control pills which I know are not allowed by the church, but I live in fear of having another disabled child, and I was hoping for an exception.”
“My child, God would never give you more than you can handle. If God wills that you are to have another disabled child then it is the path he has chosen for you.”
“What about free will?”
“Free will is the freedom to choose between what is right, and what is wrong. Birth control is wrong.”
“Why would it be wrong to use contraception? Didn’t God allow us to invent it? Maybe he wants us to take more responsibility for our lives?”
“My child, it is foolish for you to speculate as to God’s design. You need to trust more in God. Pray to him, let him know your fears, let him know your love for him – and stop questioning the laws of the church. If you go on birth control you will no longer be able to receive absolution for your sins, which means you will no longer be able to participate in the sacrament of Holy Communion. Do you want this for your soul?”
“No, Father. I am sorry for my sins.”
“For your penance, say six Hail Marys and Our Fathers. Clear your mind of unholy thoughts. This is God’s Will, your sins are forgiven, go in peace.”
“Thanks be to God.”
And so I was born.
And so I was Born
All of my mother’s births were two year apart except for Maria and I. I was born seven years after her. I asked my mother why this was so:
“If you weren’t on birth control, how was it that I was born so much later than Maria?”
“Oh, I did go on “the pill” after Maria was born, but not for birth control, for heavy menstrual bleeding.”
“But I thought the priest said you couldn’t use birth control?”
“I couldn’t go on the pill for birth control, but I could go on the pill for medical reasons!”
“So, how did you get pregnant with me?”
“I went off the pill, because I was going to have a hysterectomy, my fibroid tumors were bad. I was 35. I just didn’t think I would get pregnant!”
But she did get pregnant, and it scared the hell out of both of my parents. Would the child be normal, or would it be like Maria? Her condition was so rare, could it happen again? Would God punish them for their medical use of the pill? These are probably just a few of the thoughts that haunted my parents throughout my gestation.
According to my sister Linda, our parent’s fears morphed into petty bickering between the two of them and rage toward their children. My mother’s abusive behavior returned. She began to hit Linda and Phillip with a wooden spoon more and more often, swatting at them, and cursing that they were ever born.
It was a stressful nine months for the entire family. My father tried to ease my mother’s anxiety. Three days before my due date, my parents had plans to go out for a lobster dinner. My mother craved seafood throughout her pregnancy with me. She was leaving the hairdresser when her water broke. A few hours later, after much cursing from my mother to the obstetrician not to mess up her hair, I was born: 6 pounds 12 ounces, length 20 inches. The largest baby my mother had ever given birth to. I did not have delayed growth. My head size was normal. My nose was a button, not a beak. I was not a bird like Maria. My parents breathed a sigh of relief. Normality was never so celebrated than at my birth.
Linda said that after I was born, the beatings pretty much stopped. Maybe my mother promised God to control her anger now that she had a healthy child, or maybe she just wasn’t stressed anymore. Newborns have a way of distracting families from their troubles. Everyone was thrilled to play with the new doll. Eleven-year-old Linda would dress me up and wheel me around in a stroller, singing songs to make me coo and giggle. Everyone was truly overjoyed by my birth, except Maria.
Maria would shove my bassinet while I lay sleeping in it. She would pull teething toys from my mouth. I had stolen her attention from the family. Maria’s anger moved her not just emotionally, but physically. She had been a semi-immobile seven-year-old, but the neglect to her needs caused by my presence propelled her to take wing. Maria began to walk. She made up for seven years of flightlessness by fluttering non-stop around our house, pill-rolling her hands, and squawking like a parrot. She wore a path into the carpet visible enough that my mother had put down plastic runners. My birth had not only gotten Maria to walk, it got her to talk. Maria started to shape some words as best she could. “Nay-nay” for “no” and “ahum” for “yes.” “om” for mom, “inda” for Linda and “Iam” for Diane. Her communications skills increased along with her anger toward me.
As soon as I grew hair Maria pulled it. She didn’t just pull my hair—she latched her figures around my springlets so tightly that it would take my mother an eternity to release her grip. Maria really didn’t start to like me until I was around three or four years old. As soon as I could sing songs to her and swing her around to the music blasting from the basement, I became Maria’s friend, and she became my co-conspirator.
It was the beginning of the 1970s and our “rec room” was losing its innocence along with the country. Children’s birthday parties of punch and cake had given way to teenage drinking sessions of stolen alcohol from my parent’s liquor cabinet. The decor of the “rec room” was in transition too. The idyllic watercolors of nymphs and fairies that my mother had first decorated her party room with in the early 1960’s were replaced with Grateful Dead and Led Zeppelin posters. The crucifix that was on the wall for years, had been taken down and a cross made out of folded Camel cigarette packages was put up in its place. The dark brown floor that was spotted with splashes of red, yellow and blue dots used to hide confetti and gift ribbons when they dropped to the floor – now hid fragments of pills, as they were broken and shared with friends. This place that once held our family’s celebrations had morphed into a den of concealment. All my siblings did now was close the door, turn up the music, and all the things that our parents didn’t approve of were safely hidden inside.
The rec room was still a fairly innocent place for me in the early 1970s. I was so young that when I played 45 records in the basement I had to put X’s on the side I liked, because I couldn’t read. The X’s ended up getting me in trouble with Linda, because they let her know that I was playing her records. All of her yelling and ratting me out to my mother didn’t stop me from listening to them with Maria. I needed to play records. What else could I do with Maria? Talk… just one conversation, but that wasn’t going to happen. So instead, Maria and I would sit on the basement floor and spin around in circles to the song, “I’m so dizzy, my head is spinning, like a whirlpool that never ends…” When the music would stop Maria would laugh, and so would I. This is how we communicated.
My older siblings are a lot older than me: Linda is 11 years and Phillip is 9 years older. Maria is 7 years older than me, but she doesn’t look it. She’s tiny. Dwarfism is part of her condition. Maria will always be a petite 12-year-old girl. At this time when I was 4, she was the same size as me.
Linda and Phillip were never happy about having to take care of Maria and me. They were teenagers and I was “a brat.” Maria had too many needs. I got it. But they were mean. They would punish me in terrifying ways like putting me in a garbage can and closing the lid on me when I wouldn’t listen to them. Linda even used to discreetly turn the burner up on the stove and sprinkle it with sugar so flames would magically appear. She would warn me that she could conjure fire and engulf me with flames whenever she wanted to, because she was a witch! I believed and feared her.
I don’t think my sister and brother actually knew how frightening they and their friends were to me. Fortunately, none of their contempt for their younger siblings was taken out on Maria. It was only their friends who occasionally mocked her when Phillip and Linda weren’t looking. But I was watching. I was always watching people’s interactions with Maria.
Instead of letting Linda and Phillip know how much they scared me, I plotted revenge. When they were out partying with their friends, Maria and I snuck into their bedrooms and temporarily removed some of their favorite possessions. I remember swiping Linda’s Raggedy Ann doll once. We brought it down to the basement. I put on the song “Go Ask Alice” and started to choke the doll. I handed Raggedy Ann to Maria and she choked her too and laughed. I didn’t laugh. I began to cry. Tears poured out my eyes as I choked the doll harder as the song climaxed: “Remember what the dormouse said: FEED YOUR HEAD. FEED YOUR HEAD” I threw Raggedy Ann to the floor and screamed. Flashes of interactions with Linda’s and Phillip’s stoned friends consumed me. I started yelling out loud.
“LEAVE US ALONE” “Your black eyes scare me.”
“WE ARE NOT FUNNY. Maria is not talking to you.”
“STOP LAUGHING.” She is not a joke. Just, stop, laughing.”
Maria watched my meltdown. She stared at me and pill- rolled her fingers. What did she think? I had absolutely no idea, but it didn’t matter. She was there, and by being my witness, she helped me deal with my anger.
Diane Balch is from West Haven, Connecticut where she grew up with a brother and two sisters, one of which is intellectually disabled, along with a large extended Italian-American family. Previous to her time as a writer Diane worked as a high school English teacher who taught writing workshops. Diane has an undergraduate degree from New York University and her master’s degree in English from SUNY New Paltz.