Debra Fox’s poems have been accepted for publication in various haiku journals. In addition, her short stories and essays have been accepted for publication in in Hyperlexia Journal, Squalorly, Embodied Effigies, Chamber 4 Literary Magazine, Burrows Press, and The Meadow. She is a lawyer, and the director of an adoption agency. In her spare time she loves to dance. She lives just outside Philadelphia with her family. She can be reached at .
He doesn’t care if he doesn’t get invited.
He’d rather walk to Rosa’s garden and touch the lamb’s ear, the rebbekiah in early bloom, and the pachysandra. He’d rather track the bumblebees and sign to me he knows they sting, a determined look to his dark eyes.
In the intensive care nursery days after his birth, we’re told a consult is needed with a speech therapist, and I am slightly alarmed. Newborns don’t talk, I tell myself — calm down. In the dimmed nursery lies our baby, a nasal-gastro tube down his nose and throat eventually reaching his stomach where it deposits formula. We are told he is losing too much weight. He becomes fatigued too quickly when feeding. He has low muscle tone throughout his body, including his mouth, which needs to suck to draw sustenance, but can’t. The speech therapist is called in to evaluate the problem.
Meanwhile our seven year old, Alex, is in second grade. He decides to write and illustrate a book about his brother’s birth, for a school project. He proudly shows it to me, its pages all laminated. I feel his sweet breath on my cheek, as he leans in and reads to me: there I am in labor, a woman with a big stomach lying on her side as a doctor puts a needle in her back. There is Daddy cutting the umbilical cord after Matthew is born. There is Mommy holding the baby.
“Honey, why aren’t I smiling in this picture?”
“Because you have your social worker face on.”
“What does that mean?”
“When you get worried, Mommy, that’s how you look.”
He doesn’t care if he doesn’t get invited.
He tolerates all the doctors’ appointments, the electrodes, the needles, and the cardiograms. He looks forward to the drive on the expressway, along the river, past the railroad tracks, and into the darkened parking garage where sounds echo and gasoline reeks. He wants to push the elevator button, watch it light up, and feel the sensation through his body of being lifted through space. He walks the long hallways, pressing his face close to the walls, watching them whirr by, the colors all blurred. Even at the age of thirteen, he still runs his fingers over glass windows, mosaic tiles, bulletin boards, office dividers, and trash cans.
When I was pregnant, I manipulated his date of birth, before I had reason to know anything was amiss. He was past due, and I was given several dates to choose from for inducement. I didn’t want him to be born on the thirteenth, so I chose the seventeenth. I thought I had such control.
When he turned one, I honestly can’t remember how we celebrated his birthday, or if we even did. Was there a cake? Were there candles? Did he receive presents? I don’t think I took any pictures. He wasn’t walking. He wasn’t talking. I felt too frozen to celebrate.
When Alex turned one, seven years earlier, we had a big celebration. He clutched my shirt with his tiny hand as we lit the candles and everybody sang “Happy Birthday.” He took his first tentative steps on my parents’ front lawn, his legs all chubby, as he tried to reach for a new baby lawn mower. I took those milestones for granted and expected them, fully expected Alex to reach them each and every time. And he did.
“Will he ever talk?” I ask the doctor. He regards me in his white crisp lab coat with his name embroidered meticulously in red on his chest. He looks bored or better, preoccupied. Perhaps he is thinking he is hungry, and is considering the sandwich his wife packed him for lunch. My husband reaches over to hold my hand. Mike wants to comfort me. He wants to be there for me, whatever the doctor might choose to tell us right now at this moment, while our son, who is now two years old, is still crawling on the hard linoleum floor, and staring at the shiny metal of the swivel chair the doctor deigns to sit on.
“Do you want my honest answer?” The doctor says as he flips through Matthew’s chart, not looking me in the eye. I want to stick a pin in his side and watch him suffer, because I don’t know if he truly understands what it is to suffer.
“Yes,” I hear myself say, the way a person might say “yes” to a fortuneteller who asks, “Do you really want to know how you will die?” My son crawls up to me, and puts his grimy hands on my knees, wanting me to pick him up and put him in my lap. I feel him trying with all his might to stand, but his muscles are spongy, and soft, and they can’t support his weight.
“I seriously doubt it. If he isn’t even uttering meaningful sounds now, that is troubling. He will continue to fall behind his peers, until the gap is ever wider.” I hear Mike say, as if through water, “But you can’t know any of this for sure, can you?”
“No doctor can ever know anything for sure, Mr. Zimmerman.” That condescending voice. That dismissive attitude. I reach down and gather my sweet boy, and bury myself in his curls. I am not going to give this doctor the satisfaction of seeing my tears.
He doesn’t care if he doesn’t get invited.
He’d rather me tell him stories about the wind, dark skies, and lightening. He’d rather run to every window in the house to make sure it’s still raining out of each one. He’d rather flap his arms and shriek with delight, his cheeks sticky from ice cream, his shorts slightly askew.
By his second birthday, Matthew still isn’t walking. Shortly after he was born, I bought him a pair of soft white leather baby shoes with suede soles. They are stored in a drawer underneath my bed. Unworn. By the time Matthew took his first steps, at two and a half, the shoes were too small. Besides, he needed orthotic inserts that wouldn’t fit inside the shoes. But, when I bought them, I didn’t know that, couldn’t have known that. All I knew was that I loved the soft supple leather and how it felt between my fingers, and that I associated that smell with hope. So, I wonder, what does a mother do with her son’s baby shoes that he never wore? Is it wrong to keep them?
He doesn’t care if he doesn’t get invited.
He’d rather fly a kite in the field and watch the wind snap it back and forth. He’d rather let a balloon escape into the sky and watch it become a pinprick of red against blue. He’d rather watch bubbles rush down the street in the wind.
A topaz is the birthstone for November, Matthew’s month of birth. A pure topaz is colorless and transparent, but usually tinted by impurities.
As Matthew’s third birthday approaches, then ten year old Alex ran to our neighbor Rosa, and blurted, “Guess what? We finally found out what Matthew has.” Rosa put down her garden hoe, wiped her dirty hands across her faded t-shirt, grinned at Alex and asked matter-of-factly, “What?” I stayed within earshot, and strained to hear his response, “You see, he’s missing a small piece of his 10th chromosome. Now we know.” Oh how I loved Alex in that moment – his pure joy in feeling the Matthew puzzle was finally solved.
Except, we didn’t know anything.
The function of all of the genes Matthew is missing is unknown. Matthew is the first person in the world known to have this genetic disorder. The gift Matthew received on his third birthday was a meaningless label: 10p1.53 deletion.
He doesn’t notice my increasingly superstitious thoughts.
If we see three Volkswagen beetles on the way to the doctor’s office, his cardiogram will be normal. If we get home before the storm, he will live into adulthood. If I remember to wear the earrings my grandmother gave me, there will be enough money to take care of him after I die.
Birthday parties have superstitious origins. It was feared that evil spirits were most attracted to people on their birthdays, and that the way to ward off these spirits was to assemble friends and family who made lots of noise. In ancient times, people prayed over the flames of an open fire. They believed that the smoke carried their thoughts up to the gods, and they would make birthday wishes come true.
I start to research other people who were born on Matthew’s birthday, or what events happened on the seventeenth of November. I discovered that November 17 is the 321st day of the year, with 44 days remaining. November 17 is not the most popular birthday in the Northern Hemisphere: that honor is reserved for December 3, which is nine months from the longest night of the year. November’s birth flower is the chrysanthemum. For a month that seems to have lost all color, this feels like a fitting flower. Then I asked myself, why? How would any of this help me?
The first birthday party of Matthew’s I can recall is the one at Smith Playground when he turned four. My mother bought him a beautiful cake with balloons frosted in primary colors on top. Matthew was obsessed with balloons at that age, but I don’t believe he was able to appreciate the cake, much to my mother’s disappointment. She took his hand and tried walking him over to the cake, hoping for some sign of recognition or delight, but he couldn’t give it to her, couldn’t concentrate on that one thing, separate and apart from everything else. He couldn’t help it; he didn’t know that my mother required recognition for such things. She finally retreated to the periphery of the room, dejected. Somebody unintentionally photographed my mother that day, just at the moment she sat down, and that is the image I have of Matthew’s fourth birthday party.
Then, when he was five, there was the year of his unbirthday –the only year when we celebrated Matthew’s birthday in a month other than his real birthday.Our niece turned five that same winter, and my sister-in-law had complained about how many parties her daughter had to attend, how many presents she had to buy, how many Saturdays were made even more hectic.
Matthew was in kindergarten with seven other children. He did not receive any birthday invitations. Of course, to Matthew it made no difference.
We waited until the following spring when grass started growing on our lawn, when the sparrows appeared in front of our house, when we could leave our winter coats at home and drive an hour north to take a mule barge ride along the Delaware Canal. Matthew ran his hand in the water and giggled.
An unbirthday is a neologism, or a newly coined term that may be in the process of entering common use, but has not yet been accepted into mainstream language. In psychiatry the term neologism is used to describe the use of words that only have meaning to the person who uses them, independent of their common meaning. At five, Matthew’s neologisms include calling Alex “Baba,” or a playground a “Gaga.”
We bring in a speech therapist named Pauline. She puts Matthew in a high chair, at the age of five, so he can’t escape. She withholds his favorite toy until he verbalizes his desire, which is a keyboard that lights up as each key plays a familiar tune. “What do you want, Matthew?” She says to him in a high, sing-song voice that you would use to speak to a baby, not a five year old. He points to the keyboard, very directly, very exactly. She acts as if she doesn’t understand. “You have to tell me with your mouth,” she says. He points to his mouth, and then to the keyboard. She exaggerates the word “muuuuussssicc??” He kicks his feet at the bottom of the chair, and the chair starts moving backwards. My stomach tightens. I want to reach over and grab the keyboard out of her hand with the painted finger nails, and give my boy what he wants, which he communicated to her himself, even if not in “words.”
He doesn’t notice I sometimes cry when I am with him.
I watch him when he’s six years old struggling to climb the steps to the big slide on the playground, when kids half his age have no problem. I watch him playing in the swimming pool, fascinated with the rainbows that glisten in the splashes, oblivious to the other children around him.
As Matthew’s seventh birthday approaches, I place a Dixie cup filled with baby teeth on my dresser—Matthew’s baby teeth, to be exact. He doesn’t understand the concept of a tooth fairy, so it would be pointless to put a tooth under his pillow. But I can’t part with his baby teeth. They sit at the bottom of a paper cup and get dusty. I justify my action by telling myself one day scientists will want a piece of his DNA to better understand his syndrome, and I will have just what they need in a Dixie cup. Never mind that they already have bits of his DNA that they tested and retested. I think uncertainty is the problem. I keep trying to clarify for myself who is irretrievably lost and who is still here. I am not oblivious to the notion that maybe, in not throwing out his baby teeth, I am unable to let go of the “normal” Matthew I never had. On the other hand, I wonder if I am demonstrating a healthy tolerance for ambiguity. I can coexist with the dusty baby teeth.
By the time of his eighth birthday Matthew sits down at the piano, and after we sing “Happy Birthday,” he slowly teaches himself to play the song using one finger, one halting note at a time. When he is done he looks at us, as we stare at him in disbelief, and he applauds. Alex, Mike and I applaud back, and Matthew dances in circles, delighted that we have found something to be proud of about him.
“Happy Birthday to You” is the most recognized song in the English language. The melody was composed in 1893. In that year, Matthew’s great-great grandparents were just being born. The genetic flaw that Matthew one day would inherit may have already been flowing through their veins.
He doesn’t know the dreams I have.
He runs onto a highway, and I am paralyzed to save him. He goes too far out into the ocean, and I can’t remember which wave swallowed him. We are in a large crowd in India, and all of a sudden he is no longer with me.
Then there are the dreams where we talk to each other. I hear his voice, and it is beautiful, but in the dream I take his voice for granted, so I don’t pay attention to it the way I should. It is natural the way we speak. Like we do it every day. Some nights I try to train myself into dreaming we will talk. But I find I have no control. And it is so cruel to wake up and not hear his voice anymore. His voice is so sweet, I want to record the sound, but my brain won’t hold onto it.
They dangle all around the place, around him, around me. They are written on the pictures that hang on our walls. They are written in the books on our shelves around the house. They come out of the radio and the television.
They taunt us in our everyday life.
I only remember one of our dream conversations. He said, “Mommy, why do you have those lines between your eyebrows whenever you are with me?” I reach for his soft hand and say, “Because I can’t help it; I worry about you so.”
“But why, Mommy? Why don’t you smile more?”
“I want to smile more. I want to enjoy you more.”
“I heard Alex tell you that as long as he is alive, you shouldn’t worry.”
I start to cry in the dream, and I don’t want to. I want our time together to be happy. There is so much I want to know. And in that realization, I can feel the dream start to slip away. His words were like jewels, clear and sparkly. I want to hold them one at a time and raise them up to the sun. But they start to turn cloudy, and I can see veins running through them. The light won’t penetrate them anymore. I am drifting away.
I am back awake in “the real world,” the world of haze and abstraction— where I can only surmise what it would be like to want to communicate, but not have the means to do so. Where a brain can form a thought, but then have to wade through a substance that disrupts everything, and can’t form the sound that the brain hears. In this world, I still find myself trying to teach Matthew to speak. I say a word with great exaggeration, moving my lips slowly, showing him every movement that is involved. He dutifully watches me. Then I say, “Now you try it.” He walks up to the mirror in Alex’s room. He puts his face close as he watches himself try to imitate me. But this exercise never results in intelligible language.
We’re driving to the mall, our Saturday ritual, for the past year. Matthew is 10 years old. He is gesturing for my attention. He is slamming his hand on the right window, saying, “Eh Eh Eh … Mama.” I am in my own world; I don’t know why he is agitated. Then I realize I missed the right turn, just after the underpass. It occurs to me, he has a sense of direction. That same morning, as I am preparing my oatmeal, Matthew goes over to the cupboard and on tip-toes, reaches for the jar of honey he knows I like, and puts it on the table, next to my place-setting. This is the form that communication and language take with him. I want to call that doctor on the telephone and scream that he was wrong—my son does communicate.
He doesn’t know how others see me.
They think I am doing well. I go to work every day. I wake up each morning. I walk the dog. I do the grocery shopping. I pay the bills. I keep myself clean. I function.
By his twelfth birthday, I tentatively approach Mike:
“I am thinking about Matthew having a Bar Mitzvah.”
“I didn’t think you were that religious.”
“I’m not, but I like what the Bar Mitzvah signifies—a coming of age. “
“But how would we do it?”
“Remember Elizabeth, the woman who grew up Orthodox and taught with you? She said she helped a non-verbal boy become a Bar Mitzvah.”
“I don’t know why I didn’t talk to you about it over the years, but I have been thinking that’s what we would do when Matthew turns 13. Elizabeth said the only requirement of Matthew is that he be able to utter a sound, which he can do.”
“But how would he sit through an entire ceremony?”
“We would rent a moon bounce, one of those large enclosed domes that kids love to jump in. We can put it in an adjacent room.”
“Are you crazy?”
“I already called the Y, and they said they own a moon-bounce, and they would set it up, no problem.”
He doesn’t know what I do when he sleeps.
I walk through the rooms of the house in silence. I savor the taste of cold ice cream. I read books as I lay in my bed with the ceiling fan turning above me. Sometimes I cry, and I can’t stop, and I don’t want to. Sometimes I make love to my husband.
He doesn’t know the vocabulary I’ve learned to use.
He is “developmentally delayed.” Other kids are not “normal,” they’re “typical.” He has “special needs.” He is “non-verbal.” We have a “companion dog.” I call him “my little imp.” We still talk about “putting a pee-pee in the potty.”
I show Matthew the sign for “I love you,” and he tries very hard to imitate it. It is a difficult sign, because it involves folding the third and fourth fingers down, while holding the others up. He struggles. I am intent on him expressing this emotion, if he has it, so I go and get his “PECS” book, which is short for “Picture Exchange Communication System.” One-inch square icons with Velcro on their backs are stuck inside a binder. Matthew is able to catch onto this way of communicating very quickly, easily distinguishing between the pictures, and the meanings of them. I ask him to find the icon for “Mama,” a happy face with long hair curled at the ends. He easily flips through the book and finds it, and hands it to me. Then I ask him to find the icon for “I love you,” which is a red heart. Again, he is adept at locating it and handing it to me. I smile, and tell him how proud I am that he found them so easily.
He doesn’t know he has become a teenager.
When Matthew turned thirteen, I still hadn’t planned his Bar Mitzvah. Had he been “normal” my parents would have put pressure on me. Instead, they said nothing. Matthew didn’t realize he had become a teenager. He didn’t know when I was his age I was Bat Mitzvah’d and Joe Malinowski held my hand at the skating rink, or that I wore a dark blue velvet dress with a pale blue ribbon the night of my Bat Mitzvah service. Or that Joey Langman seemed surprised I had a good singing voice, and that the Rabbi said something disparaging about non-Jews.
When a boy is Bar Mitzvah’d, he becomes accountable for his actions, and his parents are no longer answerable for him in quite the same way. Before Matthew turned thirteen, I liked the idea of shifting responsibility to him, however slightly. I made Mike promise me he wouldn’t shave Matthew for the first time until after his thirteenth birthday. Now that he is thirteen, his childhood is leaving us. His breath no longer smells sweet when he wakes; he has hair under his arms; his cheeks are becoming rough, and he has the beginnings of a mustache. When he utters sounds, his voice is deeper, and it sounds unexpected, because he isn’t saying anything intelligible. I don’t know if he’s ever had an ejaculation. I don’t know whether that would be confusing to him. I don’t know whether he is interested in girls, or boys for that matter. What remains, though, is a child’s innocence.
I keep trying to comfort myself by saying I can make Matthew a Bar Mitzvah any time after he turns thirteen; I don’t have to do it right now. And I really do believe myself: one day I will reconcile who he is. Just not now. Now I am not ready.
He doesn’t understand my laughter.
I laugh with Alex as Matthew brazenly walks along the side of the pool, splitting up two lovers as they move out of his way. I laugh with Mike as Matthew imitates him, trying to tell me Mike was frustrated with him. I laugh at our dog that carries a half eaten sandwich home from our walk, hoping I won’t notice.
It is early one Saturday. I am in the process of making my bed, on a dreary, rainy February morning. I want to go back to sleep like other people do on weekends. I want time for myself. I hear Matthew pulling icons out of his PECS book, and I am frustrated. I envision having to painstakingly place them back on their appropriate pages. I yell into the hallway, “Matthew, do not make a mess of your PECS book.” The removal of icons continues. I hear a giggle that irritates me further. I lie on top of my bed; I don’t want to do anything anymore. Matthew appears in my bedroom in his superman pajamas and a smile across his face. He climbs onto the bed next to me, and just as I feel myself growing more frustrated with him, he hands me two icons: the one for “Mama,” and the one for “I love you.”
He doesn’t notice my slow acceptance.