For three weeks, Warner had been in a wake-up-around-5a.m.-and-yell-for-Mom-from-his-bed phase. The phases changed, but Abby had already grown so accustomed to this newest routine that she’d woken in anticipation, lying in wait for her son’s shrill cry to come about an hour before her phone’s alarm was set to ding. Her husband’s mouth breathing ticked off the seconds.
She yawned and swung her feet to the floor, but with the movement a flutter of nausea passed through her stomach. Day three of whatever bug she’d picked up. Abby fell back to her pillow.
“Jeff, go get Warner,” she said to the ceiling.
Her husband didn’t respond.
Abby tried again, “Warner’s awake. It’s your turn.”
“What?” His voice managed to fit the question into complaint.
“Your son is yelling, and I can’t this morning. Please go.”
He let out an angry sigh, but moved out of the bed and grabbed a pair of shorts from the floor. “What do I do with him?”
Abby mentally rolled her eyes. He should know this by now. “Give him some milk to quiet him down.” She turned to her side and squeezed a pillow into her body, “Lay in there with him if you have to. I really need another hour.”
Fifteen minutes later she could hear Warner in the playroom banging wooden train tracks together like rhythm sticks, singing his version of Old MacDonald, mumbling through the words, booming for the animal sounds and e-i-e-i-o’s.
She shuffled to the bathroom, splashed water on her face, and attempted to wish away the sunken pockets around her eyes. She’d been losing weight recently. When this happened, it fell from her face first, leaving her gaunt. She didn’t feel lighter or leaner but stripped down, as though stress were eroding her one cell at a time. Abby knew she needed to force down more food today, but at the thought, her stomach rumbled its complaint. She hoped she could keep it down.
At least they didn’t need to leave the house. No school for President’s Day meant the neighbor boys would be dropped off after 7am, on their mother’s way to work. Perhaps, for once, the boys would entertain each other so she could take it easy.
She rumpled Warner’s hair. “Want breakfast?” she asked.
He didn’t answer but followed her into the kitchen. Through Warner’s open bedroom door, she could see her husband asleep on her son’s twin bed, flannel snowflake sheets pulled up so high they practically covered his face. “Thanks for the help this morning; so sweet of you to take care of Warner for me,” she mumbled toward the open door.
Moving into the kitchen, she grabbed a banana, and began slicing it onto a plate, mindful to keep the knife high above Warner’s fingers fluttering up to snatch the fruit as it fell.
“One bite and wait,” she reminded him. He would stuff his mouth so full she worried he’d choke.
“One bite,” he repeated before grabbing three slices, jamming them all into his mouth.
“Mommy said slow down, Monkey Boy.”
“One bite,” he attempted again but his mouth, too full, only managed a thick, two-syllable grunt.
Abby popped the final nub of banana into her own mouth and waited, seeing how her body would react. Nothing. Taking this as a positive sign, she reached for a second banana and began to peel.
After turning on Warner’s favorite movie, Abby grabbed a throw blanket and curled herself onto the couch, facing inward.
“One more hour,” she prayed, pulling the chenille fabric tightly around her shoulders.
They played inside through morning snack then Abby wiped peanut-buttered-fingers before releasing her son and the two neighbor boys, Max and Mason, through the dark garage to the front yard. Within seconds their silhouettes disappeared into the blinding morning sunlight. She followed after them slowly, still tired and stomach queasy, but she inched forward to pull out the sidewalk chalk and bubbles, pausing for a moment where the sharp line of shadow ended, allowing her eyes time to adjust, and set these things in the middle of the driveway. She bent her neck back taking in the sunlight on her face, thankful for nonexistent Florida winters. Mason and Max, already tumbling summersaults in the front lawn returned for the play tools. Max, the smallest of the three boys, made two quick slashes on the concrete with a piece of yellow chalk before holding it in front of him.
“Light saber!” he shouted.
In response, Mason dropped the container of bubbles to pull a piece of blue chalk from the pile. He displayed it in his own defense and began making a buzzing sound before Max jumped forward in attack. The two bounced around, slashing the air. making stabbing gestures, sometimes leaving chalky lines on each others clothes and arms.
Abby picked up the bottle of bubbles, its partially unscrewed cap leaking onto her fingers, and walked to where her son crouched at the end of the driveway inspecting a row of ants. Warner watched for a few seconds, flicked away some of the ants from the row, then watched as they reorganized and straightened the line, only to wait a few more seconds before again disrupting their order. Abby took the bubble wand and sent a soapy shower over his head, the small orbs leaving their circular marks on his clothes and on the concrete around him, but Warner ignored her, not to be distracted from the ants.
She knelt in front of him, “Mason and Max are playing light sabers. Do you want to play?”
But he ignored her, instead squashing two ants with his thumb and concentrating as their successors scurried to fill the gap left in the line.
She charged a day rate to watch neighbor kids. Keeping them only on days they were out of school still provided her with enough “mad money” for pedicures or lunches with girlfriends. But she couldn’t remember her last pedicure or lunch with a friend that didn’t involve a fast food location featuring a play place. The idea being to sit at a table in sight of the indoor playground while their kids romped so the women could talk in peace, but even this arrangement rarely worked. It always seemed her friends’ sons or daughters could entertain themselves endlessly, running through the maze of plastic tubing, racing and chasing, shrieking their glee. But Warner would only sit off to the side, hands over his ears, or stand at the glass slowly thumping his head in the same spot. When Abby gave up and brought him back to the table beside her, he might last another five minutes before his impatience manifested in darting away or slinking to the floor and lying there pressing his smooth, chubby face on the grime-skinned tiles. These behaviors, on repeat, punctuated by attacks with whatever food or trash remained at the table, left Abby empty. Drained of all energy, emotion, or hope she gave up the idea of trying again to rouse his interest in the fun so accessible to the other children but for him mysterious and alien.
Abby become well-practiced at quick, apologetic goodbyes before gathering up her things, including Warner, particularly Warner. His limbs jerked and punched his own frustration of the hour poorly spent, and she struggled to confine him as they fled.
By the time he was three she’d given up on indoor playdates where the volume of play magnified by too many children in one space trapped itself inside her son’s head. En route he would be happy. Alone in the car, watching the passing everything and listening to the soundtrack of his favorite show, Warner giggled and clapped, but once inside he transformed quickly into one of two possible reactions: shock-frozen clump or rage-lashing beast. All in the name of “fun”? She’d had enough.
In their own home Warner accepted his peers. Enjoyed? No, but it was a step above toleration. He might not engage directly in the same play, but he stayed in the room. After Max and Mason or Jace and Lacy, twins from down the street, had left for the day, he would snatch up the toys that had most interested them and begin his best mimicry of their play.
Only when Abby began to make changes to suit Warner did she feel the hope seep back, melting through the cracks left behind in the wake of broken expectations.
She turned to watch Mason pulling a fallen palm frond out of the landscaped beds, sweeping its brown, lacy leaves over his brother’s head.
“No fair!” shouted Max in protest, his eyes already scanning the shrubbery for a weapon larger than the chalk he still held.
“Boys, out of the bushes, please,” Abby called across the yard, but Max ignored her, stepping on an oyster plant to reach for a stick.
“Off the plants, Max!”
He hopped back quickly, his prize already retrieved, and held it up to Mason who promptly brushed it aside with the palm frond, knocking it back into the plants. Abby glanced at Warner who now watched the boys. He jumped up and ran to the scrub oak across the yard, his gate uneven but determined, and found a thin stick the length of his arm, a tuft of leaves still dangling off the end.
“Hi-ya!” Warner yelled, charging forward with his
own weapon. Mason turned, holding his palm frond up right
as Warner attacked, poking through the leaves, reaching
Mason hopped back and growled, attempted a spin kick, but lost his balance and fell to the grass. Max, who hadn’t been able to find his stick again, rushed forward, snatching up the palm frond, waving it in front of him.
“Hi-ya! Hi-ya! Hi-YA!” Warner danced through the brothers poking and swatting.
Abby wrestled with an urge to break up the fighting before it escalated or letting her son continue now that he’d shown interest in the other boys. She bit down on her bottom lip, unable to make up her mind.
Mason remained on the ground, laying on his back and kicking out, eventually tripping Warner so that he fell on top of the boy. Abby took this as her cue to separate them, but Mason screamed before she got there.
“He’s pinching me!” Tears filled Mason’s eyes. “Let go!” he yelled, his little fist coming down on Warner’s back.
Abby understood those tears, she had felt those pinches, locking in deep. She pulled Warner’s hand away and grabbed him into her, rubbing the spot where he’d been punched.
“No pinching,” she said, as his chest heaved, the excitement of the tussle still bouncing in his breaths.
She squeezed him tightly before applying smaller squeezes down his arms—she’d been told by one occupational therapist that the pressure could be stabilizing—before making a show of putting him in time out in a rocking chair on the front patio. The show and time out were for Mason’s sense of justice as well as a chance for Warner to settle and receive steady input through his body as it forced the heavy chair back and forth, back and forth. “Input” was another word she’d picked up from the occupational therapist. She knew Warner’s pinches weren’t malicious, that his actions were protective, instinctive. Bodies colliding sent Warner’s fragile nerves into overdrive.
She’d learned a lot once she’d finally agreed to testing.
Warner had never been easy. At his birth, the midwife remarked she’d never seen a baby so angry, as though he considered the sounds and smells of the world outside the womb a personal affront. But on the birth records, under temperament, she’d simply written, “dramatic, spirited.” Abby soon discovered that before he’d holler out one of his “spirited” cries, Warner would hold his breath for a few seconds as though taking the time to build his fury. Abby wondered if he was in pain, questioning the doctor if his frustrations could have anything to do with a small hernia present at birth, but the doctor assured her this bubble of flesh was normal, non-painful, would heal on its own.
As Warner appeared to accept life on the outside, their next battle came over nursing. Determined to breast feed, Abby had read and prepared, but after the first month tossed the books. Her reading insisted specific lengths at each breast every three hours, but the longer feeds caused horrible reflux and Warner steadily lost weight. Only once she allowed him shorter, snack-like feeds every hour and a half did the milk stay down. During the day this was easily done as she’d taken to carrying him in a sling, but, for four months, he kept to the same schedule at night. In that time, Abby didn’t leave the house much. She didn’t feel safe to drive.
Slowly, Abby discovered more ways to please him. Toys with rattles or bells—no. A blue lion that made a crinkly sound when you squeezed his body—yes. When Warner wasn’t crunching the lion’s body he sucked its ears, a rather disgusting habit, so Abby bought two more lions, keeping a steady rotation between their washings.
He liked the carrier and being held. He would tolerate his swing for up to ten minutes, barely enough time to get a full basket of laundry folded but not put away. She couldn’t even think about leaving him on a play mat or in the pack and play. Not unless she wanted to listen to his “spirited” temperament challenging her decision at full volume.
As he grew, Warner had been a little late on everything—crawling, walking and first words—but he’d always kept just inside the outer reaches of the timelines, the gray blurs that still meant okay. At his one year check up the doctor didn’t seemed concerned, but at eighteen months he used the words “low tone” to describe Warner’s muscles and recommended Warner be seen by an occupational therapist.
The whole drive home she’d cried thinking how a specialist needed to see her child, blaming herself for holding him too much, not enforcing the muscle building tummy time he’d needed as an infant. At home she Googled, “low muscle tone in toddlers” expecting to find a few articles on exercises she could do, but the first link she clicked on began by discussing causes such as hypermobile joints common in children with down syndrome or autism. She’d slammed closed her laptop in frustration. Didn’t children have to be two before autism was even a consideration? Warner had his own timeline and temperament. Why did every child have to fit a certain mold?
But once Warner turned two, she changed her mind about the testing. Jace and Lacy had come over many times by then, but they were almost three years older so she never compared them to Warner. Her uncertainty only grew when she’d begun watching Max and Mason from next door, who at one and three should have been an indicator of where Warner had come and would soon be going. Instead she marveled when Max could hold and manipulate objects more deftly than her son 10 months older, and stood incredulous when Mason spoke a clear and complete sentence, knowing that her own son, who constantly spouted mumbled ramblings that only occasionally bubbled up a clear word, was not seven months out from this ability.
After a full assessment with early child intervention, Warner qualified for speech and occupational therapy. No one seemed too concerned about a diagnosis. Therapists quelled her fears tossing out phrases such as, “general delays more common in boys,” which Abby, satisfied, would repeat at home to Jeff. For another year they continued this way—Abby making adjustments, such as dropping out of play dates, buying a small indoor trampoline because the occupational therapist had said it would provide more joint stimulation, working in a few signs the speech therapist had taught her to give Warner more tools for communicating. But with every birthday came more questions.
Shouldn’t he be brushing his own teeth, now? How long are you going to spoon feed him? Couldn’t he get dressed on his own? Are you ever going to start potty training? Jeff’s concerns buzzed in her thoughts through her days, but it was so much easier to help Warner, to alleviate his frustrations quickly, doing his tasks for him.
There was another line of questions Jeff brought up more and more, but she ignored these completely, wouldn’t allow the words to enter her rotation of worry. Maybe it’s time to have another one? Wouldn’t it be better if you couldn’t spoil him so much? Don’t you think a sibling would push him?
No, Abby didn’t think it was time to have another
child, couldn’t consider a brother or sister pushing Warner forward. Because what if whatever was happening to Warner, happened again?
As Warner rocked in time out, Abby drew a hopscotch path down the driveway. Mason, joining her, insisted on adding the numbers to the boxes, so she let him finish, watching as he pressed cautiously, considering each line. His numbers, aside from the backwards five, were perfect. Warner had no interest in writing or even drawing, only succeeding at a straight line when forced. Number and letters, even a decent circle, were beyond him.
Max and Mason jumped through the squares, taking turns tossing a chunk of chalk on the board to determine which
square to skip. Abby called to Warner, announcing the end of his time out. He hopped from the chair, but ran past the hopscotch game to the line of ants at the end of the driveway, back to inspecting their steady progress, back to finding ways to impede their small strides.
The sun, directly in front of their house, blared down on his dark shirt. Abby could feel sweat at her temples. She began tossing the chalk into its plastic tub, ready to call the boys
She announced TV time and all the boys cheered as she chose an episode of Sesame Street from their digital recordings. Max and Mason sprawled at opposite ends of the large couch, settling in to watch the show, while Warner bounced on the small couch, twisting in every direction until his head rested on the floor, his legs in the air.
“Warner looks funny,” Max giggled.
Abby appreciated that the neighbor kids seemed to like Warner, were entertained by, rather than fearful of or mean-spirited about, his differences. They might comment on his unusual behaviors, but that was it. They were used to him.
She filled three sippy cups with juice and brought them to the boys, Mason complaining he was too big for a sippy cup, as she handed it to him.
“Sippy cups in the living room, big boy cups at the table.” Abby sang the reminder.
Warner flopped his legs to the ground before sitting up to take his cup. He would chug it dry, giving Abby about five minutes of his guaranteed immobility during which she could run to the bathroom. Her stomach had resumed churning and she felt like she might throw up. Whatever it was that had taken over her body had outstayed its welcome. She needed her energy back.
Before they’d married, Jeff and Abby had agreed to the most average of family pictures: two children spaced two or three years apart. Warner approached three and even though it was clear they’d stretched their original timeline, Abby knew Jeff still wanted another child. But with each month she refilled her pill prescription anyway. Eventually Jeff pieced together the clues surrounding her inaction, finding within them her fear of a genetic repeat, and he scheduled Warner’s blood test without asking her. He took the morning of the blood draw off from work, in an act of support or fear that she might not go through with it, Abby wasn’t sure, but the going together felt right.
Jeff helped the nurse hold Warner to the table while Abby leaned over him, reassuring him, Just a second, baby. Almost done. Mommy hold you soon. Once released, she hugged him against her body as tightly as she could, but he continued raging. With vaccinations, he’d always calmed quickly after a hug and a sucker, but this day was different. As though the act of withdrawing blood from him created a deeper pain, his parents keeping him in place the ultimate betrayal. Maybe he was fighting the extraction of his blood secrets. The ringing in her ears lasted through the ride home, a dreary drive as both she and Warner sat stonily, their eyes still blooming a steady stream of tears.
Two weeks later a nurse called. Abby felt immediate comfort in hearing a nurse over the phone ready to give the results. She assumed bad news would be done in person by the doctor himself. This cheerful voice who said, “Mrs. Anders? I’ve got the test results for Warner’s blood work,” could only be ready to utter an “all clear” or “everything looks normal.”
Abby was not prepared for, “Warner tested positive for Fragile X Syndrome,” with a question in the nurse’s voice making it sound as though she had no idea what this syndrome could be. Abby surely did not. “Dr. Stickle wanted me to schedule you for a follow-up consult with a geneticist who could go over this with you. Is there a time this week when you and your husband can come in?”
Abby couldn’t recollect anything she’d said after that, but later when she tried to relay the conversation to Jeff, she noticed a doctor’s name and appointment details written in her handwriting on the notepad by the phone.
She spent the next three days crying and reading everything she could find online about the syndrome this glib nurse had pronounced applicable to her son. Warner would find her at the computer and pat her back before wandering off again, mumbling to himself, “Mommy sad. No wagon, no TV, no snack time. Mommy sad.” Once she picked up the words of his monologue, heard within them his worry that every small thing he held important could be slipping out of his day, Abby banned herself from the computer until after his bedtime, willing herself to see Warner as he’d been before the phone call. A little different, a little harder to please, but a boy with general delays on the cusp of catching up, and beyond that? Anything. Everything.
She would not look at him and see the words from the computer screen: a small gene slippage the cause of missing
protein, weak dendrites, possible seizures, anxiety, physical characteristics brought forth with puberty, hyperactivity, aggression—words that swam through her brain slicking her thoughts with worry. She would serve the snack, start the movie, pull the wagon, and read Harold and the Purple Crayon for the 87th time. All with a calm face, a face that told her son Mommy could let go of her sad.
None of the boys napped anymore, but after a walk, Abby pulling Warner and Max in the wagon, Mason peddling furiously on a training-wheel heavy bike beside them, she implemented “quiet book time.” She set the boys up in three different areas with books around them, turned on a timer, and told them all she wasn’t to be disturbed until they heard it ring. She needed fifteen minutes to herself on the couch, a small pocket of rest to carry her through Max and Mason’s pickup.
She heard Max and Mason giggling, but she knew she had more time before the timer beeped her back to reality, so she lay still, willing them to settle down, until Max sang out, “Mrs. Ab-by! Warner’s na-ked!”
Abby sighed and looked around for her son before hearing him in the bathroom. With kindergarten getting closer, they had starting potty training about a month ago, but she still couldn’t convince him to wait to undress. As soon as Warner realized he needed to go, he’d strip completely down and dash to the nearest toilet. She also didn’t understand why he needed to take his shirt off, but that was Warner. Not the easiest to understand. Better to laugh and decide if you could accept the behavior or needed to adapt it. In the case of semi-public streaking, she planned to work on it.
“Boys, gather up your books. Put them back in the bin.” She called out the instructions on her way to the bathroom. Sometimes Warner could manage fine on his own. Sometimes he decided to unravel the entire roll of toilet paper. It was best to check. She reminded Warner to wash his hands before scooting him to his room to dress him in his bathing suit.
“How about sprinkler time?” she asked him. Turning on the sprinklers in the backyard meant happy, busy boys not in need of much attention.
“Max! Mason! Find your bag and get your suits on.”
She walked out to find them both by the front door where she’d left the bag their mother had packed, their clothes already tossed on the floor nearby, giggling as they pulled on their swim trunks. Apparently Warner wasn’t the only little boy who liked to be naked outside the bathroom.
After Warner’s diagnosis it was almost funny how inept her friends were in knowing what to say, but a woman she didn’t even know, who must have noticed Abby’s arrival on an online forum, sent her a direct message that read, “One small act of love at a time = a beautiful life. My Fragile X guys are 18 and 22. You can do this!”
With this comment in mind, Abby bought a journal and simply began numbering, writing her list of small beautiful things. On the first day she wrote:
- Surprise wisdom from strangers.
- Giving Warner a piggy back ride through the house, ending with a toss on my bed. He laughed till he couldn’t breathe.
- Three ripe avocados on our front porch left by the neighbor.
The boys splashed, ran, and played in the mud puddles created in the spots where their old lab had worn down the grass. Abby sat on the patio, the dog covering her feet, sometimes reading, sometimes closing her eyes and tilting her face to the sun, listening to the boys. Max and Mason had dug out a hole in the dirt, pronouncing it their frog pool and turned their sights around the yard for an occupant. Warner followed eagerly behind them giggling the words, “Frog hunters!” only to be shushed by the other boys attempting stealth as they crept along.
When it came close to Max and Mason’s time to go home Abby dragged a plastic pool from the storage shed, instructing the boys to stand in it while she hosed them down. She was fetching a plastic bag for their wet suits when the doorbell rang.
Abby recounted the events of their day to the boys’ mother who thanked her and reached in her purse for her wallet.
Max and Mason ran past to their car, but Mason stopped mid-step and sprung back to the door shouting into the house, “Bye, Warner!” before grabbing Abby around her middle and yelling out again, “Bye, baby!”
Her neighbor arched her eyebrows and smiled, “Are you—”
Mason released Abby and skipped off to the car. She laughed, “No. I don’t know where that came from!”
“My sister’s pregnant again and he keeps asking if I’m going to have a baby too. He must be applying it to everyone now.”
“That must be it,” Abby said and excused herself to find Warner who’d never come to the door to say goodbye.
Abby laughed again at the silliness of the five year old. She couldn’t be pregnant. When the geneticist told them the odds, right at fifty/fifty of passing on the same defective X chromosome, Abby decided they were done, telling Jeff that if he didn’t get the surgery, she would.
After his procedure, she thought she would be sad, but instead of mourning the children she’d never have, her mind was on the future—Warner starting kindergarten with the best possible services in place, her chance to go back to work. Abby felt as though she’d finally been set on the right course. The geneticist told them about specialized clinics and ground breaking drug trials. Abby made lists, phone calls, and started files. It had taken her too long to come to this diagnosis. She would bury her guilt with action.
But Mason’s words tickled at her thoughts the rest of the day, thoughts reeling with timelines. His words lodged in her stomach when she couldn’t eat her dinner, deepened the shadows around her eyes when she inspected them again in the mirror before bed.
Before she slipped into bed she added to her list, writing about the easy play of chalk and sticks. The entertainment of ants at work. Of sprinklers, mud, and frogs. That Jeff had taken over after dinner, promising to clean dishes, and oversee bath time play and bed time readings.
Her body churned and her fingers stopped to rub her stomach before adding her last entry of the day:
- The upheaval of plans decided. The hope of what’s