May 2021 - Jule Ward Writes

May 31, 2021May 31, 2021

The Stealth Kid

When you least expected it

Boy flying high on a swing — Photo by Vika Strawberrika

Our fourth child and only son had a way of quietly disappearing just when you least expected it. So, maybe his unexpected death at age thirty shouldn’t have taken us so much by surprise. But it did and in my dreams, I keep looking for him, certain I’ll find him just as we did those many other times.

The secret to Johnny’s ability to disappear so quickly was he never gave himself away. He was simply there one minute and poof! Gone the next.

a more typical runaway

Little boy in raincoat and backpack — Photo by Daiga Ellaby

His same age cousin Danny was just the opposite. When presented with a new baby brother, Danny had told his parents he didn’t want a brother. They would have to take this squalling infant back to the hospital where they had got him. When his parents insisted that Jamie was there to stay, his six-year-old brother proclaimed, “Okay, I’m running away from home.”

His distracted, tired mom Amy replied, “Go ahead.” Danny then packed his Spiderman backpack full of food and slammed out the back door. Fifteen minutes later their phone rang. A neighboring mom, who lived three houses away, told Amy, “Danny is at our house, and he says that you told him it was okay to run away. He wants to know if he can live with us.”

wandering to, not from

Johnny never announced his intention to leave. He wasn’t running away. He was wandering to … albeit he didn’t know where. The first time I couldn’t find him he was barely six months old. I had run to kitchen to check on a stew on the stove and left him with his big sister playing on the floor in the den while she watched TV. Less than three minutes later, I returned to find him gone. A very agile baby, Johnny had been crawling since he turned five months old and lately had begun to pull himself up on pieces of furniture. But I was sure that wouldn’t take him very far.

I ransacked the first floor, checking under tables and behind sofas and chairs seeking my baby. No luck. Suddenly, I heard thud, thud, thud, and a shrill cry from the direction of the stairs to the second floor. Betsy who had been helping me hunt raced up the steps and found her brother wailing on the second-floor landing. He had climbed to the top of the stairs, but hadn’t known how to negotiate the downward trip. It was time to get some baby gates up – something his sisters hadn’t need until they were at least one year old.

where to now?

I learned from then on to keep a close eye on my adventurous preschooler, but there were still times he could slip out of sight if I were distracted by a phone call or engaged in making dinner. One such evening, realizing I hadn’t caught sight of the four-year Johnny in a while, I left whatever I was preparing simmer while I did a house-wide search.

By now we had moved into a Victorian era, three-story row house on Belden Avenue in Chicago’s Lincoln Park neighborhood. The home had five staircases and twelve rooms, not including the basement playroom. I made a whirlwind quest through all four floors of the house. No Johnny. Beginning to panic – just a little – after all, this wasn’t the first time he had done this. I pulled his sisters from whatever they were doing and sent them out into the immediate neighborhood to look for him, all the while telling myself I would surely have noticed if he had gone out the door.

an ingenuous perch

Upright piano with music — Photo by Sven Brandsma

Setting about a more thorough search of the house from top to bottom, I checked closets and corners of bedrooms between beds and window walls. No sign of Johnny in any nook or cranny. Just as I came down the front staircase to the first floor, Carrie and Betsy rushed in the door, saying they hadn’t been able to locate him in anyone’s yard and none of the neighbors had spotted him.

When I got halfway down the stairs, a slight movement fluttered at the corner of my eye. I turned sideways and looked down into the large, square foyer. There on the top of our enormous, upright piano sprawled my little boy, sound asleep. Laughter gurgled up from my belly and a grin tugged at the corners of my mouth. I looked back at the girls and pointed to their brother.

“Johnny,” Betsy exclaimed. But he didn’t stir an inch. Still, I had to wake him. It had been a miracle he hadn’t tumbled off in his sleep. Did he climb up there with a purpose in mind? We would never know. Maybe it simply looked like a nice quiet place to lay his tired head.

a challenger with challenges

Johnny had to overcome serious barriers in his struggle to lead a normal life. To help him cope in the best way possible, we enrolled him at age twelve at Misericordia, a residential school for children with development challenges

We felt grateful that Johnny remained ambulatory and coordinated. His independence of spirit, however, continued to work at cross purposes to his poor grasp of reality. He had a way of going very quietly about doing his own thing whenever the adults responsible for his care let down their guard. His Misericordia caretakers gave him the nickname, “the stealth kid.” One May morning, he gave everyone involved in his care a genuine scare.

really gone this time?

Jay and I both took the “L” train to the Loop, Jay to his office and me to the DePaul downtown campus. When Jay arrived at his office, his secretary greeted him saying Johnny’s school needed him to call right away. He phoned the administrator of Johnny’s apartment at Misericordia. She was extremely anxious. That morning at Misericordia, Johnny had gotten on his school bus as usual, but his teacher called his apartment to ask why they hadn’t reported that he would be absent. Johnny’s house mother told them, “Because he got on the bus this morning.”

“That’s very strange,” the teacher replied. “He didn’t arrive here.”

Johnny’s bus would have ordinarily dropped him at school at nine o’clock. By now it was nine-thirty and no one knew where Johnny might be. When I later heard the story, I thanked my lucky stars that for once it wasn’t my heart being twisted in knots. By the time Jay was able to reach me later in the day, Johnny had been found and was on the school bus on his way back to Misericordia.

found again

Parked school buses — Photo by Robert Bunabandi

He had been discovered asleep on the back seat of the bus in the parking lot in which the bus driver stationed it in during the day. Thankfully the day was mild neither hot nor cold. It seemed that as the bus aide had lowered the lift from the bus’s side door to allow the children in wheelchairs to exit, the ambulatory kids usually went out the front door. That day, however, Johnny slipped to the back of the bus earlier. When the driver and the aide looked over the bus, it appeared empty. The aide went into school and the driver parked the bus and went home.

Once again Johnny was fine, but the people that cared most about him felt like they’d been put through a wringer. Sadly, the bus driver, a woman I really loved for her kindness to the special kids she worked with every day was suspended from her job. While in some way, I knew that she and the aide weren’t as responsible as they should have been, I could personally testify that the “stealth kid” could act in ways that were very hard to anticipate. Because he stayed so quiet, it could be hard to catch him when he chose to go his own way.

with gratitude to angels

Angles against a dark sky — Photo by James Handley

Through the years I could only accept that angels walked with Johnny. He so easily could have wandered into certain danger and never did. Even though a sudden expected brain bleed took him from us shortly before his thirtieth birthday, he slipped away quickly. He was in no pain. He wasn’t afraid. Nothing would ever fill the empty place he left in my heart. I was grateful, though, for the deep assurance that he was as safe now as he’d always been, guided home by angels.

“But where do you live mostly now?”
With the lost boys.”
Who are they?”
They are the children who fall out of their perambulators when the nurse is looking the other way. If they are not claimed in seven days they are sent far away to the Neverland to defray expanses. I’m captain.”
What fun it must be!”
Yes,” said cunning Peter, “but we are rather lonely. You see we have no female companionship.”
Are none of the others girls?”
Oh no; girls, you know, are much too clever to fall out of their prams.”
― J.M. Barrie, Peter Pan https://www.goodreads.com/quotes/tag/lost-boys

May 24, 2021May 24, 2021

Messy or Neat: Is It a Matter of Genetics?

sharing dna, but little else

In my last blog post, I pondered the question, how my children people sharing so much DNA and raised by the same parents in the same household could be so different from one another? I particularly tackled the question of why my oldest daughter, Kristy, should be so innately friendly, truly a child who never met a stranger while her younger by 18 months sister, Carrie, clung tenaciously to me whenever an even slightly unfamiliar person approached her.

messy or neat: is one better?

Another striking dissimilarity that popped up as my children grew were the

antithetic attitudes that Carrie and our youngest daughter Betsy took toward orderliness. Carrie’s sense of order was inborn, almost God-given. By the time she was six weeks old, she had developed a completely set pattern of eating and sleeping. By her second birthday, she had already established a place in her small room for all her clothes, toys, and books. Everything went back in place after she used it.

Betsy, however, was an infant who though sleep was for wimps. She seemed to be afraid that if she slept for more than twenty minutes at a time, she’d miss out on the something good. From an early age, she took the same attitude toward tidying up. As far as she could tell, it was a waste of time better spent having fun. No pleading, no rewards could entice her to put a toy back on a shelf or a dirty shirt in a hamper. She didn’t say she wouldn’t do it – she “just forgot.” At one point, in desperation, I placed a sign on her bedroom door that read, “If you have a heart condition, enter at your own risk.”

age old question: nature versus nurture

When I researched the topic of sibling differences for last week’s blog, I discovered that scientist have found that we are born with tendencies toward being an extravert or an introvert. Could the same be true about our sense of order? Are some people just born with personalities that prefer order while others thrive on chaos?

It has been established that people react differently to order versus clutter, “For some people, a tidy room can be soothing. An orderly retreat in an often-disorderly world. For others, such rooms can be sterile, bland, and uninspiring. Some people feel anxious in a cluttered room while others feel their most creative amid the squalor.”

one answer: personality types

Some psychologists consider that the tendency to be orderly or messy follow personality types. They tend to see Type A personalities as more orderly and Type B people as messy creatives. But while Betsy slips fairly easily into Type B categories such as enthusiastic, persuasive, friendly fun-lover, Carrie more closely resembles the Type C personality, creative, detailed, organized, thoughtful and concerned about quality control.

And we are left asking are personality types themselves inherited or created by a child’s environment? The straightforward answer to that question, according to most research, is the personality traits of humans and animals are determined in large part by their genetic makeup. But genetics does not determine everything.

what can parents do?

Such conclusions leave me pondering. Could I have possibly been able to influence Betsy to keep her room more orderly and be more helpful about household chores in general? I’m not at all certain about that.

And the researchers back me up. Studies in the field of behavioral genetics focus on three main factors: heritability, shared environment and nonshared environment. While all three sources of influence act simultaneously, psychological research collects data from studies of identical twins raised together, non-identical twins raised together, and identical twins raised separately. The findings from these studies help them determine how much influence each factor has on the personality traits of individuals.

Twins in a field — Photo by Keisha Montfleury

One intriguing discovery that came out of these studies is that while environment, for the most part, plays a greater part than genetics in determining adult behavior, the effects of parents and other caretakers plays a very small role in determining our ultimate adult personality.

it’s complicated

There are simply too many other factors in every child’s life that also influence his/her development. And these other influencers grow in number and importance at every developmental step. One of the first influencers is other siblings. And I’m not courageous enough to attempt to unravel what affect Carrie’s love of order may have had on Betsy’s carefree attitude toward clutter.

By the time Betsy was ready for nursery school at age three and a half, I had pretty much learned to let her live in the chaos she found fit her creative spirit. In filling out her application for the Lincoln Park Cooperative Nursery School, I indicated that the teachers would have some problems with Betsy when it came to picking up after herself and following other rigid rules of order. Shortly after the school received the application, the head teacher and the teacher for Betsy’s potential class called me in to speak with them. Kristy and Carrie had both attended the school. So, the staff was familiar with our family.

mom did know best

They were concerned they told me about my negative attitude toward my third child. The applications for my first two daughters had included no warnings, just glowing descriptions, but here was this gloomy assessment of Betsy. They wondered what they problem was. I had to reassured them that I loved my outgoing, sunny, exuberant baby girl every bit as much as I loved her sisters. Honesty had compelled to include what might prove a challenge for them. They seemed only half convinced of my sincerity.

Six weeks into the school year, however, they called me back into school to apologize. Betsy was, they conceded, delightful in all the ways I said she would be, but every school day when the “clean-up” song began, she disappeared. She had discovered a wonderful, cozy hideaway on some soft beanbag chairs in a closet. These became her instinctive retreat the minute the song’s first note rang out.

we’ll know more later

No surprise there. As individuals, as a couple, and as parents, Jay and I tended to take things as they came to us. Close friends of ours and fellow travelers in the parenthood adventure, the Vander Voorts had a family motto, “We’ll know more later.” We like their motto so much, we adopted, but with a caveat, “We’ll know more later – maybe.” We wanted Betsy and all our children to develop into unique individuals. Letting character flaws as well as strengths emerge as they grew allowed them the best chance to be exactly who they were meant to be. Over the course of their lives, each of them amazed us beyond our wildest expectations.

(Sibling differences is theme I also explore in the children’s story, “Becky Birch,” which I will be posting this week on the Stories That Chose Me segment of this website. Be sure to check it out.)

May 17, 2021May 16, 2021

Siblings: Our Most Familiar Mystery

dna: 50% the same; 100% different!

How is it, I wondered over and over, as my children grew from tiny infants to full-fledged adults, that two people sharing so much DNA and raised by the same parents in the same household could be so different from one another? How much were the differences innate? Had I contributed to making each child unique? Had other factors played a part?

sisters, yes. the same, no.

Pink booties on a bench — Photo by Janko Ferrlic

The issue came up very soon after we became a family of four. Our oldest child, Kristy, never met a stranger. She happily greeted all human persons, willingly went to any open arms, and settled comfortably onto any warm lap. Kristy’s friendliness served as a strong contrast to the stranger anxiety exhibited by her sister Carrie, born when Kristy was eighteen months old.

stranger anxiety

Newborn babies normally are happy to be held, fed and kept warm by just about anyone. But a normal developmental pattern, stranger anxiety, can cause a formerly easy-going baby to become fearful at being passed to

Crying toddler — Photo by Zachary Kadolph

unfamiliar arms. Instead, he or she turn into a sobbing, clingy mess. As stressful as this is for parents, it’s all perfectly normal. It demonstrates that the baby is beginning to order her world. One of his tasks is to distinguish the familiar from the unfamiliar. Ordinarily, adverse reactions to those perceived as “strange” begin when the baby is about six months old. By the time he is fifteen months old, they may hit their peak and then gradually wane away.

an extreme example

Well, Carrie hadn’t read any developmental charts before she came into our life. She was barely six weeks old before she greeted anyone but me with loud wails of protest. Well past her third birthday, she clung to me when Jay and I headed out for an evening, begging me not to go. Her separation anxiety was so extreme I felt that something in our environment must have reinforced it. Could her fears connect in some way to her older sister’s seizure disorder, a factor that had disrupted her life from early infancy?

Let me share a story that demonstrates that reality. One day in February, 1971, brands itself on my memory, but it was not so different than other like occasions.

sweet awakening

At five that morning, I awoke to the sounds of Carrie stirring restlessly in her bassinet, next to my side of our bed. Within a few seconds, there followed little mewing sounds, not unlike those made by kittens. I pushed up against my pillows and reached over to scoop up the baby, swaddled in a flannel blanket. Her soft lips rooted for my nipple and she soon suckled quietly. Jay slept. I switched Carrie to my other breast. A few minutes later, satiated, she let go and her head slipped against the crook of my arm, her dark curls damp and tight. In slow deliberate motion, I slid toward the bassinet and slipped her against the Winnie the Pooh wedged in the corner. I could pretty much count on her sleeping until nine o’clock. I could manage an hour’s rest before Kristy woke.

duplicate trauma

A piercing cry shattered the quiet. Kristy. I reached over and shook Jay’s shoulder and whispered so as not to wake the baby, “Kristy’s having a seizure.”

I darted out the bedroom doorway, across the hall and saw that her tiny form was arching so wildly in convulsions that her crib banged against her bedroom wall. Unclasping the side of her crib, I reached in and cautiously turned her on her side. Her small body felt on fire. “Get a cool cloth,” I commanded. I took it from Jay’s hands and wiped her forehead. I tried to slip her out of her nightgown, but her arms were thrashing too strongly for me to slip the sleeves down. The convulsions should have stopped by now. The fever must be making them worse than usual.”

Within a minute Jay was back, without socks, but otherwise dressed. His feet will freeze I thought, but ran to our room, my heart pumping so hard I could hardly breathe. You have to calm down I told myself. For just a few second, I stopped and gazed at the peacefully slumbering Carrie. I pulled some sweat clothes from a dresser drawer. I so wanted to leave the baby right there. Let her sleep. But I couldn’t. I hurried back across the hall. Kristy’s seizure had stopped, but she was still burning and limp as a wet dish rag, completely knocked out rather than asleep.

Jay had picked her up and was cradling her against his chest. “Can you wrap her up?” I asked. “I’m going to take the baby over to Lucy’s house.” He nodded. With a heart as heavy as lead, I lifted Carrie. She woke and began to whimper as I took her downstairs and struggled her into her tiny snowsuit, whispering, “You’ll be okay” again and again. Was I soothing her or me?

A few minutes later, my neighbor Lucy opened her door.

Before she could say anything, I blurted out, “I need you to take Carrie. Kristy is really sick. We’re taking her to the hospital.”

Without another word, Lucy reached for the baby, but I held tight for a few more seconds. “I’m sorry,” I whispered to her.

better – sort of

It was late afternoon before we returned from the hospital. Kristy’s fever had resulted from a bronchial infection. Acetaminophen had reduced her fever. The doctor prescribed an antibiotic for the infection. She’d recovered he assured us, but also expressed concerns about the length and intensity of her seizure.

Winnie the Pooh book — Photo by Annie Spratt

At home, I carried the exhausted, but now smiling Kristy up to bed while Jay walked down the block to retrieve Carrie. I collapsed into the rocker in the corner of Kristy’s tiny bedroom. Keeping her on my lap, I took a large illustrated Winnie the Pooh from the shelf built into the wall, and began to read her favorite rhyme, “Hush, little baby.” While I read, I listened for the sound of the front door. Was Carrie, okay? She had never been away from me before. The bottle of formula I’d handed Lucy that morning would be Carrie’s first bottle feeding. Had she accepted it or gone hungry? My breasts ached where Kristy’s delicate body slumped into mine.

know more next time

As the front door opened, I heard the wind knock it against the foyer wall with a resounding thud. Louder yet was the baby’s wail. Oh, Carrie, my heart called. Kristy’s eyes were drooping. Trying to be careful, I slid her into the crib. “Mama,” she pleaded and reached a little hand toward me. The baby’s cries became louder. Jay was probably at the bottom of the steps. “It’s okay, sweetie. Time to sleep.” I turned. Was I forever going to be telling my children “It’s okay” when it wasn’t?

Sure enough, Jay stood at the foot of our front staircase. His hair swiped back from his forehead, stood on edge. In one hand, he held out the full bottle of milk and his head was shaking slowly. My gut churned. I went down so fast I had to grab the rail to keep from careening into him. I scooped Carrie out of his arms, shook her little snow suit off of her, and carried her to the living room. Within seconds she was under my sweater, nursing her little heart out. “I’m so sorry.” I whispered, resolving never to disappear on her again.

It was a promise I couldn’t keep, but she did accompany me to the hospital as often as possible after that. But even that wasn’t an optimal environment for a baby inclined to be shy and fearful. Recent behavioral scientific theory that my instinctive concerns might have been on target.

A case of emergenesis

Multi color fish in aquarium — Photo by Maksym Sirman

Genetically siblings share 50 percent of their genes, but “just one gene in a sequence of genes can change the outcome entirely.”

This phenomenon, emergenesis, occurs “when a trait is determined by a particular configuration of many genes. That specific combination of genes then leads a person to display a particular characteristic.” Intriguingly, that characteristic may not be exhibited by anyone else in the person’s family. Further research has indicated that extraversion and introversion are commonly emergenic traits. Thus, it’s not at all unusual that Kristy would have been such a total extravert while her little sister clung to the other end of the social arc.

we’re so lucky!

For Jay and me, letting Carrie go at her own pace turned out to be the best parenting answer. Despite her initial shyness and fear of the unfamiliar, Carrie grew into a strong, intelligent, beautiful, competent woman who climbs mountains, rafts rapids, makes loyal friends for life, and is a wonderful wife and mother.

“I think as women, we have to stop being scared to be the women we want to be and we have to raise our daughters to be the women they want to be — not the women we think they should be.”
― Jada Pinkett Smith

May 3, 2021May 3, 2021

Learning to Live with the Unknown

off kilter

If your whole world suddenly shifts off its axis, you remember that moment in time for the rest of your life.

By the time my first child, Kristin Margaret was nine months old, she filled my days with delight and my heart with pride. Her wispy baby hair deepened into a shimmering gold blonde and curved naturally around her cheeks. When she smiled her wide blue eyes lit up like stars and deep dimples creased her cheeks. And she smiled most of the time. Kristy loved the whole, wide world. Unlike most babies, she had never heard of “stranger anxiety.” Fearless and friendly, she allowed just about anyone to take her from my arms and give her a big hug.

a shattering scream

One placid February Tuesday I slid a sleeping Kristy out of my arms and into her porta-crib for her afternoon nap. Secure of some quiet time, I picked up the phone to call a Mom friend. Ten minutes into our conversation a high-pitched, piercing cry vibrated through the whole house. What? I stopped talking. There it was again. The baby! “Something’s wrong with Kristy,” I cried and dropped the phone into its cradle.

Taking the stairs two at a time, I burst into the nursery and froze in place. Kristy writhed in the middle of her crib, her back arched, her head thrown back, her arms and legs jerking. Foam dribbled from her lips. Oh, dear Jesus, I thought, she’s having a seizure. a vision of my younger sister Nanette in the midst of fever convulsions flashed through my memory.

men in helmets

I scooped Kristy into my arms. The jerking vibrations of her little body sent shudders through me. I should know what to do, I’d watched my parents dozens of times, but I couldn’t think. Kristin continued to convulse. I needed help. Holding Kristy tightly for fear she’d thrash right out of my arms, I ran downstairs. I yanked the telephone receiver off the hook and pushed the “O” button. As the ringing began, tears began streaming down my cheeks. When I heard “Operator,” I babbled something incoherent into the phone, but she understood and assured me the fire department was on its way. Fire department? But…She was gone.

I heard a siren screaming down the quiet suburban street. Men in uniforms pounded at the door. They took one look at the baby seizing in my arms and rushed her to the waiting ambulance. I tried to run after her. A strong hand grabbed my upper arm, “Wait, we’ll see you get to the hospital. I need some information first.” I stared at him. My baby might be dying and he wanted to fill out a form!

“I can’t,” I croaked.

He nodded. “Okay. Let’s go.”

forgetting to pray

I climbed into the back of the ambulance, but I couldn’t get near Kristy. Three huge men hulked over my tiny girl. One had inserted a needle in her thigh, another held an oxygen mask over her face. I couldn’t see what the third one was doing. Abruptly her convulsing body went completely limp.

“Kristy,” I cried.

“It’s okay. We just gave her a tranquilizer to stop the seizures.”

Then the siren drowned out his words. At the hospital, Kristy was wheeled away from me and rushed to an examining room. When I tried to follow the cart, a nurse barred the way.

“Mrs. Ward, you’ll have to wait in the waiting room until the doctors finish.”

“No. I can’t. You have to let me go in. She’s going to be scared. She needs me.”

“I’m sorry, but you’d just be in the way. Listen, I’ll get you a glass of water and you can calm down a bit.” She headed to the nurses’ station.

I stationed myself outside the examining room door, slumped against the wall. When she returned, the nurse urged me once again to take a seat in the waiting room. I shook my head. After that, the doctors, nurses, and techs came and went from the room. Everyone ignored me. After an eternity, I straightened up and crossed to the nurses’ station.

“What’s happening to my baby?” I begged. Tears choked my words.

“We can’t release any information until you see the doctor,” the woman in white at the counter told me.

“But she’s my baby. I need to know.”

“Please sit down. The doctor will be out soon.”

what can a dad Do?

Kristy and her father — Kristy with Jay at 13 months

Just then I saw my husband Jay push through the double doors at the end of the corridor. I ran down the hall. “Where’s Kristy? Is she going to be alright?” he asked.

“I don’t know. They won’t tell me anything.” I laid my head on his shoulder and sobbed. He held me tight as we stood there, letting people detour around us.

Hours dragged on. a doctor approached us, insisted we take a seat, sat down himself, and began, “Your daughter has a very high fever. That’s what probably brought on the convulsions. We’re doing everything we can to bring her fever down.”

“What’s causing the fever,” Jay wanted to know.

“We’re uncertain, but she’s been transferred to our pediatric ward for observation.” And he got up and left.

The nurse told us how to find the room where they’d taken Kristy. In the midst of whirring machines and draping tubes, Kristy slept peacefully. A nursing nun sat in a rocking chair beside her enormous steel crib.

only questions. no answers

Rocking chair at — Photo by Anabela De Sousa

“I can take over now, Sister,” I told her, but the floor doctor who had walked in behind us said to Jay, “You have to take your wife home. She’s been hysterical. She needs to rest.”

I wanted to resist. Kristy needed me. She had only just weaned from the breast a couple weeks before. We’d never been apart. But even Sister urged me to go. Torn and guilty, but too tired to resist, I left my baby in their hands.

But sleep elude me that night. I stared at our bedroom ceiling. Was something seriously wrong with our daughter? I could be just a worry wort. Do stars have a dark side?

when you wish upon a star…

Kristy's bright smile — Photo by John Ward

On the average, babies to speak their first words between ten and fourteen months and have a vocabulary of about three words by their first birthday. Kristy, however, was a natural communicator. She smiled by the time she was three weeks old, waved bye-bye at three months and blew kisses at six months. She had pronounced, “Dada,” before turning six months old. Since then she had picked up more than a dozen understandable words, which she had begun to string together into small sentences. And she didn’t only say the words she knew, she often babbled to us, her friends, and her toys in strings of sounds that had the cadence of real speech. We were convinced that she knew exactly what she was saying even if no one else did. Right at that moment, however, Kristy’s singular brightness felt blurred by the worry I felt.

our same sweet girl, but . ?

We weren’t supposed to visit until ten in the morning, but by eight o’clock, I had slipped into Kristy room. Sunlight streamed from the tall window and lit the gold in her hair where she sat huddled into a corner of her crib, “reading” a picture book on her lap. My heart lifted. She looked healthy and well. “Kristy,” I whispered.

“Mommy,” she yelled, crawled to the side of the bed, pulled herself up by the slats, and reached her arms for me. I could only lean over and give a hug. If I had lifted her, it would have dislodged her intravenous feed.

“Up, up,” she insisted, giving me her biggest smile. I couldn’t say “no;” I couldn’t say “yes.” That trapped feeling would forever shadow my interactions with this beloved child.

A nurse had seen me go in and come to tell me that visiting hours hadn’t started, but assessing the situation, she chose instead to unhook the feed and allow me to take Kristy in my arms. I sat rocking her in the comfy rocker until the doctor appeared. “Well?” I asked.

He looked at the chart rather than at me, “Kristin’s fever is back to normal. She has no other symptoms. All the tests have come back negative.”

What Now? sign — Photo by Tim Mossholder

Confused, I asked, “Then what’s wrong with her? What cause her convulsions”

“Nothing as far as we can tell. She just spiked a fever in response to some low-grade infection. It was part of her body’s response. She’s over the hump and on the mend.”

It didn’t sound like much of an answer. “Will it happen again?”

He actually shrugged his shoulder – as though it didn’t matter. “We have no way of knowing. It could be a one-time occurrence. It could be a pattern. We have to wait and see. In the meantime, it doesn’t help her at all for you to become overly anxious.”

starting over

We returned home, puzzled and wary, but with no choice but simply resume our life, hoping the whole episode would become a distant memory. Returning to normalcy is easier said than done. For three weeks I slept on the floor next to Kristy crib. She was fine – healthy as a young filly, learning new words and skills almost every day, and remaining a sunny, friendly baby about to celebrate her first birthday.

Easter, the first Sunday in April, I woke up to two happy realizations. It had been two months since our frantic trip to the hospital and Kristy had remained seizure-free the whole time. Also, I hadn’t had a menstrual period since that fateful day. My missed periods could be due to stress. My anxiety level over Kristy had remained high despite her apparent good health. But there was also a chance I might be pregnant. That seemed a wild card. It had taken four years to conceive Kristy and she was not yet one year old.

life: joy all tangled up with anxiety

A month passed before I could get to see the gynecologist because two days after Easter, Kristy had another seizure. It wasn’t long. It didn’t necessitate a trip to the emergency room, but it did us send back to the pediatrician asking more questions for which there seemed to be no answers. When in early May I made it into the gynecologist, the news was wonderful, a balm against our worries about Kristin. Our daughter would be a big sister by Christmas. Infertility ceased to be a concern. But one every bit as frightening took its place. What was wrong with Kristy? And what could we do to make her better? Those became the two central questions of our life for the next 40 years.