Learning to Live with the Unknown

off kilter
Blue Globe
Photo by Elena Mozhvilo

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

Just before Kristy's first seizureOne 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.”

Hospital lobby
Photo by Mar Ko

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.

Kristy and Jule
Photo by John Ward

“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

Kristy and baby CarrieA 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.

 

Little girl follows big cat pawprints
Photo by Hugues de Buyer-Mimeure

 

2 Replies to “Learning to Live with the Unknown”

  1. I am so lucky that I never had to go through such terrifying moments with Evie. It’s strange for me to read how scary it was for you because by the time I was aware of what was happening you were always calm, cool, and collected for all the Kristy and Johnny emergencies. Of course, I know that it must have been different at the beginning, but you quickly evolved into someone who appeared to be born for the role.

I'm hoping my memories stir up some of your own, please share with us.