SAMUEL’S MISSION © copyright 2012 by John Henkels. All rights reserved. No part of this book may be reproduced in any form whatsoever, by photography or xerography or by any other means, by broadcast or transmission, by translation into any kind of language, nor by recording electronically or otherwise, without permission in writing from the author, except by a reviewer, who may quote brief passages in critical articles or reviews.
“HEM/ONC/BMT” by Dan Mahoney, RN, reprinted by permission of the author. All rights reserved.
An early draft of Esther’s story is quoted by permission of the author.
Scripture quotations marked ESV are from the ENGLISH STANDARD VERSION. © 2001 by Crossway Bibles, a division of Good News Publishers.
Scripture quotations marked MSG are from The Message by Eugene H. Peterson. © 1993, 1994, 1995, 1996, 2000. Used by permission of NavPress Publishing Group. All rights reserved.
Scripture quotations marked NIV1984 are from HOLY BIBLE: NEW INTERNATIONAL VERSION®. © 1973, 1978, 1984 by International Bible Society. Used by permission of Zondervan Publishing House. All rights reserved.
Names of some families mentioned in Samuel’s Mission have been changed to protect their privacy.
ISBN 10: 1-59298-228-X
ISBN 13: 978-1-59298-228-8
Library of Congress Catalog Number: 2011961746
Printed in the United States of America
First Printing: 2012
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Cover and interior design by James Monroe Design, LLC.
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Foreword
Prologue: Life on a Thrill Ride
Chapter 1: The Night of Two Moons
Chapter 2: A Family Is Born?
Chapter 3: Life and Death
Chapter 4: Fingers and Toes—Twenty of Each
Chapter 5: Hostilities Commence
Chapter 6: Lifelines
Chapter 7: Angels in Ohio
Chapter 8: Faith, Hope, and Disillusionment
Chapter 9: The New Normal
Chapter 10: Back Aboard the Roller Coaster
Chapter 11: Preparing for War
Chapter 12: Into the Fray
Chapter 13: Search and Destroy
Chapter 14: The Heroes of T5A
Chapter 15: D-Day
Chapter 16: Sam for President?
Chapter 17: A Typical Day in HEM/ONC/BMT
Chapter 18: The Road to Recovery
Chapter 19: A Speck of Trouble
Chapter 20: Meltdown
Chapter 21: Death Comes Calling to HEM/ONC
Chapter 22: A Peck of Trouble
Chapter 23: The Slow Spiral
Chapter 24: Home Again
Chapter 25: Shattered Dreams
Chapter 26: Heart of a Lion
Chapter 27: Letting Go
Chapter 28: Coming Home
Chapter 29: Samuel’s Mission
Chapter 30: Days of Gloom
Chapter 31: Marriage
Chapter 32: The Path to Joy
Chapter 33: So What Is the Value of Prayer?
Chapter 34: Zachary and Jacob Update
Chapter 35: What About Me?
Epilogue: The Dream
Resources for Families Affected by Catastrophic Illness
Glossary of Medical Terms and Medications
Acknowledgments
About the Author
When a child dies, it is always out of season. Dreams die and the world is diminished by the loss of the child’s human potential. Samuel Henkels was just such a loss to the world.
Yet his story, as told through his father’s eyes in Samuel’s Mission: A Family’s Return to Joy, is redemption of that loss. One sweet, brave little boy who endured the ravages of an incurable disease. We all know times of sickness and times of wellness, but Samuel’s time was never equalized.
Samuel’s Mission does not bring messages for the intellect, but for the soul. This book is not a text to be read or understood, but simply felt. It is about feeling Samuel’s arduous experience. It is about understanding courage, commitment, and the experience of love.
Samuel’s parents, his grandparents, and his caregivers are remarkable voices of goodness, courage, and selflessness. They were transformed by Samuel’s life and, in my view, the greatest validation of Samuel’s mission on earth was to allow those who loved him the most to learn that letting one’s heart to break is better than denying the heartbreak. A broken heart can be reborn, but a heart filled with anger and denial has no strength to love again.
Samuel’s parents, John and Suzanne, have transcended Samuel’s death and have continued to love and nurture each other and their children. They find comfort in friends, in family, in their faith and in the firm belief that Samuel’s time on earth was purposeful and important.
I read this story one cold, rainy Saturday morning and found myself weeping at page two. I kept reading and was inspired by the faith John describes—it touched my heart in a way I always want to remember. I came away knowing (or relearning) the impact every word, every phrase, every act of kindness has on a family. I hope to impart that message to the leaders and staff at Le Bonheur Children’s Hospital in an inspiring way. I came away thanking God that my own son is healthy and happy. I came away wanting to embrace John and Suzanne.
Samuel’s mission was to be an angel. He was a mirror for us to see the unlimited beauty and goodness in life . . . and beyond. Settle back—breathe deeply—be still—and you will hear his angel voice talking.
Suzanne and I seemed to live on a roller coaster. Despite commitment and love, the good times during our marriage never seemed to last more than a short while before life’s twists, flips, and turns took over. On the day this story begins, we were atop the world and could only envision a future of joy. Our humble dreams had all come true. The bliss was so great that I failed to hear the familiar click . . . click . . . click of the roller coaster as it approached the summit of the thrill ride—and the inevitable plummet that would follow.
My best day ever had just ended. Family and friends from all over attended our twins’ baptism. Suzanne sported her signature thousand-watt smile as we paraded our babies around the church, as is the custom in our congregation. Later our home was flooded with well-wishers and frivolity as we celebrated this occasion that for many years had eluded us. If only I could have stopped the ride and captured the ecstasy of the day. As we celebrated, I had a powerful feeling that only smooth waters lie ahead.
I was so mistaken.
That magical time on top of the world did not last.
I remember the exact moment and the accompanying rush of adrenaline when I heard our son’s diagnosis. How could it be? Our sons Jacob and Samuel were born in perfect health. How could Sammy be so sick in just those few months? More than the words, I remember the emotions when we were told our child could die.
“I must warn you. This disease is life threatening,” Dr. Berman, Sammy’s physician said. He had identified the illness that afflicted Sam as extremely rare and similar to cancer. The moment is frozen. I can picture the doctors and staff who were present. The hospital conference room reminded me of a cozy den with the earth-tone colors, plush leather chairs, modern artwork on the walls, and a desk of rich walnut. I remember the look of dread on Dr. Berman’s face while he awaited our barrage of questions. Mostly I remember the shock, dismay, and the feeling in my stomach that felt like the first plunge of the roller coaster. My top-of-the-world joyfulness dissipated in a poof! and was replaced with nausea, goose bumps, and butterflies. When I shut my eyes and go back to that moment, I can still recreate that awful feeling. But I don’t do that often.
Many people described our seven-month-old son as “pretty.” Samuel was blessed with huge brown eyes, long thick eyelashes, and a beguiling smile that would light up a room. The nurses who cared for him referred to Sam as the “Gerber baby.”
At first, I wasn’t sure I liked my son being called pretty. But that night, as I watched him sleep peacefully in his hospital crib, I realized Sammy was the prettiest thing I had ever seen. That we could lose him was indescribably frightening. Our precious child was in trouble—big trouble.
There was so much we didn’t know. Suzanne and I were not trained for this fight. We were unprepared for the suffering that Sammy was to endure and our utter helplessness to stop it. The scary things about the disease we would learn soon enough. In time we were able to gird ourselves for Sam’s battle for survival. But other life changes took me by surprise and came without any warning. There was no preparation for how every relationship in my life would change. I could not foresee that marriage and my bond with Suzanne would be so altered. No one warned us that our healthy children were to suffer also, although in more subtle ways. It was almost as if we were suddenly transported to a parallel life in an alien land.
Just those few days earlier, we had been living our dream. I thought then the roller coaster ride of life was over. Suzanne and I had reached the point we had longed for. Happily married, successful in our careers, and ecstatic over raising our three sons, life was perfect. Little did we know how far down the plunge would take us.
“What exactly do you mean by life-threatening? Can he be cured? And what is the name of the disease again?” I asked.
“It’s called hemaphagocytic lymphohistiocytosis. We’ll use HLH for short,” Dr. Berman responded—to the easiest of my questions. “Dr. Nieder will be taking over Sam’s care,” he continued, nodding to his associate. Dr. Michael Nieder had been introduced at the beginning of the meeting as the hospital’s chief oncologist.
“The only cure is through stem cell replacement, which is better known as a bone marrow transplant,” Dr. Nieder explained gently. Suzanne and I stared back in shocked silence.
“Have you seen this disease before?” Suzanne asked, finally finding her voice.
“Twice in the ten years that I’ve been here,” he answered. My raised eyebrows and tensed shoulders asked the next question for me.
“They both passed away,” Dr. Nieder answered quietly.
“What are his chances?” I asked bluntly.
The consultation ended with few answers. But then, Suzanne and I hardly knew what questions to ask. Tears streamed down Suzanne’s face. I sat frozen, stunned by the news, in the now-empty conference room. Dr. Nieder’s answer to my last question echoed in my mind.
“Maybe one chance in two,” he had said.
“Not one for sugar-coating, is he?” I commented to Suzanne, as we dazedly made our way back to Sam’s hospital room.
We were now the parents of a critically ill child. Sam could die. These two thoughts were difficult to comprehend. Life turned upside down with the diagnosis. Our daily conversations now were filled with frightening words such as chemotherapy, transplant, and remission. Sam’s doctor was no longer a pediatrician, but an oncologist. Instead of reading how-to books on babies and raising twins, we researched a rare disease and studied survival rates. Suddenly we were enmeshed in a crisis that would devastate our family.
This, then, is our story. It is the story of a child with enormous spirit fighting for his life. It is a story of how our world flipped upside down and turned inside out. It is the story of lessons learned and relationships altered. It is a story of courage few in this world have witnessed. And it is a story of stunning ways our family learned to connect with God.
We had a long, dangerous, and frightening journey ahead. Although the ending was unknown, only one conclusion was acceptable. Sam must survive. At the outset, his mission was only to stay alive. Samuel’s mission, however, would grow into something much greater.
Sam had many lessons to teach as he battled his disease. He would touch many lives and change more than a few. In the months ahead, our family would encounter much death—and learn so much about life. Sam’s mission, we quickly learned, was not directed by his parents, but by a force far more powerful.
With a battle in front of us, our family prepared for a siege. Sam would be the foot soldier. Suzanne and I could only provide logistical support. With no choice but to fight, we armed ourselves with hope, moved forward with faith in our God, and relied on the support of hundreds of family, friends, doctors, nurses, coworkers, church members, and complete strangers.
It took Suzanne and me a long time to find top-of-the-world moments in our lives, and Sammy’s story can’t be told without detailing some of the trips, falls, and recoveries we each made on the road that brought us to those heady days just before Sam’s disease dropped the floor from beneath our feet.
Each of us grew up in a loving Midwestern home with hardworking, simple-living parents. The media call it flyover country. You can believe the rich and famous are sound asleep when their aircraft pass over Marshalltown, Iowa, where I was raised. Excitement is rare and the roller-coaster rides are few in this land of flat cornfields and little neon.
The sixth-born of nine siblings, my personality was that of the classic middle child. I never got much attention and never really earned any, negative or positive. I learned to avoid confrontation, go with the flow, and fit in without drawing attention to myself. Dad worked hard traveling the state selling furnaces and air conditioners to a loyal network of small-town dealers. He must have been pretty good at it, as he managed to support a very large family.
Mom was like the classic TV mom of the 1960s—you always saw her in the kitchen, laundry room, or in front of the ironing board. I don’t remember that she dressed as well as June Cleaver, though, and she never wore a strand of pearls to dinner. Mom had a seriousness about her (or maybe a lack of joy) that I accepted then as simply who she was. She was never mean or angry; she just didn’t smile often. As a child, I assumed she was just too busy to have fun or give hugs. Today as a husband and father in my fifties, I’m really struck by how little I knew about my mother and the forces that shaped her personality. Her life was never a cakewalk, and I knew little of the upbringing she had survived . . . and the tragedy she had endured.
The big family life had plenty of personality clashes and competition, but then I knew nothing else. Looking back, I am grateful for the solid, loving parents who instilled a great work ethic in me and my siblings. We were raised as devout Catholics, attended Catholic schools, and never missed a mass, Holy Day of Obligation, or other available service. In fact, our parents sent us to mass every morning before school. I realize now that the extra hour without eight kids in the house was a precious respite. But somehow, after all that religious training, I grew into adulthood with little connection to my faith and an inability to speak or listen to God.
I kept the middle-child aspect of my personality throughout high school, never overachieving and finding relationships difficult. Like my position in the family, my grades were middle of the road. I was an average athlete, average golfer, and usually got only average girls. My parents recommended trade school after graduation, and I started out in a one-year technical school. Unhappy with the prospect of a life of hard work with low pay, I decided to make a change in the middle of the first semester. With my sister Judith’s guidance—and without my parent’s knowledge—I enrolled at Iowa State University, in civil engineering, an above-average curriculum. Then a junior at ISU, Judith mentored me through the difficult physics and calculus classes. Looking back, Judith was the first to really believe in me and she instilled in me the confidence to find my way in the world. As a younger brother, I always looked upon her in a bit of awe. Judith’s grades were always at the top of her class. She was very active in clubs and activities in school and popular with her classmates. She too was one of the middle children in our family of nine kids but the one most of us in the younger half looked to for guidance.
Iowa State doesn’t sound impressive in these pages, but I loved campus life. The independence, classes, friendships, social life, sports—girls, it was all great. I came out of my middle-child shell, developed into a man, and found I could be a leader. Paying tuition wasn’t easy. Mom and Dad provided one semester of tuition, room, and board for each child, and the remainder was up to us. I worked as a resident assistant in the dorms, wrote parking tickets for campus security, and drove home twice a month to sack groceries at the supermarket where I had worked throughout high school.
Four years later, armed with my degree, I left the state of Iowa looking for adventure.
I didn’t find any.
I was hired as a field engineer with a heavy construction company operating in the Midwest and Southwest.
Although travel sounded romantic, I ended up living like a gypsy, moving from state to state, building roads for a highway contractor. For a time, the travel was so extreme that, like others on the construction team, I lived in an RV. The locations were not glamorous. When not in the RV, I stayed in cheap hotels or temporary apartments in cities like Marshall (Texas), Shreveport, Wichita, Tulsa, Little Rock, and West Memphis (Arkansas). I felt like I was living in that Johnny Cash song about all those little towns he’d been to.
I settled down once for several years near much of my family in Des Moines, where I managed to meet someone and get married.
It didn’t last long.
The gypsy side of me took over, and I again headed out to build highways everywhere but home. The marriage fell apart soon after I began coming home every other weekend.
Connected only to my career, I moved from one construction site to another. Nighttime and weekends found me lonely and sad. Some of those Saturday nights with no one to talk to felt too much like the Jimmy Buffet song—in which my only visitor was the pizza man. After a few years, feelings of emptiness overwhelmed me. I found myself yearning for a spiritual side—and not knowing how to get there.
It was years before I realized what I missed the most: I wanted roots. I craved stability—to find a place to call home. I didn’t have any idea that would happen when I accepted a job in one more drab city. But Toledo, Ohio, is not as bad as it seems. I quickly found a circle of friends in a similar situation and felt contented for the first time as an adult.
Now in my thirties, I finally realized I didn’t have to think of myself as average. In the mirror, I saw a tall and lean grownup man. I had a solid career and a license to practice engineering, and I was respected in my industry. I enjoyed building airports and superhighways. I liked wearing denim to work and spending the days outside. My job was rewarding in that at the end of every work day there was something tangible to see. I learned to socialize with multimillionaire owners as well as uneducated ditchdiggers, and enjoyed both. I learned that wisdom and intelligence were not always associated with social class. The guy with the shovel taught me as much about life as the guy in the Bentley. It was one of those guys that taught me an important lesson about women as I went through my sixty-three-dollar Oklahoma divorce. (Seriously, a couple could get divorced for sixty-three bucks in Tulsa, Oklahoma, in 1989).
“Mr. Henkels,” he drawled, “one thing I learned about women is that they don’t think like you think they think.” It was a semideep thought that I tried to remember. Of course it took my associate four marriages to gain that wisdom. I hoped I wouldn’t need as much practice.
During this period, I determined it was time to shed my middle-child fit-in mentality. I was a leader at work and found that I could be a leader socially. People liked me. And in Toledo, unlikely as it sounds, I found the adventure I had been seeking. Groups of us would go boating on Lake Erie in the summer and skiing in Michigan when the snow came. The guys in the group took to danger-seeking. We rafted the whitewater in West Virginia, jumped out of an airplane in Michigan, and took the dive from a bungee platform in Toledo. We water-skied the Maumee River at night with the boat lights turned off. The group partied together at downtown festivals and created our own celebrations in the winter.
I dated several of the women but never found one for to give my heart. Then a weekend excursion brought the entire gang to Put-in-Bay, Ohio, on Middle Bass Island in Lake Erie. Thousands of partygoers flock to the island every weekend in the spring, summer, and fall. When the sun sets in Put-in-Bay, the families skedaddle and the nightclubs overflow. Like New Orleans, a strand of beads will get you a peak at a drunken girl’s boobs. And like Las Vegas, “what happens at the Bay, stays at the Bay.”
My first visit to this resort island, I felt like I’d stepped right off Ohio and into Key West when the ferryboat landed. It was like no place I had ever been. Ladies flirted with the men in our group from the moment we boarded the Jet Express ferry. I was halfway, “kinda-sorta” dating one of the women in our crowd at the time and couldn’t take advantage of opportunities that were presented to meet someone new. My roommate and I returned the very next weekend—without our girlfriends—determined to meet the women that flirted with us so easily seven days earlier.
The youngest of three sisters, Suzanne was raised in rural Ohio. Known as Suzie during childhood, she played sports and music in her small-town school. Her mother, Marilyn, remembers that Suzie was absolutely driven as a student. After school Suzanne would set her books on the table in perfect alignment and complete her homework without any prompting from Mom. She graduated from Smithville High School at the top of the class. But Suzanne wasn’t just into studies. She dated the same boy for several years and was popular with the party crowd as well as the jocks and music geeks.
When driving through Suzanne’s hometown, I love to point out to others the gentlemen’s club where she took her first job. Suzanne is quick to mention that the building used to be a chain restaurant and she didn’t pay her way through college by stripping but rather by schlepping cheeseburgers. At Kent State University, Suzanne didn’t wait for graduation to start a career at IBM. She finished her senior year while working nearly full-time using newly earned computer-science skills. As is the Smithville custom and following in the footsteps of her sisters, Suzanne wed right after college. Like my own practice marriage, it lasted less than four years and was followed by a clean break with no children. Also like me, Suzanne devoted herself to her career. She found much success working in Cleveland as a sales rep for IBM. A few relationships followed but she held out for Mr. Right. Suzanne formed deep friendships during this period. She and her girlfriends enjoyed the Cleveland social scene, vacationed in the Caribbean, and made weekend forays to the Lake Erie islands.
I often think of that night at Put-in-Bay as the moment my life started over. Suzanne and I spotted each other across a U-shaped bar at a crowded night spot. A band was playing Caribbean music. Her smile dazzled me. She was one of the most beautiful women I had ever seen—and she was looking at me. After a few swigs of courage, I made a move to approach her. Suzanne still likes to tell how I walked halfway to her before losing my nerve and returning to my side of the bar. When I finally made it to her table, I was quickly under her spell. Her girlfriends gave me the once-over. I was asked to spin around to be checked out.
I did a bad thing that night. I had come to the island that night with my buddy; we had planned to catch the last ferry to the mainland and drive back to our Toledo apartment. But when the ladies were ready to call it a night, I ditched my friend to walk Suzanne to the campground where she and five girlfriends were ensconced in an old motor home. They’d hinted at finding me a place to sleep.
In our family lore, this night became the Night of Two Moons. I was left outside lying on a picnic table while the ladies prepared for sleep. I remember staring up at a beautiful harvest moon when a powerful feeling came over me—a feeling that Suzanne might be the one I had been searching for. The feeling was so powerful that I revisit it now and again when viewing such a moon. Since I had missed the last ferry to the mainland and left my friend without a car or a place to stay, I hoped my feeling was right. When the ladies allowed me inside, I made my move to snuggle up with Suzanne on the big bed at the back of the motor home.
“You sleep on the floor,” Suzanne ordered. I accepted her rebuff along with the offered blanket and wiggled down to the narrow floor and planned the story I could tell the guys about my night in a motor home with five hot single women. I soon fell asleep, only to be awakened an hour later by the arrival of a sixth woman tip-toeing over me to her adjacent bed. I instantly learned that Linda likes to sleep in the buff as I was rewarded with the second moon of the night as she climbed into her space.
My roommate made it back to the mainland but, as I had the keys to my car, he was left without a ride or a place to sleep. He seemed fine after I bought him breakfast. I didn’t think that breaking into a fish company truck and sleeping through the chilly autumn night with newspapers for a blanket was the smartest decision he ever made . . . but decided to keep my opinion to myself. I must have checked a hundred times that the paper with Suzanne’s phone number was still in my pocket.
Suzanne and I began dating one week after the Night of Two Moons. I drove the two hours from my Toledo home to hers in Cleveland. This soon became our weekend habit. I lost interest in hanging out with the gang as we moved slowly into our long-distance dating, each of us in turn taking chances with our hearts, like running into the cold surf and running back out while trying to get used to the water. We talked of our previous hurts and failed marriages. Over time we developed trust in each other and began healing the wounds of our pasts.
We didn’t fall in love. We didn’t float on clouds. We took each other by the hand and trekked through the twisted forests of our previous lives—creepy forests like those on the yellow brick road. We spoke frankly of our hopes and dreams, failed relationships, and the mistakes we had made.
Our talks weren’t always fun. Oftentimes we left each other angry and befuddled. Phone conversations were the worst. Suzanne loved to lounge on her sofa under a warm blanket, pick up the phone, and talk for an hour. My theory of telephone conversation was more along the lines of “state your business and get off the phone.” I could do that in a few minutes: “Hi honey, how was your day? I miss you. I can’t wait to see you this weekend.”
During this period of courtship, I found that Suzanne’s outward appearance was not her true beauty. Inside I found a woman of courage, character, intelligence, and sweetness, and a sense of humor to go along with her great set of ta-tas.
Dating Suzanne was the new highpoint of my life, at least when she was not making me talk about past relationships. We were compatible and shared a number of interests. We both loved travel, and one of us loved adventure.
Our first trip together was one of trepidation for Suzanne. She readily recalls the tremors of panic in her stomach when the aircraft landed in Denver on our way to ski at Vail. But she put her fears aside, took a few lessons, and conquered the mountain. And what a smoking hot ski bunny she made! Whew—I was falling for this one. I let her know my feelings during an après-ski party at the bottom of the Eagle Bahn Gondola lift. The gondola is an enclosed chairlift that can zoom eight skiers halfway up the mountain in about eight minutes. We had just ridden the gondola together for our final run of the day. Suzanne was elated about completing her first blue (intermediate) run down the mountain after several days of lessons. The room was crowded with skiers enjoying a bite to eat and other libations at the end of the day. The front picture window with a view of the mountain was fogged over, and skiers were writing jokes, notes, and pictures on the glass. Laughter and frivolity filled the room. The time was right. I walked over and wrote my feelings on the window.
Across the room Suzanne broke into a dazzling smile and mimed her response. She pointed to herself, clasped her hands over her heart, pointed at me, and held up two fingers. “I love you too.” A smattering of applause broke out from the patrons nearby.
When I added these words, “In the Gondola,” the place went nuts.
Another weekend brought us to Las Vegas. By this time, our love had grown and we thoroughly enjoyed being together. It was good that Suzanne already liked me because the hotel room I had purchased on some promotion scam was a bit seedy and wouldn’t have made a good impression if this had been our first trip. The blackjack dealer we gravitated toward looked like Elvis, except for the missing teeth. Redneck Elvis, perhaps. Our time together was satisfying like nothing I had experienced before. We saw some shows, enjoyed being the best dressed couple in the rundown resort, and held hands like teenagers all the way up and down the Strip.
And then came the most frightening trips—meeting the parents. We left late in the morning for the twelve-hour drive to Iowa and didn’t quite make Des Moines. Grinnell, Iowa, is quite rural and our motel was even less impressive than Bob Stupak’s Las Vegas Resort. In the morning, Suzanne opened the blinds to find corn growing right up to our window. She must have felt right at home.
Dad loved her from the first moment and claimed Suzanne was the best woman I had ever dated. Mom liked Suzanne, too, but she was harder to please—after all, I was the favorite among her kids. She had never admitted to it, but my siblings gave me enough crap about it that it must have been true.
Suzanne’s parents, Curt and Marilyn, seemed to approve. If you look up the definition of “country folk” in a dictionary, you’d probably find their picture. Curt is a cabinetmaker/remodel carpenter with his own business. He often dresses in bib overalls and covers his flattop haircut with various tractor company hats. Curt is always quick with a laugh, knows everyone in a three-county area, and needs few luxuries in life to be happy. Marilyn is a little conservative and finds most of her pleasures in life are centered on hard work; mowing her five acres with a push mower is a great day for Marilyn. I’m not sure if she has ever seen the clock strike midnight and the hardest drink she’s tasted is apple cider. Suzanne’s two sisters both had kids, and I quickly learned that Marilyn loved grandchildren even more than mowing and ironing.
In time, Suzanne and I each knew we had found our life partner. We took turns making the Friday night trek but eventually found weekends were simply too many days apart. Thence began a Wednesday night rendezvous at the halfway point. The hundred-twenty mile space between us somehow needed to be closed. Still, with histories of failed relationships, we were both reluctant to disrupt our careers as well as our homes to move across Ohio, even as it became apparent that neither of us wanted to live without the other. To her credit, Suzanne took the initiative and offered to relocate to Toledo. Her transfer would allow us to be with each other every day.
If that’s not love, I don’t know what is.
Suzanne owned a home and had worked at IBM for more than ten years, yet she was willing to move to Toledo to be with me. Her offer melted my heart—and I gave my two months’ notice to my employer the next week and made plans to move to Cleveland. I hunted for a new job and an engagement ring at the same time.
I planned the proposal at the fanciest restaurant in town, and yes: Toledo does have some nice eateries. But the plan took a detour when Suzanne popped in while I was admiring the diamond before dinner. The proposal went off a bit early, and then—well, we became distracted and were late for dinner. Our courtship was over. But our life together was just beginning.
The journey through our pasts and our time together brought us to the point where we were deeply in love and had a foundation of trust and commitment. As it would turn out, the years ahead would not be easy ones, and we would need that solid base in the future.
But at the time, life was carefree and rosy and we looked forward to a marriage that would last. I moved in a few months before our wedding and began working for the Allega Company.
When I say moved in, I mean my person and my clothes. I brought a whole truckload of furniture along with my car and boat to Cleveland. Most of the furniture was dropped at the curb (must not have had the right feng shui) and the boat was sold with the alleged intent of buying a bigger boat (still waiting). The move was a huge culture shock that shouldn’t have taken me for such a surprise; I left my home, my city, my friends, my job, and my independence to move in with Suzanne. I was in her house and in her life—as in everything about her life. Our social life was hers, and the furniture, sheets, décor, city, sports teams—everything. It was disorienting to have so many changes at once. I suffered a minor identity crisis when I moved in with Suzanne as I was inserted in the middle of her life while at the same time she wasn’t really inserted into mine.
Good thing she was hot.
We immediately began planning our wedding. In Suzanne’s conservative country family, our living arrangement created some unease and was perhaps seen as a bit scandalous. Suzanne was the first divorcée in her family and the only daughter to shack up before marriage. Nonetheless, I was welcomed and included in family events—another insertion into Suzanne’s life.
One of the ways we meshed was in our wedding plans. We agreed that the wedding was to be by us, about us, and for us. We opted for a ten-day cruise with a stopover on St. Thomas, U.S. Virgin Islands, for the wedding. Family and friends were welcome to meet us on the island but not required for our celebration.
Not content to enjoy the bliss of finding our soul mate and letting life ease on by, we discussed conceiving a child on our ten-day honeymoon—and did everything possible to achieve that goal.
Back into reality after our trip, we slipped into a comfortable lifestyle that included long work days and lazy evenings lounging on the couch. But the months flew by and the pressure to conceive began to build. One year of marriage slipped by, and Suzanne had not become pregnant.
At the time of our wedding, Suzanne was age thirty; I was thirty-six. We fully expected to produce children in the normal, natural way. When that did not happen, the quest for pregnancy began to control our lives. Sex was no longer for pleasure. Ovulation week became known as “business week,” complete with strict rules: no alcohol, no caffeine, no hot tub, and no excuses. Romance was left out of the process.
The highest and lowest points on this emotional roller coaster came after we began fertility treatments. As it was throughout this process, Suzanne had the difficult, painful parts. My role was simple. Nonetheless, the first appointment at the fertility clinic was unsettling. I knew what was expected of me that morning, yet I still felt uneasy. The waiting room was full of women, some with their partners. Suzanne filled out the lengthy paperwork while I looked around the room wondering if all the men were as nervous as I. Moments after Suzanne turned in the completed documents, I heard my name being called to the front desk. Showtime!
The nurse handed me a plastic cup along with a few rules. “Make sure nothing but the sample gets into the cup, please,” she warned. “Leave the cup in the room when you are done.”
I’d seen this scene played out in several TV sitcoms. On television, though, there was always videotapes, a rack of magazines, and a comfortable couch. I found no such luxuries. The narrow bed was fitted with plastic sheets and the only erotic literature was three tattered Playboy magazines. I wonder if the nurses have a pool on how long it takes us guys in here. Who cares! I’ve got a job to do, and I’m going to do it. Being a loving supportive husband, I was able to deliver the goods. I even stayed a bit longer to read one of the articles in the magazine. I never knew they had articles.
The sample passed muster.
At first, I thought that was good news. But I still didn’t know much about how women think. If only they had found a low sperm count, Suzanne might have felt less pressure. Numerous other tests revealed nothing physiologically wrong with either of us. The doctor prescribed a mild fertility drug called Clomid for Suzanne. Soon after, I came home from my job building a new runway to find Suzanne at the door radiating her thousand-watt smile.
Saying she had something to show me, she led me into the bedroom where she had left the home pregnancy test. That test, along with seven others she took that weekend, was clearly positive. Suzanne was indeed pregnant!
After agreeing to keep the news a secret for two months, we both phoned everyone we knew. It was a joyful time. We talked for hours and made plans for the nursery. We bought books of baby names and had fun negotiating and rejecting choices. We enjoyed one of those top of the roller coaster times in life when everything seems perfect and nothing but excitement lies in front of you.
But the joy did not last. I arrived home one evening two weeks after we’d gone public to find Suzanne crying and in great abdominal pain. We hurried to the nearest emergency room. Suzanne was in severe distress, yet I refused to believe she was having a miscarriage.
Over the next several days, Suzanne endured many tests, as well as laparoscopic surgery. Once again, she did all the physical suffering. The emotional suffering we shared. As was my custom, I played my masculine role—as the strong one—well. Suzanne cried many tears as I held her close. Although miscarriage is a common occurrence, the pain and anguish were new to us.
Our relationship during the years of infertility alternated between intimacy and distance. The weeks following the miscarriage were our most loving. We leaned on each other for emotional support, talked intimately, and spent hours holding each other. I shed a few tears at odd moments—in my truck, or while working out—but always when alone. The saddest times for me were during church services when the minister would summon the children from Sunday school for a short sermon. The kids would flow down the aisles in waves, some with bright and cheery smiles and others bashful and reserved. Parents in the congregation would stretch and lean to catch a glimpse of their child and then grin at each other like they’d just won the lottery. Suzanne and I would share a different kind of look, usually biting our lip at the same time. Suzanne would often need to dab her eyes and always had a tissue out during children’s sermon.
Infertility and miscarriage can dominate a relationship, and the hurt is usually carried silently. Unless one has been through it, it is hard to understand the depth of pain couples feel as they desperately try to start a family. Of the trials we would face in the future, infertility ranked near the top as far as stress on our marriage. But somehow in that time our marriage survived as we leaned on each other. Of course I didn’t know at the time just how much of the problem was my fault, but was about to find out.
We then moved into what I recall as a black hole of fertility treatments. We tried heavier doses of fertility drugs, intrauterine insemination, and finally decided on IVF, or in-vitro fertilization. IVF was the last—and most expensive—step on the ladder of fertility treatments. A single cycle of IVF cost $7,500 at the time.
With IVF, the ovaries are induced to release multiple eggs in one cycle. Once mature, the eggs are retrieved through a minor surgical procedure and then fertilized in a petri dish. Three days later, several resulting embryos are placed into the uterus. Additional embryos can be frozen for transfer into the uterus at a later date.
Optimistic once again, we began the procedure. First came the onslaught of fertility drugs: one Suzanne injected daily into her thigh, another I injected into her hip each evening. Suzanne also took a daily dose of estrogen. These drugs advertised some nasty side effects, the worst being mood swings. I found the advertising to be misleading. A mood swing would indicate that there are both highs and lows. Suzanne became depressed and angry at the beginning of the process and stayed that way throughout.
As usual, mine was the easy role. I took two doses of patience and understanding daily. Sometimes that wasn’t enough. Our good friends, Jeff and Natalie, who later went through the same process, developed an effective theme for surviving the protocol that Jeff shared with me during one of our private manly conversations. These conversations usually would begin with one or the other of us bitching about our wife’s mood and how little we understood about women. Jeff explained that he would remind Natalie while giving injections to remember two things: “We want to do this, and I am not the enemy.”
The drugs worked as advertised. I paid another visit to the little room with the plastic sheets and old Playboys to provide my portion of the procedure. The doctors fertilized sixteen mature eggs, and nine good embryos formed over the three-day incubation period. Suzanne and I were ecstatic with anticipation. We chose to transfer three embryos into Suzanne’s uterus and have six frozen for later use. The embryo transfer required a short hospital stay but went smoothly. We were at peace, and Suzanne rested for several days with the knowledge that three potential babies nestled in her uterus.
The process made it easy to believe that pregnancy was nearly automatic once the embryos were placed. The pregnancy test was scheduled in the clinic for the day after Christmas. Anticipating a wonderful gift, we agreed to try a home pregnancy test on Christmas morning. We arose early, excited to be sharing a special moment. Suzanne took the test strip into the bathroom. A few minutes later, she called me in to watch it change color together. We stared at the strip willing it to turn blue. But it never changed color. When a single tear fell onto the strip, I knew the test was negative. I held her close, but Suzanne was not to be consoled. Christmas was ruined.
I learned some things from Suzanne during our tear-filled talks throughout this period. Since our wedding day, she had felt enormous pressure to conceive—much of it from me she had said, although I remain clueless to this day how she got that impression—and now she felt like she had failed. Instead of defending myself, I listened—a hard concept for a man—as she let out much of her pain and feelings of inadequacy. I was so surprised to learn that my woman—my perfect, powerful, intelligent, sensual, successful life partner—could feel somehow inadequate.
At IBM where she worked as a sales rep, Suzanne’s nickname was “Suzanne with the Plan.” Her plan for us was to immediately undertake another IVF cycle using our frozen embryos. Our research indicated that success rates for frozen embryos were nearly as high as fresh cycles. Our research proved correct. Through two frozen IVF attempts, we achieved the exact same success as the fresh IVF—none.
We had talked of adoption but as a backup plan that I had not really embraced. It was unclear to me how the process worked, and I worried that we would come to love a child only to lose it to a flawed court system. We were divided on the issue but neither of us had a passionate stance. We both wanted to undergo IVF again. However, Suzanne felt if we started the adoption process, she would feel less pressure to conceive. I was more willing to wait. When we learned of an informational seminar on Russian adoption being held at a local hotel, I agreed to attend, but without enthusiasm.
Suzanne and I arrived to find a large crowd. We were given a stack of papers and found a seat among perhaps sixty other couples. Margaret Cole, the director of European Adoption Consultants (EAC), introduced herself. She described her own experience adopting a daughter from Russia without the benefit of an agency. Margaret then rambled from one subject to another with little direction, while I wondered how she could possibly organize an adoption eight thousand miles away. We then sat through an hour of lawyerspeak on Russian and U.S. adoption laws, including endless warnings about the things that could go wrong.
My metal folding chair became mighty uncomfortable. Suzanne and I were ready to sneak out when recent adoptive parents began speaking. They had their new babies and toddlers with them. The kids were beautiful. Our attitude began to change. We heard several couples talk of their treks through paperwork. We learned of the costs, then listened raptly as couples described traveling to Russia and bringing their children home. Many of these couples had been through the fertility wars, decided on adoption, and were thrilled with their children. One dad described my exact thoughts.
“You know, we sat right in those seats just six months ago thinking exactly what you’re thinking. Margaret doesn’t come off as the most organized person in the world. And she’s not the most dynamic speaker you have ever heard. Forget about that. EAC’s operation in Russia is incredible. We met many other EAC families in Russia, and every one had a happy story to tell. Now I would like you to meet our happy story. This is Alex.” When his wife held up their beautiful six-month-old baby, I was sold.
Suddenly, I was eager to move away from IVF. One would think I was making all the sacrifices to get pregnant. But Suzanne was firm. We would pursue the adoption while attempting IVF once again.
We registered with EAC and requested an infant boy from Russia.