A New Baby Ushers in an Unexpected Change

Newborn Betsy and Jule in hospital

This won’t be in the memoir even though it completely changed my life.

baby number three

On an unusually mild January morning in 1973, I awoke to the powerful tug of a contraction across my belly. Our third child would be born that day. Jay and I determined we didn’t want to spend the entire day in a hospital. We calmly woke Kristy, age three and a half, and Carrie, age two, and fed them their breakfast. By the time we called Jay’s mother, the contractions were coming closer together. While we waited for their grandmother to arrive and watch the girls for us, I sat in our big oak rocking. Kristy and Carrie nestled around my belly, and I gently sang and rocked to soothe them and myself.

labor at the movies

“Gramma Mary,” as they called her, arrived in a half hour. Jay and I hurried out and went – to the movies. (We didn’t, of course, tell his mom where we were going.) The film Sleuth, with Michael Caine, was playing at the Hinsdale Cinema. Its suspenseful plot let my mind ride above the increasingly intense and rapid contractions. When a contraction started, I’d grip Jay’s hand, he’d look at his watch, time it and whisper the duration to me. The solution to the mystery eluded me, and I was determined to remain until the movie ended. We heard loud whispers in the row behind us. One of which was a shocked, “I think she’s having a baby.”

off to the hospital

Movie over, we sped to the hospital. When the emergency room nurses realized the intensity of the contractions, they summoned the obstetrician. They sent Jay straight to registration and me right into Labor and Delivery.

There, a resident doctor examined me. “She’s nine centimeters and dilating rapidly. Have you called her obstetrician?” he demanded.

“Yes.” a nurse replied. “As soon as emergency informed us they thought she was pretty far along.”

“Good, well, get her husband up here. He can do the paperwork later. This baby is coming now.”

Two interns slid me onto a gurney for the hurried ride to the delivery room. Jay in his heavy khaki overcoat and Dr. Halama, my obstetrician, rushed through doors at opposite ends of the room like a choreographed scene in a stage play. My doctor wore a tuxedo, which the nurses helped him cover with a surgical gown. I laughed, “Where were you?”

And then I gasped in pain. I panted through the contraction, trying my best to keep my breathes even. Jay stood at my side, holding my hand and gripping it so hard it hurt. Hospital regulations had prevented him from being present for Kristy or Carrie’s births, so we had changed doctors and hospitals so that he could witness this one. The enormous pressure in back and lower belly subsided a little. I repeated my question to the doctor.

birth of our party girl

He laughed. “I was at the cocktail hour before a friend’s dinner party. This baby is making me miss out on fresh lobster.”

“In January, that’s ridiculous.” I retorted, and then gasped again. “Count,” I shouted to Jay and tried to pant in rhythm with his slow, “1…2… 3.”

Dr. Halama wheeled his stool over to the bottom of the delivery table. “The baby is crowning,” he said. A nurse stepped to either side of him, instruments I couldn’t see in their hands.

“There’s the head,” he announced. Excitement blocked my sense of pain, but my body contracted and shoved.

“Slow down. Try not to push. I’m easing a shoulder out,” the doctor said.

A nurse turned to me. “I’m sure it’s a girl. She has such a beautiful face.”

Across from her, the other nurse shook her head. “No, look at those broad shoulders. It’s going to be a boy.”

“Just let me push,” I begged. “Then we can settle this.”

“Just a minute. There, got the other shoulder. Good work. Okay, one last push.”

I bore down with all my strength, felt the pressure of the little body sliding down the birth canal, and seconds later, a high-pitched cry filled the room. “You have a girl,” the doctor told us, holding up the screaming, failing little human being.

hello betsy!

“Give her to me,” I demanded. I couldn’t stand to see her cry. They cut the cord, wrapped her in a soft blanket, and laid her next to me. “Hello, Betsy,” I whispered.

Betsy’s birth was the catalyst for an unanticipated upheaval.
She and I remained at the hospital for three days. She had been born on Saturday evening at 6 o’clock. On Sunday, Jay brought Kristy and Carrie to the hospital to visit their new sister. They couldn’t visit the maternity floor, but the baby room had windows along a corridor outside the ward. I stood on the other side of the nursery and watched as the nurse rolled Betsy’s bassinet up to the window, lifted her out, and showed her to the toddlers on the other side. The tiny bundle instantly fascinated Kristy, but Carrie caught sight of me. She lifted her arms and wailed, “Mommy.”

a trip to the zoo

To distract Carrie, Jay took the girls on an excursion to the Lincoln Park Zoo. It was unusually mild for a Chicago January that week. Going to the zoo was a logical choice of diversion. The Brookfield Zoo, however, was much closer to our home in Western Springs. Still, Jay drove to the Chicago Loop and then north to Lincoln Park. He wanted to take his children to the city zoo, the one that held many fond memories of our pre-suburban days.

As far as I know, they had a wonderful time, but I never really heard about the zoo at all because what followed was much more momentous. On the way back to where he had parked our car, Jay passed a “For Rent” sign in the window of a building that sat on the south edge of Lincoln Park. It stopped him cold.

When he and I had frequented the Zoo in the early years of our marriage, we always admired these stately buildings that lined the south end of Lincoln Park. He couldn’t resist taking a peek. He fell in love with the apartment and discovered, much to his surprise, that the rent was in our price range. Wheels started turning in his head.

Jay has questions

That evening, he left the girls with his mom and rushed to the hospital, full of his discovery. Betsy and I had spent a quiet day. She was a champion nurser, and I knew enough about breastfeeding by then to let her nurse at will. Well rested and feeling at ease with the world when he arrived, I listened calmly as his story burst forth. He finished with, “I want you to see this place. It is unbelievable!”

By the following Saturday, one week later, I was exhausted. Jay’s mom had returned home. He was back at work. Juggling the needs of three small girls was exponentially harder than caring for two little ones.

Jay had made an appointment for us to view the city apartment that afternoon. Tired as I was and as crazy as it seemed to take three small children, one merely a week old, out into the rapidly dropping temperatures of a Chicago winter, I needed to get out of the house. Any excuse would do. The ride would entertain the girls, and I could nurse the baby on the way to the city. As we sped east on the Eisenhower Expressway, it was with growing excitement that I watched the skyscrapers of Chicago’s Loop fill the horizon. We swung around Buckingham Fountain. Its ornate sculpture encased in ice delighted Kristy and Carrie. While we drove north along Lake Shore Drive, they both pressed their little noses against the window to watch the crashing waves of the winter lake.

The rental agent waited for us at the central door of the apartment complex. There was no elevator, but the apartment was on the first floor. Its spaciousness overwhelmed me. Twice as large as our home in Western Springs, it had twelve-foot high ceilings in every room but the kitchen. The rooms included a formal library with its own fireplace. Painted buckled on walls. The kitchen appliances were decisively vintage. Doors squeaked on their hinges. The bathroom floors had cracked tiles–but there were three bathrooms!

But I questioned. Why are we here? We have a home. We’re settled, right? Betsy had been whimpering throughout the tour. Kristy and Carrie ran from one empty room to the next as though in a gymnasium. Without warning, the noise, or maybe my increasing uneasiness, got to Betsy. She let out a loud, piercing wail.

“We have to go,” I told Jay.

“We’ll get back to you,” he promised the agent.

the choice we didn’t see coming

We rode back to Western Springs in silence. After dinner, Jay walked across the living room floor singing to Betsy while I gave the girls their bath and got them to bed.

Once I returned to the living room, I settled in a huge armchair, a Salvation Army find, so comfortable that we still have it today. I nursed Betsy off and on over the next two hours. Jay made us cocoa. And we talked. We relived every detail of the apartment and imagined how we would live there, how each room would function for us, how we could decorate it. Our imagination pictured living in the city again, close to the zoo, the park and the lake. Jay spoke of how easy it would be to get to work.

What was holding us in Western Springs? We definitely didn’t plan to stay for the rest of our lives. But didn’t we need to stay in the suburbs for the sake of the excellent schools? Maybe. We had just assumed that, hadn’t we? Kristy was only three, two years away from kindergarten. That gave us plenty of time to explore the city school situation.

By ten o’clock, we were ready to move. “I’ll call the agent in the morning,” Jay said. But when he called the next morning, the rental agent told us another family had rented the apartment late Saturday evening.
That stunned us both. I fixed breakfast in silence. He hunched over his scrambled eggs and bacon. I held Betsy in the crock of one arm so I could nurse while I encouraged Carrie to eat some eggs from a spoon. Kristy pushed her eggs around in patterns on her plate.

When he finished, Jay sat straight up in his chair. “It wasn’t about the apartment–not really. We’re still moving back to the city, right?”

I smiled and nodded.

photo of buildings
Photo by Chait Goli on Pexels.com

Side-by-Side on Different Paths

Jule and Jay, mid 1960s
hovering over life

“Life happens while you are making other plans” is a popular cliché, but for me the true theme of my life was, “Life happens because you aren’t able to plan.” Sometimes, I simply failed to take the time to think ahead and work out the consequences to decisions I made. Other times, insurmountable barriers blocked the path I chose, and I had to re-navigate my life. This pattern began when I was twenty-three and my gynecologist upturned my world with the news that I might be infertile. Until his fateful words, I expected to wait to have a child until I finished my education and established myself professionally. Instead, I put my career plans on hold and threw myself into trying to get pregnant.

professional promise in an envelope

Exactly one year later, I was home from work sick with the flu, but new life bloomed in our tiny abode. I had not conceived, but our cat, Champagne, had. Fuzzy, grey-striped kittens cavorted in every corner of our living room. The kittens couldn’t hold my attention, however, because earlier that afternoon, I’d pulled a bulging envelope from our mailbox. Addressed to my husband Jay, it was from the Illinois Bar Association. Thick meant it had papers for him to sign, which signaled he had passed the bar.

Tense with excitement, I counted the minutes until he would arrive home from work and see the envelope sitting in the middle of the card table. Following his June graduation from law school, he accepted a position as an Assistant State’s Attorney, but keeping the job depended on passing the bar. He’d be over the moon. He loved his job, its fast-paced rhythm, the intricacy of the court system, the dealings with police, judges, defense attorneys, and defendants. Every day he headed out the door affirmed in his choice of profession.

one more wish

I pulled my knees up to my chin, and Champagne jumped from my lap to check on her little ones. As I waited for Jay to appear on the walk outside our apartment, I couldn’t help wish I was pregnant. Then everything would be perfect.

We hadn’t shared my infertility with our families, but they were asking questions. Barrenness sounded biblical to me, not a condition of the twentieth century. Yet, here I sat, an apparently healthy twenty-four-year-old with a womb as unresponsive as Sarah’s in the Old Testament. Champagne jumped back up and rubbed against me. “Too bad you’re not an angel in disguise,” I told her. “Maybe you’d be the one sent to tell me God had answered my prayer.” Her deep green eyes held mine solemnly. I could have sworn she understood.

The front doorknob rattled. Jay was home! I sat perfectly still, anticipating the moment he’d see the letter. But he walked right by the table and up to me, “Feeling any better this evening?  … Oh!” he jumped because he almost squished a kitten under his heavy work shoes.

“I’m fine,” I said. “More than fine.”

He twisted his head, “What’s that grin about?”

“Look on the table!”

“Holy smokes. Is it THE letter?”

I nodded. He grabbed and ripped it open. And jumped, hitting the ceiling with both hands. “Passed! I passed.  Your husband’s a real lawyer now, honey.”

celebration time

Euphoria swept over us. We ignored the budget and ordered Chinese takeout. We celebrated and talked past midnight. How strange it would be to be financially stable. Passing the bar assured him an immediate, substantial raise. By the next week, his salary would double what I brought home. It made our heads swim to think what that could mean. Dreams piled onto one another like a child’s house of blocks, colorful and covered with dozens of images.

Then at some point he ventured, “We could start saving to buy a house, one big enough for kids.”

My heart froze. “If we have children… if not, it would feel empty living in a house, just the two of us.”

He took both my hands in his. “Jule, it’s only been a year. Dr. Grimes says your body had to heal from the surgery before we can count on any eggs being produced. It’s important you don’t get negative. That’ll just stress you out and make things worse.”

I leaned against him. One of things I loved about him was his optimism, but I wished wouldn’t make infertility sound like something that would just fix itself. I was just so tired of living my life in a holding pattern while his life moved forward in such a defined direction.

“Maybe I should leave Children’s Division. Take a break. The doctor suggested that maybe the stress of the job was contributing to my problems.”

“But you love what you do.”

“I enjoy helping kids have a better life than they could have, but I don’t love the struggle. They can’t be with their natural families because all kinds of awful things happened to them there. And yet, they very often yearn to go “home” no matter how caring their foster family is.  There’s never a truly suitable answer. After three years at the agency, I am understanding why some of the older caseworkers are so jaded.”

a possible new future

“But what would you do if you quit?”

“I could go to school full time instead of just at night.” Where had that come from? Had I been chafing all along, frustrated by the slow pace of my crawl toward a bachelor’s degree?

“Could we afford it if you quit?”

My heart clenched a little that his first response was practical rather than supportive, but the rest of me was roiling with excitement. I wasn’t giving up on this idea. “Let me work on it, okay? I just need to juggle the budget a bit.”

He looked over at the letter propped against the salt and pepper shakers. “Tonight, though, we’ll celebrate this victory. Your next campaign can start tomorrow.”

He reached over and ran a finger down my cheek to my chin, traced the outline of my neck down to the barely visible crevice between my breasts.  Keeping his hand in place, he stood, circled the table, and bent over me. “I think I’m ready for bed,” he said. “How about you?”

I leaned all the way back to stare into his grinning face. “This would be a perfect night to become parents,” I murmured.

“Can’t hurt to try it,” he agreed.

the hard part

A month later, I stood, shoulders back, arms at my side, fists clenched just outside the door of my supervisor’s office. I admired and respected Mrs. Geis not just for the keen understanding she brought to our work, but how sensitively and deftly she molded untried young women, barely into their twenties, into capable, caring but effective caseworkers.

I dreaded telling her I planned to quit, to leave behind the children that had grown to be like nieces and nephews to me, the fosters mothers that “mothered” me even as they cared for the children I brought them. Building these relationships took time and dedication. Every time a caseworker left the agency, the families in their caseload experienced disruption, sometimes serious enough to capsize a placement.

Resigning felt like a betrayal.

Over the last two weeks, I had created a budget that would allow me to quit working for the six months it would take to earn my degree and to pay for the courses. But I shrunk from taking the next step.

“Mrs. Ward, did you need something?” My eyes flew open. The petite Mrs. Geis stood in her doorway not a foot away.

“Oh, I, ah,… I need to talk to you.” I felt like a schoolgirl called to the principal’s office.

“Come in then. You are pale as milk. It must be serious. I hope you’re not ill again.” She laid a small hand on my arm.

“No, no, I’m fine.” Silence gripped me.

“Sit down, please. You’re clearly agitated,” she said and closed her door. She sat on the other side of her battered wooden desk. Suddenly, a sweet grin broke out on her narrow face. “Are you expecting a baby?”

I wished I could lie. Being pregnant was a better reason than just quitting. I could not, however, sit there forever saying nothing. “No, I’m not having a baby.”

“Oh, my dear, I’m sorry to hear that. I know how badly you’ve been hoping for a child.”

Her concern for me drew a sigh. “But I am leaving Children’s Division.”

She nodded her head slowly. “I’ve noticed that you seem strained lately. If a case is particularly troublesome, I might step in.”

“No, it’s not that at all.” I didn’t want her to think I simply couldn’t cope. “I need to finish college. It’s just so slow going to night school. If I switch to full-time in January, I’ll graduate next August.”

“A wise decision, I agree. Can you make it work financially?” she asked.

“We can, unless I get pregnant. That would be a whole different ball game. But I’m not going to just sit around and wait for it to happen.” Both my hands flew into the air. “With my husband done with school and working, we can swing the tuition and a little sabbatical from work for me.”

“As much as we’ll miss you, I applaud this move.”

“Thank you for understanding.” I stood, eager to leave, but at the doorway I turned. “Telling the foster mothers I work with is going to be even harder than telling you.”

one of many new beginnings

We couldn’t know when I started classes at Roosevelt University in January, 1967, while Jay moved to the Narcotics Court at the State’s Attorney’s office that we had laid the cornerstone of our marriage.

From that day until he resigned from his law firm in 2007, Jay would pursue his professional life with unwavering dedication. For however many hours of each day it took, for however many days of each week it required, he devoted them to being a successful attorney.

During that same period, my life spun in kaleidoscopic cycles.

food healthy wood apple
Photo by Julia Fuchs on Pexels.com

Some Sneak Previews

Jule and Johnny in the yard

For the last eighteen months, I’ve been inviting you to come along as I struggle to write a memoir. The memoir focuses mostly on the challenges and special joys of parenting my two children with disabilities. But I cannot isolate those experiences from the rest of my life.

I must, however, limit the number of pages-and, therefore, the number of tales I tell. Twenty original chapters slimmed down to twelve as I came close to the final version. So, some of those tidbits will appear as blog posts here on “Jule Ward Writes.” As the final version of the memoir shapes up, you and enjoy these vignettes. Maybe they will even whet your appetite for reading the book when I publish it.

To Be A Dolphin

“When I grow up, I want to be a dolphin,” my three-year-old son stated emphatically as I read him a picture book about adult occupations. Me, too, I thought, oh, me too!

Although thirty-eight years old and the mother of four young children, I still wondered when I would grow up. When would my real life begin? Could I possibly wake up and this nightmare I had stumbled into be over? I hugged his sturdy, warm body against my chest, rested my chin on his soft curls, and gazed into our little side garden. His sisters would return from school in an hour. From then until bedtime, a sort of low-key chaos would fill our old Victorian rowhouse. And that was the best-case scenario. That was if no one–not me, not my little boy, and not his oldest sister Kristy had a seizure.

epilepsy reality

If one of us went down, the chaos spiraled down into pandemonium. All other activity ceased. And God help us if there was soup boiling on the stove or a bathtub filling with bubbles. That couldn’t matter. First, turn the seizing person to their side, so they didn’t choke on their own saliva. Then, slip something soft under their head to avoid nasty bruises, and grab a clean towel if they were bleeding. Next, loosen their clothing so they could breathe a little easier. And wait. Wait until their limbs stopped flailing, their eyes returned to the center of their sockets, and their breath slowed to a more normal pace. And wait some more. Wait until they could get to a chair or bed to rest and come back to us, wake up, confused and sleepy, but ultimately fine. Or so we hoped.

On this autumn afternoon in 1980, my toddler son and I squeezed together in a singularly uncomfortable mesh and metal lawn lounger; his chubby legs anchored mine in place. A dozen large, hardcover books covered our laps. Johnny’s favorite, “Oh, What a Busy Day!” lay open to a page where winsomely drawn children imagined themselves as doctors, ballerinas, sailors, chef, and other sundry paying occupations. Clearly my son found the imagination of the illustrator quite limited as he announced, “When I grow up, I want to be a dolphin.”

never grow up

I nuzzled my nose into his yellow gold curls and thought, “And why not?” Deep between my heart and lungs lodged the certainty that evolving into a sea creature might be the only way I could keep from drowning in the reality of my everyday life.

I lived my here and now as a bizarre paradox. To an outside observer, it would seem I lived the life of a typical late twentieth-century middle-class, stay-at-home mom. Yet, every day, I woke up in terror that I lacked the resources to fulfill my role.
An illusionist, a trickster, I pulled coping mechanisms out of my ringmaster’s hat, creating a chimera of a brave, but beautiful life. I may have wanted to cry out, “I’ll never make it out of here alive,” but I said, “I’ve got this. It’s not that different from anyone else’s life, not really.”

brave front

My false optimism persuaded far too many people that I didn’t need their help, didn’t want their solace, would hate their compassion. There is no such thing as “normal,” I convinced myself. Everyone’s life has challenges. Everyone had to cope. I never wished to be someone else, to have a different life, to have different children. Rather, I yearned to live this life with as much savoir faire as everyone thought I did.

“Earth to Mom.”

Oh my God, the girls were home from school. I hadn’t heard them come through the back gate. Johnny had drifted to sleep in my arms, undoubtedly dreaming of dolphins.

“Kristy’s bus will be here soon, Mom,” Carrie’s voice broke into my reverie.

I carefully slid Johnny’s plump, warm body onto the chaise lounge. “Stay with him. I’ll go meet the bus and then we can have snacks.”

Back to reality, whatever that was.

 

 

Life Comes Full Circle

Israeli rooftops

My favorite guest blogger, intrepid world traveler, Nancy Louise, shares a favorite story with us this week.

a half-century ago

Fifty-one years ago my newly minted husband, and I took off on a month long round-the-world honeymoon courtesy of a Trans World Airlines interline rate of $98 each!

I had been working in the airline industry; my husband, Frits, was working for a tour wholesaler designing tours to Europe and the Middle East.

Our third stop on the journey was Israel. I had traveled a bit in Europe… but this was my first time to venture further. I was 24 years old and having grown up in the Bible Belt of the South in the US — I had never even met a Jew — much less a Muslim. Or a Palestinian.

overcoming naivete

My entire “understanding” of Israel was based on Leon Uris novels and gorgeous Paul Newman playing the lead in the movie, “Exodus”.

Frits had a business contact, Emil, in Israel and had written him (yes, an actual letter in the mail!) asking him to make us a hotel reservation. We arrived in Tel Aviv on New Year’s Eve of 1971.

Emil was there at the airport to meet us. He informed us we would not be staying at a hotel. We were going to stay with his family!

Emil lived in Jerusalem near the top of the Mount of Olives (next door to the Papal delegate). We pulled into his yard, which overlooked the Old City just at midnight as the bells of Churches pealed out the New Year. It is a treasured memory.

We stayed five days with Emil and his wife,Um Hani Abu-Dayyaeh. Emil gave us our own private tour guide, driver and car with Palestinian license plates. It was an eye-opening experience. Our guide, Mohammed, was a Palestinian Muslim who knew the Christian sites and their meaning better than most Christians did. With our Palestinian license plates, the Israeli military stopped us every half hour for “security” purposes. Mohammed also had to caution us frequently on taking photos of anything thing or person who could be construed as our “spying” on the Israelis. We were quite oblivious.

Emil and Um Hani also took us to a Palestinian Refugee camp—a sobering sight that I would never forget.

struggle to survive

In the evenings Emil and his wife shared with us their lives and struggles to live in a country that had been Palestine when they were born—- and was now Israel. Emil had sent his two sons to study in the United States to keep them out of the constant conflict between Israel and Palestine. That had been a painful decision, but one he felt necessary for their safety.

The family had lost everything in 1948 and again in the “Six Day War”of 1967. In January of 71 when we visited — Emil was unsure if his once more struggling tour company would survive. He and his wife were Christians—Lutherans — specializing in Christian Pilgrimages. And tourism hugely depends on the stability of the country.

Frits continued to work with Emil for the next two years, but then we moved from Michigan to Chicago, Frits joined KLM Airlines, and we lost contact with Emil.

many returns but no re-encounters

Over the years I have returned to the Holy Land a half dozen times mostly as a Tour Director, which allowed me no private time to hunt up the Abu-Dayyaeh family.

Now retired, I thought I had done my last tour of Israel. I was, however, persuaded in the summer of 2022 to join friends through Loyola University to come back for one last visit—a full-fledged pilgrimage.

Our itinerary was to include a dinner with students from a Palestinian University and a group of Palestinian Lutherans. My thoughts went back to that first trip and Emil and Um Hani. Their first names were the only ones I remembered. I thought, “How big could the Lutheran Palestinian community be in Israel?” I knew Emil had most probably gone “home to God” by now. It had been fifty-one years ago—and Emil had been well into his 50s when I met him. I wondered though if anyone would remember this hard-working, dedicated man and his family. So I texted Frits and asked him for the name of the fledgling company that Emil had started. Frits responded, “Near East Tours”.

an extraordinary coincidence

I was standing beside my tour bus when I got the text. And there in BIG letters on the side of the bus were the letters “NET”. I went up to our driver, Haseem, also wearing a shirt emblazoned with “NET” and asked him if “NET” stood for Near East Tours. He replied. “Yes it does!”
“And was the founder named Emil? ”
Haseem confirmed that Emil’s company was now owned by the two sons. One son, Hani, would be at the dinner that evening.

Hani and I had dinner together at our special gathering that night. I regaled him with my memories of that first Holy Land visit courtesy of his family—and how that eye-opening journey profoundly impacted my life and would lead me to be involved for many years in Interfaith endeavors with a group called “Soul Space,” of Jewish, Muslim and Christian women — with a mission of sharing the commonalities of our faiths through mini-retreats.

Hani informed me that his Mom, Um Hani, was still very much alive. Indeed, she had worked every day in the office until Covid hit! And at 96 she still lived independently in that same house where we had stayed.

full-circle experience

I asked Hani if she was still up to having visitors. I wanted to thank her for that life-changing visit so long ago. He called her there and then… and the next afternoon our driver, Haseem, took me in his own car up for a visit. When Haseem dropped me off, I told him I would probably only be a half hour. After all… she was 96 years old! When he returned… Um Hani had barely gotten started! Haseem joined me — and we sat riveted, listening to the stories of the very long life of this remarkable woman. Near East Tours had not only survived — it had thrived — expanding throughout the Mediterranean — to such places as Greece, Turkey, and Egypt.

It has been a “full-circle” life event for me. My first… and what for sure will be my last visit to the Holy Land impacted so much by this wonderful family.

I have long treasured these words from Mark Twain: “Travel is fatal to prejudice, bigotry, and narrow-mindedness” That journey was my first proof of Twain’s truth.

Over the years, Nancy’s friends and family have urged her to record her experience as a memoir. She has had so many, she feels she doesn’t know where to start.  I think the theme of “Then and Now” could be a wonderful organizer for her writings. Let us know in the comments if you agree.

Writers Need to Be Heroes

wonder woman illustration
silhouette of mountain under night sky with stars
Photo by McClain Crigger on Pexels.com

An Author’s Dark Night of the Soul

If one imagines a hero’s journey for authors, then your dark night of the soul is probably when no one believes in your work except yourself.

Jane Friedman <jf@janefriedman.com

Coming to the end of a first full edit of the memoir I’ve been writing for two years, I spiraled down into a dark night of despair. Who but me believed in my projected book? Was I my only audience?

In her blog, Electric Speed, Jane notes writers can fall prey to the temptation to internalize the “NO” they receive from editors or publishers. (Jane Friedman, August 5, 2022)

I have found one can also internalize the critiques that one receives from fellow writers, those colleagues you ask to access your work.

a sign from the universe?

If we treat that “NO” like a “sign from the universe” that our work doesn’t make the grade, our life as a writer can end right there. A chance encounter or an unexpected opportunity could reverse your fortune, but that’s not the likely outcome. What we need is the more straightforward solution—turn up the volume of your dedication to your work.

Straight forward, yes. Easy, no.

For that reason, Friedman suggests authors think of this task in terms of a “Hero’s Journey.” What is a “Hero’s Journey?” It’s a literary device that breaks a character’s story arc into discernable steps with a probable outcome. The journey typically has twelve steps in three acts. (Thirteen Step Guide to the Hero’s Journey)

If my writing struggle follows this arc, what would that look like? Here’s how I imagine it.

Act I—The Departure

Step 1The Ordinary World in which the hero is living their everyday life oblivious that they are called to something bigger. For me, I was retired and finally had the time to write I had dreamed about for years. I crafted two novels, several short stories and started a blog.

Step 2–The Call to Adventure: An incident transforms the hero’s life with a sudden jolt. As a member of several writing workshops, I read and edited memoirs for colleagues. The more I worked with these manuscripts, the more I knew I had to put down my other writing. I had to memorialize the lives of my two extraordinary children.

Step 3–The Refusal of the Call is where the hero doubts her abilities to accomplish the task. There seemed to be so many reasons this story couldn’t be told. It covered too many years. It was too complex. The mystery that shrouded it would be difficult to unveil.

Step 4Meeting with the Mentor: There were multiple mentors in my life. Friends and writing colleagues, as well as family members, all urged me to write this book. My Wanderer’s Writing Workshop colleagues promised to read and give advice through every step of the process.

Step 5Crossing the Threshold: Ready to head the call. The hero sets out on the journey.  As best I could recall, I wrote a chronological record of what had transpired during Kristy and Johnny’s lives. Then I constructed an outline on which to base my writing.

Act II – Initiation

Step 6Tests; allies; enemies: This is a long beginning of the adventure when the protagonist finds all their abilities stretched, discovers some new allies, and encounters expected enemies. I started the memoir in many places and gave it different emphases. Nothing seemed to work. New colleagues agreed to read the work. I took two memoir-writing classes, which both taught me techniques and bolstered my confidence. My memory and my self-confidence were constant enemies, begging me to give up this arduous task.

Step 7Approach to the inmost cave: Here, the hero faces the genuine challenge. It’s the call to the ultimate battle. In December, 2021, I finished a complete draft, seventeen chapters! It felt like such an accomplishment. But it was only a “vomit draft,” that is everything I had in me about our story. With the new year, I faced turning those thousands of words into a well-paced, page-turner that someone would want to read.

Step 8The Ordeal: This is the moment of truth where the hero dies, even if metaphorically, and must be reborn. For the last eight months I’ve “killed my darlings” as the jargon goes in the publishing world. With each part of the memoir that I chop from the final draft, a part of me goes with it. My hope is the final product will be a true rebirth.

Step 9The Reward: The hero has achieved a major success. When I finally believe that I have edited my manuscript to where it can be offered for publication, I’ll have reached this step. But I’m not there yet.

Act III –Return

Step 10The Road Back: The Hero returns home with the reward. Once I have what I am convinced is a publishable work, my journey will be to decide whether to self-publish or offer the memoir to a traditional publisher. Either of these will be a long, painstaking trek, but I’ll be buoyed up by having finished the manuscript.

Step 11The Resurrection: The hero faces a major threat, often the threat of death itself. For me, this would be if they published my book, and no one buys it. I know absolutely that getting it out there will not be enough for me. I’ll need the affirmation that someone values it enough to pay for it.

Step 12The return with the Elixir: After this, the hero is no longer the same. The challenge has been successful. Death is beaten. If my narrative fulfills its intent, others will understand what rich and meaningful lives Kristin and Johnny led. The meaning of their lives and mine will endure even when I die.

 

 

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Am I Writing a Best Seller?

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a thought-provoking question

In her most recent email to fellow writers, my friend, and colleague, Erin Donely, challenged her readers with the question,” Is being a ‘best seller’ the best idea?”

“Every book reaches a critical juncture in its development,” Erin states, “when you must decide: Do I want this book to reach the masses, or does it serve a more specific audience? It’s hard to know at first.” (Erin Donley, erindonley@erindonley.com. July 29, 2022.)

Erin emphasizes that authoring a book about your life can be – terrifying, traumatic, and cathartic. But if you aren’t clear about what you are doing, the whole project will turn into a major burden.

You must be clear about two major aspects of your memoir. What is its purpose? Who is its ideal audience? The answers to those two questions will give a memoir its direction and its organizing principles. Without them, you have nowhere to begin because you don’t know where you are going.

have a higher purpose

To ensure that your book serves its highest purpose and reaches its most ideal audience, Erin suggests, you need to ask yourself why should this book be written. Who will benefit from reading these words? And most importantly, what do I need to get this work done?

Answering these questions correctly, she promises, will “set you free.”

So, I challenged myself to answer Erin’s questions, to fill in her blanks.

Starting with the question, “Who needs to see these words beside me?” I formulated the following.

“More than anyone, I want all the people who supported me as I cared for Kristin and Johnny, my two extraordinary children, to read it as soon as it’s available to them. Every one of them needs to know what their strength and caring meant to me and to my children, how they sustained me and kept me going when I thought I’d never make it, and how much I will always thank God for bringing them into my life.”

These helpers and supporters were family members, friends, neighbors, teachers, care workers, and other parents of persons with disabilities. Like angels, there always was “someone,” just the right “someone” for the moment. I know they won’t all find themselves directly referenced in the memoir, but I hope they pick up the vibes of gratitude that the book will carry.

all parents need to know

In speaking directly to those who upheld me throughout my children’s lives, I hope to speak indirectly to all parents. Raising a child, any child, from infancy to adulthood, is a challenging task and they don’t have to go it alone. We all need support. Hopefully, parents hear me say, “Open yourselves to help whenever it’s available.” I didn’t do that as often as I should have.

When I envision speaking directly to this audience, Erin feels confident that I’ll set my book free – “from having to do the heavy lifting that commercially viable books require.” I can draft our story without seeking expert advice about my children’s medical conditions and without comparing my book to others on the same topic.

the toughest question

That leaves me with Erin’s last and very central question, “What do I need to get it done?”

At this point, the whole story is there – all twenty-seven chapters of it! You’re right. You don’t want to read twenty-seven chapters and I don’t blame you. I am working hard to hone it down to ten succinct chapters, following the advice of one of my other mentors, writer, Ellen Blum Barish (http://www.ellenblumbarish.com/). She suggested last fall that I pick a number and stick with it. “Your instinct for an important number can be a true guide,” she assured me. She also said, “Find the stories that make Kristin and Johnny ‘Pop off the page.’” I’m trying to do that. Johnny adored everything Seuss and would have loved her advice.

Another respected mentor Marian Roach Smith (https://marionroach.com/)has helped me seek “the turn for home” like a good racer. I’m doing my best to keep pace. The memoir is not a never-ending story. It’s coming closer every day to being a finished project.

Thank you, for hanging in there with me.

 

 

 

 

 

 

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Find Yourself in My Story

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not an autobiography

As important as what a memoir must be is what it cannot be. Memoir is not autobiography. By far most memoirists are not people whose lives compel them to write a full-blown autobiography. If you are the first Black woman to become Vice-President of the United States, readers will want to know about your childhood, your education, and even how you manage to get dinner on the table while being the Vice-President. Thus, you will need to write an autobiography. And you’ll call on professional writers to help you craft memorable work.

The rest of us who wish to share part of our stories with the wider community have a humbler purpose. Everyone has fields of expertise. That doesn’t necessarily mean an ability that takes years of school or practice, like playing the piano well or teaching grade although those certainly are important and interesting skills. An area of personal expertise can be as simple as developing a satisfying relationship with a rescue dog. Yet, these smaller-scale accomplishments offer opportunities to develop compelling narratives that will hold readers on the page from the first word to the last.

finding myself in your story

The reasons I would read your memoir differ fundamentally from my motivation for reading Kamala Harris’ autobiography. I’ll read her book to learn about Kamala. When I read your book, I’ll be hoping to learn something about myself.

That’s right! The kicker of writing a memoir is that it isn’t “about” the writer. It’s about his/her/their field of expertise that can have meaning for you in your life. If, as a memoirist, I stray into simply drafting my own story just to tell you about me, you aren’t going to read it. Even if you thought you’d like it and bought it, you wouldn’t finish it. Reading must nourish us in a way. When a memoir does what it is supposed to do, the reader learns something they can apply to their own life. What they learn may even be a universal truth they already knew, but the memoir heightens its value for them.

finding the universal

The claim I make here is one of the seven principles of memoir writing, developed by Marion Roach Smith. She calls it the “Need for the Universal.” https://marionroach.com/?s=need+for+universal

As I continue the challenge of writing my memoir, I must find a way to universalize my argument. Where in my story would others see themselves? Six drafts of my memoir imprinted themselves on my computer screen before I finally discovered the four-leaf clover, the universal factor in the story I wanted to tell.

the way I was

In the early years of mothering my children who struggled with progressive myoclonic epilepsy, a rare brain disorder, I became overwhelmed with the effort to find a remedy for their illness and to care for them completely on my own. Eventually, however, I realized I needed to step back from their full-time care and share that responsibility with others more experienced than myself.

what i became

The universal exists in the tension, what Roach Smith names “the gap” between the two. https://marionroach.com/?s=create+the+gap  What stood between me and the best possible life for my children? It was the dread of a word freighted with misunderstanding, “institutionalization.” I needed to move from a place where no matter how tremendous overwhelmed I became; I was never going to be “one of those parents who put their children away” to realizing that good residential care for children and adults with developmental disabilities can be an exceptionally good thing.

a better understanding

The right place not only provides a happy, productive life for the residents but also involves their families in a wider community of support and engagement, which empowers advocacy and nourishes friendships. If a family is fortunate enough to find a genuinely good residential situation for their challenged family member both that child/adult and the whole family will lead fuller, richer, more satisfying lives.

As I write and construct this narrative, I must keep in mind that there is a full range of residential options for persons with developmental disabilities. We were lucky to find Misericordia. But there’s a larger principal at work in my argument. It is that a broad supportive community of some kind is a necessity of life for any parent but most especially for parents of children with special needs. It’s not easy to find that community but it does exist and it’s worth seeking out. More than anything I want my memoir to say to other parents:

don’t do this alone

 You deserve to be happy. You can find joy in parenting your special child who brings unique blessings into your life. But it won’t happen if you’re exhausted by their care. Help is out there. If you don’t have time to look for it, ask for the help of your family.

Our children need our advocacy, and we can only bring that to the table if we nourish ourselves as well as them.

 

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The Value of Community

Together
Idea of community

Everyone’s support system looks different. Thus, what defines ‘community’ for me may not at all resemble your idea of community. We do, however,  share a common need for a community of some sort. We cannot survive without it. Sometimes our community can be as small as one other caring person who sees us through a particularly tough, but very private time. At other times, we need the support of a much broader group of people.

seeking support

Ironically, many of us believe that we should be able to cope with life’s challenges on our own. We hesitate to look for help or seek group support.

community of mothers

That was true for me through many of the earlier years of caring for my children with special needs. It wasn’t that I didn’t know the value of community. In fact, I totally immersed myself in the community of La Leche League, an international association of breastfeeding mothers.  We supported one another by gathering together and sharing information via phone calls, letters, books, and a formal newsletter.

Within that group my awareness of how important peer support could be grew and solidified. Many of the mothers I knew in LLL would never have been able to breastfeed without the help of the group. Others would have felt isolated by their choice to breastfeed at a time when most babies were bottle fed. Instead, they found comradery and a sense of purpose.

without community support

Yet, this dependence on community did not, for me, carry over into coping with the multiple challenges I encountered as I tried to provide the best life possible for my two children with increasingly serious intellectual disabilities. I never sought out a support group of other parents with the same challenges. In that endeavor, for reasons I cannot explain, I felt compelled to handle my struggles on my own. I did my best to present to the world a picture of a mother who had it “all together.” Yet, every day the weight of my responsibilities sunk my soul in a sea of overwhelming despair.

community finds me

I did not drown, however, because even though I didn’t seek community, it found me and saved me from isolation and alienation. At first, those who reached out did not have children with special needs but all the same, they empathized with me because every parent has struggles and times they cannot cope. Even when I didn’t ask for help, they offered it because in the real world people have no choice. We are compelled to build community because we are survivors.

two-mother community

So many people gifted me in this way along the way, it would be impossible to name them all, but some folks stand out because they threw a lifeline at a time I might have otherwise disappeared below the raging waters.

First in line are the many young women who took time out of their own life to join our family as second mothers to my children. They made it literally possible for me to get through the day without collapsing. Beyond that, as strong young women not afraid to take on the hard task of caring for children with intellectual disabilities and seizures while at the same time they pursued their own important goals, they provided a myriad of role models for my daughters as they grew up. My heart sings today because several of those women now mothers, even grandmothers, themselves remain in touch with me.

lessons in community

Although our middle daughters, Betsy and Carrie, did not have to cope with intellectual disabilities, they did have the challenge of growing up in a family with siblings with special needs.  My openness to the help of these young women showed them that asking for help is okay, a valuable lifelong lesson.  I have seen as they grew into capable women that they not only know how to ask for help when they need it but they are also very attuned to helping others when they see those people struggling.

neighborhood community

Neither my wonderful mother’s helpers nor I would have thrived as well as we did if we had not lived in the wonderfully tight-knit neighborhood, the Seminary Townhouse Association. Within the heart of Chicago, this enclave of fifty-two homes functioned like a small village. We knew all our neighbors and they knew us.

The neighborhood had long-standing traditions of group festivities that included a bike parade and a talent show. Neighbors welcomed our entire family at these gatherings. These gentle folks understood Kristin and Johnny’s special needs and accommodated them without a fuss. The alleys of the association were more like village streets and in the center of our enclave was a huge green.

Up and down the alleys and over the green, children of all ages played together every day at every hour.  Mothers gathered on porches with mugs of coffee to watch the youngest kids. Jay’s walk every evening from the “L” stop at Fullerton Avenue to our home at the opposite corner of the complex often took him a half-hour because he chatted with almost all the neighbors over their back fences. Only in retrospect, I am able to truly appreciate the emotional protection living in the “Seminary” cocoon afforded me.

supporting the community

Being a part of such a strong community not only created an ongoing sense of support for me, it also made it possible for me to provide support for others. I didn’t need to always be the needy one. I could care for a neighbor’s child after school. Providing meals for a sick neighbor was an ongoing mission for me.

Being a part of the committees that planned our group events let me use my creative and organizational skills. In La Leche League I helped to plan and direct their twenty-fifth-anniversary convention. Because I could see how important these contributions were, they enhanced my sense of my own value at a time when our struggles to find a remedy for Kristin and Johnny’s increasing medical needs had hit a brick wall.

most important community

As the years went by these opportunities built strengths and skills. For which we were grateful when we participated in our most important community, Kristin and Johnny’s adult home, Misericordia.

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You Need a Cosmic Graph

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An Author’s Idea of Hell

No one publishes the first draft of any piece of writing. At least, they shouldn’t. Not if the writer wants to be read.

Rewriting makes their work better. Important truths get honed. Images brighten and sharpen. Your ideas begin to POP off the page. Rewriting is also the author’s hell!

if only this was it!

That first draft – the vomit draft – it just spills out. Sure, it’s challenging work sitting down at the computer day after day, mining your memory and your research for the information you need. Then constructing those thoughts and facts into a literate narrative. But it’s honest work – like solving math problems. Simple. You put in the effort. You spend the time. You get results. But for the solution of the problem to mean anything, people need to be able to use the answer to solve concrete problems, not just abstract mathematical ones.

there’s a problem?

Even before we come to the solution, in fact, we need to identify the problem. That’s where a memoir must begin, and it is most likely not where the vomit draft begins. As an example, my draft begins with s school director calling Jay and me home from a Florida vacation to manage a family emergency. Nowhere in that first chapter do I identify the seriousness of the challenges facing our family. Nor do I let the reader know what a rare thing it was that we were on a vacation on our own. I simply started with an interesting scene (at least to me), but I don’t really name the problem. I don’t identify what is at stake.

In the final stages of editing my memoir, I need to become relentless. That will require four to five rewrites. Each time the argument will be stronger and the universal appeal more engrossing. By the end, useless adjectives and adverbs, overly long sentences, and awkward phrasing should be gone.

razzle-dazzle

Those are, however, the last parts of this memoir-writing journey. Long before I arrive at that point, I must reconstruct the overall project, break down the “vomit draft,” mine it for its best parts, lay them out like a deck of cards, choose the best, and rearrange them for the best impact. One card must be a dazzling opening scene that leads immediately to the next one, but also ultimately to the final scene of the book.

a cosmic graft

Close on the heels of this opener needs to come, what Marian Roach Smith calls my “Cosmic Graph.” This is the moment where I, as a writer, pan back from the moment like a camera pulling off into the sky. This must show up by the fourth paragraph of the first chapter. It contains four elements: what the memoir is about, what’s at stake, what’s up in the air, and what values I need to learn or acquire.

I try and try to do this, but conciseness eludes. Wordiness dogs me. But without a Cosmic Graph, I cannot chart my way through the morass of material I have accumulated. Still, my star vision blurs.

adjusting the telescope

Help, however, is on the horizon. I signed up for and took Roach-Smith’s “Constructing Your Memoir” class. What I learned there helped blow away the clouds that obscured my vision. It turned out I had used the wrong lens. My focus was out of kilter, but I didn’t yet know how to use the telescope. The class gave me more of the skills I needed. A new beginning and a new ending for my story emerged. I began to lay the cards out in patterns that worked together.

it’s only just begun

Piles of cards remain in the unshuffled deck, but increasingly of them are making their way either to the recycle bin or their deserved place in the structure of the memoir. The next blog post should be able to let you know if I’ve discovered my Cosmic Graph. But I’m paying attention to Roach-Smith’s warning that I may have to rewrite the introduction over and over as the ending unfolds itself. In the words of my dear friends the VanderVoorts, “We’ll know more later.”

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Dylan: Nothing’s That Easy

Dylan: Part 3, “Nothing’s That Easy”

A few minutes after Dylan’s Sunday school class began, Bro-Bob stuck his head into the classroom door. Their teacher, Miss Anne turned, smiled at him, and nodded.  She came up to the table where Dylan was coloring a picture of Jesus as the Good Shepherd.  “Reverend Pilcher would like to speak with you.”

Dylan could only stare at Bro-Bob.  Fear held him in his seat.  He was in big trouble, he knew it. Yet, the big guy’s face lit up with a grin and he tipped his head over his shoulder in the direction of the hall.  Around him, the other students didn’t seem to notice. Finally, Dylan jumped up and followed the minister down the hall. Bro-Bob turned to him, “How about if we go up to the dining room.  The ladies are getting after-services hospitality ready. You and I could have first pick of the doughnuts.  Dylan’s stomach twisted into knots. He loved donuts, but right now he didn’t think he could swallow even the best of them.

In the cafeteria, he couldn’t focus on the array of pastries. Instead of looking delicious, they smelled sickening sweet, not the least bit appetizing

“Go ahead, choose as many as you want,” Bro-Bob urged. When Dylan didn’t move, he asked, “Aren’t you hungry?”

“No. I mean yah, sue, but there’s so many different kinds I don’t know what to chose.”

“That’s never a problem for me,” said Bro-Bob.  “I always go straight for the jelly donuts with the icing on the top because I know they’re filled with yummy raspberry jam.”

“I like chocolate better than anything,” Dylan said, “but chocolate ones sometimes have nuts inside. I hate nuts.”

Bro-Bob reached over and handed Dylan a rich brown donut with chocolate sprinkles on top.  “No bad surprises inside this one.  Just plain chocolate through and through.”

He then poured himself coffee from the big stainless, steel urn, and Dylan took a paper cup of orange juice. Bro-Bob led them to a corner of the parish hall near the multi-colored window that showed Jesus surrounded by children.

As they sat down, Dylan’s palms got sweaty.  Was the minister going to kick him out of Sunday school? Tell him what an awful thing he’d done to his brother?  He took too big a bite of donut and chewed it, focusing on keeping his mouth shut.  It wasn’t easy.  His mouth was so dry the gooey topping stuck to the roof of it. He grabbed his juice and gulped it down. That made him choke and cough. Bro-Bob took the glass from his hands and gently patted his back. Dylan felt his whole face heat up.

Before he could stop himself, he blurted out, “Why did you want to talk to me?”

“Well, it’s part of my job here at Three Crosses to get to know you, seeing as the children of the parish are my special ministry.”

Oh, there was that word was again.

“What do you mean ‘special’?”

“It means while God called me to serve all His people. In this time and this place, it is my particular mission to minister to the children of Three Crosses.”

“So special means particular?”

 

“Sometimes. Special is one of those words it’s hard to pin down.” Bro-Bob took a sip of coffee and put his cup down, “I bet you wonder about that word a lot, don’t you?”

“Why do you think that?  Did somebody say something about me to you?”

“Yes, I’ve heard a lot of good things about you.” Bro-Bob took a bite of his donut and jelly oozed down his chin.

Dylan watched while he wiped it off, feeling suspicious and confused.  Wasn’t this about the family picture he had drawn, about how he’d made Nick so mad?  Not knowing what to say, he knocked some sprinkles off his donut and licked them off his finger.

Instead of talking about Nick, Bro-Bob nodded quietly.  “Before I tell you all the fine things your teachers have told me about you, I want to tell you a story about me.”

Dylan took a careful bite of donut.

The minister pulled his wallet out of his back pocket and slid a photograph out of a slot inside. “My story starts with a picture.”

He held it out and Dylan saw a tall, chubby guy who looked something like the minister.  But he had curlier hair and lots of freckles, more than Dylan had ever seen on a grown-up. “Is that your brother?”

“Yep, that’s my big brother Edward.”

Big brother? Dylan looked again.  The man in the picture couldn’t be older than Bro-Bob. He looked like a teenager. “Is this an old picture?” he asked.

“No, I took that photo last month.”

Dylan stared again at the photo.

“You think he looks a lot younger than me, right?”

“Well, yeah, sort of.”

“That’s because in many ways Edward stayed very young. He has trouble learning and with knowing how to act around people. When he was little, my family didn’t know why he wasn’t learning things or why he didn’t respond in typical ways.  Now we know he has developmental disability called Autism Spectrum Disorder.”

“What is that exactly?”

Bro-Bob sighed heavily. “The thing is it’s very different from person to person. It takes time and involvement to understand these kids. It’s something we can talk about as we get to know each other.”

Light exploded in Dylan’s head.  “People say that Edward’s special, don’t they?”

“You got it. My mom has a poem she hung up in his room at home.  It’s called “Heaven’s Special Child.”

“I thought you wanted to talk to me about what I did to Nick in Sunday School last week?”

“You’re right, of course. Paster Adams thought I might be a good one to handle this ‘special’ ruckus” Bro-Bob winked at him, “given that you and I face similar sets of challenges at home.”

Dylan’s stomach clenched, “Like what?”

“For instance, the crazy word, “special.” Why do people call kids like Nick and Edward “special?” just because they have developmental disabilities?”

Dylan’s head bobbed up and down, “Right. It’s weird.”

“I agree.  According to the dictionary, special means ‘better, greater, or otherwise different from what is usual.’ That’s so vague it’s no help.  After all God made each of us uniquely ourselves. We’re all ‘different from what is usual.’”

“So why does everybody make a big deal over anything Nicholas does, but expect me to do everything perfectly.”

“It probably feels like that a lot of the time, but my guess is your parents and teachers really only expect each of you to do your own personal best.”

“I am trying.  They should know that.”

“You’re right.  If you feel like it’s unfair, it’s because it really is in a way. The things you achieve match well with the hopes and goals that your parents have for you. When life goes the way we expect it to go, we tend not to notice that – sort of like, we don’t get up every morning and say, “Hey, the sun rose today.” On the other hand, when something happens that’s much better than we expected, say the sunrise is especially spectacular, we stop and to “Wow!” It’s sort of like that with Nick. When he was born with Down Syndrome, your parents didn’t know what to expect. They knew he couldn’t achieve everything a kid without developmental issues could, but didn’t have any idea what he might be able to do. So, now when Nick does really well, it’s like an exceptional sunrise. It’s a wonderful surprise that makes them go “Wow!”

Dylan felt a shiver raise the hairs on his neck. He remembered his grandmother looking at Nick and whispering, “I thought he’d die young.  That had made Dylan furious. But now he asked, “They’re just happy he’s alive, right?”

Bro-Bob’s chin jerked up and his eyebrow pulled together. “Every parent is, of course, grateful for the gift of life for their child, but they also want each child to have a life worth living. Just like you and me, Edward and Nick need to accomplish goals that make them feel good about themselves.

“Nick sure does get happy bringing home those art projects.”

“And he has a right to be. Creating them was much harder for Nick than you or I could ever imagine.”

Dylan chewed on his lower lip. It sound right somehow. Yet…

“Still, it doesn’t seem fair to you, does it?” Bro-Bob said. “Seems like Nick gets an easy ride while you have to work hard.”

Dylan looked up and examined the minister’s face.  It creeped him out when grownups knew what you were thinking. It was like they had some superpower that went along with being bigger.

Bro-Bob smiled.  “I didn’t read your thoughts.  No one can read your thoughts. Whatever is in your head is your own and can only be known by other people if you actually tell them. Otherwise, we’re guessing.”

“But how come you knew exactly what I was thinking?” Dylan asked.

 

Part 4:

Nobody’s “Normal”

 

“Well,” Bro-Bob said, “It’s what I thought when I was your age. Grownups were always telling me that I had ‘to make allowances’ for Edward. I hated that.”

“So, you kinda guessed I was thinking the same thing?”

“Right. But I couldn’t be sure. It could be different for you.”

“What do you mean?”

“That not no one, not even people that know us well, can guess what’s in our heads. Just because we both have brothers with learning challenges doesn’t mean we feel or think the same way about it.”

“That sounds complicated.”

Bro-Bob’s deep laugh came right up from his belly. “You’re not making it easy on me, kid. Let me try an example. Do you ever get car sick?”

What did that have to do with anything, Dylan wondered. But he’d better answer. “Nah, I love riding in the car.  My mom does, though.  That’s why Dad has to drive me and Nick everywhere.”

“Right on. Same experience – same car ride. One person feels like upchucking, the person right next to her is just having a pleasant ride.”

“But what’s that got to do with me and Nick?”

“Just that some kids have a harder time dealing with sibs with disabilities than other kids.  Just because I have a brother with autism doesn’t mean I get what it’s like for you and Nick.”

Bro-Bob leaned back. Dylan nodded. “When we were littler, it didn’t bother me as much.  Nick was pretty good at playing with the other kids – just went along with everyone, you know.”

“Now it’s harder?”

Dylan’s whole body stiffened. What could he say? How could he explain? He bit his lower lip and blurted out. “A lot of times Nick really can’t keep. We can’t always include him. I feel bad. He looks sad. It’s not my fault, though. I can’t fix it.”

Bro-Bob’s hand fell heavily on his shoulder. “These years will be toughest for both of you. Everything about school and sports is getting harder for Nick at the same time it’s getting easier for you. You’re walking a tight rope and balancing is scary.”

“You’re right. It is. Can’t Mom and Dad see that?”

“I think they do.  That’s why they make a big deal when Nick does something well. They’re trying to keep his world right side up.”

“But what about me?”

“You’re not going to like it, but I have to be honest with you, Dylan. Nick’s not the only kid in your family who has to grow up differently from other kids. You do too.”

“But I’m normal!”

“I might like to debate that word sometime, but right now I want to help you stick out your chin, put your shoulders back, and face reality. Nick with all his extraordinary challenges is your brother. He’s your family. That means you are also different than most kids.

“That’s it, that’s all I can do – just face it, just tough it out?”

The big man smiled softly and shook his head. “I’m willing to bet it’s not all ‘tough.’ Nick has gifts that he brings to this world, gifts he shares with you. I’d like you to make an effort to notice those. We can talk about them the next time we meet.”

“Nothing’s good about having Nick for my brother.”

“Prove it to me then. Really try to see the good in Nick.  If you can’t find it, you can tell me that when I see you next Sunday.”

Dylan felt a little trapped.  “Okay, I’ll try.  I’m not sure I’ll find much, though.”

That hearty laugh again. “I think you’ll surprise yourself,” the pastor said.

Part 4: “Nobody’s Normal”

Monday at lunch as Dylan and Harley compared the amount of jelly on each of their sandwiches, Harley’s big brother George came along and slammed the back of Harley’s head. George didn’t hurt Harley but did call him “Dickhead” which made all a bunch of fifth-grade guys walk away snickering.  Harley scrunched up his whole face in fury but just hunched his shoulders over his lunch. When his brother was out of earshot, he said, “I wish I could get back at him, but my parents would be mad at me cuz they never see all the stuff he does to me.”

After school, Dylan thought about Harley and George all the way home. While he gobbled down the cheese chunks and apple slices Mom put out for them, he pulled a piece of paper from his school bag and wrote, “Nick never hits me for no reason and never calls me rude names.” As he finished, he felt his mom standing behind him. He swung around just in time to see her smile as she ducked for cover.

On Tuesday evening, Grandpa came to dinner. Afterward, he and Nick took turns playing checkers with their grandfather. Like always Grandpa let Nick win. That usually made Dylan mad because he didn’t think it was fair. Grandpa often beat him at games and never let him win. But that night he beat Grandpa fair and square. He saw how proud that made Grandpa and it felt good.

By Sunday Dylan had five things to tell Bro-Bob. Five, wow! Maybe things weren’t as unfair as he thought.

Once he and the pastor settled down with their donuts, Dylan handed over his list. He didn’t take a single bite. His eyes never left Bro-Bob’s silently moving lips as the big guy read.

He knew the list by heart and could almost hear the words aloud.

  1. Nick never hits me just to be mean or call me bad names like some other big brothers.
  2. I get to read to Grandpa, something Nick might be doing if he didn’t have reading problems.
  3. Nick is happy to play board games with me even though I don’t let him win like Grandpa does.
  4. Mom is so worried about Nick getting the right foods, she never nags me about what I’m eating.
  5. Nick tells me all the time that he loves me and he really means it.  I used to think this was embarrassing, but now I realize it’s a good thing.

 

Dylan put down the donut which was melting in his sweaty palms. “Is it too short?”

The pastor took a big bite of his jelly donut without answering and reread the list while he wiped the jelly off his chin. “It’s a good list. Short or long isn’t the point.  You made the effort to look at things in a new way. That’s what counts.”

“Are they the right answers?”

“There aren’t right or wrong answers, Dylan, just answers that help us deal with our challenges or ones that don’t.”

Dylan smiled. “I should have added that I can always talk Nick into walking our dog for me when it’s my turn.”

Bro-Bob smiled right back.  “Look at that. You’ve made a habit of noticing more good things about your brother.”

“But I still wish sometimes that he wasn’t my brother.”

“I get it. I felt about Edward that way sometimes.”

“Really?”

Bro-Bob crossed his finger across his big chest, “Absolutely, did. Lot of times.  I just wanted our family to be normal.”

“You mean like other families, right?”

“Yep. But there’s no such thing.  All families are unique.”

“That doesn’t sound right. Somethings must be ‘normal’.”

“Not really, Dylan.  It’s a word that’s misused way too much.  It’s really an idea that only works for arithmetic; it’s not a good way to describe human beings.”

“But people say it all the time.”

Bro-Bob pulled his bushy eyebrows tightly down across the bridge of his nose. “So, they do, but that doesn’t make it true. I think you’re smart enough to get it if I give you an example.”

Dylan didn’t feel that sure, but he said, “Okay.”

“The norm means the average.  For instance, if you have 100 boys and you measure how tall each of them is, add that number together, and divide the sum by 100, you get their ‘average’ height – or the norm.  But that doesn’t mean that any one of those boys is actually that tall.”

 

“So, you’re saying we can’t say one kid is ‘normal’ and another isn’t because we can’t measure them?”

“Not exactly, but I like that way of putting it.  People come up with all kinds of tests for measuring kids and grown-ups, but it’s true that those tests aren’t all that reliable.  Certainly not like measuring height.”

It was great that Bro-Bob talked with him just like they were friends. “Can we do this again?” he asked.

The big man nodded. “Anytime. If something is bothering you and you feel like you need a good listener, tell your parents you’d like to meet with me.  They’ll arrange it.”

That surprised Dylan. “Did they know we’d be meeting today?”

“Yes, Miss Anne suggested it to them. She and I have been friends since we were kids so it came to her that you and I had an important connection.”

People did notice him. They did care.  They didn’t fuss over Dylan like they did Nick, but his parents were watching out for him just the same.

“ I want to try to show my parents that I can work at be a good brother to Nick.”

“It sounds to me like he’s always had a great brother in you. Just remember there’ll still be times he annoys you and you wish he lived on the moon. That’s okay, too. I’m sure he’d be happy for any extra time you want to spend with him.”

Dylan looked down at his unfinished donut.  Maybe he’d take it home and share it with Nick. He wrapped it carefully in his napkin and stood to leave. “Yah, I know. See you around, Bro-Bob.”

“See you around, Dylan.” The pastor struck out his hand. Dylan like the strong firm feel of the handshake. Like they had a pact. They had each other’s back. That made Dylan feel very special!