With great glee, I announce the sling has come off and I’m typing again.
So, here’s the first issue of JuleWardWrites for the new year (if you are like me and your year begins when the first flowers pop their heads out of the grass.
Those stories inspired other to write to me with permission to share their own stories of their equally wonderful “Mis” experiences.
Many of the people who love Misericordia are those who volunteer there. Today one of them, Terry Baugh, tells you his story.
hearts and flour
“Misericordia held a warm place in my heart even before I heard about the Hearts and Flour Bakery. My friends, Barb and Dave, had undertaken a long and nearly impossible search to find a nurturing place for their son, Seth, to live. When he was accepted at “Les Mis” as they fondly refer to it, the search ended, and Barb moved to Chicago to be close to Seth. Visiting Barb in Chicago and volunteering at the bakery was a great opportunity for me to catch up with my friend and spend a week working hard and feeling great about every day.”
hairnet? apron? gloves? go!
Volunteering for the bakery at Misericordia was a satisfying experience in giving back for Terry. The bakery is a hub of activity, with experienced bakers and novices, like him. He volunteered in 2019 just before the holidays. Christmas music played in the background and staff and volunteers and residents cheerily greeted each other as new people arrived for their shifts. Got a hairnet or hat? Apron? Gloves? You are ready to go.
just like downtown
The organization of the bakery was–and is — amazing. Every step for baking, cutting, and packaging is well thought out. It was fun to package soda bread, operating a packaging machine just like the bakery downtown. Over the days, Terry was there, he worked on a lot of different stations, but he loved the brownies the most. Bakers mixed large batches of brownies, baked sheets of brownies, and finally flipped them to prepare for cutting into heart shapes. There is a proper technique to getting all the hearts you can out of a sheet and then evenly powdering them with a gentle tap on the sifter. Packaging is always part of the production cycle — stacking the brownies in boxes and sending them on their way to treat a lucky recipient. They are such a delicious and simple treat!
sister rock-star
Beyond all the baking tasks, Terry loved being at Misericordia and seeing the operation. “Sister Rosemary has rock-star status in my book.,” he claims. “The caring staff, the amazing facilities, and the meaningful ways of raising money that Sister Rosemary created to support this amazing facility is something to admire.”
working the line
Besides the unique operations of the bakery, Terry met some lovely people while “working the line”. Weekly regular volunteers, school groups, families whose children were at “Les Mis”, or had passed on, were there helping and sharing wonderful stories. And he loved visiting Seth’s house, his classroom, and meeting his friends and the residents who helped the bakery.
make giving easy
Take a hint from Terry, “if you are looking for a way to give back, a way to spend an extra afternoon or day a week, or a way to open your heart — consider volunteering at the “Les Mis” Hearts and Flour Bakery. They also make gift giving easy. Shop here! ”
For thirty years, our family shared the care of our two of our children, Kristin and Johnny, with Misericordia Home, a residential and learning center for persons with multiple developmental disabilities. Many treasured memories of our family’s time at Misericordia live in my heart, but the ones I remember best are times when its generosity of spirit lit up like a giant Christmas tree.
a giving heart
In 1985, when we took our son John for his first visit to the school, we shared a dinner with a friendly group of fellows in one of the Village Homes. At the end of dinner, one resident pushed back his chair. “I’d like to stay and have desert with you,” he said, “but it’s my night to volunteer at the homeless shelter.” His words solidified my trust that Johnny would find love and empathy among his new housemates.
heart big enough for the entire world
Some years later, the students at the Learning Center engaged in a geography program which focused deeply on one nation each year. Through their studies, they became aware of hunger in the world. This realization heightened the gratitude they felt for the abundance of care they received at Misericordia and motivated them to help those less favored. With their teachers’ help, they organized an on-campus “Walk for Hunger.” Family and friends pledged funds to support the walk.
please, stay off the grass
Johnny’s dad remembers that bright October day as though it happened last week. The residents, staff, and some parents gathered outside the Learning Center. Sister Rosemary gave a rousing opening talk–and then asked the participants to stay off the grass because landscapers had recently seeded the lawns.
the last shall be first
Johnny’s pace was a slow slouch in the best of times. So, his dad had stationed them at what he believed to be the end of the line. But no, at the end of her speech, Sister pointed out the direction of the walk. It put Jay and Johnny at the front! For a while Johnny set the pace, but then Sister broke ranks and walked on the grass to get around him! Soon, everyone followed suit. By the time father and son arrived back at the school’s gym, the organizers were putting away the refreshments. That didn’t matter, the spirit of joy and generosity of the day still lives in my husband’s stories, which he is willing to share with anyone who will listen.
Neither of us ever tires of telling the world how blessed we are to be a part of the Misericordia family.
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?”
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.”
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.
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.
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.
In her intense, impassioned, compelling memoir, Sitting Pretty, Rebekah Taussig, who has used a wheelchair for mobility since early childhood, tackles among other hard issues concerning disability, the notion of “fixes” and “cures.” She asks why we are so obsessed with fixing ourselves. She suggests, we ought to let ourselves be, take pride in our identity, be the self who is rather than struggle always to be a “better” version of who we are.
We can discover, she notes, that when we accept and dive deep into the unique challenges that every one of us lives with, we will also find in that same place joy and abundance. The rich conversation and dialogue that can follow taking this approach can lead us to a whole new way of seeing and understanding not just ourselves but the world.
looking for a “fix”
Tausig’s questions bit sharply into my memories. Had I wanted to “fix” Kristy and Johnny? Those children, my oldest and my youngest had lived their whole lives with physical and developmental challenges that required consistent care and supervision. Neither developed past the toddler stage although they both lived into middle age. Both had had hundreds of epileptic seizures. Wouldn’t it be natural for me to have wanted a different life for them? Who, in their right mind, would wish to give birth to a child with so many “problems?”
Yet, in Hausig’s perspective, Kristy and Johnny do not have to be seen as problematic. Those of us, who “pathologize and fix some bodies and accommodate others,” (pp. 74-79) present the true problem.
a really brave new world
I find myself swept up by Hausig’s vision, a world that was not full of roadblocks and bends, a world so full of wells and shady places that all find a place there. In that world, no one would construct a building that could not be easily navigated in a wheelchair. All schools would tailor their programs to the learning styles of the students who filled their classrooms, not some idealized “average” student. What she demands that we understand is that “average” just does not exist in the real world. Average is a theoretical mathematical mean as ethereal as the shape of a cloud.
medical magic?
At the same time, I must be honest and admit that I did wish that I could wave a magic wand and make Kristy and Johnny’s seizures go away. Was not that what we were after with all the different changes of anticonvulsant medications that the doctors prescribed, and we tried over the years. And that does not even count the time we kept poor three-year-old Johnny on an impossible ketogenic diet. He could not understand its purpose. I found myself wavering from its strictures and then blaming myself for his seizures. If I had been able to keep to the letter of the diet, would he have become seizure-free? Was getting rid of epilepsy worth losing my sanity? No, I cannot deny that I fell in line with the search for “fixes” and “cures.”
people are not math problems
Not all of that was wrong-headed. Seizures can be dangerous. They come on so suddenly that injury often follows. Usually, cuts and bruises are the worse that can happen, but once Kristy broke her collar bone. But behind the struggle to conquer the seizures was the hope that if we could stop the seizures then their brains could function more “normally.” Maybe then they could lead “normal” lives. Once again, I applied mathematical notions because that is what a “norm” is, to a human child.
parents love to dream
Let us face it, as expectant parents await the arrival of their new child, they most often dream of the future they will provide for the beloved little one. Most parents when asked what they most want for their children will say they want them to be happy. We have, however, measures for happiness and they do not include disability. They do include intelligence, achievement, love, beauty, and goodness. Most of all, even though we do not want to rush it, we do want our children to “grow up.” When that does not happen, the world feels out of kilter.
who are the grown-ups?
Yet, people with developmental disabilities do “grow-up.” They just do it differently. As parents, we must shift our meanings not “fix” our children. As a society, we can note as well that some children who have no apparent “disability” don’t seem to “grow-up” in the common sense of the word. They do not become financially independent. They never find a life’s work. They never partner successfully. Do we stop loving them? No. But we do often try to “fix” them. It often means the very happiness we wished for them becomes that less possible.
rethinking our culture
This brings me back to Tausig and the importance of her book. She is calling on us to rethink “some of the most deeply ingrained beliefs we carry as a culture.”
Can we do it? It is asking a lot. I, for one, am going to try. In my memoir, I will not hide how hard it sometimes was to meet my children’s needs. I will, however, point out that many of the challenges came from the roadblocks our culture placed in my way. I had to push those aside to enjoy the privilege of living with the unique, wonderful people who were my children – all of them.
“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” -Francis of Assisi
Last week’s blog post, “Memoir as Smorgasbord,” I promised to tell you the most enlightening moment of the memoir writing course I took this autumn from Ellen Blum-Barish.
two heads are better than one
Every class contributed immensely to expanding my understanding of memoir creation. All the discussions were lively, supportive, and inspirational. But the shining moment of the class for me was the one-on-one hour that Ellen spent with me. As a component of the course, Ellen scheduled a one-on-one hour with each student. She encouraged us to choose whatever aspect of writing we believed was giving us the most trouble, that we found the most discouraging.
I told Ellen I struggled with how much of my story of parenting two children with profound disabilities to share. The narrative covered so many years and so many different challenges as Kristy and Johnny’s needs and capabilities changed and shifted. The work felt encyclopedic. Where did I begin? Where did I end? What could I leave out and still be authentic?
caught in a maze
I knew my obstacles were not unique but did not see an effortless way through the maze. Ellen asked one question. That question turned out to be the key to the locked gates between me and a finished draft. “What,” she asked, “is your mission in writing this memoir? Are you hoping to inspire or help other parents of children with similar disabilities?”
“Absolutely not,” was my immediate response. “I can only tell what happened to us and how we muddled through. I can’t pretend to have the answers other parents might be seeking.”
seek your mission
“That’s totally valid,” she replied. “I completely understand, but there must be something driving you to tell this story. You need to be able to name that very clearly. That’s the only way you can discern the parts of the story that must be written.”
I knew why I wanted to write this memoir. But I had not thought of it as a “mission.” “Kristy and Johnny were such special kids,” I told her. “And I mean that in ways that go beyond their special needs. They were unique and wonderful, and they gifted the world with their presence. I do not want the people in our family to forget them. I’m writing this story so that their niece and nephew, cousins, and the many other folks in both our families and among our friends can remember them as the extraordinary human beings they were.”
there’s your focus
Ellen’s face crinkled in a big, bright smile. “Wow, that’s a mission for sure. It also definitely tells us where the focus of the memoir needs to be.”
“It does?” Her claim perplexed me. It did not sound like it limited the span of the story very much to me.
“Without a doubt,” Ellen stated, “You have to tell the stories that make them come alive. You need to make Kristy and Johnny pop off the pages of your memoir. Choose to tell the things about them that were unique and stood out. Let the reader really know them.”
still caught in overwhelm
“I see how this theme could be a good guide, but it still feels like a lot of material,” I objected.
“That where there’s a trick of the craft that comes in,” Ellen explained. “Limit yourself to a certain number of scenes – much like you were writing a play. Then choose the action that would bring those scenes alive.”
That work covers forty years of her life, yet she focuses on seven specific springs during those years to tell the whole story. I knew and loved Ellen’s book. Picturing how it laid out, I could envision tackling my own project in a comparable manner.”
mythic numbers
“Sometimes,” Ellen said, “certain numbers have a particular meaning for us spiritually and emotionally. Working within the confines of such a number can inspire and enlighten us.”
She advised me to sit with that notion and discover my number. Once I knew it, I could start working out what the “scenes” of my “play” might be.
This approach has galvanized me. I have plowed ahead – not creating scenes just yet but recording down all the best information I can about Kristy and Johnny. Once I have that in mind, I will let the contemplation begin. I’ll let the number emerge. When it happens, you will be among the first to hear about it.
“One of the most important things you can do on this earth is to let people know they are not alone.” ― Shannon L. Alder
The older Kristy got, the bigger her rag dolls became.
I announced in this space on August 30, that before the year is over I will complete my memoir. It’s an ambitious task because, in that narrative, I attempt to cover all the years I shared with my two extraordinary children, Kristin Margaret and John Brophy. That journey began on May 14, 1969, the day my Kristin was born, and ended on February 3, 2015, the day she died. Forty-five years.
Birth and death do not necessarily make satisfying beginnings or endings for a story. Life’s meaning is not in the coming and the going, but in what happened in between. Yet, there is so much! It all feels terribly important, but an impactful memoir needs to be succinct. A long, rambling narrative loses readers long before they learn the important things you need them to know.
looking for a life raft
By the time I had written halfway through the fifth version of my memoir, I knew I required serious help. I signed up for a writing class. Rather than a course on how to write a memoir, author/mentor Ellen Blum Barrish offered a “smorgasbord” of topics. Each was designed to help potential memoirists dig deep into their own inner experience. I wasn’t entirely certain that the class was what I needed, but I trusted Ellen and I couldn’t go it alone any longer.
What a good decision that was!
defining truth
The very first week, we dug into the conundrum of truth in memory. We dissected Amye Archer’s searing essay, “Writing Truth in Memoir,” in which she adjures writers to give up hidden agendas they uncover as they write. “It is more important to be honest than vengeful,” she warns us. We are not writing to make the reader “be on our side.” For our story to be visible to our readers, we have to pull the lens farther back than that.
Amye made me realize I had to watch out for my own hidden agendas. I wasn’t after revenge, but I did tend to “protect” my characters.
what is a family?
Week two’s topic really excited me. “Writing Family” was exactly what I was trying to do. I looked forward to hearing about the other writers’ struggles and triumphs with this topic. At first, the evening’s reading disappointed me. It wasn’t about “real” families. The essay poignantly recalled the writer’s early days in the funeral industry and how the personnel at the funeral home formed a close-knit and caring “family” so that they could better support the grieving families whom they served.
No, that wasn’t exactly what I hoped for. Yet, when we talked about all the different ways people form “family,” I began to see our story, mine, Kristy’s and Johnny’s, against a backdrop of a family that extended beyond biological connection.
No, not that funny
Our focus for the third week, “Writing Humor,” had me cringing. I have no idea how to be funny. When I was a professor I would hear students in other classes laughing uproariously and a sharp, green slice of envy stabbed me in the heart. My studies never laughed in my classroom. Maybe I should have been grateful, but I wasn’t. I took heart, therefore, that as our group discussed Amy Poehler’s “Take Your Licks,” a humor piece about a job she had as a teen, I found out I wasn’t the only one who didn’t find it funny.
I felt kind of sorry for Amy. After all, she is a comedian. She has to be funny to earn a living. I don’t. I gave up worrying up hope to entertain readers by showing them the funny side of my story – there wasn’t one.
writing loss
“Writing the Lost Loved One,” the theme of week four most likely was the one that made me sign up for the course. My memoir focused not on me, but on two beloved lost children. They say be careful what you wish for. The reading that Ellen chose for that week ripped my soul apart. I could hear Jaqueline Doyle’s voice cry out from her essay, “Dear Maddy,” “Talk to me, Maddy. Tell me what it was like. Rise up from the depths of twenty years in all your shadowy splendor. Tell me.”
We do that, those of us who have lost a loved one. We don’t want to let go, especially of someone yanked away from this world “before their time,” whatever that is. Doyle’s abrasive honesty made me question myself. Did I dare put the searing blaze of my own emotions into black and white and offer them as a sacrifice? Was, perhaps, my whole project a mistaken quest?
perspective can be everything
We examined writing about trauma in the fifth week of class. We read both a touching testament to the moment a woman realizes her marriage is over and a horrifying witness to the 9/11 attack on the Twin Towers. The latter, Brian Doyle’s “Leap,” might appear to be the more “traumatic.” After all, it depicts people jumping from window and hitting the pavement transformed into a “pink mist.” That is only one of many tragic images Brian presents.
Yet, we found ourselves equally engrossed in the pain of the woman in the first piece. Our assessment of the two different pieces reinforced my conviction that how well a writer crafts their tale can determine how well the story will grip their readers.
always more to learn
Every week of the class continued to build my understanding of what it means to write from the very core of one’s being. It was my one-on-one session with Ellen, however, that answered many of my most troubling questions about my memoir. She also gave me a whole new perspective from which to view my life. That tete a tete will be the topic of next week’s blog post.
Memoir isn’t the summary of a life; it’s a window into a life, very much like a photograph in its selective composition. It may look like a casual and even random calling up of bygone events. It’s not; it’s a deliberate construction. William Zinsser, in On Writing Well (2006; 30th Anniversary Edition)
