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

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.

 

 

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.

Exuberant play
Photo by Artem Kniaz

Christmas: Lost & Found

Our 2021 Christmas tree
Best Laid Plans . . .

A holiday-themed blog post was the last thing on my mind when I planned my post for this week.

In keeping with my blogging premise for this year, I had intended this week’s post to continue chronicling my journey toward writing a memoir. In fact, this would have been the triumphal post in which I announced that I had finished a complete draft of the memoir after five separate attempts.

Versions one through four next got past ten chapters, but now I had finally pushed through to the end of the narrative. Yes, I would admit, the really challenging work came next – “Killing my darlings,” the dread of every writer, but a particular horror for memoirists. Her “darlings” are real people and the way things “truly happened.” Unfortunately, that by itself does not justify putting them in a memoir. Time to edit. Now, however, I had an actual document to edit.

This time, last year

Before I could begin that worthwhile endeavor, however, our family Christmas fell apart. It feels so much worse than last year. For months before it arrived, we knew that Christmas, 2020, would be a “no show.”  As elders, isolated from the world at large and our family, in particular, my husband and I convinced ourselves that Christmas for just the two of us could be “romantic.” We lit the fireplace, dimmed the lights, and exchanged gifts (okay, I gave him a gift; Jay is not that good at gift-giving and usually relies on the kids to fill up my stocking.).

At mid-morning, we tuned in to the Portal and had an “online” Christmas exchange with our children and grandchildren. We felt grateful for the technology that brought their faces and voices to us – if not their presence. We then settled down to watch “Mary Poppins (the original one) on television, a movie we had first viewed on our honeymoon. As we turned out the lights that night, we congratulated ourselves on making the best we could of an unbelievably tough situation and went to bed convinced that Christmas, 2021 would be a much better and more traditional experience.

deja vu, all over again

It should have been, but it was not. Our daughter Betsy and her family arrived in Portland from Boston a week ago Monday to join her sister Carrie’s family as well as my husband and me for a week of Christmas celebrating. A small cloud hung over them as they arrived. Our grandson Bryce had only just found out he had been exposed to Covid-19 the night before.

Our daughters immediately canceled plans for a full family gathering until Bryce could be tested three days after exposure. We all were sure he would be negative, but the theme of “keep the elders safe” prevailed. Our certainty was ill-founded. Bryce did, indeed, contract Covid. He had to isolate himself from the entire family. Even worse, because they had all been with him until his test, our daughters, sons-in-law, and granddaughter now felt compelled to avoid contact with us.

the breaking point

To add a cherry to this unsavory sundae, they also begged us not to go to church. Being able, this Advent to celebrate the sacred season once again with the community of faith had been a boundless joy. Now, once again, we must remain at home even though our parish would be celebrating three Christmas Eve masses. Isolation is a terrible scourge for seniors in our society during the best of times. During this pandemic, it has wracked havoc with our mental and emotional well-being to the breaking point.

In August, Jay and I lost his brother to the pandemic and could not at that time have a memorial service. Now once again we were losing the rituals and traditions that sustained us. It was hard to find a reason for rejoicing. But God did not abandon us. When I sat down to write this post, Misericordia, the home that cared so well for our disabled children for years, sent us a message.

o come, o come, emmanuel!

Father Jack’s would have Christmas Eve Mass at the Home broadcast that evening. Jay and I could join an important part of our family, the folks at Misericordia, to celebrate the essence of Christmas, the birth of Jesus, the coming of light and hope into darkness, a light that shines as brightly tonight as it did over 2,000 years ago.

“Any one thinking of the Holy Child as born in December would mean by it exactly what we mean by it; that Christ is not merely a summer sun of the prosperous but a winter fire for the unfortunate.”

The New Jerusalem, Ch. 5https://www.churchpop.com/2014/12/03/g-k-chesterton-on-christmas/

jesus christ figurine
Photo by Jeswin Thomas on Pexels.com

The Notion of “Fixes” and “Cures”

Together
What is normal?

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

Kristy dressed up with watering can
Kristy at her most beguiling

Make Them Pop Off the Page

Johnny thinks a sculpture is a fort.
keeping a promise

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.”

Ellen noted that this is how she was able to bring clarity to her own memoir, Seven Springs. https://ellenblumbarish.com/tag/seven-springs/

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

Kristy with rag doll
The older Kristy got, the bigger her rag dolls became.

Little Boy Lost

Rapid transit Chicago
The same, yet different

“Your memoir stories all seem to focus on Kristy,” a reader commented recently.  She then asked, “Did Johnny have the same disorder as your daughter?”

There is no straightforward answer to that question.  It’s not like answering, “Did both children have the chickenpox?” There were many ways that assault on Kristy’s brain presented itself that resembled symptoms that Johnny had as well. Frequent grand mal seizures was one and developmental delay was another. Yet, there the similarities stop. They had such different personalities that at times it almost seemed like they had two completely different syndromes.

Recently, I shared a Johnny story with a group of fellow memoir writers. It will illustrate those differences. Maybe it will help other readers understand why I struggle so much to give an honest account of our life together.

***

no time between crises

Kristy and I had. just returned from an appointment with her physical therapist.  I pulled our minivan into the parking space behind our Chicago rowhouse and before I’d even turned off the engine, my thirteen-year-old daughter Betsy, her red braids flying behind her, came running down the back-porch steps, “We can’t find Johnny,” she shouted.

My heart sank into my gut.

Well, crisis or not, I couldn’t just let Kristy sit in the car. “Help me get your sister into the house.  Have you searched the whole house?”

“Yes. Twice.” She screeched. “We looked everywhere, even in the clothes chute.”

“What about the piano top?” It wouldn’t be unlike him. “Where’s Carrie?”

“She’s calling neighbors,” Betsy said as she helped me ease her older sister into her wheelchair. At the back door, I forced myself to focus on getting Kristy and her chair down the five steps to our basement rec room.

first things first

As I wheeled her up to the Formica table at a diner-style booth in the basement, Kristy, oblivious to the panic around her, pronounced, “I’m hungry.” I glanced at the TV. Its digital clock read 1:29. Kristy had to eat. I couldn’t risk her having a seizure right now. We had to find Johnny.

“When did you miss Johnny?”

“About twenty minutes ago.”

“He can’t have gotten far.  Go down the alley and check people’s yards? I’ll get Kristy something to eat.”

“Should we call the police?”

“Oh, my God, I hope not. Let’s wait a bit.”

I fixed Kristy a quick peanut butter sandwich and a glass of milk and made sure her chair was securely braked.

I found fifteen-year-old Carrie sitting on the rug in the living room, her long wavy hair draped over her knees. The telephone cord straggled from the far wall and into her lap.  “Thank you,” she muttered, “that’s so good of you.  Yes, please call right away if you see him.” She looked up eyes wide and chewing her lips. “That was Louisa McPharlin.”

I nodded. It made sense to check with Louisa. Hers was the last house before the “L” tracks.

a false sense of security

Our home was part of a community enclosed by wrought-iron fencing with several heavy iron gates at various entrances.  If Johnny’s wandering kept him within the borders of those fences, someone who knew him would spot him. The gates, however, were never locked or even closed.

Although ten years old, Johnny processed the world like a two-year-old. Outside the gates he would encounter busy city streets, dozens of strangers, coming and going from the elevated train station and from buys commercial Lincoln Avenue. Crowds of DePaul University students also hustled along those sidewalks on their way to class. In the midst of so many people, Johnny could disappear, or even more horrifying a predator might spot him.  Like every mom, I read the stories of children disappearing and then put them quickly out of my mind. Now they all came rushing back at me.

holding on to hope

Carrie didn’t find a single person who had seen him. Betsy hadn’t returned yet. I let myself hope that she’d found him. Johnny’s gait was at best a slow shamble. Bringing him home could take her a while. As frightened as I was, I knew that wherever Johnny was he wouldn’t be afraid. Nothing had ever scared him. He often laughed loudly and long while sleeping. I claimed that he was dreaming of monsters and found them hysterically funny. But laughter couldn’t protect him now.

Bringgg! The front doorbell!  Carrie and I tripped over each other as we ran for the front door. Quicker than me, she flung open the heavy wooden door. There stood a huge, uniformed policeman with a grin on his face and his hand on Johnny’s shoulder.  When I lurched forward, he held up a restraining brown hand. He looked down at Johnny and gestured toward me, “Who is this?”

“Mommy,” Johnny grinned. Then added, “Bathroom.”  That galvanized me into action when I might have otherwise been too stunned to even speak.

“Carrie, take your brother to the powder room,” I directed her and then stammered, “Where did you find him? How did you know where to bring him?”

saints and good samaritans

“A kind woman noticed him lingering outside the De Paul Bookstore. She signaled me in my car. Then she pointed him out and said, “He looks big enough to be on his own, but something’s not quite right.”

“But the bookstore is across Fullerton Boulevard,” I exclaimed. “How could he cross that busy street on his own?”

“Well, we don’t know, but he did. The lady spotted him trying to get into the bookstore, but he couldn’t figure out where the door was.”

I breathed a quick thank you prayer to St. George, the patron saint of books. Johnny, like the saint, was crazy for books. George, it seemed had spread his wings over my son. “Johnny can’t pass up a book.  Otherwise, he might have wandered on,” I told the officer.

His big head nodded. “So, my partner and me tried to talk to him. He just smiled a sloppy grin. Saw the lady was right. So, we were going to take him the station when he pops up, ‘832 Belden.’”

I says, “That where you live? He says ‘My house.’ So, here we are.”

“We worked hard to teach him that but weren’t sure he’d really understood.  He lives in his own world most of the time.”

“Yeah, I see that.  He’s been talking about Grover Monster most of the time.”

My fear had left me weak. Now relief drained what was left of my energy. “Thank you so much. I wish I could thank the woman who found him.”

“She didn’t want to give us her name, just seemed relieved to hand over the problem.”

and the day goes on

Made sense to me. Sometimes, I wished I could just “hand over the problem.”

“Sorry to say this, ma’m,” the officer said, “But you need to keep a closer eye on your son. Maybe you should think about installing alarms on the doors.”

He had a point, but I didn’t want to turn my home into a prison. I looked straight into his deep brown eyes, “I’ll talk that over with my husband.  Right now, I’d better get Johnny some lunch.”

He nodded and headed down the steps.

Saints
Photo by Fernando Santando

You Lived It Differently

Sign reading Proof
What Readers Deserve

In unpacking Tracy Seeley’s quote about the memoirist’s agreement with her reader, my September 20 blog post opened a discussion on what writers owe their audience. That essay, however, focused mostly on my promise to tell an emotionally true story and didn’t ponder Seeley’s warning that “other people in my book would tell the story differently.” My Ruby Slippers.

This week I’ll first address the issue of other people’s take on the same experience. I then tackle another obligation memoirists have to their readers — something has to happen in the narrative.

You Lived It Differently

But that’s not what happened.  Don’t you remember? It went like this.

These are the responses that I must brace myself to face if I go forth with this project of writing a memoir. I didn’t live my story alone. Dozens of persons accompanied me along the way from birth until I woke this morning. None of them, other memoirists have warned me, will remember the events and situations we shared in exactly the same way I do. In fact, their memories may be diametrically opposed to mine.

Because time travel is science fiction, we cannot revisit the moment in time of the remembered incident. Wrangling over who remembers more correctly is useless and can be harmful to an otherwise solid relationship. The better response writes, Marian Roach Smith,  the author of several memoirs, is to keep this phrase handy, “I realize that’s not the way it happened to you. It is, however, the way it happened to me.”

Memoir’s deep subjectivity

Saying this will help me and relatives or old friends who challenge my recollection to acknowledge the deep subjectivity of memoir. I invite others to tell the same story in their own way. Doing so lets them know I will honor their truth just as I hope they will honor mine. Wow! That’s an overwhelming declaration.  If it is only my truth, my version of the story, who else is going to care?  That’s a valid question.  Yet, subjectivity won’t invalidate the story.  Rather, only my deepest personal understanding of what I experienced and what I witnessed can possibly attract an audience.

required authenticity

If you read my words and you don’t find me there, you will stop reading. You are, after all, reading that book, that essay, or that blog post because you care about my point of view, about my take on things. Perhaps, you have known me for all the years I mothered Kristy and Johnny. Maybe you wondered, “How does she do it?”

Now, I’ve written a memoir.  Readers expect an honest account – not some Pollyanna perspective on parenting a child with special needs.  They don’t want hocus-pocus. Nitty-gritty holds their attention. If the real Jule is missing in action, if it sounds like someone else’s story, you won’t finish.  You are expecting to hear my voice.  I can only tell you what I remember about how it happened and how it felt.  If one of Kristy or Johnny’s sisters wants to say, “But, Mom, I remember…,” I’m happy for you to hear her tale.  She was there too.  She will bring her own brand to the narrative just I’m trying to bring mine.

Bringing my brand to the memoir is one primary responsibility I commit to. Another is telling a story in which something happens.

Something Has to Happen

It might seem obvious that readers expect something to happen in a story. That’s the nature of the story, isn’t it? It also is true that if a child is born, grows, becomes ill, becomes even more ill, and dies, “something” has happened. But that’s a biography, not a memoir. Poignant as such a story might be, it shouldn’t be published – at least, not in such a bare-bones fashion.

“Something has to happen” in the narrative means significant change takes place within the writer’s very soul.  In an important way, by the end of the tale, the protagonist is not the same person she was when the story began.  If she can’t weave a transformation into the fabric of her story, the writer probably shouldn’t be creating a “memoir.”

The elusive “something”

That raises lots of questions for me. What sort of evolution could readers be looking for? How do I show it?  I am not Saul, knocked off my horse on the way to Damascus, blinded, and converted to being a follower of a new faith. Fortunately for me and most other memoirists, a transcendent conversion isn’t necessary.  Less drama will do.  Yet, change must happen.

Sister Rosemary Connely, the director of Misericordia Home, often told the parents of the children in her care, “Not one of you chose to have a child with mental or physical handicaps. But because you have this child, you have accomplished things you never would have thought yourself capable of doing.  You are a better person than you would have been.”

not always for the better

She is right even though most of us would have settled for being a somewhat lesser person if it meant our children were more typical. Sister’s faith in us was touching. Simply being the parent of a child with disabilities doesn’t make you a better person. Sometimes the weight of the experience causes you to behave shamefully.  Simply giving birth to a child with serious challenges doesn’t automatically turn one into some kind of saint.  It can actually turn some people into devils.  But, I am convinced it does change parents in some way.  There is no remaining the same person you were before this child came into your life.

might i be different?

Thus, in writing a memoir about Kristy, Johnny, and me, I carry the obligation to discover and reveal how being their mother changed me.  Who am I today that I never would have been if I hadn’t been Kristy and Johnny’s mother? It’s a question anyone can ask themselves about all their committed relationships. For me, this year, it must be one that my memoir answers.

Johnny and Jay reading in the yard
So many days were quite wonderful! Johnny and Jay relax in our yard.

 

If I Had Known

Question mark by doorway
Be careful what you promise

In last week’s blog post, I promised that this week I would “bring you up to date on how far I’ve gotten so far with the memoir, examples of advice I’ve received, and the quandaries I face as I move forward.” The sentence makes me chuckle because, of course, I couldn’t possibly do all that in one short blog post.  Instead, I can share what I consider to be one of the important pieces of advice I found about writing a memoir: “Begin by asking yourself a lot of questions.”

don’t do this

This is not what I did. Rather, I just plunged in and started telling a story about a young couple who longed for a child but struggled with fertility issues.  Then page after page I recounted the days and years of their life as a family. No wonder my writing colleagues felt lost as they tried to find a theme and to keep up with dozens of characters. The manuscript was a roller-coaster ride up the peaks and down the valleys of our life.  Readers had to hang on for dear life because it never paused. I didn’t take time to reflect on the challenges or the joys for very long at all. And I kept how I might be feeling about what was happening completely to myself.  Did I even know then or now how I felt? I didn’t stop to find out.

After eighteen months of writing and submitting sections of the “memoir” to writing workshops for review and always hearing the same critique, I finally realized there was something fundamentally wrong. Kristy’s story remained as compelling as ever, but I had not yet imbued it with its true power.

now and then

I put aside writing narrative and took up asking myself questions. Many different guides to writing memoirs offered a myriad of possible questions I could ask myself.  I read several of these. The one that struck me right between the eyes was, “What do I know now that I didn’t know then?”

What I now know is the Kristy never had a chance.  The neurological disorder that eventually destroyed her resided deep inside her infant’s brain from the day she was born. As best I can understand and explain it, the force behind this disorder was a genetic anomaly. It was not carried on a gene she inherited from her father or from me. Rather shortly after conception genetic mutation, a so-called “de nova variant” caused her developmental trajectory to be unevenly and unpredictably stunted.

blissful(?) ignorance

I did not know any of this until Kristin was thirty-eight years old and most of the damage to her body and mind had already happened. During those thirty-eight years, my husband and I sought the best medical care we could for Kristy. We never let go of our hope that someday a medication would come along that could control her irretractable seizures. We firmly believed that if Kristy could stop seizing, she could regain some of her lost abilities and even start learning new ones.  That dream dimmed greatly as the years went by but never disappeared entirely – until 2007.

not a real answer

That year, genetic testing became available for her. The tests revealed the root cause of Kristy’s seizures and disabilities and why her brain had slowly atrophied. (Brain atrophy is a wasting away of brain cells, or more accurately, the loss of brain neurons and the connections between them that are essential for functioning properly.) EEG exams performed when she was young showed no damage, but the older she became the more these pockets of atrophy appeared.   By the time the doctors could give us this genetic analysis, Kristy was as helpless as an infant, dependent on others for all her needs. The diagnosis was, therefore, not a shock, but finally an answer.

willful naivete

Now when I ask again, “What do I know now that I didn’t know then?”, the question deepens into, “Would I have wanted to know then, what I know now?”  My only honest answer is “No.” Although it was hard to have our hopes dashed year after year, I wouldn’t want to give up the joy our beautiful, happy little girl brought us through the first twenty-five years of her life. If we had known how ultimately devastating the disorder would be, fears and forebodings would have tainted all those good times.  And we would have been helpless to stop the inevitable.  It was by far better to live each day, each year, as it came to us without any knowledge of its heartbreaking end.

through a mirror darkly

As I write the memoir, I will have to hold up a double mirror to my own inner thoughts, reflections, and feelings.  My readers need to fully understand all the optimism I held onto as a young mother, all the joy I got from being Kristy’s mom. Yet, the story must also carry my awareness of its tragic end.

“Life can only be understood backwards; but it must be lived forwards.”
― Søren Kierkegaard

Doorway opening out
Photo by Jan Tinneberg

 

A Memoir Is NOT about Me.

I almost quit blogging

When you write a blog you need to choose, according to the common wisdom, a topic about which you are passionate and upon which you have a great deal of expertise. For me, this narrows down to two subjects – one, my own life story, and two, love & committed relationships, my field of scholarly research and teaching.

A few years back I wrote a few sample blog posts upon the latter topic and submitted them for review to a small group of fellow writers. These colleagues, members of a Portland writer’s workshop strongly preferred the stories about my personal life to the essays on family life, love, romance, and marriage.

 everybody is an expert–at something

Other writers, they stressed, already commanded the stage on the topic of committed relationships. And, frankly, these commentators told me, those bloggers did a much better job of elucidating that field than I did. On the other hand, many of my short tales about my life as a wife, student, teacher, and mother were quirky, warm, and captivating.  Upon that subject, I was clearly the one and only expert.

So, following their advice, for two years I’ve devoted my blog, here on my website, “JuleWardWrites,” to vignettes of various moments in my life. Most of these stories focused on my time as a wife and mother, but a few reached back into my childhood. None have, however, examined my life since my daughter Kristy died in 2015.

blog posts as the “trailer”

That’s because while I’ve been writing the blog, I’ve also been working on a memoir. Through the memoir, I am trying to share with others the struggles, the failures, the mystery, and the moments of great joy that filled the forty-five years of my life I shared with Kristy. She was only nine months old when she experienced the first symptoms of what would prove to be an unpredictable, devastating neurological disorder. The scientists called it “Progressive myoclonic epilepsies/neurodegenerative encephalopathy,” but that is simply a description of what the patient suffers and not really an explanation of what causes the disorder. The known causes are many, but most of the time the cause is unknown. The disorder strikes like unseen, unheard lightning.

it just wasn’t working

I have submitted drafts of the memoir to writing colleagues for critique. And I hear familiar comments, not unlike those leveled against some of my blog essays. The blog posts, a friend claims, isn’t honest. “It only tells the good stuff.”  The memoir, fellow writers tell me, doesn’t dig deep enough into the narrator’s emotions.  It portrays a protagonist who always seems to be in control despite the complex challenges she faces.  And they don’t believe that could have been true. And they are right.

Last week, I read an interview with Rebekah Taussig, author of the new memoir new book, Sitting Pretty: The View from My Ordinary Resilient Disabled Body. Rebekah, paralyzed since toddlerhood, has already gained audience for her book through her Instagram account, Sitting_Pretty. The interviewer praised both the Instagram account and the book, a collection of essays, for the way they were able to create an intimacy with the reader.  One felt, she wrote, as though the memoirist had “hooked elbows” with you to walk you through her life.

come, walk with me

Reading the interview affirmed a resolve I had made earlier this week. Just nine days ago, one of the people I hold most dear in this world, my brother-in-law, Marty Ward, succumbed to Covid 19, despite being fully vaccinated. Marty had been quite healthy and had a long bucket list of grand adventures planned. People in his family usually have long lives. His totally unexpected death cracked my heart. It also jolted me awake to the fact that I could no longer dilly dally about writing my memoir.  Kristy deserves to be remembered.  Only I can tell her story.  I must get going.

Like Rebekah, I plan to take you with me. For the next year, the blog will take a new turn. It becomes the story of my journey into the depths of my heart and soul as I struggle to give an honest account of my years as Kristy’s mother.  This means it will include the challenges any writer faces such as dealing with critique, the hard work of rewriting, again and again, the difficult task of finding an agent, and the search for a publisher.

lots of questions, but also some answers

The blog will be full of questions that I’m hoping you’ll be willing to answer.  I am open to critique as well.  I don’t write simply for the positive feedback. Let me know what engages you and what leaves you cold. In return, I promise to share with you everything I learn about writing a memoir.  I believe you probably have a story to share.  Taking this walk with me might be the inspiration you need to sit down and begin that book you were always “going to write.”

September, the start of the school year and the month of my birthday, has always been a time of new beginnings for me. Next week, my first post of September will bring you up to date on where I am at this point. I’ll share examples of wisdom  I’ve culled and how that’s working out.

Let me know what you think about this new twist.

Jule and Kristy 1969
Kristy and Jule, Chicago, 1969

  1. You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better. ~Anne Lamott