life balance - Jule Ward Writes

September 11, 2023September 10, 2023

What Am I Trying to Ignore?

“What am I trying to ignore?”

This is a question that Jane Friedman threw out on her blog, Electronic Speed, two years ago. (jf@janefriedman.com, Sat, Nov. 27, 2021) I wasn’t ready to deal with it, but knew I’d need to confront it before my memoir would ever make it into publication.

being overwhelmed?

Some close friends have read brief parts of the memoir. They sometimes say I I ignore how totally overwhelmed I felt as I coped with the challenges presented by two children with complex disabilities.

I ask, do I leave that reality out of the memoir or did I ignore it at the time? If I had let those challenges overwhelm me, could I have coped? If I couldn’t have coped, what would have happened to my children? Sometimes every parent asks themselves some version of that question.

not talented enough?

A more nagging concern is the fear that I’m ignoring, that I can not really pull off a successful memoir. It’s hard not to suspect my beloved husband, who tells me over and over how beautiful my writing is. After all, he is prejudiced in my favor-unlike the readers in my critique groups who minutely question details such as sentence construction, overuse of adverbs, improper period spacing, etc. But then I tell myself, their job is not to tell me what work is great. It’s letting me know how to improve. That only results from constructive critique.

story is too sad!

There’s the nagging doubt about the deep tragedy of our story. As a friend said, “It’s all so sad. I’m not sure people want to read about that.” She makes a good point, but readers will take on a tough narrative if it’s interestingly written. Nothing is all sweetness and light. Nor is parenting children with challenges all doom and gloom. I include plenty of light moments, like this one:

not always

One of the striking differences, I claim, between Kristy and Johnny is how much she loved to create works of art and how he refused to so much as pick up a crayon. Thus, one Friday afternoon upon entering Johnny’s apartment at Misericordia, I got the surprise of my life. There on the wall next to the TV hung a bright abstract, multi-colored, three-by-three framed painting, signed “John Ward.”

“Johnny couldn’t have painted that,” I challenged his caretaker.

“Oh, but he did.” She said, but giggled as she spoke.

“How did you possibly motivate him to paint anything, let alone such a complex piece?” I asked.

“Well, we wanted to hang a work of art by each guy in the apartment. All the other men were excited to take part, but every time we gave Johnny a paintbrush, he threw it on the ground. Then Sara got her brilliant idea. She spread an enormous piece of paper right where the brushes were landing. She handed him one brush after another, each with a different color. One by one they hit the floor, splashing colors in every direction. You can see the result is lively and almost looks purposeful.”

Staring at my son’s “creation,” I laughed so hard my sides were splitting. That was Johnny. Life was never dull with him around.

The above vignette is just one of the many charming stories the memoir includes. It’s not a simple tragedy, but also a triumph of love and joy over the worst that life can throw at us. https://julewardwrites.com/committed-relationships/the-notion-of-fixes-and-cures

no end to questions

But other questions mount up. Is it too long? Are the chapters balanced enough? I’ve revised it nine times. How can that not be enough?

So, what is the awful TRUTH that I’m really trying to ignore?

Friedman writes that what we are trying to ignore is usually a problem that won’t go away until we do something about it.

the truth

For me, it’s acknowledging that I’m finished writing. It’s time to work on moving the manuscript toward publication. Just thinking about the process daunts me. There are many avenues to publication, but despite the many paths, few debut authors actually find their books on the bookstore shelves.

Dwelling on that reality makes me hesitate to try. Why put so much energy into something that is sure to fail? Yet truer yet is that if I never work toward publication, if I ignore even that slim chance, then failure is certain rather than possible.

“Resolving the problems I am most afraid to confront is where progress lies. It’s insanely hard psychologically, but worth it.”

https://mail.google.com/mail/u/0/#search/Jane+Friedman+What+are+you+ignoring/FMfcgzGllChzgDxQDRVbDSKsVqtbGdNq

May 22, 2023May 22, 2023

Tiny Brick Home

still writing, almost there

If it seems to you, dear readers, like I’ve been writing my memoir for a decade, it feels even longer to me. The first step, the part I described to you as “vomit draft,” went swiftly. Since then, it has been a long, painstaking process of sorting the chaff from the wheat. Determining which moments best exemplify what it was like to mother my extraordinary family challenged me daily. Along the way, I have had to cut some favorite memories from the book-length memoir. Rather than have them disappear into the ether, I have from time to time chosen to share the “left-out” moments here on the blog. Today’s post is one of those times.

seeking a city home

In December, the post about Betsy’s birth ended with our family’s move back to the city of Chicago from the Western suburbs. In the memoir itself, this move is glossed over to make room for more compelling moments in our family life. It was, however, not without a certain amount of drama.

Once Jay and I made up our minds to move, we spent the next four weekends trudging into the city, seeking a new home. Wishing to stay close to the park and the zoo, we followed leads to rentals on the streets within walking distance of those locations. Most apartments in the area were located old three-story brick buildings. Although we were willing to take on the three-staircase climb to the right apartment, we couldn’t locate one big enough for our family. We tried the new high-rise buildings that now lined the park from Michigan Avenue all the way to Sheridan Road. Again, the apartments were smaller than we had hoped. Kids and their equipment take space. And time was running out for us.

Jay and girls — Lots of kids; lots of stuff

goodbye suburban home

As soon as we had decided to move back to the city, we had put our Western Springs house on the market without using a real estate agent. We held an open house on a crisp February Sunday. The house sold late that afternoon. It completely took us by surprise. When we had purchased the home three years before, it had been on the market for six weeks. Having been in such an emotional rush to get back to the city, we had done no market research. We didn’t know that the demand for single-family dwellings and urban rentals in the Chicago metropolitan area had skyrocketed. We had underpriced the house. The young couple who saw it that day knew immediately they were getting a bargain and had snapped at it.

now what?

Instead of being upset, we were relieved. I was especially happy that I wouldn’t be spending weeks trying to get and keep the house inspection ready. That could have proved impossible while I cared for three children under the age of four. But with our home sold, the pressure to find a city dwelling intensified. We continued to find apartments that had one of two drawbacks. They were too small or too expensive.

first city home

So we finally found the affordable sublet at 2400 Lakeview. We were so relieved that we jumped at it. Although extremely modern and lacking the charm we craved in a home, it was enormous. It had a huge main bedroom and two other spacious bedrooms, as well as a good-sized kitchen-dining area and a big living room. The entire apartment faced west, with floor-to-ceiling windows in every room. Best of all, the building’s front doors opened right across from Lincoln Park and the Zoo was two blocks away.

the venture begins

Six weeks after Betsy was born, the moving van pulled up to the tiny clapboard house in Western Springs. Three husky guys loaded our six rooms of used furniture into the van within a couple of hours. But it took them the entire rest of the day to get it all up the service elevator at the glass tower we had chosen for our new home. Almost as soon as we moved in, we realized we had made a terrible mistake.

this won’t work!

The apartment confined me and the children indoors more than expected. Getting two toddlers, their tricycles and a baby in her stroller onto the elevator before it closed turned out to be an ordeal I didn’t undertake lightly. I had looked forward to sunsets, but hadn’t realized that all afternoon, I would need to draw the drapes against the glaring Western sun. The sunless rooms depressed me, but the girls needed to nap and I needed to fix dinner. I had expected to meet other moms in the park, but met only nannys. We started looking for a better living situation.

small brick home

We did not find another apartment along the park but discovered a cozy little brick townhouse just two blocks away at 515 Belden. Besides two bedrooms and two baths, it had a basement family room. The kitchen was tiny, but the living room had a real wood-burning fireplace and sliding doors led to a small enclosed patio. As a true bonus, the townhouse came with a designated parking space, an asset worth its weight in gold in the crowded city.

this will work!

There was one glaring difficulty. The house’s three stories were accessed via a winding, open iron staircase. Could it possibly be safe for our three little girls? Especially if you considered that the oldest had epilepsy. The cozy charm of the house held us so enthralled we convinced ourselves that this staircase was not intrinsically more dangerous than any other. After all, we wouldn’t be living in one-story homes all our lives.

settling in

The townhouse was one unit of sixteen that formed a rectangle around a central courtyard of connecting walkways and raised flowerbeds. Most of the residents were couples, but it thrilled the three other families in the complex to have us moving in. Our most immediate neighbors, the Hauns, were a godsend. The mom Dee was a nurse to whom I often turned to for solace and advice, as Kristy’s epilepsy became more serious. Their younger daughter Evie became the girls’ babysitter and my mother’s helper for the next several years. She was the first of many young women without whom I am convinced I could not have survived with my sanity intact. Evie remains a dear friend, even as I write today.

still a heart’s place

Also, while living in the tiny brick house, I met one of my dearest friends ever, Elizabeth Katzmann. Elizabeth, who now lives in Minnesota, recently visited Chicago. While she was there, she and her husband went to the “old” neighborhood and took a photo of 515 Belden, which they sent to me.

Receiving that photo inspired me to write this post-my 100^th Blog Post!

Evie Haun and my girls — Evie, Betsy, Kristy & Carrie at 515 Belden

“Where we love is home- home that our feet may leave, but not our hearts.”

October 24, 2022October 24, 2022

Some Sneak Previews

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.

September 5, 2022September 3, 2022

Writers Need to Be Heroes

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

An Author’s Dark Night of the Soul

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

Jane Friedman <jf@janefriedman.com

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

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

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

a sign from the universe?

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

Straight forward, yes. Easy, no.

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

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

Act I—The Departure

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

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

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

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

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

Act II – Initiation

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

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

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

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

Act III –Return

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

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

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

brown pendant lamp hanging on tree near river — Photo by Rachel Xiao on Pexels.com

May 9, 2022May 7, 2022

The Value of Community

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.

January 26, 2022January 26, 2022

The Vomit Draft

the end is just beginning

Last month, both on this blog and on my Facebook page, I bragged (and there’s no way to put a kinder word there) about having completed a draft of my memoir. I felt darn right proud of that “accomplishment” because I had attempted to complete a memoir four other times and never got to “The End.”

Then I read Marian Roach Smith’s The Memoir Project in which she firmly states, “self-congratulatory is very bad.” She would add that this is especially true than when one is talking about a “vomit draft.”

My husband gagged when I used that term. “That’s a terrible thing to call your demanding work,” he told me. But I really get what Marian is saying when she writes, “It’s called the vomit draft because it will both sink and be pretty much everything you’ve got in you.” (p. 86)

digging deep

Writing a memoir, I’ve discovered is like mining for diamonds. Before any actual mining even takes place, prospectors need to locate the diamond sources first. If I choose to write a memoir, I hope will be worth reading, my first step is exploring my life experience to determine whether there may be sharable value there. Do I have something to offer readers that will enhance their lives?

man in orange polo shirt and blue denim jeans sitting on brown wooden round stone in near on on on — Photo by Sheku Koroma on Pexels.com

Anything and everything are mine to explore. But just as diamond seekers often follow second sources that never lead to “pipes,” or deposits where the diamonds will prove true and profitable, not everything I dig up from my life belongs in a memoir. I need to locate a primary source.

When prospectors are certain they have found diamonds, shanks are inserted into the ground at the ore-bearing “pipes” and vast amounts of soil are extracted. I knew I wanted to write about parenting my children, especially my two children with an extraordinary neurological disorder. That, however, covered forty-five years of my life. As I dug into my memories I retrieved copious numbers of incidents, funny, sad, delightful, challenging, discouraging – piles of memories.

the wheat from the shaft

Diamond miners typically do not examine the raw rock and soil on-site. Instead, conveyor trucks transport the composite to special plants which process the ore and extract the rough diamonds. This is where I stand in the memoir-writing process. My “vomit draft” is the huge pile of rock and soil from which I need to extract the “rough” diamonds. What pieces of the narrative I’ve captured on the page can I dole out in the final story? What have I learned that I can share in a meaningful way? Which of the “rough” diamonds, I sort out of this pile now, will work to build an argument for me, one built upon what I now know about the human condition because I lived this life? Which of these scenes best illustrate what I learned?

shallow focus of letter paper — Photo by Suzy Hazelwood on Pexels.com

In diamond mining, there is no assurance of fortune. Three hundred tons of ore might be sieved just to produce a single carat of gem quality rough diamonds. I may have written 100,000 words. It would be fortunate if a third of them are still standing when I finish my work.

not there yet

Even after extraction, the rough gems are a long way from the jewelry store. In heavily secured facilities, workers sort rough stones into various gem-quality categories and industrial-specific grades. To get from here (staring at my “vomit draft”) to there (the finished manuscript) is mind-boggling arduous work. Each paragraph even of the “rough diamonds” needs to be reevaluated. Is it necessary? Does it help the argument? Did I make the same point elsewhere? Am I falling asleep? If I am, so would my reader would be. Does this sentence help to show that I moved forward? If not, either it shouldn’t be there or it needs to explain the stagnation. Not until I’ve evaluated the “gem-quality” of each scene can I feel free to move toward the next draft.

brightly shining

In the ultimate step of its violent transformation from rough stone to exquisite gem, the roughs are sold, cut, polished, and commercialized. As I work toward a final draft, I’ll be doing four or more cuts. Are my sentences overly long? Break them up. Have I used a phrase where a single apt word would work much better? Did I just skim over that sentence? Get rid of it. To shine as brightly as an engagement diamond, this memoir needs to be perfectly cut and polished. It’s a long and violent transformation process for “gem,” but you wouldn’t give your beloved a diamond straight out of the ground. And I don’t dare offer you my vomit draft.

“Parents would be much better off if, like defense attorneys, we knew the answer to the question before we asked it. Except we never do, which makes a very nice place to write from.” Marian Roach Smith, The Memoir Project.

a child playing with her mother — Photo by Barbara Olsen on Pexels.com

November 30, 2021November 30, 2021

The Notion of “Fixes” and “Cures”

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

August 30, 2021August 29, 2021

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

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

August 16, 2021August 1, 2021

Winter of My Discontent

Delayed gratification

Children watch snow through window — Photo by Kelly Sikkema

Well, at the end of my August 9 blog post I left you hanging. My husband Jay and I had moved our family to a beach house on the Indiana dunes in Michigan City, Indiana. We intended to spend the summer there while during the renovation of our Chicago Victorian rowhouse. At the end of the summer, however, months of restoration work remained. We extended our beach stay to Christmas.

As you might have guess, December came and our city home continued to be uninhabitable. We would be staying on the beach for the winter.

swimsuits to snowsuits

The eastern shore of Lake Michigan in summer is a sunny paradise of warm sandy shores lapped by cool rolling waves perfect for body surfing. Winter transforms it into a raging sea of surging, angry, crashing breakers eating away at the dunes. The blue skies turn metallic gray and the wind makes it difficult to stand upright. It’s a place of majestic beauty, but not a playground for small children. My kids and I confined ourselves to the four walls of the cottage for the duration. The few desperate forays that we took to explore the dune in front of our house began slowly.

Children building snowman — Photo by Ethan Hu

It takes quite a long time to bundle four young children into snowsuits, winter hats, mittens, and boots. Usually by the time, I finished gearing up the last child, the first one was unzipping her jacket, complaining, “I’m too hot!”

When we got outside, we trudged to the top of the dune and surveyed the fierce power of the winter lake. By the time, we trekked back to the house, everyone, including me was ready for hot chocolate. The house that had seemed quite spacious when we had first viewed it the previous spring came to feel very cramped as the five spent hours after hour indoors. One blessing of those months was that Johnny was a breast-feeding baby. The oxytocin that flowed into my blood stream during our long sessions of nursing helped me keep my sanity.

We had been promised Christmas in our renovated Chicago home. Instead, we celebrated it on the dunes, which turned out to be as warm and traditional as we could wish for – right down to the photo of the children and myself coming down the stairs on Christmas morning. Jay took the Christmas break off from work and we had a hilarious New Year’s Eve with the children. I concocted a Chinese dinner. I even baked fortune cookies with handwritten fortunes inside. Unfortunately, they were rock hard and we needed a hammer to get our fortunes out! The break refreshed both Jay and me. Just three more months, the architect promised. We crossed our fingers.

a storm like no other

Then the snows came. Our cottage stood less than ten miles from the Michigan state border and we were swept up in the great Michigan blizzard of 1978. No one could remember a storm quite like it, but anyone who lived through it remembers it to this day. Massive and powerful, it turned deadly before it was over. In the midst of it, I didn’t feel at all sure my children and I would survive.

Carrie and Kristy were home from school when the January 26 sky turned dark grey. The National Weather Service had been warning of impending storm, but even they had no idea how big it would be. Within hours blowing snow pummeled our house and the dune, accumulating so quickly it obliterated the children’s play climber within two hours. And it just kept coming.

The South Shore trains stopped running so Jay could not get home. He tried calling us, but the lines were down and while our phone rang, no voice came over. The snow didn’t stop until Friday afternoon. By then thirty inches had accumulated. The snow covered our ground floor windows and the cottage was eerily dark. Television reception had disappeared, but the radio kept broadcasting. This connection to the outside world saved my sanity. The broadcaster was snowed into the station for 48 hours. At one point, he offered $100 to anyone with a snow mobile who would bring him a six-pack.

Beer was the last thing on my mind. We didn’t lose electricity. I don’t know why, but simply felt grateful. It was a week before Jay could get home. Even then he had to bribe a taxi driver to bring him to the cottage since the beach road remained dangerous. The blizzard was over, but not the snows. Both in Indiana and in Chicago the next few winters would prove to be extremely snowy, but that’s the one that is seared on my memory.

escape from the beach

appalachian Mountains — Photo by Ben Bracken

At the end of February, we knew we needed to get away from winter. We rented a motor and drove south. It was tricky going because the snows followed us all the way over the Appalachian Mountains. After one twisting, turning miles-long drive down a steep mountain side, we pulled into a truck stop for a break. We piled into the diner for lunch.

One of the truckers ambled over to Jay, “Did you just drive that rig down the highway?” he queried.

“Yep,” my husband said, “And it was damn frightening.”

“My, god, man” the trucker said, “No one’s been on that road all day. You’re luck you’re alive.”

“Oh,” Jay replied. “I thought it was odd we didn’t run into any other traffic.”

much needed magic

Little girl at Disney World — Photo by Joel Sutherland

Overall, however, the trip was a great success. The girls reveled in their first trip to Disney World although after coming out of the Haunted Mansion, Betsy chided Jay, “You shouldn’t have taken me in there. I’m just a little girl and I was really scared!”

We continued on to Delray Beach to visit Jay’s mother at her condo. It was great to get out of the trailer and into real digs for a few days before heading back up north. By that time, there were some signs of spring.

spring revival

With spring comes hope. On Mar 20, we moved back to the city in time to celebrate Easter in our new home. The house shone with gleaming new woodwork and freshly painted walls. The stained-glass windows now not only sparkled but no longer rattled. The kitchen appliances were not in working order yet, but our neighbors brought us meals for a week.

I fell in love with 832 Belden the moment I first stepped inside two years before. It had been very dusty and rather dilapidated, but I imagined how love and polish would bring out its true beauty. It had taken a lot of love and much more than polish to bring it to its present splendid condition, but now its warm, welcoming presence made my heart sing. My children radiated joy as they claimed their new bedrooms. Undoubtedly, I would have adored this house under any circumstances, but after our year on the dunes, my appreciation for this wonderful place overwhelmed me with the shear joy of being home at last.

“Life takes you unexpected places. Love brings you home.”

August 16, 2021July 31, 2021

Dream of the Beach – Plan for Reality

summer dream

What could be better? A whole summer living on the beach. Days ruled only by the ebb and flow of our appetites for food, sleep and pleasure – just my children and me for three idyllic months. Well, of course, there were glitches. There always are. But things held together pretty well. The worst trauma of the summer was a swarming wasp attack on my six-year-old daughter that nearly sent her into anaphylactic shock. Other than that, the weeks passed without grand drama.

back ‘n forth, up ‘n down

The hardest part for me was I couldn’t leave any of my three daughters at the beach on their own. Every time one of them needed to pee or poop, I had to sling their infant brother across my hip and parade with all three up and over the sand dune and back to our beach house. Plus side – between breastfeeding a lusty baby boy and climbing that dune a dozen times a day, I easily dropped back to my pre-pregnancy weight.

Mon and kids at beach — Photo by Dylan nolte

Late afternoons were a bit of a see-saw. Most relaxing was just staying at the beach until the kids were so bushed, I could feed them a simple dinner followed by a quick rinse in the tub and into bed just as the sunset. Time to pour a glass of wine and enjoy a good book. Down side – that meant my husband Jay was staying in the city for the night. Because we were brand new to the beach community, I didn’t know any close-by families. After a long, adult-free day, I yearned for some grown-up interaction, but Jay’s long hours at the office often meant he missed the last commuter train out to our distant community.

yay! dad’s home

On the other hand, the children and I got excited if we knew he’d be home, but that meant getting everybody off the beach by three, up to the house, properly bathed and nicely dressed so that we could meet his train. Pulling this ritual off was touch and go. We too often found Jay waiting at the station for us, hot, sweaty, and feeling deserted. Still, whether we made it on time or not, the reward was dinner at Swingbelly’s, a boisterous sandwich shop that catered to beach families. For me, at that time, it was as good as, if not better than any fine Chicago Loop restaurant.

the end of good enough

All in all, the summer plan worked until it didn’t. By the end of August, we found ourselves mired in disaster. Our Victorian row house in Chicago needed far more renovation than we had anticipated. We had expected the work to be completed by Labor Day in time for the new school year. On the third weekend of August, we drove with the children into the city for a tour. Many of the rooms were still down to the studs. None of the bathrooms had been plumbed. The kitchen was an empty square. True, we had new windows, repaired flooring, and a cleaned-out basement, but we didn’t have a living space. To ice the cake of disaster, our architect informed us there was no money left in the renovation budget.

now what?

“But we can’t live here!” I needlessly told him.

“Well, we could throw something together for about $10,000 more and you could move in next month,” he offered. “But it wouldn’t be the restoration you were hoping for.”

“What,” Jay asked, “wouldn’t get done?”

“The woodwork and staircases would remain unfinished. We could board up and cover the fireplaces. The kitchen cabinets and the new breakfast room would have to go.”

“In other words,” I confronted him. “We would be worse off than if we had never tried to fix the house up in the first place.”

“Not exactly true,” he said. “You have a new heating system instead of the old coal burner and the house is now much better insulated. And we’ve shored up the wall that had bent partially burnt away by that old fire.”

I didn’t find much consolation in his words. “If instead we go ahead and do what we planned, when could we finish?”

“You’d be in your new home for Christmas,” he assured me.

I looked at Jay with pleading eyes. “We need to talk about this.”

The situation had muted him and he only nodded. Johnny has thankfully slept out this encounter in his carrier on my chest, but now we rounded up our daughters from their risky romp through the half-finished house.

two steps back, one step forward

As the children slept on the way back to Indiana, Jay and I grumbled and muttered, half in conversation and half in self-talk. We were too numb for a real discussion. That took place the next day. Neither of us felt ready to let go of the restoration plan we had put our heart and soul into for months. This would be our forever house. If we could, we would complete the project. Two main issues took priority. Could we afford to proceed with the remodeling? What would we do about school for Kristy and Carrie? It was divide-and-conquer time. Jay would approach the bank about increasing our renovation loan. I took on the school situation.

the new us

As soon as Jay possible on Monday morning, I phoned the Michigan City school district. For Carrie, there was a straightforward schooling solution. The local public school ran a bus which would pick her up right in front of our house. I really like the open, Montessori-type structure of the school Carrie would attend, and her teacher, a twenty-year veteran first grade instructor, struck me as both competent and extremely caring. For Carrie, our shy child, it wouldn’t be easy to start at any new school, but this one, at least seemed would ease her in.

Child's painting — Photo by Dragos Gontarium

Kristy’s special challenges meant she would need testing before placement. Setting up an appointment for this meant Jay would have to stay home from work for a day, but in the scheme of things that was a small adjustment to make. As things turned out, the class into which Kristy was accepted was considerably better formulated to meet her needs than the one she had been attending in Chicago.

With Carrie and Kristy’s school issues settled, I began to look into a pre-school which Betsy, age four, could attend. But she put her foot down and refused to go. “I’ve gone to nursery school already,” she said, “but I’ve never had a baby brother before. I want to stay home.”

Pre-school isn’t mandatory and the truth was her company during my long days would be lovely. I didn’t press the matter. In the meantime, we did receive the loan extension from the bank. The restoration work would proceed as intended. We hunkered down to spend another four months on the beach.

commuting becomes a dilemma

Because we now had to wait until Kristy and Carrie got on their school buses before I could take Jay to the train, it meant he wasn’t getting to the office until eleven in the morning. He then had to leave by five to catch a train back to the beach. It was impossible for him to complete his work in such a short day. We had to consider that he stayed in the city for part of the week, but he couldn’t live at our wreck of a house. Could we afford a studio in town for him? That would really stretch our budget beyond control.

Chicago apartment buildings — Photo by Chris Dickens

Then the blessings of having a large extended family kicked in. Jay’s aunt Florence worked for the city, which meant she had to live in the city to keep her job. But her elderly father lived in his home in the suburbs and she was responsible for overseeing his care. Her solution had been to rent a one-bedroom in the city as her official address, but actually live in River Forest with her dad. This apartment was just off Michigan Avenue not far from Jay’s office.

She offered it to him to use whenever he needed. Gratefully we accepted. Now, I took Jay to the late train on Monday morning and picked him up from a post-dinner train on Thursday night. He spent long weekends with us. This was our plan. Very often, however, he had stay in the office through Friday as well. Autumn at the beach was spectacularly beautiful. I was lonelier than ever.

no end in sight

And autumn extended into winter with no end in sight for our renovation project. What happened next will be the story of my next blog post.

“Send your dreams to places you can’t reach; they will go there and they will pull you up there!”
― Mehmet Murat ildan