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

Winter of My Discontent

Winter beach
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.

Jule and the children, Christmas, 1977We 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.

Blizzard
Photo by Christian Spueller

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

Easter cookies
Photo by Jennifer Burk

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.

 

832 Belden, Chicago, IL

Forever Our Favorite House

Indiana Dunes
a sense of deja vu

Beach house interior
Photo by Hutoo Abrianto

“Here it is,” my young friend Sarah Forsythe gleefully announces as she moves aside to usher us into her newly acquired cottage on Highway 30 along the Florida Gulf Coast.

I duck into the tiny light-filled living room. Something feels strangely familiar although I’ve never been here before.

Sarah chats away about how there was no kitchen before so she had to carve it out of a corner of the front room.  I agree it’s charmingly done, glancing around with chills of déjà vu running up and down my arms. We move into the bedroom hall. Sarah continues her merry monologue about the effort it had taken to transform what had been a hoarder’s shack into the exquisite beach cottage we now admire profusely. The hallway ends in a wonderful surprise. The entire back half of the house is one enormous master bedroom looking out over a small lake. Our friend has bought a house no one wanted because it was in such bad shape, and now she owns a home set between the ocean and a lake.

ah, it’s the paneling!

Southern lake
Photo by Jo Valery

“It’s incredible, Sarah,” I say. “And somehow it feels familiar.”

She smiles. “It’s the paneling.” She points to the ceiling, which is covered in knotty pine.

“Of course,” I reply. “It reminds me of our beach house in Indiana.”

“I felt the same way the first time I saw it,” she tells us. “It was one of the reasons I knew I just had to have even though Bill (her finance) thought I was crazy to take it on. The Indiana house was my favorite home ever!”

My daughters, I knew, feel the same way she does. “Carrie and Betsy often say they really wish we could have held onto it.”

“Why did you and my parents give it up? We all loved it so much?” she asks.

“There just came a time when holding on didn’t make sense any more, but that didn’t make it easy to let go.  The weird thing is none of us set out to buy a beach house in the first place. Yet, it was one of our best moves ever. One we never regretted.”

unexpected acquistion

Almost half a century had passed since Sarah’s family, the Forsythes and we had purchased the ramshackle house in Michigan City on the Indiana Dunes. Eventually we fondly dubbed the place, “1618,” its mailing address even though we never received mail there. Desperation drove us to buy it in the first place.

832 Belden Chicago, ILIn the autumn of 1976, Jay and I undertook the renovation of the 1895 Chicago row house we had bought the year before. What started as a fairly simple project ballooned into a blueprint for a major restoration. We originally envisioned updating the electric and plumbing throughout the house while remodeling the kitchen and bathrooms. By mid-October and after multiple sessions with our architect, John Drummond, we had a very different design. It now included restoring all six fireplaces to working order, reducing the four bedrooms on the third floor to two, stripping and staining every bit of woodwork throughout the 5200 square-foot house, and installing a new heating/air-conditioning system.

In the same week we committed to this major makeover, we realized I was pregnant with our fourth child. The new baby was due in May. Caring for an infant while surrounded with workmen sounded horrendous to me. I pressured Jay and our architect to get the project going.  Finalizing the design work, getting work permits, and lining up contractors, however, proved to be a long-drawn out process. By January we knew that the beginning deconstruction would not happen until May.  Our baby’s due date was May 15.  John, the architect, thought the renovation would take about four months.

close to drowning

Jule and the children, Christmas, 1977How, I wondered, was I going to get through a summer with four children under the age of eight with our home literally being torn down around us? The answer came to me as I waited to pick up my youngest daughter Betsy from preschool.  On the bulletin board, an index card offered a four-bedroom cottage on the dunes in Michigan City, Indiana, for rent.  Maybe we could live there for the summer.  Jay liked the idea.  I called the cottage owner.

tiny cottage
Photo by Clay Banks

We drove out to see her place, but knew as soon as we stepped in the front door that we couldn’t possibly live there for four months. Yes, it had four bedrooms, but each was minuscule and the common room was just as small. The miniature kitchen appliances were at least forty years old. This little cottage was meant to be a two-week summer refuge for a family who would “live” at the beach the whole time. A family of six, however, would be crawling all over each other by the end of less than two weeks.  By the end of a whole summer here, we’d be at our wit’s end.  Yet, as much as that house disappointed us, the idea of living at the beach for the summer still sounded like a good plan.

disappointing search

Lake Michigan Cottage
Photo by Josh Hild

At first, we read classified ads in our search for a summer place, but not full-summer rentals turned up. So, we hired a real estate agent who did rentals as well as sales.  For several weekends in a row, Jay and I drove over to Michigan City to look at possible rentals.  We stuck with Michigan City because the South Shore Electric train rail ran from that town into Chicago’s Loop and provide an excellent way for Jay to get to work.  For a thousand reasons I no longer recall, none of the houses that the agent showed us seemed feasible.  February was almost gone. Panic took over.

“Let’s consider buying,” I told Jay. “If we hate it, we can sell next year. But we might love it. The beaches are lovely and it’s close enough to have a permanent summer house there.”

risky choice

Lake Michigan from beach
Photo by Jeff DeWitt

“Are you kidding me?” Jay exclaimed.  “We barely know how we’re going to finance this renovation of our house and you’re talking about buying a second one?”

I pushed back. “We have to come up with a solution for the summer.  We can’t stay here. It’s not like we’ve never talked about a cottage on the dunes. Whenever we go up to Michigan to rent a place for a couple of weeks, we talk about buying a place someday.  So do Bill and Mary Florence.  They’d love it if we found a place on Lake Michigan.”

“We’ll look, but I’m not committing to anything,” he said.

The next weekend I felt certain we’d find a lovely spot just right for us, but the homes we loved were way beyond our price range and ones we could afford were too far from the beach to make the purchase worthwhile for us. By mid-March, our whole scheme looked like it would go down the tubes.

a crazy idea

Mailboxes
Photo by Mathyas Kurmann

“Maybe there are families who are ready to sell but haven’t contacted a real estate agent yet,” I said.

“That could be true, but how would it help?” Jay asked.

“Well, we could put letters in the mailboxes of all the houses we like. We tell them we’re interested in buying or in renting for four months.  If they are open to an offer, please contact us.”

“That’s crazy.”

“Maybe. But what can it hurt?”

The following weekend we slipped our letter into fifty mailboxes up and down Michigan City’s Lake Shore Drive.  On Wednesday, we got a call.  When we arrived at 1618 Lake Shore Drive on Friday evening, we immediately fell in love with the location.  The house sat several steps down from the road and away from what little traffic noise there was on that quiet street. A small sand dune sat between the house and the lake, protection the home from Lake Michigan’s winter storms. Up and over the dune was a two-minute walk to a deep beach lapped by lake waves.  At this point the lake offered enough shallow waters for children to play safely.

Knotty pine
Photo by Abby Anaday

The house took our breath away quite differently. It was jammed full of furniture and people and appeared to not have been cleaned in some time. Still, it had a long, spacious living/dining room, a good-sized if badly furnished kitchen, and five good-sized bedrooms. From the front bedrooms, you could see the blue-grey lake turning scarlet under the setting sun. Best of all, every wall and all the ceilings were glowing knotty-pine despite the poor upkeep of the rest of the house.  We both knew we wanted this house.  The asking price of $52,000 was, however, way beyond what we could swing.

The owner agreed to wait a week to hear from us.  The minute we arrived home, Jay called Bill Forsythe, “I’ve got a deal you can’t pass up,” he said.

cross your fingers.

The next weekend, the Forsythes drove out to the beach with us. They walked slowly around the house with us and the down to the beach, where we could see a faint outline of the Chicago skyline at the edge of the horizon.  As we mounted the steps back to our car, Mary Florence said, “It’s one of the ugliest houses I’ve ever seen, but, of course, we’ll buy it!”

So, we did. Over the years, Mary Florence transformed the “ugly” house into a beautiful home for all of us – the home that became everyone’s “favorite house of all.”

Of all the places you have lived, do you have a favorite? It would be great to hear about it right in this space?

1618 Lake Shore Drive
1618 Lake Shore Drive

“The ornament of a house is the friends who frequent it.”
Ralph Waldo Emerson