Perplexity of Responding to Condolences

Kristy and Johnny's niches at Notre Dame
bottled-up feelings

Several days a week a story from Narratively, an online magazine with the mission to “publish untold human stories that surprise, delight and captivate readers,” appears in my email box. Most days, I skim through the offering and move on to other emails. Last week, however, one of their stories stopped me in my tracks. I couldn’t get past it because it spoke so directly to feelings I had bottled up for such a long time.

responding to sympathy

The story, Jill Deasy’s “The AfterDeath,” had originally been published in Creative Fiction’s 73rd issue. The piece had won the Creative Nonfiction Essay Contest in 2019 and earned a spot on the Best American Essays Notable list. 

Drawn to the story by the words, “Reeling from the loss of their 7-year-old,” I avidly read to the end because Jill so accurately articulated an aspect of grief, that I still struggle with today, seventeen years after Johnny died and nine years after we lost Kristy. Much of what she had to say about coping with the loss of her son resonated with me. What struck the most familiar chord, however, was the struggle to respond to the reaction of others when they learn of your unbelievable tragedy.

cardboard words

In the immediate aftermath of their death, the usual limpid replies to the standard condolences worked: “Thank you for your kindness.” “It means a lot that you are here.” “I know you’ll miss him, too.”

These are cardboard words, borrowed from Hallmark, because their death had left us without accurate words to express how we felt. The deepest part of us knew condolences were totally useless. Way more emotional than usual, the logical part of our brains struggled to make sense of things. We were simply too distracted to consider how to respond well to sympathy. But to point that out to those who offered it would not have made us any less distraught. Instead, it would surely have made the comforters feel worse when they already felt inadequate.

fragile facade

So, I put up a brave front, smiled a lot, gave a lot of hugs, and wrote a hundred thank-you notes. After Johnny died, life went on. Kristy still needed care. My teaching obligations remained in place. Behind that façade, however, I slowly disintegrated for three years until I totally fell apart. At which point I descended into a bleak, black year of fear, anxiety, and depression. That God and the angels here on earth pulled me out of that hole still feels like a miracle. Every day, I rejoice I am no longer afraid to live within my own skin, that most of the time I can believe I did the best I could for my children.

extended condolences

But I have not yet escaped the trap of needing to respond to condolences, and I am no better at it now than I was in the bitter months following the death of first my son, then my daughter. These condolences still come because we left behind our home of fifty years and moved across the country. Here in Portland, we have made many new friends. With new friends come fresh revelations. Inevitably comes the question, “How many children do you have?”

I’ve been tempted to lie and say, “Two grown daughters, one lives here in Portland, the other one lives in Boston.” But that would be a betrayal of all that Kristy and Johnny brought to our lives even though it would mean I wouldn’t have to face the awkwardness that always follows the words, “We had four children; two of them have passed away.” These are the moments when Jilly Deasy’s story most profoundly resonates with me. She writes,

rare & foreign experience

I wondered how she would react to our story. I never knew what to expect. Sometimes, people would break down and pull me into their arms. Others would stand silent and face the floor, speechless. And there were some who smiled too much. Each encounter reflected my new reality — that around here, my loss was rare, an experience foreign to others. There was no rehearsed etiquette, no guidelines for acknowledging such misfortune. My presence triggered floundering reactions, and I couldn’t help but feel self-conscious in the face of other people’s discomfort.

What Jill and I know is that although we cannot measure grief or compare ours to that of anyone else, many people hold losing a child to be a deeper loss than many others. For this reason, telling someone for the first time that two of your children have died leaves them tongue-tied. Whatever can they say? Most often, because they don’t know me that well and never knew my children, they mumbled, “I’m so sorry for your loss.”

what’s enough?

I can see they know it’s not enough, but I feel awful for putting a new acquaintance in a place of feeling inadequate. I murmur, “Thank you,” when I want to say, “Please, no, it’s okay. Let’s just not talk about it.” But many feel compelled to ask, “What happened?” Then, the conversation takes a turn down a dark road with me finally insisting, “They were wonderful children. We were lucky to have them as long as we did.”

It’s harder if they respond with a story of a similar loss in their own family. Now, I’m the one who doesn’t know what to say, and I believe I really should. I’ve been there after all. I ought to have the vocabulary to comfort them. But I don’t because grief is so individual, you can’t get inside another’s mourning.

reciprocal condolence

I take some comfort in realizing that no one escapes a time of grief. So, even though I might not articulate my gratitude at the moment, I know I can show my thanks by being there when others lose someone that they care for.

It is important for everyone to understand that sympathy is still valued, even if it may be inadequate. At the time Kristy died, I felt less alone in my grief and found better ways to cope. David Kessler, Author, of Finding Meaning: The Sixth Stage of Grief”, suggests a “Rule of 3: Support them three daysthree weeks, and three months after the funeral.”

ongoing witness

What Dr. Kessler means, I believe, is that support needs to be ongoing because grief is. The words and gestures that support us are different at distinct moments in our grieving. Right now, what helps me process my loss best is the hours my writing groups and my writing coach are giving me as I create a memoir to witness the lives of my children.

A last summer at Belden

“For no soul can ever be replaced, and death claims a beauty and a magnificence that will always be missed.”
― Jocelyn Soriano, In Your Hour Of Grief: When Mourning the Death of a Loved One

 a

Where Do I Begin?

Kristy's Kinderkarten

 

a colleague’s question

“I wondered,” suggested a writing colleague, who read my memoir manuscript for the first time, “whether you should have started with the moment of crisis? You know when you heard the scream from Kristy’s bedroom?”

Her question resonated for me as I read a recent post by memoirist and memoir-writing mentor Marion Roach Smith, “How to Write a Difficult Family Story.” Roach Smith encourages writers to begin with a line that reader will “fall into.” Called “the hook,” by writers, this is a device that catches the reader’s interest so powerfully with the first few sentences they feel compelled to keep reading.

where does the hook belong?

Often the hook places the protagonist in a terrible situation, sometimes even at the point when they have run out of resources. The intention: make the reader immediately say, “How are they ever going to deal with that diagnosis?” or “Can they escape those people?” If the writer can entice the reader into asking such a question, then maybe they’ll keep reading because they need to know how the protagonist overcomes the “invincible foe.” This is an important factor to keep in mind. Victory may come as a change in perspective, attitude, or emotions, but there is almost always an assumption of victory-of some kind. Or the reader will feel cheated.

another way

There is, however, another way to use “the hook.” It’s trickier to make work, but it’s the one I used for the portion of my memoir this colleague had read. That device begins with the best of it, showing the high point in the protagonist’s life. Then the story plummets into struggle, often into a situation much worse than the main characters could have imagined. This isn’t what the reader expected to happen to these people. Yet, the question remains the same, “How are they going to handle this?”

A risk & a reward

There is both a risk and a reward with this second approach. The writer risks boring the reader with what seems a mundane narrative at the beginning-ordinary people leading ordinary lives, no drama. His, her, their job becomes rendering these characters engrossing and charming enough that the reader waits to see what’s coming. Then comes the reward. When the disaster occurs, the reader is fully engaged with the main characters. They know them and can feel with them. Thes reader cannot bear to be left behind. In their hearts, they hold these people and have a stake in what happens. Of course, they’ll stay until the end.

The second approach is the road less traveled, but it‘s the one I’ve chosen. When the memoir comes out, I hope you’ll walk along with me.

Daddy's Birthday

Still Saying Goodbye

still in our hearts

Two days ago, we celebrated the ninth anniversary of the passing of our oldest child, Kristy. Celebration may seem an odd word to choose. Yet, there are two reasons it is entirely appropriate. First, by the time she left us, Kristy deserved to be in a better place than this one. Second, we had been exceedingly fortunate to have shared forty-five years of life with her. There had been so many times we feared she wouldn’t reach her next birthday.

The following is the story of one of those times.

Deep heart wishes

On her fourth birthday, Kristy sat on a booster seat at our round oak table in the dining “L” of our new little house. Surrounded by her sisters, aunts, cousins, and uncles, under pink and white crepe paper streamers, amidst purple balloons, she drew in her breath and blew out four candles with one breath. “I wish for a kitty,” she announced.  No one had the heart to tell her you shouldn’t tell your wish.

But I kept my wish silent. For the past year, living with Kristy was a rollercoaster ride of increased hopes as her vocabulary increased, she learned to ride a tricycle, and she engaged readily in play with her little sisters, and deepened fears as her seizures happened more and more frequently. Not a single month went by without Kristy suddenly going into convulsions. They were no longer connected with fevers or illnesses of any kind, but random–and occasionally dangerous.

without warning

The most recent one had occurred while she was rocking her lullaby doll in her little green chair. Her arms flew outward, and the doll sailed across the room. Kristy’s head jerked back so quickly that I barely had time to unlatch Betsy from my breast. I lay her in the middle of the rug, grateful that she didn’t crawl yet. Her immediate shriek pierced my ears and my heart, but I had to ignore her.

By this time, Kristy’s back had arched, her legs and arms were spasming, and she had fallen face forward onto the floor. Carrie was already at her side, looking frightened, but patting her back–and she was only two years old! With shaking hands, I slipped a couch pillow under Kristy’s head, turned her to her side, and gently held her arms and legs so that they wouldn’t crash into the dining room chairs. Almost as quickly as it had begun, the seizure was over, but I sweated like a marathon runner.

worse than ever

As Kristy’s muscles relaxed, I slid my arms under her to lift so I could move her onto the couch. She screamed in pain. That shocked me. Usually, after a seizure, Kristy was a limp, unresponsive rag. I couldn’t see any injuries. Nothing was bleeding. But each time I tried to move her, she screeched. Behind me, Betsy’s cries subsided to whimpers. I glanced over my shoulder. Across the room, Carrie sat with her back to the fireplace, legs straight in front of her, and the baby in her arms. She had thrust her tiny thumb in Betsy’s mouth. My heart went out to her. Two years old and already shouldering responsibilities!

I needed help. The best possible answer was my neighbor Dee, a nurse at nearby Grant Hospital. I lay Kristy back down and moved into the kitchen. My hands were so slippery I could barely hold on to the phone, but I managed to dial Dee‘s number. “I need you over here now,” I blurted out, and hurried back to Kristy.

band of two angels

Two minutes later, when Dee flung open my front door, her ten-year-old daughter Evie was right behind her. “Kristy’s hurt,” I told them. Dee scrunched down beside my little girl and studied her. I went to Carrie, scooped up the now sleeping Betsy, and pressed my lips against Carrie’s dark curls, drinking in their soothing scent.

“What do you think?” I asked Dee. By now, Kristy was struggling to get up, but when she put her left hand on the floor to brace herself, she screamed again.

“Could be a broken collarbone,” Dee said. “We need to get her to the hospital. Evie, get me a clean diaper.”

Her daughter sped up the spiral staircase and down again in seconds. Dee formed a makeshift sling for Kristy’s little arm. “Jule, wrap her in a blanket. Evie, you stay here with the babies. I’ll bring the car upfront.” And she was gone.

yet another hospital run

Five minutes later, Dee dropped us at the emergency entrance of Children’s Memorial just two blocks from our home. X-rays confirmed my friend’s speculation. Kristy came home with her arm supported by a shoulder immobilizer, a combination of a sling and a strap around her waist to brace the injured arm. One of Kristy’s strongest traits had shone with full brilliance at the hospital. Although only four years old, she had listened to instructions attentively. She accepted the immobilizer without complaint and after that, she complied with the whole regime the doctor had set up for us.

time to heal

For the first week, I put a pack of frozen peas over her collarbone for twenty minutes every couple of hours. During that time, I would sit on the couch, slip Kristy onto my lap, and read a picture book aloud. Carrie crawled up beside us. I tried to coordinate these sessions with Betsy’s infrequent naps. Sometimes I would enlist Evie to come over and take Betsy for a walk in her stroller so I could spend the time with Kristy. The immobilizer remained in place for a month, but it didn’t always ease Kristy’s pain. Reluctantly, I added children’s Tylenol to the phenobarbital she was already taking.

reprise emergency

At the end of the month, I walked Kristy back to the hospital. We cut through the brick alley behind our townhouse complex on our way. Halfway there, she cried out, flipped backwards, and went into convulsions. I caught her going down, but her head hit the edge of a brick hard enough to bleed. I balled up the cloth of my skirt and held it against the minor wound.

For twenty minutes, we sat in the deserted alley. The sharp bricks cut into my legs as I prayed that help would come, but my angels slept that morning. When Kristy was fully awake, we continued our walk to the hospital. She came home without the immobilizer, but with four stitches on her forehead.

move on through the maze

There were times between such incidents that I just wanted to curl up on the couch, drink coffee, and read a good romance – anything to escape the reality I had somehow constructed for myself. But instead, every day I threw myself into the myriad of other responsibilities that were mine as the mother of three small girls. Romance could wait.

How to Stay Married

Just Married
which anniversary is this?

Over the last couple of weeks, when invitations to various events came our way for December 19, I would reply, “Sorry, can’t be there; it’s our anniversary.”

Each time the response is “Which one?”

“Fifty-ninth,” I tell them.

The reactions differ from “Wow,” to “Wonderful,” to “Amazing,” but the most frequent is a question, “What’s your secret? How did you keep your marriage going strong for so many years?”

It’s not a new question. A newlywed couple asked us that exact question on our fifteenth anniversary!

the secret to staying married

Over the years, I’ve pondered the query and tried to answer it honestly. Maybe I needed the answer for myself as much as for my listeners. For the first twenty years, I usually replied, “Make time just for each other every single day.” This was a promise we made to one another around the fifth month of our life together because I realized one evening that I hadn’t “seen” Jay for two days. Sure, we had slept in the same bed, but I was asleep by the time he got home at night, and I left for work before he woke in the morning. Both of us worked and were in school. Our only free time was Sunday. Even then, most of the hours after morning Mass, we spent studying-he was in a corner of the living room with his law school buddies and me curled up in our bed.

every marriage depends on compromise

On the night of my ah-ha moment, Jay found me in the living room, wide awake at eleven o’clock. When he quietly shut the door behind him and saw me, he was startled. “Are you okay?”

“No.” I said. “We need to talk.”

Seeing how upset I was, he sat on the couch beside me, wrapped his arm across my shoulders, and hugged me. And I cried. In between sobs, I told him how lonely I was. “We spent more time together when we were dating than we do now,“ I said. “Is our marriage old hat already?”

He gave me a deep kiss and murmured, “I doubt it.”

“Okay then,” I said, “We need to spend more time together.”

“But Yulsey, we have impossible schedules. How are we going to do that?”

“I’ve been thinking,” I told him. “Although our days are crazy, we could have breakfast together. But…” I hesitated.

He nodded. “I’d have to get up before you leave for work.”

“Right. Could you do that? I’ll get up early and make really nice breakfasts.”

His response was, “When you look at me with those deep blue eyes of yours, I’d agree to anything.”

good marriages must be flexible

It often took some complicated juggling as we graduated school, took on new jobs, had four children, and moved several times, but breakfast remained sacred for us right until our twenty-fifth anniversary. By then we had added a once-a-week date night.

Then the children grew up. They moved out of our family home. Our job stresses lessened. We had more time for vacations and weekends away. The breakfast and date night rituals gradually drifted away. Now we are retired and spend much more time together than away from each other. Our love story has come full circle because now we can have all the time we want with one another.

The twilight marriage

This doesn’t mean we can’t drift into routines where our daily paths don’t cross very often. Jay’s continuing vivid interest in politics has him watching several newscasts every day and reading TIME religiously. Our garden also occupies hours of his day even in the winter. (Don’t ask me what he finds so engrossing out there!) This computer of mine keeps me glued to my desk as I pursue writing for hours a day as I yearned to do in those years when I taught and cared for our children. We no longer share breakfast every morning, but we always meet for lunch.

Best of all, every night is date night now. At 5:30, we put away the day’s tasks and join each other in the living room for an evening cocktail and an hour’s chat about all sorts of things. Then we savor an uninterrupted dinner. Although much of our conversation becomes nostalgic as we recall the crazy, chaotic, glory years of raising of wondrous children.

good marriages depend on grace

Our secret remains-Spend as much time as you can together. In our heart of hearts, we know this has been possible for us because a loving God has gloriously graced us.

Giving Thanks for Work and Its Lessons

wishing can be tricky

A new board game, bought by my family, challenges players to answer random questions picked from a stack quickly. If they cannot answer, they lose their card. Sounds simple, right? Still, some questions left us stumped, including for my granddaughter, “A genie has appeared and will grant you three wishes. What do you choose?”

The first thing that makes that difficult to answer is most of us have over three wishes. Then, the query trips us by making us hover between sheerly personal wishes and hopes for all humanity. Finally, of course, the player is on the spot with people who know them eager for answers. The proper point of the game is not winning but getting to know one another more deeply.

Despite some hesitation, my granddaughter provided a balanced list of three things. Her wishes were an end to poverty and hunger, a billion dollars for her parents, and never having to work.

never working! Good or bad?

The last one threw me for a loop. It isn’t anything I would have ever thought to wish for. Nor, as I ponder the prospect, does it seem appealing.

Just the opposite. As Thanksgiving Day approaches and we all reflect upon those gifts for which we are most thankful for, at the top of my list is WORK.

thanks for work

From my first job to my retirement, work provided personal growth and a sense of identity. Throughout high school, I babysit our neighbors, four children, 3 little girls and an infant son. I gained valuable insight into the psyche of small children that would serve me well throughout my life. I learned as well that we fail children all the time, but if we have forgiven their small foibles, they will forgive us our major ones. They taught me to say with honesty, “I’m sorry” and “It’s okay.”

“I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.” – Helen Keller

scrubbing thankfully

Also in high school, I took a job covering a local doctor’s office on weekday evenings when the staff had left for the day. The tasks included cleaning blood off the surgery floor and accepting money for doctor bills after hours. Switching from “cleaner” to “receptionist” defined multi-tasking for me long before I heard that term.

Visualize wringing a smelly rag, washing your hands, and cheerfully calculating a client’s bill, despite their questioning. It was nitty-gritty work for which no one ever thanked me. I left when my shift finished and received the check for $5/week in the mail. I found, however, that I could be my own cheering squad and take pride in minor tasks accomplished well. Praise, I discovered, however gratifying, isn’t necessary. You can develop your own sense of self-worth.

“All labor that uplifts humanity has dignity and importance and should be undertaken with painstaking excellence.” – Martin Luther King, Jr.

unnoticed, unthanked

This awareness came to my rescue through several other work situations. Throughout college, I served in the college dorm to earn tuition, room, and board. No tips, of course, I had to be my best judge of how well a mealtime went and not depend on the generosity or the stinginess of those I served. Wait staff bears the complaints of diners for mishaps, real or imaginary, of other members of a dining room staff. Being gracious enough to accept the slurs with an apology and without pointing fingers is as much a part of being “good” as being adept at balancing plates.

thanking appraisal

That same principle worked for me in other positions. In my roles as a caseworker, teacher, and professor, I was regularly evaluated. Others judged my work by systematic standards or personal reactions. I didn’t ignore these assessments, but I took them with “a grain of salt,” i.e. I improved their flavor with reminders of how hard I had worked and what I knew had gone well.

defining work

Work has been a Ying/yang experience–without defining me, it has helped me define myself. I am who I am for many reasons, but my working for a living has been a major contribution to the ultimate definition.

For that reason, this year I choose to be thankful for WORK.

Of course I also say “I am a woman; I am a wife; I am a mother.” Those roles are the heart of my being. But I am better at all of them because I am also a WORKER. Thus, although the paychecks stopped a decade ago, I still “work.” I write and I need all the confidence I gained in those other roles to keep my writer self going.

“The highest reward for a man’s toil is not what he gets for it but what he becomes by it.” – John Ruskin

John Ruskin was a Victorian writer, philosopher, and art critic. 

Gratitude Quotes for Workers

person typing on laptop
Photo by Ron Lach on Pexels.com

Crafting Relatability

Johnny's First Communion with Grandpa and Grandma
make it relatable

As I’m sure you all know by now, if I am attempting to find a press for my memoir. I dream of sending you a copy and begging you to urge your friends to buy one of their own.

Right now, as I sat at my desk and forge yet another query letter, my attempt feels more like “wish” than an effort. I’m following the rules, jumping the hoops, but as yet I haven’t been able to grab the “prize.” But authors Jane Friedman and Deborah Williams have recently published posts that encourage me to keep going.

what is relatability?

A good memoir, they claim, must have the same elemental attribute that an excellent novel possesses. It has to be relatable. That might seem like a nebulous, hard-to-define quality. Writing is as much craft as art. There are concrete tools that writers can employ to engage the reader. Used wisely, they make a reader exclaim, “I really get this!” When readers sync with a writer this way, they literally immerse themselves in your story.

you are not alone

Someone reads a book and a gut feeling tells them, “I get this,” or “I can totally relate to this.” That doesn’t mean their life experiences mirror those of the author. Rather, the language dives deep inside and touches them, their sensibilities. They feel both known and not alone. The author’s background and situation need not mirror ours for this to happen. Our worlds can seem to belong to alternative universes. Yet, we understand their language; we sense their anger, despair, joy, satisfaction.

I’ve never lived in the desert or been a successful career woman. Yet when in The Glass Castle, Jeannet Walls spots her mother rummaging in a dumpster, it spurs up unsettling emotions. that resembled my own complicated relationship with my mother. Her moment raised for me issues I had, like Walls, buried and tried to forget.

Half of a Yellow Sun depicts Biafra’s passionate struggle for freedom. It’s an important and heartbreaking moment in history. The reader, however, is bound to the page, not by the grand sweep of political turmoil, but by the evocative way in which the author invites us into the lives of unforgettable individuals.

Readers may weep for these characters. At the same moment, they feel less alone in their own uphill battles.

I bring relatability to my memoir by incorporating my senses to recount my family’s fight against a hidden foe. I “zoom in” to watch my granddaughter sewing a rage doll for her dying aunt. I bend down with the priest, who tries to explain death to a six-year old.  Can reader put themselves in a corner of the room as we experience each setback? Do they want to beg the doctors for better answers? Do they wish they could offer some solace when my child dies? Then, I have achieved my goal.

Provide Visual Cues

Life itself is always in motion-whether this is inner turmoil, outside chaos or daily routines. Even in the quietest moments, there are subtle movements that convey the mood. For my memoir, doctors’ offices and hospital rooms set the stage for many strategic moments in our narrative. Kristy and Johnny’s reactions and responses add a unique pace to the memoir, even in formal settings. Throughout the memoir, I strive to make their shining stars sparkle even in times of utter darkness.

Vulnerability, the Powerful Tipping Point

As authors, we have to ask ourselves how much of the “Narrative I” are we willing to reveal. But if we are holding back, we lose our readers. I learned to find the level of disclosure that felt comfortable -and push it back to the “edge of what seems possible,” and go for it. That tipping point is where we find the connections that make writing its most powerful. That’s what I’ve done. At least, more than I thought I could at the beginning. I’ve been as honest as possible about the moments that overwhelmed me and despair raged with hope. Making myself vulnerable, open to critique and judgement reveals my humanity, makes me one of you. That’s relatability.

I truly believe I’ve written a relatable memoir. I hope you can read it.

Krsity on the way to school with Martha

Like, But Different From

writers are like, but different from actors

Writers are like, but different from, actors. Just like actors, writers can suffer stage fright. Actors rehearse their parts to perfection. They don carefully chosen costumes and make-up. Yet, at when they are about to step onto the set, that seemingly authentic rendering of reality, it all swims away from them. They can neither move nor speak. Writers freeze in front of our computers at the moment when we need to hit send and speed a query letter to an agent or publisher.

my memoir-like, but different from other memoirs

Is this book ready for a professional review? It doesn’t matter that we spent hours, days, weeks, months crafting this piece. Gone is the reassurance of writing workshop colleagues. In vain do we remind ourselves how many times we’ve edited and reedited the work. May it could be better. Or worse, was it ever any good at all? We might think our work is ready, but we worry if our query letter is persuasive.. Have we piqued an acquisition editor’s interest? Did we pick up on the right cues from what the publisher says they are looking for?

what publishers want

And what is it publishers are looking for, anyway? It’s like, but different from what they say in submission forms. Here’s what they say they are seeking. They hope their books will capture the imagination and share arresting elements on lived experience. They aim to print books that are both engaging and consequential of the highest literary merit and relevance. These books must be enlightening and inspirational. The key to all these elements, editors agree, is quality, the individual author’s ability to tell a good story.

Publishers seek books that are creative, engaging, well-written, relevant, enlightening, inspiring, and commercially viable. How does an author convince the acquisitions editor of this potential? Look for the answer in the phrase on submission forms: “Include additional information like the target audience or comparable books.”

like a best seller, but different

That brings us to the rather cryptic title of this Blog Post, “Like, But Different From.” What the publisher wants to know is what book or books like yours have sold well? Why would it be likely to draw the same audience? At the same time, they expect you to show that your book is also different from these other narratives in important ways. You need to argue that you bring something new to the argument or add to the ongoing story-not simply repeat what has already been said.

This principal is like one taught by Marian Roach Smith in her Memoir Project. My memoir’s theme must be a universal, one that resonates with many other people. My personal story is one example of that universal. When I took Marian’s class, she helped me see the theme of my memoir in this way:

What did I endure (suffer) so that I could endure (triumph)?

ying/yang of endure

I worked tirelessly to find solutions for Kristin and Johnny’s physical and mental disorders in both the health and education sectors.. I suffered because it never seemed to bring any change and things just kept getting worse.

I succeeded by being strong and achieving goals as a parent and more, thanks to my ability to give Johnny and Kristy the best chance at a good life.

an example of the universal

Like other mothers’ memoirs, my book explores the experience of raising children with disabilities and the self-discovery that comes with it.

It differs from many other narratives in that there is no eventual triumph over disability and disease. The triumph is not so much in the actual win, but in finding a community that takes care of Johnny and Kristy with us.. The book also tells a bit, but not enough, of the untold story of Misericordia, a place where angels truly live on earth.

 

Rainbow over Misericordia

 

What Am I Trying to Ignore?

Stuffed monkey covers eyes
“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

Woman and old memoir

Where We Left Our Hearts

vagabond life – sort of

Throughout most of our married life, Jay and I have lived a somewhat vagabond life. Until 2016, when we moved to Portland, Oregon, we always lived either in the city of City of Chicago or within an hour’s drive of the metro area. Within those boundaries, however, we switched abodes frequently. In fact, we have had 16 different residences. If I included all those moves in my memoir, they would run away with the story.

Because my special kids, Kristy and Johnny, are the heart of my memoir, and their sisters, Carrie and Betsy, are its pulse beat, I focused the memoir on them. All those little anecdotes I wrote about our various moves hit the cutting room floor-or, with a few exceptions, showed up in my blog. Today is one of those exceptions.

real home

Chapter Two contains this one-sentence summary. “In the spring of 1975, we moved three blocks west into an enormous Victorian row house that needed tons of remodeling.” What an understatement in every way! We lived in that row house, 832 Belden, longer than anywhere else. Our children “grew up” there. It was home for 27 years, and in our family, we all still think of it as “HOME!”

How we came to live there is a most unusual tale.

finagling a break

In December 1974, to celebrate our tenth wedding anniversary, Jay and I planned a trip to New Orleans. I had spent a bohemian summer there during college and yearned to visit my old haunts. Jay, a jazz music buff, had always wanted to visit the clubs on Bourbon Street. We hoped for a second honeymoon experience. Bringing along three little girls didn’t fit the plan. I couldn’t, however, leave Betsy behind because she was still nursing. Could someone stay with Kristy and Carrie for a few days? Easier planned than executed. Neither of our moms was up to the task.

We appealed to Frances Johnson, an older woman who had sometimes stayed with the children while we slipped out for a “date night.” She and the girls were comfortable with each other. And Frances knew exactly what to do if Kristy had a seizure while we were gone. We also arranged asked Evie, the teenager next door, to come in the afternoons to help Frances out. That Evie’s mom, nurse Dee, was less than a minute away in an emergency gave us the final assurance we needed to make the break.

I knew it was a risky decision, but deep inside the core of my being yearned for a chance to step away from the twenty-four/seven vigilance of my everyday life. What I must cope with every single day regularly depleted my emotional strength. To maintain my sanity, I needed to replenish my resources.

second honeymoon

Thus, on Wednesday evening, December 18, 1974, we settled into the Commodore Hotel, a grand, old hotel with a three-story lobby blinking with crystal chandeliers. New Orleans favored us with pleasant weather, a little above average temperature for that time of year. We explored blocks and blocks of the French Quarter and the Garden District on foot. We had a list of galleries to visit and restaurants to try. I also wanted to show Jay the places I hung out in when I spent my nineteenth summer in this fascinating city, my very first solo adventure.

Betsy’s sleep patterns set our mealtimes. An energetic, restless child, she found remaining still and quiet in a restaurant highchair for over ten minutes past her limit. Instead, we fed her little picnics in quiet corners of the city. Then we nestled her in her umbrella stroller and took in the sights until she fell asleep. At that point, we ducked into the nearest restaurant for a quiet, gastric feast. On the evening of our anniversary, we entrusted her to the hotel’s certified childcare worker. Betsy and this competent, kind woman meshed so well together, I wished I could take the caretaker home with us.

unexpected welcome home

Returning to Chicago after midnight on Sunday, we crept silently into the house. We intended to drop everything and slip into bed, but Jay noticed a vast pile of mail on the dining room table. Some unexplainable urge impelled him to check through it. One envelope stopped him. A former law partner had sent a letter from his home address. Curious, Jay ripped it open. The note inside read, “This dropped in our mailbox. We’re happily settled in our place, but thought you might be looking for a bigger house. Best, Jack.”

A flyer slipped out of the envelope. The McCormick Theological Seminary, it announced, was leaving its Lincoln Park campus and moving to a new site on the Southside of the city. The seminary was about to sell the whole campus. This included the administration and classroom buildings, the dormitories, the chapel, and the library. Most significant to us, they were also selling the fifty-two Victorian row houses that surrounded the campus.

Each morning on his way to the Fullerton “L” stop, Jay had often walked past these stately redbrick homes. He had not understood they were owned by an institution, let alone a seminary. Could one become ours? It seemed impossible.

dream the impossible dream

Betsy stirred in my arms. If she woke, it would be hours before I could get her back to sleep. So tiptoeing precariously up the winding staircase, I held my breath and winced when the door to the girls’ room creaked as I shoved it with my shoulder. I stopped. No one woke. I snuggled her next to Carrie in their double bed without bothering about pajamas. Despite the late hour, the flyer Jay had unearthed from the pile of mail had startled me into a fully alert state. Was there a chance that we might purchase one of those elegant row houses? I had to find out.

As much as our snug little house at 515 Belden had worked as a safe cocoon for three years, by 1976 we had outgrown it. We had to move, but prices in Lincoln Park had been rising steadily. We worried we’d have to go back to the suburbs. This could be our chance to stay in the city, to live where we felt most at home. When I got to the bottom step, Jay was rummaging through a small chest in the front hall. “Where’s the checkbook?” he asked.

I could feel my eyes widen into saucers, “You’re not buying a house, site unseen in the middle of the night!”

He laughed, and the freckles danced on his cheeks. “Maybe I would if I could. But no. These houses are going to be sold by lottery. To be part of the lottery, we have to register by noon tomorrow and twenty-five dollars is the registration fee. If we had waited until tomorrow night to open Jack’s letter, we would have missed our chance.”

lucky lottery house

The lottery was the seminary’s plan to keep the houses affordable for families with moderate incomes. The assignment of the houses by the lottery system was complex and took several weeks. When our turn came, we chose 832 Belden without seeing the interior (the renters would not open their home to perspective owners). But we felt certain it was a magnificent house because it was on a corner, which meant it would be brighter inside than many row houses. It was also somewhat wider than the other homes in its row, and jeweled, intricately designed lead-glass windows graced almost every window. We took our chances and never regretted it.

Our first year in the new house was an adventure of discovery- of all that needed to be repaired. Twenty years passed before we finished remodeling the house, but it was one long labor of love. When we finally moved, we did so only because Kristy’s health made it necessary.

832 Belden
Our New Home

Tiny Brick Home

At the zoo with the girls
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 100th 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.”