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.
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.
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.
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.
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.”
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.
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.
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, Betsy, Kristy & Carrie at 515 Belden
“Where we love is home- home that our feet may leave, but not our hearts.”
If you live in the Chicago Metropolitan area, this weekend you cannot miss a major fundraising drive. This coming Friday and Saturday, over 10,000 volunteers head out to the street corners, bus stations, train stations, and groceries stores of this bustling city and suburbs to beg. Wearing bright white and red aprons, they approach everyone they meet with a friendly smile and the request, “Help Misericordia.” As they do so, they offer the recipient a delicious packet of Jelly Belly Jelly Beans and a small card explaining the work of a magical place that is the home for over 600 persons with physical and developmental disabilities.
As you’ve learned from other blog posts, two of my children, Kristy and Johnny, once were lucky enough to live at Misericordia. The good work goes on and parents continue to be grateful. Here’s one mom’s story. I’ll let her tell it in her own words.
one mother’s story
“It’s hard to believe that it’s been almost 40 years since that day when two of my best friends and I drove my son Jon to move into Misericordia South. He was only four and a half years old. I knew he needed the care they could offer him, but it still was one of the toughest days of my life.
tears into triumph
“I could not know then that it was also the beginning of what would become a rich, fulfilling life for my son! For the first six years, even though I saw how he thrived at Misericordia, I felt guilty and sad whenever we took him back after his frequent home visits. I would cry on the way to our house. But as the years rolled by, I slowly realized that Jon was not only happy at Misericordia, he prospered there! Every member of the staff adored him. Endearingly, they called him “Chocolate Eyes,” offered him the special attention, loving care, and stimulation that he needed. Then, when he came home each weekend, his brother and sister and all their friends outdid themselves, constantly entertaining him. His was a ‘good life.’
“When Jon was ready for school, he took the bus from Misericordia to Oak Park for elementary, middle, and finally high school. I had the privilege of serving as ‘honorary room mother’ throughout his school years.
exciting new challenges
“Midway through high school, Jon moved to Misericordia North and became the first resident there to have a g-tube! Pam Dreyer, the Head Nurse, told Jon it was his job to teach all the other Mis nurses about g-tubes, and he loved this great new challenge!
“Moving to Mis North meant Jon transferred to Park School in Evanston. He loved his new school environment, but was especially excited about the many new opportunities, like the art studio and the bakery, that he found at the North campus. His good life had become even better.
“His life got better yet when the McGowan Home opened its doors. One of its original sixteen residents, Jon moved into this beautiful home designed especially for residents who depended on wheelchairs. Windows and tables sat at wheelchair height. Rooms featured wide open spaces. Hallways were also double wide. An extra big elevator served its two levels. With its open-plan living-dining-kitchen, it had a true family style of living. And true to the Misericordia form, the staff were exceptionally caring and competent.
good, better, best
Jon Lives the Good Life
“Jon’s life continues to be rich and full, and over the years, he has grown in ways I never dreamed possible. He’s busy every single day, and he has the advantages of art and music therapy; physical, occupational, and speech therapy; as well as recreation and leisure activities, such as opportunities to go bowling or take part in Bob & Madge’s sing-alongs. He also regularly spends time in the fitness Center, gym, and pool areas. And somehow, despite his busy life, Jon ‘finds time’ to come home to visit regularly!
a second family
“Misericordia long ago ‘adopted’ both Jon and me into what I consider to be our second family. I love volunteering, spending time with Jon both on campus and at home, and interacting with the amazing staff and the other residents and their families. And as I age, I sleep better at night knowing that Jon has a real ‘home away from home’ where his caretakers genuinely love him and where he is safe and happy. Blessings and my heartfelt thanks to Sister Rosemary, Fr. Jack, Mary Pat O’Brien, and the entire Misericordia staff who work tirelessly to make Jon’s life so happy and healthy!”
That is Cynthia and Jon’s story.
one of many good life stories
What is almost unbelievable, but true, is that Jon’s story is a typical Misericordia story. So, please, if you live in the Chicago area and pass a Candy Days volunteer, drop a donation in their can and enjoy a packet of Jelly Bellies.
You don’t have to live in Chicago to help. Thanks to the internet, Candy Days now has a virtual presence as well. Check out the link below.
Our Virtual Candys Days fundraiser is underway. No need to wait until the last weekend in April to donate!! You can donate now or create your own fundraising page! It’s quick and easy, just visit:
With great glee, I announce the sling has come off and I’m typing again.
So, here’s the first issue of JuleWardWrites for the new year (if you are like me and your year begins when the first flowers pop their heads out of the grass.
Those stories inspired other to write to me with permission to share their own stories of their equally wonderful “Mis” experiences.
Many of the people who love Misericordia are those who volunteer there. Today one of them, Terry Baugh, tells you his story.
hearts and flour
“Misericordia held a warm place in my heart even before I heard about the Hearts and Flour Bakery. My friends, Barb and Dave, had undertaken a long and nearly impossible search to find a nurturing place for their son, Seth, to live. When he was accepted at “Les Mis” as they fondly refer to it, the search ended, and Barb moved to Chicago to be close to Seth. Visiting Barb in Chicago and volunteering at the bakery was a great opportunity for me to catch up with my friend and spend a week working hard and feeling great about every day.”
hairnet? apron? gloves? go!
Volunteering for the bakery at Misericordia was a satisfying experience in giving back for Terry. The bakery is a hub of activity, with experienced bakers and novices, like him. He volunteered in 2019 just before the holidays. Christmas music played in the background and staff and volunteers and residents cheerily greeted each other as new people arrived for their shifts. Got a hairnet or hat? Apron? Gloves? You are ready to go.
just like downtown
The organization of the bakery was–and is — amazing. Every step for baking, cutting, and packaging is well thought out. It was fun to package soda bread, operating a packaging machine just like the bakery downtown. Over the days, Terry was there, he worked on a lot of different stations, but he loved the brownies the most. Bakers mixed large batches of brownies, baked sheets of brownies, and finally flipped them to prepare for cutting into heart shapes. There is a proper technique to getting all the hearts you can out of a sheet and then evenly powdering them with a gentle tap on the sifter. Packaging is always part of the production cycle — stacking the brownies in boxes and sending them on their way to treat a lucky recipient. They are such a delicious and simple treat!
sister rock-star
Beyond all the baking tasks, Terry loved being at Misericordia and seeing the operation. “Sister Rosemary has rock-star status in my book.,” he claims. “The caring staff, the amazing facilities, and the meaningful ways of raising money that Sister Rosemary created to support this amazing facility is something to admire.”
working the line
Besides the unique operations of the bakery, Terry met some lovely people while “working the line”. Weekly regular volunteers, school groups, families whose children were at “Les Mis”, or had passed on, were there helping and sharing wonderful stories. And he loved visiting Seth’s house, his classroom, and meeting his friends and the residents who helped the bakery.
make giving easy
Take a hint from Terry, “if you are looking for a way to give back, a way to spend an extra afternoon or day a week, or a way to open your heart — consider volunteering at the “Les Mis” Hearts and Flour Bakery. They also make gift giving easy. Shop here! ”
For thirty years, our family shared the care of our two of our children, Kristin and Johnny, with Misericordia Home, a residential and learning center for persons with multiple developmental disabilities. Many treasured memories of our family’s time at Misericordia live in my heart, but the ones I remember best are times when its generosity of spirit lit up like a giant Christmas tree.
a giving heart
In 1985, when we took our son John for his first visit to the school, we shared a dinner with a friendly group of fellows in one of the Village Homes. At the end of dinner, one resident pushed back his chair. “I’d like to stay and have desert with you,” he said, “but it’s my night to volunteer at the homeless shelter.” His words solidified my trust that Johnny would find love and empathy among his new housemates.
heart big enough for the entire world
Some years later, the students at the Learning Center engaged in a geography program which focused deeply on one nation each year. Through their studies, they became aware of hunger in the world. This realization heightened the gratitude they felt for the abundance of care they received at Misericordia and motivated them to help those less favored. With their teachers’ help, they organized an on-campus “Walk for Hunger.” Family and friends pledged funds to support the walk.
please, stay off the grass
Johnny’s dad remembers that bright October day as though it happened last week. The residents, staff, and some parents gathered outside the Learning Center. Sister Rosemary gave a rousing opening talk–and then asked the participants to stay off the grass because landscapers had recently seeded the lawns.
the last shall be first
Johnny’s pace was a slow slouch in the best of times. So, his dad had stationed them at what he believed to be the end of the line. But no, at the end of her speech, Sister pointed out the direction of the walk. It put Jay and Johnny at the front! For a while Johnny set the pace, but then Sister broke ranks and walked on the grass to get around him! Soon, everyone followed suit. By the time father and son arrived back at the school’s gym, the organizers were putting away the refreshments. That didn’t matter, the spirit of joy and generosity of the day still lives in my husband’s stories, which he is willing to share with anyone who will listen.
Neither of us ever tires of telling the world how blessed we are to be a part of the Misericordia family.
This won’t be in the memoir even though it completely changed my life.
baby number three
On an unusually mild January morning in 1973, I awoke to the powerful tug of a contraction across my belly. Our third child would be born that day. Jay and I determined we didn’t want to spend the entire day in a hospital. We calmly woke Kristy, age three and a half, and Carrie, age two, and fed them their breakfast. By the time we called Jay’s mother, the contractions were coming closer together. While we waited for their grandmother to arrive and watch the girls for us, I sat in our big oak rocking. Kristy and Carrie nestled around my belly, and I gently sang and rocked to soothe them and myself.
labor at the movies
“Gramma Mary,” as they called her, arrived in a half hour. Jay and I hurried out and went – to the movies. (We didn’t, of course, tell his mom where we were going.) The film Sleuth, with Michael Caine, was playing at the Hinsdale Cinema. Its suspenseful plot let my mind ride above the increasingly intense and rapid contractions. When a contraction started, I’d grip Jay’s hand, he’d look at his watch, time it and whisper the duration to me. The solution to the mystery eluded me, and I was determined to remain until the movie ended. We heard loud whispers in the row behind us. One of which was a shocked, “I think she’s having a baby.”
off to the hospital
Movie over, we sped to the hospital. When the emergency room nurses realized the intensity of the contractions, they summoned the obstetrician. They sent Jay straight to registration and me right into Labor and Delivery.
There, a resident doctor examined me. “She’s nine centimeters and dilating rapidly. Have you called her obstetrician?” he demanded.
“Yes.” a nurse replied. “As soon as emergency informed us they thought she was pretty far along.”
“Good, well, get her husband up here. He can do the paperwork later. This baby is coming now.”
Two interns slid me onto a gurney for the hurried ride to the delivery room. Jay in his heavy khaki overcoat and Dr. Halama, my obstetrician, rushed through doors at opposite ends of the room like a choreographed scene in a stage play. My doctor wore a tuxedo, which the nurses helped him cover with a surgical gown. I laughed, “Where were you?”
And then I gasped in pain. I panted through the contraction, trying my best to keep my breathes even. Jay stood at my side, holding my hand and gripping it so hard it hurt. Hospital regulations had prevented him from being present for Kristy or Carrie’s births, so we had changed doctors and hospitals so that he could witness this one. The enormous pressure in back and lower belly subsided a little. I repeated my question to the doctor.
birth of our party girl
He laughed. “I was at the cocktail hour before a friend’s dinner party. This baby is making me miss out on fresh lobster.”
“In January, that’s ridiculous.” I retorted, and then gasped again. “Count,” I shouted to Jay and tried to pant in rhythm with his slow, “1…2… 3.”
Dr. Halama wheeled his stool over to the bottom of the delivery table. “The baby is crowning,” he said. A nurse stepped to either side of him, instruments I couldn’t see in their hands.
“There’s the head,” he announced. Excitement blocked my sense of pain, but my body contracted and shoved.
“Slow down. Try not to push. I’m easing a shoulder out,” the doctor said.
A nurse turned to me. “I’m sure it’s a girl. She has such a beautiful face.”
Across from her, the other nurse shook her head. “No, look at those broad shoulders. It’s going to be a boy.”
“Just let me push,” I begged. “Then we can settle this.”
“Just a minute. There, got the other shoulder. Good work. Okay, one last push.”
I bore down with all my strength, felt the pressure of the little body sliding down the birth canal, and seconds later, a high-pitched cry filled the room. “You have a girl,” the doctor told us, holding up the screaming, failing little human being.
hello betsy!
“Give her to me,” I demanded. I couldn’t stand to see her cry. They cut the cord, wrapped her in a soft blanket, and laid her next to me. “Hello, Betsy,” I whispered.
Betsy’s birth was the catalyst for an unanticipated upheaval. She and I remained at the hospital for three days. She had been born on Saturday evening at 6 o’clock. On Sunday, Jay brought Kristy and Carrie to the hospital to visit their new sister. They couldn’t visit the maternity floor, but the baby room had windows along a corridor outside the ward. I stood on the other side of the nursery and watched as the nurse rolled Betsy’s bassinet up to the window, lifted her out, and showed her to the toddlers on the other side. The tiny bundle instantly fascinated Kristy, but Carrie caught sight of me. She lifted her arms and wailed, “Mommy.”
a trip to the zoo
To distract Carrie, Jay took the girls on an excursion to the Lincoln Park Zoo. It was unusually mild for a Chicago January that week. Going to the zoo was a logical choice of diversion. The Brookfield Zoo, however, was much closer to our home in Western Springs. Still, Jay drove to the Chicago Loop and then north to Lincoln Park. He wanted to take his children to the city zoo, the one that held many fond memories of our pre-suburban days.
As far as I know, they had a wonderful time, but I never really heard about the zoo at all because what followed was much more momentous. On the way back to where he had parked our car, Jay passed a “For Rent” sign in the window of a building that sat on the south edge of Lincoln Park. It stopped him cold.
When he and I had frequented the Zoo in the early years of our marriage, we always admired these stately buildings that lined the south end of Lincoln Park. He couldn’t resist taking a peek. He fell in love with the apartment and discovered, much to his surprise, that the rent was in our price range. Wheels started turning in his head.
Jay has questions
That evening, he left the girls with his mom and rushed to the hospital, full of his discovery. Betsy and I had spent a quiet day. She was a champion nurser, and I knew enough about breastfeeding by then to let her nurse at will. Well rested and feeling at ease with the world when he arrived, I listened calmly as his story burst forth. He finished with, “I want you to see this place. It is unbelievable!”
By the following Saturday, one week later, I was exhausted. Jay’s mom had returned home. He was back at work. Juggling the needs of three small girls was exponentially harder than caring for two little ones.
Jay had made an appointment for us to view the city apartment that afternoon. Tired as I was and as crazy as it seemed to take three small children, one merely a week old, out into the rapidly dropping temperatures of a Chicago winter, I needed to get out of the house. Any excuse would do. The ride would entertain the girls, and I could nurse the baby on the way to the city. As we sped east on the Eisenhower Expressway, it was with growing excitement that I watched the skyscrapers of Chicago’s Loop fill the horizon. We swung around Buckingham Fountain. Its ornate sculpture encased in ice delighted Kristy and Carrie. While we drove north along Lake Shore Drive, they both pressed their little noses against the window to watch the crashing waves of the winter lake.
The rental agent waited for us at the central door of the apartment complex. There was no elevator, but the apartment was on the first floor. Its spaciousness overwhelmed me. Twice as large as our home in Western Springs, it had twelve-foot high ceilings in every room but the kitchen. The rooms included a formal library with its own fireplace. Painted buckled on walls. The kitchen appliances were decisively vintage. Doors squeaked on their hinges. The bathroom floors had cracked tiles–but there were three bathrooms!
But I questioned. Why are we here? We have a home. We’re settled, right? Betsy had been whimpering throughout the tour. Kristy and Carrie ran from one empty room to the next as though in a gymnasium. Without warning, the noise, or maybe my increasing uneasiness, got to Betsy. She let out a loud, piercing wail.
“We have to go,” I told Jay.
“We’ll get back to you,” he promised the agent.
the choice we didn’t see coming
We rode back to Western Springs in silence. After dinner, Jay walked across the living room floor singing to Betsy while I gave the girls their bath and got them to bed.
Once I returned to the living room, I settled in a huge armchair, a Salvation Army find, so comfortable that we still have it today. I nursed Betsy off and on over the next two hours. Jay made us cocoa. And we talked. We relived every detail of the apartment and imagined how we would live there, how each room would function for us, how we could decorate it. Our imagination pictured living in the city again, close to the zoo, the park and the lake. Jay spoke of how easy it would be to get to work.
What was holding us in Western Springs? We definitely didn’t plan to stay for the rest of our lives. But didn’t we need to stay in the suburbs for the sake of the excellent schools? Maybe. We had just assumed that, hadn’t we? Kristy was only three, two years away from kindergarten. That gave us plenty of time to explore the city school situation.
By ten o’clock, we were ready to move. “I’ll call the agent in the morning,” Jay said. But when he called the next morning, the rental agent told us another family had rented the apartment late Saturday evening. That stunned us both. I fixed breakfast in silence. He hunched over his scrambled eggs and bacon. I held Betsy in the crock of one arm so I could nurse while I encouraged Carrie to eat some eggs from a spoon. Kristy pushed her eggs around in patterns on her plate.
When he finished, Jay sat straight up in his chair. “It wasn’t about the apartment–not really. We’re still moving back to the city, right?”
Photo by Ron Lach on Pexels.com
Our New Home
Lots of kids; lots of stuff
Evie, Betsy, Kristy & Carrie at 515 Belden
Jon Lives the Good Life
Here Comes Candy Days!
Almost too good to eat
Jay and Johnny in Mis Greenhouse Restaurant.
