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

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.”

The Good Life

Candy Day volunteers get ready to got out and beg.
candy on a mission

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 loves everyday at Misericordia
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:

Donate to Sister Rosemary’s page: https://secure.frontstream.com/misericordia-candy-days-2023/participant/SrRosemaryConnelly

Set up your own fundraising page: https://secure.frontstream.com/misericordia-candy-days-2023

https://secure.frontstream.com/misericordia-candy-days-2023/

 

Candy Days Banner
Here Comes Candy Days!

Bringing Back the Blog

Heart-shaped loaf of bread
happy spring

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.

where i left off

My last post shared a couple of poignant vignettes about our son John and his experiences at the wonderful residential facility for persons with physical and developmental disabilities, Misericordia Home.https://julewardwrites.com/committed-relationships/truly-a-heart-full-of-mercy

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 information about volunteering at Misericordia click here -> https://www.misericordia.com/volunteer/get-involved/

Heart shape in powdered cookie
Almost too good to eat

Truly, A Heart Full of Mercy

Johnny reads during the speeches.
bright memories

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.

 

Johnny has a party in the Mis greenhouse restaurant.
Jay and Johnny in Mis Greenhouse Restaurant.

A New Baby Ushers in an Unexpected Change

Newborn Betsy and Jule in hospital

This won’t be in the memoir even though it completely changed my life.

baby number three

On an unusually mild January morning in 1973, I awoke to the powerful tug of a contraction across my belly. Our third child would be born that day. Jay and I determined we didn’t want to spend the entire day in a hospital. We calmly woke Kristy, age three and a half, and Carrie, age two, and fed them their breakfast. By the time we called Jay’s mother, the contractions were coming closer together. While we waited for their grandmother to arrive and watch the girls for us, I sat in our big oak rocking. Kristy and Carrie nestled around my belly, and I gently sang and rocked to soothe them and myself.

labor at the movies

“Gramma Mary,” as they called her, arrived in a half hour. Jay and I hurried out and went – to the movies. (We didn’t, of course, tell his mom where we were going.) The film Sleuth, with Michael Caine, was playing at the Hinsdale Cinema. Its suspenseful plot let my mind ride above the increasingly intense and rapid contractions. When a contraction started, I’d grip Jay’s hand, he’d look at his watch, time it and whisper the duration to me. The solution to the mystery eluded me, and I was determined to remain until the movie ended. We heard loud whispers in the row behind us. One of which was a shocked, “I think she’s having a baby.”

off to the hospital

Movie over, we sped to the hospital. When the emergency room nurses realized the intensity of the contractions, they summoned the obstetrician. They sent Jay straight to registration and me right into Labor and Delivery.

There, a resident doctor examined me. “She’s nine centimeters and dilating rapidly. Have you called her obstetrician?” he demanded.

“Yes.” a nurse replied. “As soon as emergency informed us they thought she was pretty far along.”

“Good, well, get her husband up here. He can do the paperwork later. This baby is coming now.”

Two interns slid me onto a gurney for the hurried ride to the delivery room. Jay in his heavy khaki overcoat and Dr. Halama, my obstetrician, rushed through doors at opposite ends of the room like a choreographed scene in a stage play. My doctor wore a tuxedo, which the nurses helped him cover with a surgical gown. I laughed, “Where were you?”

And then I gasped in pain. I panted through the contraction, trying my best to keep my breathes even. Jay stood at my side, holding my hand and gripping it so hard it hurt. Hospital regulations had prevented him from being present for Kristy or Carrie’s births, so we had changed doctors and hospitals so that he could witness this one. The enormous pressure in back and lower belly subsided a little. I repeated my question to the doctor.

birth of our party girl

He laughed. “I was at the cocktail hour before a friend’s dinner party. This baby is making me miss out on fresh lobster.”

“In January, that’s ridiculous.” I retorted, and then gasped again. “Count,” I shouted to Jay and tried to pant in rhythm with his slow, “1…2… 3.”

Dr. Halama wheeled his stool over to the bottom of the delivery table. “The baby is crowning,” he said. A nurse stepped to either side of him, instruments I couldn’t see in their hands.

“There’s the head,” he announced. Excitement blocked my sense of pain, but my body contracted and shoved.

“Slow down. Try not to push. I’m easing a shoulder out,” the doctor said.

A nurse turned to me. “I’m sure it’s a girl. She has such a beautiful face.”

Across from her, the other nurse shook her head. “No, look at those broad shoulders. It’s going to be a boy.”

“Just let me push,” I begged. “Then we can settle this.”

“Just a minute. There, got the other shoulder. Good work. Okay, one last push.”

I bore down with all my strength, felt the pressure of the little body sliding down the birth canal, and seconds later, a high-pitched cry filled the room. “You have a girl,” the doctor told us, holding up the screaming, failing little human being.

hello betsy!

“Give her to me,” I demanded. I couldn’t stand to see her cry. They cut the cord, wrapped her in a soft blanket, and laid her next to me. “Hello, Betsy,” I whispered.

Betsy’s birth was the catalyst for an unanticipated upheaval.
She and I remained at the hospital for three days. She had been born on Saturday evening at 6 o’clock. On Sunday, Jay brought Kristy and Carrie to the hospital to visit their new sister. They couldn’t visit the maternity floor, but the baby room had windows along a corridor outside the ward. I stood on the other side of the nursery and watched as the nurse rolled Betsy’s bassinet up to the window, lifted her out, and showed her to the toddlers on the other side. The tiny bundle instantly fascinated Kristy, but Carrie caught sight of me. She lifted her arms and wailed, “Mommy.”

a trip to the zoo

To distract Carrie, Jay took the girls on an excursion to the Lincoln Park Zoo. It was unusually mild for a Chicago January that week. Going to the zoo was a logical choice of diversion. The Brookfield Zoo, however, was much closer to our home in Western Springs. Still, Jay drove to the Chicago Loop and then north to Lincoln Park. He wanted to take his children to the city zoo, the one that held many fond memories of our pre-suburban days.

As far as I know, they had a wonderful time, but I never really heard about the zoo at all because what followed was much more momentous. On the way back to where he had parked our car, Jay passed a “For Rent” sign in the window of a building that sat on the south edge of Lincoln Park. It stopped him cold.

When he and I had frequented the Zoo in the early years of our marriage, we always admired these stately buildings that lined the south end of Lincoln Park. He couldn’t resist taking a peek. He fell in love with the apartment and discovered, much to his surprise, that the rent was in our price range. Wheels started turning in his head.

Jay has questions

That evening, he left the girls with his mom and rushed to the hospital, full of his discovery. Betsy and I had spent a quiet day. She was a champion nurser, and I knew enough about breastfeeding by then to let her nurse at will. Well rested and feeling at ease with the world when he arrived, I listened calmly as his story burst forth. He finished with, “I want you to see this place. It is unbelievable!”

By the following Saturday, one week later, I was exhausted. Jay’s mom had returned home. He was back at work. Juggling the needs of three small girls was exponentially harder than caring for two little ones.

Jay had made an appointment for us to view the city apartment that afternoon. Tired as I was and as crazy as it seemed to take three small children, one merely a week old, out into the rapidly dropping temperatures of a Chicago winter, I needed to get out of the house. Any excuse would do. The ride would entertain the girls, and I could nurse the baby on the way to the city. As we sped east on the Eisenhower Expressway, it was with growing excitement that I watched the skyscrapers of Chicago’s Loop fill the horizon. We swung around Buckingham Fountain. Its ornate sculpture encased in ice delighted Kristy and Carrie. While we drove north along Lake Shore Drive, they both pressed their little noses against the window to watch the crashing waves of the winter lake.

The rental agent waited for us at the central door of the apartment complex. There was no elevator, but the apartment was on the first floor. Its spaciousness overwhelmed me. Twice as large as our home in Western Springs, it had twelve-foot high ceilings in every room but the kitchen. The rooms included a formal library with its own fireplace. Painted buckled on walls. The kitchen appliances were decisively vintage. Doors squeaked on their hinges. The bathroom floors had cracked tiles–but there were three bathrooms!

But I questioned. Why are we here? We have a home. We’re settled, right? Betsy had been whimpering throughout the tour. Kristy and Carrie ran from one empty room to the next as though in a gymnasium. Without warning, the noise, or maybe my increasing uneasiness, got to Betsy. She let out a loud, piercing wail.

“We have to go,” I told Jay.

“We’ll get back to you,” he promised the agent.

the choice we didn’t see coming

We rode back to Western Springs in silence. After dinner, Jay walked across the living room floor singing to Betsy while I gave the girls their bath and got them to bed.

Once I returned to the living room, I settled in a huge armchair, a Salvation Army find, so comfortable that we still have it today. I nursed Betsy off and on over the next two hours. Jay made us cocoa. And we talked. We relived every detail of the apartment and imagined how we would live there, how each room would function for us, how we could decorate it. Our imagination pictured living in the city again, close to the zoo, the park and the lake. Jay spoke of how easy it would be to get to work.

What was holding us in Western Springs? We definitely didn’t plan to stay for the rest of our lives. But didn’t we need to stay in the suburbs for the sake of the excellent schools? Maybe. We had just assumed that, hadn’t we? Kristy was only three, two years away from kindergarten. That gave us plenty of time to explore the city school situation.

By ten o’clock, we were ready to move. “I’ll call the agent in the morning,” Jay said. But when he called the next morning, the rental agent told us another family had rented the apartment late Saturday evening.
That stunned us both. I fixed breakfast in silence. He hunched over his scrambled eggs and bacon. I held Betsy in the crock of one arm so I could nurse while I encouraged Carrie to eat some eggs from a spoon. Kristy pushed her eggs around in patterns on her plate.

When he finished, Jay sat straight up in his chair. “It wasn’t about the apartment–not really. We’re still moving back to the city, right?”

I smiled and nodded.

photo of buildings
Photo by Chait Goli on Pexels.com

Some Sneak Previews

Jule and Johnny in the yard

For the last eighteen months, I’ve been inviting you to come along as I struggle to write a memoir. The memoir focuses mostly on the challenges and special joys of parenting my two children with disabilities. But I cannot isolate those experiences from the rest of my life.

I must, however, limit the number of pages-and, therefore, the number of tales I tell. Twenty original chapters slimmed down to twelve as I came close to the final version. So, some of those tidbits will appear as blog posts here on “Jule Ward Writes.” As the final version of the memoir shapes up, you and enjoy these vignettes. Maybe they will even whet your appetite for reading the book when I publish it.

To Be A Dolphin

“When I grow up, I want to be a dolphin,” my three-year-old son stated emphatically as I read him a picture book about adult occupations. Me, too, I thought, oh, me too!

Although thirty-eight years old and the mother of four young children, I still wondered when I would grow up. When would my real life begin? Could I possibly wake up and this nightmare I had stumbled into be over? I hugged his sturdy, warm body against my chest, rested my chin on his soft curls, and gazed into our little side garden. His sisters would return from school in an hour. From then until bedtime, a sort of low-key chaos would fill our old Victorian rowhouse. And that was the best-case scenario. That was if no one–not me, not my little boy, and not his oldest sister Kristy had a seizure.

epilepsy reality

If one of us went down, the chaos spiraled down into pandemonium. All other activity ceased. And God help us if there was soup boiling on the stove or a bathtub filling with bubbles. That couldn’t matter. First, turn the seizing person to their side, so they didn’t choke on their own saliva. Then, slip something soft under their head to avoid nasty bruises, and grab a clean towel if they were bleeding. Next, loosen their clothing so they could breathe a little easier. And wait. Wait until their limbs stopped flailing, their eyes returned to the center of their sockets, and their breath slowed to a more normal pace. And wait some more. Wait until they could get to a chair or bed to rest and come back to us, wake up, confused and sleepy, but ultimately fine. Or so we hoped.

On this autumn afternoon in 1980, my toddler son and I squeezed together in a singularly uncomfortable mesh and metal lawn lounger; his chubby legs anchored mine in place. A dozen large, hardcover books covered our laps. Johnny’s favorite, “Oh, What a Busy Day!” lay open to a page where winsomely drawn children imagined themselves as doctors, ballerinas, sailors, chef, and other sundry paying occupations. Clearly my son found the imagination of the illustrator quite limited as he announced, “When I grow up, I want to be a dolphin.”

never grow up

I nuzzled my nose into his yellow gold curls and thought, “And why not?” Deep between my heart and lungs lodged the certainty that evolving into a sea creature might be the only way I could keep from drowning in the reality of my everyday life.

I lived my here and now as a bizarre paradox. To an outside observer, it would seem I lived the life of a typical late twentieth-century middle-class, stay-at-home mom. Yet, every day, I woke up in terror that I lacked the resources to fulfill my role.
An illusionist, a trickster, I pulled coping mechanisms out of my ringmaster’s hat, creating a chimera of a brave, but beautiful life. I may have wanted to cry out, “I’ll never make it out of here alive,” but I said, “I’ve got this. It’s not that different from anyone else’s life, not really.”

brave front

My false optimism persuaded far too many people that I didn’t need their help, didn’t want their solace, would hate their compassion. There is no such thing as “normal,” I convinced myself. Everyone’s life has challenges. Everyone had to cope. I never wished to be someone else, to have a different life, to have different children. Rather, I yearned to live this life with as much savoir faire as everyone thought I did.

“Earth to Mom.”

Oh my God, the girls were home from school. I hadn’t heard them come through the back gate. Johnny had drifted to sleep in my arms, undoubtedly dreaming of dolphins.

“Kristy’s bus will be here soon, Mom,” Carrie’s voice broke into my reverie.

I carefully slid Johnny’s plump, warm body onto the chaise lounge. “Stay with him. I’ll go meet the bus and then we can have snacks.”

Back to reality, whatever that was.