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.

Like, But Different From

writers are like, but different from actors

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

my memoir-like, but different from other memoirs

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

what publishers want

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

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

like a best seller, but different

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

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

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

ying/yang of endure

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

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

an example of the universal

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

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

 

Rainbow over Misericordia

 

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

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!

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.

Life Comes Full Circle

Israeli rooftops

My favorite guest blogger, intrepid world traveler, Nancy Louise, shares a favorite story with us this week.

a half-century ago

Fifty-one years ago my newly minted husband, and I took off on a month long round-the-world honeymoon courtesy of a Trans World Airlines interline rate of $98 each!

I had been working in the airline industry; my husband, Frits, was working for a tour wholesaler designing tours to Europe and the Middle East.

Our third stop on the journey was Israel. I had traveled a bit in Europe… but this was my first time to venture further. I was 24 years old and having grown up in the Bible Belt of the South in the US — I had never even met a Jew — much less a Muslim. Or a Palestinian.

overcoming naivete

My entire “understanding” of Israel was based on Leon Uris novels and gorgeous Paul Newman playing the lead in the movie, “Exodus”.

Frits had a business contact, Emil, in Israel and had written him (yes, an actual letter in the mail!) asking him to make us a hotel reservation. We arrived in Tel Aviv on New Year’s Eve of 1971.

Emil was there at the airport to meet us. He informed us we would not be staying at a hotel. We were going to stay with his family!

Emil lived in Jerusalem near the top of the Mount of Olives (next door to the Papal delegate). We pulled into his yard, which overlooked the Old City just at midnight as the bells of Churches pealed out the New Year. It is a treasured memory.

We stayed five days with Emil and his wife,Um Hani Abu-Dayyaeh. Emil gave us our own private tour guide, driver and car with Palestinian license plates. It was an eye-opening experience. Our guide, Mohammed, was a Palestinian Muslim who knew the Christian sites and their meaning better than most Christians did. With our Palestinian license plates, the Israeli military stopped us every half hour for “security” purposes. Mohammed also had to caution us frequently on taking photos of anything thing or person who could be construed as our “spying” on the Israelis. We were quite oblivious.

Emil and Um Hani also took us to a Palestinian Refugee camp—a sobering sight that I would never forget.

struggle to survive

In the evenings Emil and his wife shared with us their lives and struggles to live in a country that had been Palestine when they were born—- and was now Israel. Emil had sent his two sons to study in the United States to keep them out of the constant conflict between Israel and Palestine. That had been a painful decision, but one he felt necessary for their safety.

The family had lost everything in 1948 and again in the “Six Day War”of 1967. In January of 71 when we visited — Emil was unsure if his once more struggling tour company would survive. He and his wife were Christians—Lutherans — specializing in Christian Pilgrimages. And tourism hugely depends on the stability of the country.

Frits continued to work with Emil for the next two years, but then we moved from Michigan to Chicago, Frits joined KLM Airlines, and we lost contact with Emil.

many returns but no re-encounters

Over the years I have returned to the Holy Land a half dozen times mostly as a Tour Director, which allowed me no private time to hunt up the Abu-Dayyaeh family.

Now retired, I thought I had done my last tour of Israel. I was, however, persuaded in the summer of 2022 to join friends through Loyola University to come back for one last visit—a full-fledged pilgrimage.

Our itinerary was to include a dinner with students from a Palestinian University and a group of Palestinian Lutherans. My thoughts went back to that first trip and Emil and Um Hani. Their first names were the only ones I remembered. I thought, “How big could the Lutheran Palestinian community be in Israel?” I knew Emil had most probably gone “home to God” by now. It had been fifty-one years ago—and Emil had been well into his 50s when I met him. I wondered though if anyone would remember this hard-working, dedicated man and his family. So I texted Frits and asked him for the name of the fledgling company that Emil had started. Frits responded, “Near East Tours”.

an extraordinary coincidence

I was standing beside my tour bus when I got the text. And there in BIG letters on the side of the bus were the letters “NET”. I went up to our driver, Haseem, also wearing a shirt emblazoned with “NET” and asked him if “NET” stood for Near East Tours. He replied. “Yes it does!”
“And was the founder named Emil? ”
Haseem confirmed that Emil’s company was now owned by the two sons. One son, Hani, would be at the dinner that evening.

Hani and I had dinner together at our special gathering that night. I regaled him with my memories of that first Holy Land visit courtesy of his family—and how that eye-opening journey profoundly impacted my life and would lead me to be involved for many years in Interfaith endeavors with a group called “Soul Space,” of Jewish, Muslim and Christian women — with a mission of sharing the commonalities of our faiths through mini-retreats.

Hani informed me that his Mom, Um Hani, was still very much alive. Indeed, she had worked every day in the office until Covid hit! And at 96 she still lived independently in that same house where we had stayed.

full-circle experience

I asked Hani if she was still up to having visitors. I wanted to thank her for that life-changing visit so long ago. He called her there and then… and the next afternoon our driver, Haseem, took me in his own car up for a visit. When Haseem dropped me off, I told him I would probably only be a half hour. After all… she was 96 years old! When he returned… Um Hani had barely gotten started! Haseem joined me — and we sat riveted, listening to the stories of the very long life of this remarkable woman. Near East Tours had not only survived — it had thrived — expanding throughout the Mediterranean — to such places as Greece, Turkey, and Egypt.

It has been a “full-circle” life event for me. My first… and what for sure will be my last visit to the Holy Land impacted so much by this wonderful family.

I have long treasured these words from Mark Twain: “Travel is fatal to prejudice, bigotry, and narrow-mindedness” That journey was my first proof of Twain’s truth.

Over the years, Nancy’s friends and family have urged her to record her experience as a memoir. She has had so many, she feels she doesn’t know where to start.  I think the theme of “Then and Now” could be a wonderful organizer for her writings. Let us know in the comments if you agree.

The Value of Community

Together
Idea of community

Everyone’s support system looks different. Thus, what defines ‘community’ for me may not at all resemble your idea of community. We do, however,  share a common need for a community of some sort. We cannot survive without it. Sometimes our community can be as small as one other caring person who sees us through a particularly tough, but very private time. At other times, we need the support of a much broader group of people.

seeking support

Ironically, many of us believe that we should be able to cope with life’s challenges on our own. We hesitate to look for help or seek group support.

community of mothers

That was true for me through many of the earlier years of caring for my children with special needs. It wasn’t that I didn’t know the value of community. In fact, I totally immersed myself in the community of La Leche League, an international association of breastfeeding mothers.  We supported one another by gathering together and sharing information via phone calls, letters, books, and a formal newsletter.

Within that group my awareness of how important peer support could be grew and solidified. Many of the mothers I knew in LLL would never have been able to breastfeed without the help of the group. Others would have felt isolated by their choice to breastfeed at a time when most babies were bottle fed. Instead, they found comradery and a sense of purpose.

without community support

Yet, this dependence on community did not, for me, carry over into coping with the multiple challenges I encountered as I tried to provide the best life possible for my two children with increasingly serious intellectual disabilities. I never sought out a support group of other parents with the same challenges. In that endeavor, for reasons I cannot explain, I felt compelled to handle my struggles on my own. I did my best to present to the world a picture of a mother who had it “all together.” Yet, every day the weight of my responsibilities sunk my soul in a sea of overwhelming despair.

community finds me

I did not drown, however, because even though I didn’t seek community, it found me and saved me from isolation and alienation. At first, those who reached out did not have children with special needs but all the same, they empathized with me because every parent has struggles and times they cannot cope. Even when I didn’t ask for help, they offered it because in the real world people have no choice. We are compelled to build community because we are survivors.

two-mother community

So many people gifted me in this way along the way, it would be impossible to name them all, but some folks stand out because they threw a lifeline at a time I might have otherwise disappeared below the raging waters.

First in line are the many young women who took time out of their own life to join our family as second mothers to my children. They made it literally possible for me to get through the day without collapsing. Beyond that, as strong young women not afraid to take on the hard task of caring for children with intellectual disabilities and seizures while at the same time they pursued their own important goals, they provided a myriad of role models for my daughters as they grew up. My heart sings today because several of those women now mothers, even grandmothers, themselves remain in touch with me.

lessons in community

Although our middle daughters, Betsy and Carrie, did not have to cope with intellectual disabilities, they did have the challenge of growing up in a family with siblings with special needs.  My openness to the help of these young women showed them that asking for help is okay, a valuable lifelong lesson.  I have seen as they grew into capable women that they not only know how to ask for help when they need it but they are also very attuned to helping others when they see those people struggling.

neighborhood community

Neither my wonderful mother’s helpers nor I would have thrived as well as we did if we had not lived in the wonderfully tight-knit neighborhood, the Seminary Townhouse Association. Within the heart of Chicago, this enclave of fifty-two homes functioned like a small village. We knew all our neighbors and they knew us.

The neighborhood had long-standing traditions of group festivities that included a bike parade and a talent show. Neighbors welcomed our entire family at these gatherings. These gentle folks understood Kristin and Johnny’s special needs and accommodated them without a fuss. The alleys of the association were more like village streets and in the center of our enclave was a huge green.

Up and down the alleys and over the green, children of all ages played together every day at every hour.  Mothers gathered on porches with mugs of coffee to watch the youngest kids. Jay’s walk every evening from the “L” stop at Fullerton Avenue to our home at the opposite corner of the complex often took him a half-hour because he chatted with almost all the neighbors over their back fences. Only in retrospect, I am able to truly appreciate the emotional protection living in the “Seminary” cocoon afforded me.

supporting the community

Being a part of such a strong community not only created an ongoing sense of support for me, it also made it possible for me to provide support for others. I didn’t need to always be the needy one. I could care for a neighbor’s child after school. Providing meals for a sick neighbor was an ongoing mission for me.

Being a part of the committees that planned our group events let me use my creative and organizational skills. In La Leche League I helped to plan and direct their twenty-fifth-anniversary convention. Because I could see how important these contributions were, they enhanced my sense of my own value at a time when our struggles to find a remedy for Kristin and Johnny’s increasing medical needs had hit a brick wall.

most important community

As the years went by these opportunities built strengths and skills. For which we were grateful when we participated in our most important community, Kristin and Johnny’s adult home, Misericordia.

Exuberant play
Photo by Artem Kniaz