Memories Make the Heart Sing

Gramma Peggy reads to Johnny and Kristy at Devil's Lake
My Heart Sings

Today is Mother’s Day, a special day for hundreds of families, one that is marked by celebrations and memories. For almost five decades, Mother’s Day was a three-way celebration in our family because two of our children, Kristin and Johnny, had birthdays, May 11 and May 14, that, if they didn’t fall on Mother’s Day itself, came close to it.

three celebrations

So today, even more than most days, memories of Kristin and Johnny flood my consciousness and make my heart sing. Yes, as we attempted to provide the best life possible for those two extraordinary people, we encountered many struggles and challenges. However, their charm filled the struggle with joy and laughter. Today I’d like to share with you the funny and lovable facets of Kristin and Johnny’s personalities that are my most vivid memories of them.

heart filled with love

From infancy, Kristy was incredibly affectionate. There wasn’t anyone she wasn’t ready to love. No one was a stranger to her. So apt was she to cuddle up with any friendly human, so we had to guard her carefully. For her family, however, she had a deeper abiding love. She welcomed each new sibling into the family with great joy and extended that fondness to all babies. Her grandmothers were special favorites of hers. It was easy to motivate her into action by saying, “We’re going to see Gramma.”

an original flower child

Kristin was the original flower child. She loved every flower that ever grew, even those the rest of us might call weeds. Any walk with Kristy went at the pace of flower-picking-or smelling or picking up litter. It took patience to teach her to leave cigarette butts where they lay.

Kristy helps Mom write.
Kristy helps Mom write.
my good girl

She learned at a young age that other people’s gardens were not hers to plunder. And Kristy was not anything if not a good girl. In fact, she took pride in this. If scolded, she would give you a distressed look, saying, “I’m a good girl.” It distressed her to think she might have made you unhappy and immediately wanted to make it okay. Fortunately, she always had her stuffed, pink, wind-up lullaby doll. In any tough circumstance, “Lullaby,” as she called her, could always soothe Kristy.

purple, chocolate & crunchy

Passionate describes her best. Kristy never simply liked something. She LOVED it. She was so fond of purple that she preferred that every article of clothing in her wardrobe be some hue of that rich, deep color. To say that chocolate was her favorite flavor is a vast understatement. Kristy’s ideal world would comprise all foods being concocted from some form of chocolate. She did, however, make the exception for potato chips and pretzels. “Oh,” she would exclaim as she bit into one, “It’s crunchy!” as though crunch were the ultimate gourmet criterion.

a natural artist

Everyone who knew Kristy knew that her deepest passion of all was for art.Kristy is her Aunt Beth's flower girl. From the time she could first hold on to a crayon at age nine months until the debilitating course of her disorder took its full toll, she spent hours of everyday painting, coloring, or drawing. Hers were true abstracts, expressions of her thoughts, feelings, and impressions of the world untutored by art lessons. At one point, her paintings papered an entire three-story staircase in our home.

As her sister Betsy said at Kristy’s memorial, what Kristy would wish for the rest of us is that we would see the world as the beautiful place it was for her.

laughing at nightmares

Memories of Johnny have an equally gleeful, but utterly different, tone to them. For one thing, Johnny had no interest what so ever in being a “good boy.” He simply wanted to go on whatever adventure come into his mind at a given moment, even if it meant totally abandoning what you expected of him. If scolded, he laughed. It had been a great joke for him. He also regularly laughed out loud in his sleep. I always speculated that he was having nightmares, but they didn’t frighten him. Rather, he found hilarious whatever monsters peopled Johnny climbs constructionthose dreams.

no, you, broph!

Johnny also like to pretend he was some other being like one of those monsters. And if he was Grover for an hour, he only responded to “Grover” not to his own name, although sometimes he’d help you out by saying, “Not Johnny-Grover.” He had lots of fun with the name game. His middle name was Brophy after a paternal great-grandfather, so his Uncle Mike often called him by his middle name. Johnny would turn on him and say, “Me not Broph, you Broph.,” and then the two of them collapsed into laughter. It went on for years. One time I visited his kindergarten class with him, and a janitor walked through the class. The man resembled Mike and Johnny called out, “Hey, Broph!”

Maria! Maria! Maria!

Johnny was a preschooler when I cared for a little girl after school named Maria. When Johnny’s dad came home, Jay would sing from the front door, “Maria, I just met a girl named Maria, and suddenly it’s the most beautiful sound in the world.” Then Johnny would take up the chant, “Maria, Maria, Maria.” In fact, it is how he always greeted that little girl (now an actress on Broadway in her own right.)

their private world

I never knew the origin of another name game he had going with a young woman who lived with us while she attended De Paul University. But Johnny would come home from school and call her “You goose,” and she giggled and retorted, “No, you’re the goose,” and he’d come right back at her. They created their own private world. He had a way of doing that because his smile, along with the twinkle in his eyes, lit up a relationship.

no ketchup!

Johnny loved to eat and ate just about everything. I didn’t even know that he liked fish because I never cooked it at home. Then at a restaurant one evening, I ordered a shrimp cocktail, and he got a gleam in his eyes and said, “Fish!” He ate the whole thing. And he’ll be forever famous for eating the entire platter of taramosalata at his friend Sean’s thirtieth birthday party. What he didn’t like was ketchup. He wouldn’t even start the meal if it was on the table. His disdain for ketchup stretched to all red sauces so that, as much as he loved salads, he

Johnny with his banks
Johnny loved piggy banks.

wouldn’t eat one if it had French dressing.

pizza pie

He loved pizza, which he called “pie.” And here again his natural charm stood him in good stead. He had once gone with us to Due’s Pizzeria and shown such utter delight in his meal that from then on whenever Jay and I ate there if we didn’t have Johnny with us, our favorite waitstaff, Mickey, sent home a free pizza for Johnny. Like I said, he had a way with people.

let him eat cake!

A culminating example happened when I wasn’t home. Normally, Johnny didn’t like sweets and never ate dessert. Yet, one afternoon, out of the clear blue, he sat himself down at the breakfast room table and declared, “Chocolate cake.” His sister Carrie and her friend Loren were the only ones home.

They couldn’t find cake or the makings for one in the house. So Loren entertained Johnny while Carrie went to the store. When she returned, the two of them baked and frosted a chocolate cake. Johnny remained patiently at the breakfast room table the whole time. Finally, they put an enormous piece in front of him. He gobbled it down, asked for milk, and went off to play. He may have had another piece. I don’t know. You’ll have to check with Carrie on that.

With these vignettes, I gift you, dear readers, and wish you a

Very Happy Mother’s Day.

Baby Johnny at the beach
Always that sunshine smile
Kristy in a bubble bath
Don’t drink the soap.

Perplexity of Responding to Condolences

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

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

responding to sympathy

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

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

cardboard words

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

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

fragile facade

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

extended condolences

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

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

rare & foreign experience

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

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

what’s enough?

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

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

reciprocal condolence

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

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

ongoing witness

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

A last summer at Belden

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

 a

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.

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!

The Value of Community

Together
Idea of community

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

seeking support

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

community of mothers

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

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

without community support

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

community finds me

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

two-mother community

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

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

lessons in community

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

neighborhood community

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

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

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

supporting the community

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

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

most important community

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

Exuberant play
Photo by Artem Kniaz

Christmas: Lost & Found

Our 2021 Christmas tree
Best Laid Plans . . .

A holiday-themed blog post was the last thing on my mind when I planned my post for this week.

In keeping with my blogging premise for this year, I had intended this week’s post to continue chronicling my journey toward writing a memoir. In fact, this would have been the triumphal post in which I announced that I had finished a complete draft of the memoir after five separate attempts.

Versions one through four next got past ten chapters, but now I had finally pushed through to the end of the narrative. Yes, I would admit, the really challenging work came next – “Killing my darlings,” the dread of every writer, but a particular horror for memoirists. Her “darlings” are real people and the way things “truly happened.” Unfortunately, that by itself does not justify putting them in a memoir. Time to edit. Now, however, I had an actual document to edit.

This time, last year

Before I could begin that worthwhile endeavor, however, our family Christmas fell apart. It feels so much worse than last year. For months before it arrived, we knew that Christmas, 2020, would be a “no show.”  As elders, isolated from the world at large and our family, in particular, my husband and I convinced ourselves that Christmas for just the two of us could be “romantic.” We lit the fireplace, dimmed the lights, and exchanged gifts (okay, I gave him a gift; Jay is not that good at gift-giving and usually relies on the kids to fill up my stocking.).

At mid-morning, we tuned in to the Portal and had an “online” Christmas exchange with our children and grandchildren. We felt grateful for the technology that brought their faces and voices to us – if not their presence. We then settled down to watch “Mary Poppins (the original one) on television, a movie we had first viewed on our honeymoon. As we turned out the lights that night, we congratulated ourselves on making the best we could of an unbelievably tough situation and went to bed convinced that Christmas, 2021 would be a much better and more traditional experience.

deja vu, all over again

It should have been, but it was not. Our daughter Betsy and her family arrived in Portland from Boston a week ago Monday to join her sister Carrie’s family as well as my husband and me for a week of Christmas celebrating. A small cloud hung over them as they arrived. Our grandson Bryce had only just found out he had been exposed to Covid-19 the night before.

Our daughters immediately canceled plans for a full family gathering until Bryce could be tested three days after exposure. We all were sure he would be negative, but the theme of “keep the elders safe” prevailed. Our certainty was ill-founded. Bryce did, indeed, contract Covid. He had to isolate himself from the entire family. Even worse, because they had all been with him until his test, our daughters, sons-in-law, and granddaughter now felt compelled to avoid contact with us.

the breaking point

To add a cherry to this unsavory sundae, they also begged us not to go to church. Being able, this Advent to celebrate the sacred season once again with the community of faith had been a boundless joy. Now, once again, we must remain at home even though our parish would be celebrating three Christmas Eve masses. Isolation is a terrible scourge for seniors in our society during the best of times. During this pandemic, it has wracked havoc with our mental and emotional well-being to the breaking point.

In August, Jay and I lost his brother to the pandemic and could not at that time have a memorial service. Now once again we were losing the rituals and traditions that sustained us. It was hard to find a reason for rejoicing. But God did not abandon us. When I sat down to write this post, Misericordia, the home that cared so well for our disabled children for years, sent us a message.

o come, o come, emmanuel!

Father Jack’s would have Christmas Eve Mass at the Home broadcast that evening. Jay and I could join an important part of our family, the folks at Misericordia, to celebrate the essence of Christmas, the birth of Jesus, the coming of light and hope into darkness, a light that shines as brightly tonight as it did over 2,000 years ago.

“Any one thinking of the Holy Child as born in December would mean by it exactly what we mean by it; that Christ is not merely a summer sun of the prosperous but a winter fire for the unfortunate.”

The New Jerusalem, Ch. 5https://www.churchpop.com/2014/12/03/g-k-chesterton-on-christmas/

jesus christ figurine
Photo by Jeswin Thomas on Pexels.com

Memoir as Smorgasbord

Newborn immediately after birth
beginnings and endings

I announced in this space on August 30, that before the year is over I will complete my memoir.  It’s an ambitious task because, in that narrative, I attempt to cover all the years I shared with my two extraordinary children, Kristin Margaret and John Brophy. That journey began on May 14, 1969, the day my Kristin was born, and ended on February 3, 2015, the day she died. Forty-five years.

Birth and death do not necessarily make satisfying beginnings or endings for a story. Life’s meaning is not in the coming and the going, but in what happened in between. Yet, there is so much! It all feels terribly important, but an impactful memoir needs to be succinct. A long, rambling narrative loses readers long before they learn the important things you need them to know.

looking for a life raft

By the time I had written halfway through the fifth version of my memoir, I knew I required serious help. I signed up for a writing class. Rather than a course on how to write a memoir, author/mentor Ellen Blum Barrish offered a “smorgasbord” of topics. Each was designed to help potential memoirists dig deep into their own inner experience. I wasn’t entirely certain that the class was what I needed, but I trusted Ellen and I couldn’t go it alone any longer.

What a good decision that was!

defining truth

The very first week, we dug into the conundrum of truth in memory. We dissected Amye Archer’s searing essay, “Writing Truth in Memoir,” in which she adjures writers to give up hidden agendas they uncover as they write. “It is more important to be honest than vengeful,” she warns us. We are not writing to make the reader “be on our side.” For our story to be visible to our readers, we have to pull the lens farther back than that.

Amye made me realize I had to watch out for my own hidden agendas. I wasn’t after revenge, but I did tend to “protect” my characters.

what is a family?

Week two’s topic really excited me. “Writing Family” was exactly what I was trying to do. I looked forward to hearing about the other writers’ struggles and triumphs with this topic. At first, the evening’s reading disappointed me.  It wasn’t about “real” families. The essay poignantly recalled the writer’s early days in the funeral industry and how the personnel at the funeral home formed a close-knit and caring “family” so that they could better support the grieving families whom they served.

No, that wasn’t exactly what I hoped for. Yet, when we talked about all the different ways people form “family,” I began to see our story, mine, Kristy’s and Johnny’s, against a backdrop of a family that extended beyond biological connection.

No, not that funny

Our focus for the third week, “Writing Humor,” had me cringing. I have no idea how to be funny. When I was a professor I would hear students in other classes laughing uproariously and a sharp, green slice of envy stabbed me in the heart.  My studies never laughed in my classroom.  Maybe I should have been grateful, but I wasn’t. I took heart, therefore, that as our group discussed Amy Poehler’s “Take Your Licks,” a humor piece about a job she had as a teen, I found out I wasn’t the only one who didn’t find it funny.

I felt kind of sorry for Amy. After all, she is a comedian. She has to be funny to earn a living.  I don’t. I gave up worrying up hope to entertain readers by showing them the funny side of my story – there wasn’t one.

writing loss

“Writing the Lost Loved One,” the theme of week four most likely was the one that made me sign up for the course. My memoir focused not on me, but on two beloved lost children. They say be careful what you wish for.  The reading that Ellen chose for that week ripped my soul apart. I could hear Jaqueline Doyle’s voice cry out from her essay, “Dear Maddy,” “Talk to me, Maddy. Tell me what it was like. Rise up from the depths of twenty years in all your shadowy splendor. Tell me.”

We do that, those of us who have lost a loved one. We don’t want to let go, especially of someone yanked away from this world “before their time,” whatever that is. Doyle’s abrasive honesty made me question myself.  Did I dare put the searing blaze of my own emotions into black and white and offer them as a sacrifice? Was, perhaps, my whole project a mistaken quest?

perspective can be everything

We examined writing about trauma in the fifth week of class. We read both a touching testament to the moment a woman realizes her marriage is over and a horrifying witness to the 9/11 attack on the Twin Towers. The latter, Brian Doyle’s “Leap,” might appear to be the more “traumatic.” After all, it depicts people jumping from window and hitting the pavement transformed into a “pink mist.” That is only one of many tragic images Brian presents.

Yet, we found ourselves equally engrossed in the pain of the woman in the first piece. Our assessment of the two different pieces reinforced my conviction that how well a writer crafts their tale can determine how well the story will grip their readers.

always more to learn

Every week of the class continued to build my understanding of what it means to write from the very core of one’s being.  It was my one-on-one session with Ellen, however, that answered many of my most troubling questions about my memoir. She also gave me a whole new perspective from which to view my life. That tete a tete will be the topic of next week’s blog post.

Memoir isn’t the summary of a life; it’s a window into a life, very much like a photograph in its selective composition. It may look like a casual and even random calling up of bygone events. It’s not; it’s a deliberate constructionWilliam Zinsser, in On Writing Well (2006; 30th Anniversary Edition)

Cemetery angel
Photo by Tim Mossholder

 

Little Boy Lost

Rapid transit Chicago
The same, yet different

“Your memoir stories all seem to focus on Kristy,” a reader commented recently.  She then asked, “Did Johnny have the same disorder as your daughter?”

There is no straightforward answer to that question.  It’s not like answering, “Did both children have the chickenpox?” There were many ways that assault on Kristy’s brain presented itself that resembled symptoms that Johnny had as well. Frequent grand mal seizures was one and developmental delay was another. Yet, there the similarities stop. They had such different personalities that at times it almost seemed like they had two completely different syndromes.

Recently, I shared a Johnny story with a group of fellow memoir writers. It will illustrate those differences. Maybe it will help other readers understand why I struggle so much to give an honest account of our life together.

***

no time between crises

Kristy and I had. just returned from an appointment with her physical therapist.  I pulled our minivan into the parking space behind our Chicago rowhouse and before I’d even turned off the engine, my thirteen-year-old daughter Betsy, her red braids flying behind her, came running down the back-porch steps, “We can’t find Johnny,” she shouted.

My heart sank into my gut.

Well, crisis or not, I couldn’t just let Kristy sit in the car. “Help me get your sister into the house.  Have you searched the whole house?”

“Yes. Twice.” She screeched. “We looked everywhere, even in the clothes chute.”

“What about the piano top?” It wouldn’t be unlike him. “Where’s Carrie?”

“She’s calling neighbors,” Betsy said as she helped me ease her older sister into her wheelchair. At the back door, I forced myself to focus on getting Kristy and her chair down the five steps to our basement rec room.

first things first

As I wheeled her up to the Formica table at a diner-style booth in the basement, Kristy, oblivious to the panic around her, pronounced, “I’m hungry.” I glanced at the TV. Its digital clock read 1:29. Kristy had to eat. I couldn’t risk her having a seizure right now. We had to find Johnny.

“When did you miss Johnny?”

“About twenty minutes ago.”

“He can’t have gotten far.  Go down the alley and check people’s yards? I’ll get Kristy something to eat.”

“Should we call the police?”

“Oh, my God, I hope not. Let’s wait a bit.”

I fixed Kristy a quick peanut butter sandwich and a glass of milk and made sure her chair was securely braked.

I found fifteen-year-old Carrie sitting on the rug in the living room, her long wavy hair draped over her knees. The telephone cord straggled from the far wall and into her lap.  “Thank you,” she muttered, “that’s so good of you.  Yes, please call right away if you see him.” She looked up eyes wide and chewing her lips. “That was Louisa McPharlin.”

I nodded. It made sense to check with Louisa. Hers was the last house before the “L” tracks.

a false sense of security

Our home was part of a community enclosed by wrought-iron fencing with several heavy iron gates at various entrances.  If Johnny’s wandering kept him within the borders of those fences, someone who knew him would spot him. The gates, however, were never locked or even closed.

Although ten years old, Johnny processed the world like a two-year-old. Outside the gates he would encounter busy city streets, dozens of strangers, coming and going from the elevated train station and from buys commercial Lincoln Avenue. Crowds of DePaul University students also hustled along those sidewalks on their way to class. In the midst of so many people, Johnny could disappear, or even more horrifying a predator might spot him.  Like every mom, I read the stories of children disappearing and then put them quickly out of my mind. Now they all came rushing back at me.

holding on to hope

Carrie didn’t find a single person who had seen him. Betsy hadn’t returned yet. I let myself hope that she’d found him. Johnny’s gait was at best a slow shamble. Bringing him home could take her a while. As frightened as I was, I knew that wherever Johnny was he wouldn’t be afraid. Nothing had ever scared him. He often laughed loudly and long while sleeping. I claimed that he was dreaming of monsters and found them hysterically funny. But laughter couldn’t protect him now.

Bringgg! The front doorbell!  Carrie and I tripped over each other as we ran for the front door. Quicker than me, she flung open the heavy wooden door. There stood a huge, uniformed policeman with a grin on his face and his hand on Johnny’s shoulder.  When I lurched forward, he held up a restraining brown hand. He looked down at Johnny and gestured toward me, “Who is this?”

“Mommy,” Johnny grinned. Then added, “Bathroom.”  That galvanized me into action when I might have otherwise been too stunned to even speak.

“Carrie, take your brother to the powder room,” I directed her and then stammered, “Where did you find him? How did you know where to bring him?”

saints and good samaritans

“A kind woman noticed him lingering outside the De Paul Bookstore. She signaled me in my car. Then she pointed him out and said, “He looks big enough to be on his own, but something’s not quite right.”

“But the bookstore is across Fullerton Boulevard,” I exclaimed. “How could he cross that busy street on his own?”

“Well, we don’t know, but he did. The lady spotted him trying to get into the bookstore, but he couldn’t figure out where the door was.”

I breathed a quick thank you prayer to St. George, the patron saint of books. Johnny, like the saint, was crazy for books. George, it seemed had spread his wings over my son. “Johnny can’t pass up a book.  Otherwise, he might have wandered on,” I told the officer.

His big head nodded. “So, my partner and me tried to talk to him. He just smiled a sloppy grin. Saw the lady was right. So, we were going to take him the station when he pops up, ‘832 Belden.’”

I says, “That where you live? He says ‘My house.’ So, here we are.”

“We worked hard to teach him that but weren’t sure he’d really understood.  He lives in his own world most of the time.”

“Yeah, I see that.  He’s been talking about Grover Monster most of the time.”

My fear had left me weak. Now relief drained what was left of my energy. “Thank you so much. I wish I could thank the woman who found him.”

“She didn’t want to give us her name, just seemed relieved to hand over the problem.”

and the day goes on

Made sense to me. Sometimes, I wished I could just “hand over the problem.”

“Sorry to say this, ma’m,” the officer said, “But you need to keep a closer eye on your son. Maybe you should think about installing alarms on the doors.”

He had a point, but I didn’t want to turn my home into a prison. I looked straight into his deep brown eyes, “I’ll talk that over with my husband.  Right now, I’d better get Johnny some lunch.”

He nodded and headed down the steps.

Saints
Photo by Fernando Santando

Dwell Deeply in the Only Life We Have

Old diary and photo with flowers

Memoirists enter into an agreement with readers: I will tell you an emotionally true story in a skillful way. I will make it worth your while. And while my memory is imperfect, I haven’t invented memories. I haven’t invented facts. If I compress timelines, combine characters, or conflate events, I will tell you. The other people in my book would tell the story differently; this is my own, true version.” — Tracy Seeley, author of My Ruby Slippers

Being honest isn’t easy

Truth is slippery. It sounds so easy. Just be honest. Tell it like it was. Memory, however, is a living, breathing power and like all living beings, it changes constantly. Every day, I experience thousands of moments. Each one of them crowds itself into its own little corner of my brain. None of them are forgotten, but all are transformed by the space they share with the memories that were there before they arrived. And as new memories burrow in, they modify those that came before them.

It leaves me wondering how I keep my implicit agreement with my readers as I write my memoir.

craft is a given

The “skillful” part I get. I stay with my craft, writing, editing, and rewriting. I submit excerpts to writers’ critique groups and to mentors. Time to rewrite once again taking to heart the insights these wise counselors have shared with me – over and over until my writing clearly communicates my voice and shares my vision. Skill alone, however, will not make my story worth your while.  Only if you sense right from the beginning that what I tell you is emotionally true will you stick around to hear the end.

and so is imperfection

It’s a given that as a reader, you understand that my memory is imperfect. You know I must compress timelines. You’re not expecting to read a day-to-day diary. You may, indeed, accept that I combine some characters. Over the course of Kristy and Johnny’s lifetimes, I consulted with so many doctors and educational specialists that it is inevitable that these people run together in my mind.  As to conflating events, there were so many emergency room trips in our lives, it is only natural that some of them blur together while others stand out in vivid detail. This is true also of the multiple bittersweet and funny moments I shared with my two extraordinarily special children.

but lying is unacceptable

At the same time, you fully expect that I won’t make up a memory just so it fits the narrative.  Also, my story happens in a particular time and place. Therefore, the backdrop against which our lives played out, Chicago, Illinois, during the last quarter of the twentieth century and the beginning of the twenty-first, must be portrayed with the greatest possible accuracy. For that I cannot just rely on memory. Research might not be the “fun” part of writing, but without it the memoir will lack luster and solidity.

digging deep is essential

There are no external references or resources, however, in which I can find my own emotional truth.  That vital nugget, that essential core, of a memoir exists in one place only, deep inside my very self. I’ve buried it so deep, I’m not certain that I can dig down far enough to reach it. There was a day almost fifty years ago when I sat on my kitchen floor and sobbed. I held in my lap, my four-year old daughter, unconscious and limp in my arms. She had just had had a wrenching grand mal seizure. I wept in frustration that none of the seizure-control medications were working. I wept in relief that I had caught her before she fell, and she hadn’t been injured this time. I wept in helplessness because I couldn’t make my little girl’s life better.

yet unbelievably difficult

Then Kristy’s breathing slowly became more regular. Her two-year old sister, Carrie, came up to me and patted my shoulder, “Be okay, Mommy,” she pleaded. At that very moment I heard their infant sister, Betsy wail from her crib.  I smiled at Carrie and wiped away my tears. I got up, lifting Kristy, and carrying her to a couch to sleep off the aftereffects of her convulsion and went to get my hungry baby.  Carrie trailed along behind me and stood beside us as I put her sister to the breast.  Her eyes were still wide with consternation.  I smoothed her dark curls back from her forehead. “It will be okay,” I promised. It was the last time I cried over a seizure and maybe the last time I accessed my own emotional truth.

can I do it?

Because I now want to tell Kristy’s story because I believe she deserves it and my grandchildren should know this part of their heritage, I must unbury almost fifty years of hidden emotions. Discerning which are the true ones and which are only the ones I wanted to feel will not be easy.  But if I don’t do this, you won’t read the memoir. It won’t be worth your while.

But how will I reach emotional truth as honest and raw as Anne Roiphe attains in her essay, “A Child Has Died,” published in Tablet, an online magazine about Jewish life?  Read it and see what I mean.

I can only try

Of course, my language cannot be Roiphe’s language.  I don’t have her voice. Still, I want you to feel my loss the way I feel hers. That’s the task I’ve set for myself. Almost everyone else in my story would tell it differently because they lived it differently. All I can promise is to do my best to tell my own true version.

Jule reads the Christmas story to Kristy, Betsy and Carrie
Note the net on the spiral staircase. We lived every day with the illusion that it kept our daughters safe.

 

 

Dream of the Beach – Plan for Reality

Beach with sunglasses
summer dream

Wasp
Photo by Duncan Sanchez

What could be better? A whole summer living on the beach. Days ruled only by the ebb and flow of our appetites for food, sleep and pleasure – just my children and me for three idyllic months. Well, of course, there were glitches.  There always are. But things held together pretty well. The worst trauma of the summer was a swarming wasp attack on my six-year-old daughter that nearly sent her into anaphylactic shock. Other than that, the weeks passed without grand drama.

back ‘n forth, up ‘n down

The hardest part for me was I couldn’t leave any of my three daughters at the beach on their own. Every time one of them needed to pee or poop, I had to sling their infant brother across my hip and parade with all three up and over the sand dune and back to our beach house. Plus side – between breastfeeding a lusty baby boy and climbing that dune a dozen times a day, I easily dropped back to my pre-pregnancy weight.

Mon and kids at beach
Photo by Dylan nolte

Late afternoons were a bit of a see-saw. Most relaxing was just staying at the beach until the kids were so bushed, I could feed them a simple dinner followed by a quick rinse in the tub and into bed just as the sunset. Time to pour a glass of wine and enjoy a good book. Down side – that meant my husband Jay was staying in the city for the night.  Because we were brand new to the beach community, I didn’t know any close-by families. After a long, adult-free day, I yearned for some grown-up interaction, but Jay’s long hours at the office often meant he missed the last commuter train out to our distant community.

yay! dad’s home

Commuter train
Photo by Redd

On the other hand, the children and I got excited if we knew he’d be home, but that meant getting everybody off the beach by three, up to the house, properly bathed and nicely dressed so that we could meet his train. Pulling this ritual off was touch and go. We too often found Jay waiting at the station for us, hot, sweaty, and feeling deserted. Still, whether we made it on time or not, the reward was dinner at Swingbelly’s, a boisterous sandwich shop that catered to beach families. For me, at that time, it was as good as, if not better than any fine Chicago Loop restaurant.

the end of good enough

Unrenovated houseAll in all, the summer plan worked until it didn’t. By the end of August, we found ourselves mired in disaster. Our Victorian row house in Chicago needed far more renovation than we had anticipated.  We had expected the work to be completed by Labor Day in time for the new school year. On the third weekend of August, we drove with the children into the city for a tour. Many of the rooms were still down to the studs. None of the bathrooms had been plumbed. The kitchen was an empty square. True, we had new windows, repaired flooring, and a cleaned-out basement, but we didn’t have a living space. To ice the cake of disaster, our architect informed us there was no money left in the renovation budget.

now what?

“But we can’t live here!” I needlessly told him.

“Well, we could throw something together for about $10,000 more and you could move in next month,” he offered. “But it wouldn’t be the restoration you were hoping for.”

“What,” Jay asked, “wouldn’t get done?”

“The woodwork and staircases would remain unfinished. We could board up and cover the fireplaces. The kitchen cabinets and the new breakfast room would have to go.”

“In other words,” I confronted him. “We would be worse off than if we had never tried to fix the house up in the first place.”

House renovation
Photo by Nolan Issac

“Not exactly true,” he said. “You have a new heating system instead of the old coal burner and the house is now much better insulated. And we’ve shored up the wall that had bent partially burnt away by that old fire.”

I didn’t find much consolation in his words.  “If instead we go ahead and do what we planned, when could we finish?”

“You’d be in your new home for Christmas,” he assured me.

I looked at Jay with pleading eyes. “We need to talk about this.”

The situation had muted him and he only nodded. Johnny has thankfully slept out this encounter in his carrier on my chest, but now we rounded up our daughters from their risky romp through the half-finished house.

two steps back, one step forward

Montessori schoolAs the children slept on the way back to Indiana, Jay and I grumbled and muttered, half in conversation and half in self-talk. We were too numb for a real discussion.  That took place the next day. Neither of us felt ready to let go of the restoration plan we had put our heart and soul into for months.  This would be our forever house. If we could, we would complete the project. Two main issues took priority. Could we afford to proceed with the remodeling? What would we do about school for Kristy and Carrie? It was divide-and-conquer time. Jay would approach the bank about increasing our renovation loan. I took on the school situation.

the new us

Carrie, 1977
Carrie, 1977

As soon as Jay possible on Monday morning, I phoned the Michigan City school district. For Carrie, there was a straightforward schooling solution. The local public school ran a bus which would pick her up right in front of our house. I really like the open, Montessori-type structure of the school Carrie would attend, and her teacher, a twenty-year veteran first grade instructor, struck me as both competent and extremely caring. For Carrie, our shy child, it wouldn’t be easy to start at any new school, but this one, at least seemed would ease her in.

Child's painting
Photo by Dragos Gontarium

Kristy’s special challenges meant she would need testing before placement. Setting up an appointment for this meant Jay would have to stay home from work for a day, but in the scheme of things that was a small adjustment to make. As things turned out, the class into which Kristy was accepted was considerably better formulated to meet her needs than the one she had been attending in Chicago.

Betsy and Johnny, 1977With Carrie and Kristy’s school issues settled, I began to look into a pre-school which Betsy, age four, could attend. But she put her foot down and refused to go. “I’ve gone to nursery school already,” she said, “but I’ve never had a baby brother before. I want to stay home.”

Pre-school isn’t mandatory and the truth was her company during my long days would be lovely.  I didn’t press the matter.  In the meantime, we did receive the loan extension from the bank.  The restoration work would proceed as intended. We hunkered down to spend another four months on the beach.

commuting becomes a dilemma

Because we now had to wait until Kristy and Carrie got on their school buses before I could take Jay to the train, it meant he wasn’t getting to the office until eleven in the morning. He then had to leave by five to catch a train back to the beach. It was impossible for him to complete his work in such a short day. We had to consider that he stayed in the city for part of the week, but he couldn’t live at our wreck of a house.  Could we afford a studio in town for him?  That would really stretch our budget beyond control.

Chicago apartment buildings
Photo by Chris Dickens

Then the blessings of having a large extended family kicked in.  Jay’s aunt Florence worked for the city, which meant she had to live in the city to keep her job. But her elderly father lived in his home in the suburbs and she was responsible for overseeing his care. Her solution had been to rent a one-bedroom in the city as her official address, but actually live in River Forest with her dad.  This apartment was just off Michigan Avenue not far from Jay’s office.

She offered it to him to use whenever he needed. Gratefully we accepted. Now, I took Jay to the late train on Monday morning and picked him up from a post-dinner train on Thursday night. He spent long weekends with us.  This was our plan.  Very often, however, he had stay in the office through Friday as well. Autumn at the beach was spectacularly beautiful. I was lonelier than ever.

no end in sight

And autumn extended into winter with no end in sight for our renovation project.  What happened next will be the story of my next blog post.

Beach in autumn
Photo by Aaron Burden

“Send your dreams to places you can’t reach; they will go there and they will pull you up there!”
Mehmet Murat ildan