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

The Future Comes Soon Enough

Child watching fireworks
ordinary wonder

This year we celebrated the Fourth of July in very traditional ways. Because this is 2021, and we are just beginning to transition out of the pandemic mode,  the commemoration felt extraordinary. Freed at last from months of isolation, we rejoiced to be able to gather with friends and with strangers in merrymaking and festivities. It was a true Independence Day.  Like celebrations often do, it brought to mind other times when we commemorated this particular holiday differently than usual.

Last July, this blog featured one of those occasions, the year Jay and I spend the Fourth of July in the Ukraine. This year my mind spins back to July 4, 1976. That year we had chosen to spend our holiday on Mount Desert Island, the largest island off the coast of Maine.

Maine village by ocean
Photo by Carl Newton

up north & down east

A one-week layover in a small cottage along the island’s southwestern coast, near Tremont, had been our first visit to Mount Desert. My husband, our three-year old daughter Kristy, our eighteen-month-old daughter Carrie, my sixteen-year-old sister Beth, and I had already journeyed north from our home in Chicago to Montreal and Quebec City. We had then headed south toward New England. After a week on the road, we took a break and met up with friends from Chicago, the Forsythe family They knew about the island because the mom, Mary Florence, had a brother who lived near there.

Maine lighthouse
Photo by Daniel Vargas

Being on Mount Desert swept us into an entirely other culture. Both Maine and Illinois were part of the USA, but there the similarity ended.  It didn’t even sound to us like the folks spoke the same language. The little fishing villages of Tremont formed the “quiet” side of the island.  For us that was quiet, indeed, since even “busy” Bar Harbor was a far cry from the noise and hustle of Chicago. The entire island is only 54 square miles (Chicago covers 234 square miles) yet every mile of it offered a fascinating new discovery.

nonstop views and vistas

Most breathtaking is Somes Sound, a fjord-like body of water that runs five miles inland and divided the east and west sides of the island. When we stood at the inlet and stared up at the soaring cliff, towering over the water like sentinel giants, even the little children were awed into silence.

Jordan Pond
Photo by Alexa

At the other end of the pleasure spectrum was Jordan Pond. The “pond” is a glacier-formed tarn with exceptionally clear water, but swimming isn’t allowed there.  And although we could have rented a canoe, that didn’t sound like a safe decision with two such young children in tow.  What we did learn to love was tea on the lawn of the Jordon Pond House. We could almost feel we had been transported to England, but the delicacy to which we became instantly addicted were popover so light they melted in your mouth.

true land’s end

Of all the places on the island, the one that intrigued me the most was the summit of Cadillac Mountain because, while there are twenty mountains on the island, this one at 1,530 feet (466 meters), is the highest point along the North Atlantic seaboard. That makes it the first place in the United States to view the sunrise.

To celebrate this phenomenon, every year on July 4, many of the citizens of Mount Desert Island as well as hundreds of visitors make it a point to be on the summit at the crack of dawn on Independence Day.  Our visit was a long after this momentous event, but with the wind blowing so fiercely that I held my daughters very tightly as I took in the great expanse before me, I vowed to return for July 4, 1976, the 200th year anniversary of the Declaration of Independence.

return to eden

Mt. Desert Island coast
Photo by Alexandra Fisher

Our return trip turned out to be the first vacation that Jay and I took alone since our first child had been born. With great excitement I planned the romantic getaway to one of the most beautiful places I had ever visited.  This time instead of ram-shackle cottage among the sea grasses, a lovely old inn, high above Somes Sound would be our home for the week. I had planned the trip with great exhilaration. Yet, when it came time to actually hug and kiss our children goodbye, I almost couldn’t get into the taxi that would take us to the airport.  We were leaving them with two trusted, known caretakers, but, at the last minute, it felt very scary to walk away from them.

a difference in perspective

My anxiety was not much allayed when after checking into our room at the venerable Asticou Inn, we went down to enjoy dinner in the dining room. Dinner was included in the American Plan price of the hotel. The maître stepped up as we entered. “I’m sorry, sir,” he said, “but a suit jacket and tie are required for the evening meal.”

“But I am formally dressed,” asserted my husband. He wore a “leisure suit,” a new evening apparel for men that had become all the rage that year.

“Your outfit does not meet our dining standards,” the host insisted.  And we were not allowed to dine there.

Grey Rock InnWe had to find another place to eat that evening.  We checked out the following morning. Gypsies that we were, we were very fortunate to find an opening at the charming Grey Rock Inn, a much less formally run Bed and Breakfast quite close to Somes Sound. After enjoying a lovely cup of tea with the inn’s proprietress, I finally began to de-stress. It began to look like our quest for a romantic getaway but work out after all.

fogged in, but not bogged down

On our first trip to Maine, the skies were bright and clear. The sunshine was brilliant. That didn’t happen this time. But fog and rain didn’t stop our fun. We took several long hikes. On the one day the fog lifted, we went sailing on the Sound. Finally, the focus of our trip came up.

Folk dancers
Photo by Ardian Lumi

The next day would be July 4.  We took a long afternoon nap, ate dinner and headed up the dark mountain where the festivities started at midnight.  The fog became increasingly dense, but we found a parking spot and good seat. We watched the islanders perform folk dances around the bonfire. A bevy of local bands belted out enjoyable patriotic tunes.

Scottish bagpiper
Photo by Lucrezia Carnelos

Throughout the night the fog hung low over our heads.  By quarter to four in the morning, it began to lighten up.  We became hopeful that the fog would clear and the sun would burst across the horizon in glorious color. For seventy-five long minutes, the crowds peered into the gloom.  Every once in awhile someone would claim to have seen a light, but it was never confirmed.  Finally, a stalwart guy, dressed in full Scottish regalia, came to the microphone.  It’s five a.m., folks,” he announced, “the sun has risen.” He began to play the bagpipes on his shoulder.

the sun does not rise

We looked at one another in disbelief.  Nothing had changed.  It wasn’t even a little bit lighter than it had been at four a.m.

Guns and balls
Photo by Ben Iwara

“My Lord,” I said to Jay. “We came over a thousand miles to see the sun rise on the third century of the American Experience – and it never rose.  This does not bode well for the next one hundred years.”

I now look back at the almost half century that has come and gone since we stood on that mountain. I feel a bit like my words were tainted with prophecy.

Protest signs
Photo by Jason Leung

“The vast possibilities of our great future will become realities only if we make ourselves responsible for that future.”Gifford Pinchot

Life Is What Happens . . .

Dogwood Blossoms
the artist’s way

Stacks of books
Photo by Ajda ATZ

A certain romantic mythology often draws young people to the artist’s life.  Estelle Ford- Williamson was no exception. As a teen, growing up in Chattanooga, TN, she dreamed of being a writer so that she could live her life as Hemingway had. Like him, she would be a journalist who traveled the world reporting on major crises, all the while writing terse, fascinating novels and stories (although her Catholic school girl self wasn’t sure about having multiple love affairs as he did). Her dream focused on the excitement and the adventure of his life.

The Right to Know the Truth

Typewritten Truth
Photo by Marcus Winkler

Her perspective changed when she had the opportunity to meet The Chattanooga Times managing editor, John Popham, who as a journalist in the 50s covered the Southern United States for The New York Times. His impassioned words extolling the obligation of the reporter to bring the truth to the people no matter what the difficulties nor who opposed them moved her to tears.  She had a whole new vision of what her life could mean. This compelling notion of a responsibility to the truth took full steam as she attended college during the turbulent 1960s.

life in the “real world”

Chicago blizzard
Photo by Max Bender

It was so powerful, in fact, that she left Saint Mary’s, the women-only college she attended, before she graduated. She had a plan to take her elective courses in Chicago so that she could live in the “real world.”  Working during the day and taking night classes at Northwestern University, a school renowned for its journalism program, she completed her degree requirements and graduated from Saint Mary’s College the next year. During the Chicago blizzard of 1967, two events undermined her determination to live and work in the north.  A friend’s car, which had been buried by the historic two-foot snow, was plowed away.  And a letter arrived from her mother with a dogwood blossom folded in the pages.  She headed back to her beloved South.

a tricky work/life balance

Newspaper collage from 1968
Photo by Arno Senoner

Almost by a fluke she landed a job with the global news agency, United Press International, in Atlanta. Her boss mistakenly interpreted the credits she had earned at Northwestern to mean she had graduated from that prestigious journalism school. Over a beer, the man learned he’d read the application wrong, but as she had been reporting for a while, she kept the job. Two years with the agency taught her to synthesize information quickly and to view events from a broad perspective.

Wanting to start a family, she left the agency.  While her daughter grew, she worked for several government agencies and non-profit groups, writing newsletters and research papers. Working for the city of Atlanta brought her in contact with several leaders in the Civil Rights movement and led Estelle into an active role in equal rights advocacy.

past & present coalesce

Estelle returned to school and earned a master’s degree in Psychology. Her coursework served not only to deepen her writer’s perspective, but also led to new work experiences as a management trainer and career development specialist. She performed workshops, helping people learn to communicate with one another within corporations and assisting people transitioning from one job to another. On the side, she kept up her interest in writing by editing and publishing three of her aunts’ memoirs about their lives in North Georgia.

what she least expected

Memorabilia
Photo by Ireland Rose

Then a cloud with a silver lining blew over her horizon. Felled by Chronic Fatigue Syndrome, she lacked the energy to work full time. But because it wasn’t her nature to simply sit around, she began reading from her grandmother’s trunk, which contained memorabilia and family writings from that woman’s family. She also came across a detailed genealogy constructed by a great aunt that covered multiple generations of family. She began writing a story of fictitious characters who lived in the same period. Sometimes she wrote with her eyes closed due to the persistent fatigue.

always questing

Man making rifles
Photo by Carter Yocha

Writing was a quest for Estelle. There were years of research. She hunted in schools, libraries, archives, and museums around the South. She collected not only data but information on valuable material culture—house furnishings, clothing, blacksmithing, rifle making.

Abbeville FarewellResearch was interwoven with writing. Several short courses in creative writing and many years of writing in groups helped her develop chapters of a historical novel. An excerpt won a top novel award at Sand Hills Writers Conference. Published as Abbeville Farewell, the story is a saga about family and moral conflicts in pre-Civil War Atlanta and North Georgia, but it also examines the state of the nation’s conscience in the mid-nineteenth century. It was nominated for the 2002 Townsend Fiction Prize.

an unusual collaboration

Boys in a refugee camp
Photo by

Time to begin working on a second novel. But no.  A friend insisted that she meet a young man who was struggling to write his memoir and could use her help. His name was Majok Maier. As a child, he had escaped from Sudan during its bloody civil war. Of course, Estelle was intrigued. Four years later, MacFarland and Company published the book, Seed of Sudan: Memoir of a ‘Lost Boy’ Refugee co-authored by Ford-Williamson and Maier.

Its gripping narrative reveals how tens of thousands of boys like Majok fled from the Sudanese Army. They survived on grasses, grains, and help from villagers along the way. They had to  walk nearly a thousand miles to refugee camps in Ethiopia and Kenya before immigrating to the United States.

a mission as much as a book

The research for the book took Estelle all over the US to interview the young men. Research also took her to multiple libraries to gather and verify the book’s necessary background information. After publication, they held book readings in New York, Ohio, and D.C.  In all those place they met with other Lost Boys who’d settled across the US.

Water well in South Sudan
Photo by Mohamed Tohami

Majok and the other boys’ stories are very poignant and disturbing. These young men felt the need to help change conditions in their new home country, South Sudan.  So, Majok, Estelle, and valuable supporters formed a non-profit organization. It raised funds to build clean water wells in rural villages in South Sudan. (http://www.wellsforhope.org).

a quiet place

After the intensity of getting these under way, Estelle Lockwood Folly Wetlandneeded a place to quiet herself. She found it in the wetlands along the South Carolina coast. At a home she and her husband purchased, they retreated far from crowds of people, perched on a coastal river.  Her fellow citizens are many species of wildlife that inhabit the area.  Now, at last, she has written the novel she dreamed of, a contemporary narrative.  Rising Fawn not only gives us a twenty-first century protagonist, we also find in its pages a confluence of the many streams of Estelle’s life–faith, natural wonder, and a family’s past–merging together to form a powerful narrative for our ever-changing future.

 good dreaming

Rising FawnEstelle’s girlhood dreams of becoming a second Hemingway didn’t pan out. Her multidimensional achievements are, however, a unique outstanding contribution to the literary world. She’s been awarded fellowships to arts residency programs.  Her teaching accomplishments include readings and workshops for Poets and Writers, Inc. and the Pat Conroy Literary Center. In addition, Estelle enjoys teaching writing to at-risk youth as well as retired adults. A special delight for her is that as her books received critical acclaim, they continued to find new readers.  Those readers have proved to be a faithful and engaged group with whom she communicates regularly.

Among them may very well be a young girl, who dreams of growing up to be a writer like Estelle Ford-Williams.

“Is there a place you can go to break away for a little while? If you haven’t yet built your tree house, it’s never too late to start.”
Gina Greenlee, Postcards and Pearls: Life Lessons from Solo Moments on the Road

Messy or Neat: Is It a Matter of Genetics?

Tulips - alike but different
sharing dna, but little else

Three sisters
Photo by Samet Gezer

In my last blog post, I pondered the question, how my children people sharing so much DNA and raised by the same parents in the same household could be so different from one another? I particularly tackled the question of why my oldest daughter, Kristy, should be so innately friendly, truly a child who never met a stranger while her younger by 18 months sister, Carrie, clung tenaciously to me whenever an even slightly unfamiliar person approached her.

messy or neat: is one better?

Another striking dissimilarity that popped up as my children grew were the

Neat bedroom
Photo by Kim Schouten

antithetic attitudes that Carrie and our youngest daughter Betsy took toward orderliness. Carrie’s sense of order was inborn, almost God-given. By the time she was six weeks old, she had developed a completely set pattern of eating and sleeping. By her second birthday, she had already established a place in her small room for all her clothes, toys, and books. Everything went back in place after she used it.

Messy room
Photo by Johnathan Borba

Betsy, however, was an infant who though sleep was for wimps. She seemed to be afraid that if she slept for more than twenty minutes at a time, she’d miss out on the something good. From an early age, she took the same attitude toward tidying up. As far as she could tell, it was a waste of time better spent having fun. No pleading, no rewards could entice her to put a toy back on a shelf or a dirty shirt in a hamper. She didn’t say she wouldn’t do it – she “just forgot.” At one point, in desperation, I placed a sign on her bedroom door that read, “If you have a heart condition, enter at your own risk.”

age old question: nature versus nurture

When I researched the topic of sibling differences for last week’s blog, I discovered that scientist have found that we are born with tendencies toward being an extravert or an introvert.  Could the same be true about our sense of order? Are some people just born with personalities that prefer order while others thrive on chaos?

It has been established that people react differently to order versus clutter, “For some people, a tidy room can be soothing. An orderly retreat in an often-disorderly world. For others, such rooms can be sterile, bland, and uninspiring. Some people feel anxious in a cluttered room while others feel their most creative amid the squalor.

Exuberant play
Photo by Artem Kniaz

one answer: personality types

Some psychologists consider that the tendency to be orderly or messy follow personality types. They tend to see Type A personalities as more orderly and Type B people as messy creatives.  But while Betsy slips fairly easily into Type B categories such as enthusiastic, persuasive, friendly fun-lover, Carrie more closely resembles the Type C personality, creative, detailed, organized, thoughtful and concerned about quality control.

Somber room
Photo by Erica Hugnh

And we are left asking are personality types themselves inherited or created by a child’s environment? The straightforward answer to that question, according to most research, is the personality traits of humans and animals are determined in large part by their genetic makeup. But genetics does not determine everything.

what can parents do?

Such conclusions leave me pondering.  Could I have possibly been able to influence Betsy to keep her room more orderly and be more helpful about household chores in general? I’m not at all certain about that.

Little girl twins
Photo by Tim Bish

And the researchers back me up. Studies in the field of behavioral genetics focus on three main factors: heritability, shared environment and nonshared environment. While all three sources of influence act simultaneously, psychological research collects data from studies of identical twins raised together, non-identical twins raised together, and identical twins raised separately.  The findings from these studies help them determine how much influence each factor has on the personality traits of individuals.

Twins in a field
Photo by Keisha Montfleury

One intriguing discovery that came out of these studies is that while environment, for the most part, plays a greater part than genetics in determining adult behavior, the effects of parents and other caretakers plays a very small role in determining our ultimate adult personality.

 

it’s complicated

There are simply too many other factors in every child’s life that also influence his/her development.  And these other influencers grow in number and importance at every developmental step.  One of the first influencers is other siblings.  And I’m not courageous enough to attempt to unravel what affect Carrie’s love of order may have had on Betsy’s carefree attitude toward clutter.

By the time Betsy was ready for nursery school at age three and a half, I had pretty much learned to let her live in the chaos she found fit her creative spirit. In filling out her application for the Lincoln Park Cooperative Nursery School, I indicated that the teachers would have some problems with Betsy when it came to picking up after herself and following other rigid rules of order.  Shortly after the school received the application, the head teacher and the teacher for Betsy’s potential class called me in to speak with them.  Kristy and Carrie had both attended the school.  So, the staff was familiar with our family.

mom did know best

They were concerned they told me about my negative attitude toward my third child.  The applications for my first two daughters had included no warnings, just glowing descriptions, but here was this gloomy assessment of Betsy.  They wondered what they problem was.  I had to reassured them that I loved my outgoing, sunny, exuberant baby girl every bit as much as I loved her sisters.  Honesty had compelled to include what might prove a challenge for them.  They seemed only half convinced of my sincerity.

Six weeks into the school year, however, they called me back into school to apologize. Betsy was, they conceded, delightful in all the ways I said she would be, but every school day when the “clean-up” song began, she disappeared.  She had discovered a wonderful, cozy hideaway on some soft beanbag chairs in a closet. These became her instinctive retreat the minute the song’s first note rang out.

we’ll know more later

No surprise there. As individuals, as a couple, and as parents, Jay and I tended to take things as they came to us.  Close friends of ours and fellow travelers in the parenthood adventure, the Vander Voorts had a family motto, “We’ll know more later.”  We like their motto so much, we adopted, but with a caveat, “We’ll know more later – maybe.” We wanted Betsy and all our children to develop into unique individuals. Letting character flaws as well as strengths emerge as they grew allowed them the best chance to be exactly who they were meant to be. Over the course of their lives, each of them amazed us beyond our wildest expectations.

(Sibling differences is theme I also explore in the children’s story, “Becky Birch,” which I will be posting this week on the Stories That Chose Me segment of this website. Be sure to check it out.)

Ocean at sunset
Photo by Joshua Earle

 

Learning to Live with the Unknown

Jule and Kristy early Spring 1970
off kilter

Blue Globe
Photo by Elena Mozhvilo

If your whole world suddenly shifts off its axis, you remember that moment in time for the rest of your life.

By the time my first child, Kristin Margaret was nine months old, she filled my days with delight and my heart with pride. Her wispy baby hair deepened into a shimmering gold blonde and curved naturally around her cheeks. When she smiled her wide blue eyes lit up like stars and deep dimples creased her cheeks.  And she smiled most of the time. Kristy loved the whole, wide world. Unlike most babies, she had never heard of “stranger anxiety.” Fearless and friendly, she allowed just about anyone to take her from my arms and give her a big hug.

a shattering scream

Just before Kristy's first seizureOne placid February Tuesday I slid a sleeping Kristy out of my arms and into her porta-crib for her afternoon nap.  Secure of some quiet time, I picked up the phone to call a Mom friend. Ten minutes into our conversation a high-pitched, piercing cry vibrated through the whole house. What? I stopped talking. There it was again. The baby! “Something’s wrong with Kristy,” I cried and dropped the phone into its cradle.

Taking the stairs two at a time, I burst into the nursery and froze in place. Kristy writhed in the middle of her crib, her back arched, her head thrown back, her arms and legs jerking. Foam dribbled from her lips. Oh, dear Jesus, I thought, she’s having a seizure. a vision of my younger sister Nanette in the midst of fever convulsions flashed through my memory.

men in helmets

I scooped Kristy into my arms. The jerking vibrations of her little body sent shudders through me. I should know what to do, I’d watched my parents dozens of times, but I couldn’t think. Kristin continued to convulse.  I needed help. Holding Kristy tightly for fear she’d thrash right out of my arms, I ran downstairs. I yanked the telephone receiver off the hook and pushed the “O” button.  As the ringing began, tears began streaming down my cheeks.  When I heard “Operator,” I babbled something incoherent into the phone, but she understood and assured me the fire department was on its way. Fire department? But…She was gone.

I heard a siren screaming down the quiet suburban street. Men in uniforms pounded at the door. They took one look at the baby seizing in my arms and rushed her to the waiting ambulance. I tried to run after her. A strong hand grabbed my upper arm, “Wait, we’ll see you get to the hospital. I need some information first.” I stared at him. My baby might be dying and he wanted to fill out a form!

“I can’t,” I croaked.

He nodded. “Okay. Let’s go.”

forgetting to pray

I climbed into the back of the ambulance, but I couldn’t get near Kristy. Three huge men hulked over my tiny girl.   One had inserted a needle in her thigh, another held an oxygen mask over her face. I couldn’t see what the third one was doing. Abruptly her convulsing body went completely limp.

“Kristy,” I cried.

“It’s okay.  We just gave her a tranquilizer to stop the seizures.”

Hospital lobby
Photo by Mar Ko

Then the siren drowned out his words. At the hospital, Kristy was wheeled away from me and rushed to an examining room. When I tried to follow the cart, a nurse barred the way.

“Mrs. Ward, you’ll have to wait in the waiting room until the doctors finish.”

“No. I can’t. You have to let me go in. She’s going to be scared. She needs me.”

“I’m sorry, but you’d just be in the way. Listen, I’ll get you a glass of water and you can calm down a bit.” She headed to the nurses’ station.

I stationed myself outside the examining room door, slumped against the wall.  When she returned, the nurse urged me once again to take a seat in the waiting room. I shook my head. After that, the doctors, nurses, and techs came and went from the room. Everyone ignored me. After an eternity, I straightened up and crossed to the nurses’ station.

“What’s happening to my baby?” I begged. Tears choked my words.

“We can’t release any information until you see the doctor,” the woman in white at the counter told me.

“But she’s my baby.  I need to know.”

“Please sit down. The doctor will be out soon.”

what can a dad Do?

Kristy and her father
Kristy with Jay at 13 months

Just then I saw my husband Jay push through the double doors at the end of the corridor. I ran down the hall.  “Where’s Kristy? Is she going to be alright?” he asked.

“I don’t know.  They won’t tell me anything.” I laid my head on his shoulder and sobbed. He held me tight as we stood there, letting people detour around us.

Hours dragged on. a doctor approached us, insisted we take a seat, sat down himself, and began, “Your daughter has a very high fever.  That’s what probably brought on the convulsions.  We’re doing everything we can to bring her fever down.”

“What’s causing the fever,” Jay wanted to know.

“We’re uncertain, but she’s been transferred to our pediatric ward for observation.” And he got up and left.

The nurse told us how to find the room where they’d taken Kristy. In the midst of whirring machines and draping tubes, Kristy slept peacefully. A nursing nun sat in a rocking chair beside her enormous steel crib.

only questions. no answers

Rocking chair at
Photo by Anabela De Sousa

“I can take over now, Sister,” I told her, but the floor doctor who had walked in behind us said to Jay, “You have to take your wife home. She’s been hysterical.  She needs to rest.”

I wanted to resist.  Kristy needed me.  She had only just weaned from the breast a couple weeks before.  We’d never been apart. But even Sister urged me to go. Torn and guilty, but too tired to resist, I left my baby in their hands.

But sleep elude me that night. I stared at our bedroom ceiling. Was something seriously wrong with our daughter?  I could be just a worry wort.  Do stars have a dark side?

when you wish upon a star…

Kristy's bright smile
Photo by John Ward

On the average, babies to speak their first words between ten and fourteen months and have a vocabulary of about three words by their first birthday. Kristy, however, was a natural communicator. She smiled by the time she was three weeks old, waved bye-bye at three months and blew kisses at six months. She had pronounced, “Dada,” before turning six months old. Since then she had picked up more than a dozen understandable words, which she had begun to string together into small sentences.  And she didn’t only say the words she knew, she often babbled to us, her friends, and her toys in strings of sounds that had the cadence of real speech.  We were convinced that she knew exactly what she was saying even if no one else did. Right at that moment, however, Kristy’s singular brightness felt blurred by the worry I felt.

our same sweet girl, but . ?

We weren’t supposed to visit until ten in the morning, but by eight o’clock, I had slipped into Kristy room. Sunlight streamed from the tall window and lit the gold in her hair where she sat huddled into a corner of her crib, “reading” a picture book on her lap.   My heart lifted.  She looked healthy and well.  “Kristy,” I whispered.

Kristy and Jule
Photo by John Ward

“Mommy,” she yelled, crawled to the side of the bed, pulled herself up by the slats, and reached her arms for me.  I could only lean over and give a hug.  If I had lifted her, it would have dislodged her intravenous feed.

“Up, up,” she insisted, giving me her biggest smile. I couldn’t say “no;” I couldn’t say “yes.” That trapped feeling would forever shadow my interactions with this beloved child.

A nurse had seen me go in and come to tell me that visiting hours hadn’t started, but assessing the situation, she chose instead to unhook the feed and allow me to take Kristy in my arms.  I sat rocking her in the comfy rocker until the doctor appeared. “Well?” I asked.

He looked at the chart rather than at me, “Kristin’s fever is back to normal.  She has no other symptoms.  All the tests have come back negative.”

What Now? sign
Photo by Tim Mossholder

Confused, I asked, “Then what’s wrong with her? What cause her convulsions”

“Nothing as far as we can tell. She just spiked a fever in response to some low-grade infection.  It was part of her body’s response. She’s over the hump and on the mend.”

It didn’t sound like much of an answer. “Will it happen again?”

He actually shrugged his shoulder – as though it didn’t matter.  “We have no way of knowing. It could be a one-time occurrence.  It could be a pattern.  We have to wait and see. In the meantime, it doesn’t help her at all for you to become overly anxious.”

starting over

We returned home, puzzled and wary, but with no choice but simply resume our life, hoping the whole episode would become a distant memory. Returning to normalcy is easier said than done.  For three weeks I slept on the floor next to Kristy crib.  She was fine – healthy as a young filly, learning new words and skills almost every day, and remaining a sunny, friendly baby about to celebrate her first birthday.

Easter, the first Sunday in April, I woke up to two happy realizations.  It had been two months since our frantic trip to the hospital and Kristy had remained seizure-free the whole time.  Also, I hadn’t had a menstrual period since that fateful day.  My missed periods could be due to stress. My anxiety level over Kristy had remained high despite her apparent good health. But there was also a chance I might be pregnant.  That seemed a wild card. It had taken four years to conceive Kristy and she was not yet one year old.

life: joy all tangled up with anxiety

Kristy and baby CarrieA month passed before I could get to see the gynecologist because two days after Easter, Kristy had another seizure.  It wasn’t long.  It didn’t necessitate a trip to the emergency room, but it did us send back to the pediatrician asking more questions for which there seemed to be no answers.  When in early May I made it into the gynecologist, the news was wonderful, a balm against our worries about Kristin.  Our daughter would be a big sister by Christmas. Infertility ceased to be a concern.  But one every bit as frightening took its place.  What was wrong with Kristy?  And what could we do to make her better? Those became the two central questions of our life for the next 40 years.

 

Little girl follows big cat pawprints
Photo by Hugues de Buyer-Mimeure