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

The Vomit Draft

brown and white bear plush toy
the end is just beginning

Last month, both on this blog and on my Facebook page, I bragged (and there’s no way to put a kinder word there) about having completed a draft of my memoir. I felt darn right proud of that “accomplishment” because I had attempted to complete a memoir four other times and never got to “The End.”

Then I read Marian Roach Smith’s The Memoir Project in which she firmly states, “self-congratulatory is very bad.” She would add that this is especially true than when one is talking about a “vomit draft.”

My husband gagged when I used that term. “That’s a terrible thing to call your demanding work,” he told me. But I really get what Marian is saying when she writes, “It’s called the vomit draft because it will both sink and be pretty much everything you’ve got in you.” (p. 86)

digging deep

Writing a memoir, I’ve discovered is like mining for diamonds. Before any actual mining even takes place, prospectors need to locate the diamond sources first. If I choose to write a memoir, I hope will be worth reading, my first step is exploring my life experience to determine whether there may be sharable value there. Do I have something to offer readers that will enhance their lives?

man in orange polo shirt and blue denim jeans sitting on brown wooden round stone in near on on on
Photo by Sheku Koroma on Pexels.com

Anything and everything are mine to explore. But just as diamond seekers often follow second sources that never lead to “pipes,” or deposits where the diamonds will prove true and profitable, not everything I dig up from my life belongs in a memoir. I need to locate a primary source.

When prospectors are certain they have found diamonds, shanks are inserted into the ground at the ore-bearing “pipes” and vast amounts of soil are extracted. I knew I wanted to write about parenting my children, especially my two children with an extraordinary neurological disorder. That, however, covered forty-five years of my life. As I dug into my memories I retrieved copious numbers of incidents, funny, sad, delightful, challenging, discouraging – piles of memories.

the wheat from the shaft

Diamond miners typically do not examine the raw rock and soil on-site. Instead, conveyor trucks transport the composite to special plants which process the ore and extract the rough diamonds. This is where I stand in the memoir-writing process. My “vomit draft” is the huge pile of rock and soil from which I need to extract the “rough” diamonds. What pieces of the narrative I’ve captured on the page can I dole out in the final story? What have I learned that I can share in a meaningful way? Which of the “rough” diamonds, I sort out of this pile now, will work to build an argument for me, one built upon what I now know about the human condition because I lived this life? Which of these scenes best illustrate what I learned?

shallow focus of letter paper
Photo by Suzy Hazelwood on Pexels.com

In diamond mining, there is no assurance of fortune. Three hundred tons of ore might be sieved just to produce a single carat of gem quality rough diamonds. I may have written 100,000 words. It would be fortunate if a third of them are still standing when I finish my work.

not there yet

Even after extraction, the rough gems are a long way from the jewelry store. In heavily secured facilities, workers sort rough stones into various gem-quality categories and industrial-specific grades. To get from here (staring at my “vomit draft”) to there (the finished manuscript) is mind-boggling arduous work. Each paragraph even of the “rough diamonds” needs to be reevaluated. Is it necessary? Does it help the argument? Did I make the same point elsewhere? Am I falling asleep? If I am, so would my reader would be. Does this sentence help to show that I moved forward? If not, either it shouldn’t be there or it needs to explain the stagnation. Not until I’ve evaluated the “gem-quality” of each scene can I feel free to move toward the next draft.

brightly shining

In the ultimate step of its violent transformation from rough stone to exquisite gem, the roughs are sold, cut, polished, and commercialized. As I work toward a final draft, I’ll be doing four or more cuts. Are my sentences overly long? Break them up. Have I used a phrase where a single apt word would work much better? Did I just skim over that sentence? Get rid of it. To shine as brightly as an engagement diamond, this memoir needs to be perfectly cut and polished. It’s a long and violent transformation process for “gem,” but you wouldn’t give your beloved a diamond straight out of the ground. And I don’t dare offer you my vomit draft.

“Parents would be much better off if, like defense attorneys, we knew the answer to the question before we asked it. Except we never do, which makes a very nice place to write from.” Marian Roach Smith, The Memoir Project. 

a child playing with her mother
Photo by Barbara Olsen on Pexels.com

The Notion of “Fixes” and “Cures”

Together
What is normal?

In her intense, impassioned, compelling memoir, Sitting Pretty, Rebekah Taussig, who has used a wheelchair for mobility since early childhood, tackles among other hard issues concerning disability, the notion of “fixes” and “cures.” She asks why we are so obsessed with fixing ourselves. She suggests, we ought to let ourselves be, take pride in our identity, be the self who is rather than struggle always to be a “better” version of who we are.

We can discover, she notes, that when we accept and dive deep into the unique challenges that every one of us lives with, we will also find in that same place joy and abundance. The rich conversation and dialogue that can follow taking this approach can lead us to a whole new way of seeing and understanding not just ourselves but the world.

looking for a “fix”

Tausig’s questions bit sharply into my memories. Had I wanted to “fix” Kristy and Johnny? Those children, my oldest and my youngest had lived their whole lives with physical and developmental challenges that required consistent care and supervision. Neither developed past the toddler stage although they both lived into middle age. Both had had hundreds of epileptic seizures. Wouldn’t it be natural for me to have wanted a different life for them? Who, in their right mind, would wish to give birth to a child with so many “problems?”

Yet, in Hausig’s perspective, Kristy and Johnny do not have to be seen as problematic. Those of us, who “pathologize and fix some bodies and accommodate others,” (pp. 74-79) present the true problem.

a really brave new world

I find myself swept up by Hausig’s vision, a world that was not full of roadblocks and bends, a world so full of wells and shady places that all find a place there. In that world, no one would construct a building that could not be easily navigated in a wheelchair. All schools would tailor their programs to the learning styles of the students who filled their classrooms, not some idealized “average” student. What she demands that we understand is that “average” just does not exist in the real world. Average is a theoretical mathematical mean as ethereal as the shape of a cloud.

medical magic?

At the same time, I must be honest and admit that I did wish that I could wave a magic wand and make Kristy and Johnny’s seizures go away. Was not that what we were after with all the different changes of anticonvulsant medications that the doctors prescribed, and we tried over the years. And that does not even count the time we kept poor three-year-old Johnny on an impossible ketogenic diet. He could not understand its purpose. I found myself wavering from its strictures and then blaming myself for his seizures. If I had been able to keep to the letter of the diet, would he have become seizure-free? Was getting rid of epilepsy worth losing my sanity? No, I cannot deny that I fell in line with the search for “fixes” and “cures.”

people are not math problems

Not all of that was wrong-headed. Seizures can be dangerous. They come on so suddenly that injury often follows. Usually, cuts and bruises are the worse that can happen, but once Kristy broke her collar bone. But behind the struggle to conquer the seizures was the hope that if we could stop the seizures then their brains could function more “normally.” Maybe then they could lead “normal” lives. Once again, I applied mathematical notions because that is what a “norm” is, to a human child.

parents love to dream

Let us face it, as expectant parents await the arrival of their new child, they most often dream of the future they will provide for the beloved little one. Most parents when asked what they most want for their children will say they want them to be happy. We have, however, measures for happiness and they do not include disability. They do include intelligence, achievement, love, beauty, and goodness. Most of all, even though we do not want to rush it, we do want our children to “grow up.” When that does not happen, the world feels out of kilter.

who are the grown-ups?

Yet, people with developmental disabilities do “grow-up.” They just do it differently. As parents, we must shift our meanings not “fix” our children. As a society, we can note as well that some children who have no apparent “disability” don’t seem to “grow-up” in the common sense of the word. They do not become financially independent. They never find a life’s work. They never partner successfully. Do we stop loving them? No. But we do often try to “fix” them. It often means the very happiness we wished for them becomes that less possible.

rethinking our culture

This brings me back to Tausig and the importance of her book. She is calling on us to rethink “some of the most deeply ingrained beliefs we carry as a culture.”

Can we do it? It is asking a lot. I, for one, am going to try. In my memoir, I will not hide how hard it sometimes was to meet my children’s needs.  I will, however,  point out that many of the challenges came from the roadblocks our culture placed in my way. I had to push those aside to enjoy the privilege of living with the unique, wonderful people who were my children – all of them.

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” -Francis of Assisi

Kristy dressed up with watering can
Kristy at her most beguiling

A Memoir Is NOT about Me.

I almost quit blogging

When you write a blog you need to choose, according to the common wisdom, a topic about which you are passionate and upon which you have a great deal of expertise. For me, this narrows down to two subjects – one, my own life story, and two, love & committed relationships, my field of scholarly research and teaching.

A few years back I wrote a few sample blog posts upon the latter topic and submitted them for review to a small group of fellow writers. These colleagues, members of a Portland writer’s workshop strongly preferred the stories about my personal life to the essays on family life, love, romance, and marriage.

 everybody is an expert–at something

Other writers, they stressed, already commanded the stage on the topic of committed relationships. And, frankly, these commentators told me, those bloggers did a much better job of elucidating that field than I did. On the other hand, many of my short tales about my life as a wife, student, teacher, and mother were quirky, warm, and captivating.  Upon that subject, I was clearly the one and only expert.

So, following their advice, for two years I’ve devoted my blog, here on my website, “JuleWardWrites,” to vignettes of various moments in my life. Most of these stories focused on my time as a wife and mother, but a few reached back into my childhood. None have, however, examined my life since my daughter Kristy died in 2015.

blog posts as the “trailer”

That’s because while I’ve been writing the blog, I’ve also been working on a memoir. Through the memoir, I am trying to share with others the struggles, the failures, the mystery, and the moments of great joy that filled the forty-five years of my life I shared with Kristy. She was only nine months old when she experienced the first symptoms of what would prove to be an unpredictable, devastating neurological disorder. The scientists called it “Progressive myoclonic epilepsies/neurodegenerative encephalopathy,” but that is simply a description of what the patient suffers and not really an explanation of what causes the disorder. The known causes are many, but most of the time the cause is unknown. The disorder strikes like unseen, unheard lightning.

it just wasn’t working

I have submitted drafts of the memoir to writing colleagues for critique. And I hear familiar comments, not unlike those leveled against some of my blog essays. The blog posts, a friend claims, isn’t honest. “It only tells the good stuff.”  The memoir, fellow writers tell me, doesn’t dig deep enough into the narrator’s emotions.  It portrays a protagonist who always seems to be in control despite the complex challenges she faces.  And they don’t believe that could have been true. And they are right.

Last week, I read an interview with Rebekah Taussig, author of the new memoir new book, Sitting Pretty: The View from My Ordinary Resilient Disabled Body. Rebekah, paralyzed since toddlerhood, has already gained audience for her book through her Instagram account, Sitting_Pretty. The interviewer praised both the Instagram account and the book, a collection of essays, for the way they were able to create an intimacy with the reader.  One felt, she wrote, as though the memoirist had “hooked elbows” with you to walk you through her life.

come, walk with me

Reading the interview affirmed a resolve I had made earlier this week. Just nine days ago, one of the people I hold most dear in this world, my brother-in-law, Marty Ward, succumbed to Covid 19, despite being fully vaccinated. Marty had been quite healthy and had a long bucket list of grand adventures planned. People in his family usually have long lives. His totally unexpected death cracked my heart. It also jolted me awake to the fact that I could no longer dilly dally about writing my memoir.  Kristy deserves to be remembered.  Only I can tell her story.  I must get going.

Like Rebekah, I plan to take you with me. For the next year, the blog will take a new turn. It becomes the story of my journey into the depths of my heart and soul as I struggle to give an honest account of my years as Kristy’s mother.  This means it will include the challenges any writer faces such as dealing with critique, the hard work of rewriting, again and again, the difficult task of finding an agent, and the search for a publisher.

lots of questions, but also some answers

The blog will be full of questions that I’m hoping you’ll be willing to answer.  I am open to critique as well.  I don’t write simply for the positive feedback. Let me know what engages you and what leaves you cold. In return, I promise to share with you everything I learn about writing a memoir.  I believe you probably have a story to share.  Taking this walk with me might be the inspiration you need to sit down and begin that book you were always “going to write.”

September, the start of the school year and the month of my birthday, has always been a time of new beginnings for me. Next week, my first post of September will bring you up to date on where I am at this point. I’ll share examples of wisdom  I’ve culled and how that’s working out.

Let me know what you think about this new twist.

Jule and Kristy 1969
Kristy and Jule, Chicago, 1969

  1. You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better. ~Anne Lamott

Winter of My Discontent

Winter beach
Delayed gratification

Children watch snow through window
Photo by Kelly Sikkema

Well, at the end of my August 9 blog post I left you hanging. My husband Jay and I had moved our family to a beach house on the Indiana dunes in Michigan City, Indiana. We intended to spend the summer there while during the renovation of our Chicago Victorian rowhouse. At the end of the summer, however, months of restoration work remained. We extended our beach stay to Christmas.

As you might have guess, December came and our city home continued to be uninhabitable. We would be staying on the beach for the winter.

swimsuits to snowsuits

The eastern shore of Lake Michigan in summer is a sunny paradise of warm sandy shores lapped by cool rolling waves perfect for body surfing. Winter transforms it into a raging sea of surging, angry, crashing breakers eating away at the dunes. The blue skies turn metallic gray and the wind makes it difficult to stand upright. It’s a place of majestic beauty, but not a playground for small children. My kids and I confined ourselves to the four walls of the cottage for the duration. The few desperate forays that we took to explore the dune in front of our house began slowly.

Children building snowman
Photo by Ethan Hu

It takes quite a long time to bundle four young children into snowsuits, winter hats, mittens, and boots. Usually by the time, I finished gearing up the last child, the first one was unzipping her jacket, complaining, “I’m too hot!”

When we got outside, we trudged to the top of the dune and surveyed the fierce power of the winter lake. By the time, we trekked back to the house, everyone, including me was ready for hot chocolate. The house that had seemed quite spacious when we had first viewed it the previous spring came to feel very cramped as the five spent hours after hour indoors. One blessing of those months was that Johnny was a breast-feeding baby. The oxytocin that flowed into my blood stream during our long sessions of nursing helped me keep my sanity.

Jule and the children, Christmas, 1977We had been promised Christmas in our renovated Chicago home.  Instead, we celebrated it on the dunes, which turned out to be as warm and traditional as we could wish for – right down to the photo of the children and myself coming down the stairs on Christmas morning. Jay took the Christmas break off from work and we had a hilarious New Year’s Eve with the children. I concocted a Chinese dinner. I even baked fortune cookies with handwritten fortunes inside. Unfortunately, they were rock hard and we needed a hammer to get our fortunes out! The break refreshed both Jay and me. Just three more months, the architect promised. We crossed our fingers.

a storm like no other

Then the snows came. Our cottage stood less than ten miles from the Michigan state border and we were swept up in the great Michigan blizzard of 1978.  No one could remember a storm quite like it, but anyone who lived through it remembers it to this day. Massive and powerful, it turned deadly before it was over. In the midst of it, I didn’t feel at all sure my children and I would survive.

Blizzard
Photo by Christian Spueller

Carrie and Kristy were home from school when the January 26 sky turned dark grey.  The National Weather Service had been warning of impending storm, but even they had no idea how big it would be. Within hours blowing snow pummeled our house and the dune, accumulating so quickly it obliterated the children’s play climber within two hours. And it just kept coming.

The South Shore trains stopped running so Jay could not get home. He tried calling us, but the lines were down and while our phone rang, no voice came over.  The snow didn’t stop until Friday afternoon. By then thirty inches had accumulated. The snow covered our ground floor windows and the cottage was eerily dark. Television reception had disappeared, but the radio kept broadcasting.  This connection to the outside world saved my sanity.  The broadcaster was snowed into the station for 48 hours.  At one point, he offered $100 to anyone with a snow mobile who would bring him a six-pack.

Beer was the last thing on my mind. We didn’t lose electricity.  I don’t know why, but simply felt grateful. It was a week before Jay could get home. Even then he had to bribe a taxi driver to bring him to the cottage since the beach road remained dangerous.  The blizzard was over, but not the snows.  Both in Indiana and in Chicago the next few winters would prove to be extremely snowy, but that’s the one that is seared on my memory.

escape from the beach

appalachian Mountains
Photo by Ben Bracken

At the end of February, we knew we needed to get away from winter. We rented a motor and drove south. It was tricky going because the snows followed us all the way over the Appalachian Mountains. After one twisting, turning miles-long drive down a steep mountain side, we pulled into a truck stop for a break.  We piled into the diner for lunch.

One of the truckers ambled over to Jay, “Did you just drive that rig down the highway?” he queried.

“Yep,” my husband said, “And it was damn frightening.”

“My, god, man” the trucker said, “No one’s been on that road all day.  You’re luck you’re alive.”

“Oh,” Jay replied. “I thought it was odd we didn’t run into any other traffic.”

much needed magic

Little girl at Disney World
Photo by Joel Sutherland

Overall, however, the trip was a great success.  The girls reveled in their first trip to Disney World although after coming out of the Haunted Mansion, Betsy chided Jay, “You shouldn’t have taken me in there.  I’m just a little girl and I was really scared!”

We continued on to Delray Beach to visit Jay’s mother at her condo.  It was great to get out of the trailer and into real digs for a few days before heading back up north.  By that time, there were some signs of spring.

spring revival

Easter cookies
Photo by Jennifer Burk

With spring comes hope. On Mar 20, we moved back to the city in time to celebrate Easter in our new home.  The house shone with gleaming new woodwork and freshly painted walls. The stained-glass windows now not only sparkled but no longer rattled.  The kitchen appliances were not in working order yet, but our neighbors brought us meals for a week.

 

I fell in love with 832 Belden the moment I first stepped inside two years before. It had been very dusty and rather dilapidated, but I imagined how love and polish would bring out its true beauty.  It had taken a lot of love and much more than polish to bring it to its present splendid condition, but now its warm, welcoming presence made my heart sing.  My children radiated joy as they claimed their new bedrooms.  Undoubtedly, I would have adored this house under any circumstances, but after our year on the dunes, my appreciation for this wonderful place overwhelmed me with the shear joy of being home at last.

“Life takes you unexpected places. Love brings you home.

 

832 Belden, Chicago, IL

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

Forever Our Favorite House

Indiana Dunes
a sense of deja vu

Beach house interior
Photo by Hutoo Abrianto

“Here it is,” my young friend Sarah Forsythe gleefully announces as she moves aside to usher us into her newly acquired cottage on Highway 30 along the Florida Gulf Coast.

I duck into the tiny light-filled living room. Something feels strangely familiar although I’ve never been here before.

Sarah chats away about how there was no kitchen before so she had to carve it out of a corner of the front room.  I agree it’s charmingly done, glancing around with chills of déjà vu running up and down my arms. We move into the bedroom hall. Sarah continues her merry monologue about the effort it had taken to transform what had been a hoarder’s shack into the exquisite beach cottage we now admire profusely. The hallway ends in a wonderful surprise. The entire back half of the house is one enormous master bedroom looking out over a small lake. Our friend has bought a house no one wanted because it was in such bad shape, and now she owns a home set between the ocean and a lake.

ah, it’s the paneling!

Southern lake
Photo by Jo Valery

“It’s incredible, Sarah,” I say. “And somehow it feels familiar.”

She smiles. “It’s the paneling.” She points to the ceiling, which is covered in knotty pine.

“Of course,” I reply. “It reminds me of our beach house in Indiana.”

“I felt the same way the first time I saw it,” she tells us. “It was one of the reasons I knew I just had to have even though Bill (her finance) thought I was crazy to take it on. The Indiana house was my favorite home ever!”

My daughters, I knew, feel the same way she does. “Carrie and Betsy often say they really wish we could have held onto it.”

“Why did you and my parents give it up? We all loved it so much?” she asks.

“There just came a time when holding on didn’t make sense any more, but that didn’t make it easy to let go.  The weird thing is none of us set out to buy a beach house in the first place. Yet, it was one of our best moves ever. One we never regretted.”

unexpected acquistion

Almost half a century had passed since Sarah’s family, the Forsythes and we had purchased the ramshackle house in Michigan City on the Indiana Dunes. Eventually we fondly dubbed the place, “1618,” its mailing address even though we never received mail there. Desperation drove us to buy it in the first place.

832 Belden Chicago, ILIn the autumn of 1976, Jay and I undertook the renovation of the 1895 Chicago row house we had bought the year before. What started as a fairly simple project ballooned into a blueprint for a major restoration. We originally envisioned updating the electric and plumbing throughout the house while remodeling the kitchen and bathrooms. By mid-October and after multiple sessions with our architect, John Drummond, we had a very different design. It now included restoring all six fireplaces to working order, reducing the four bedrooms on the third floor to two, stripping and staining every bit of woodwork throughout the 5200 square-foot house, and installing a new heating/air-conditioning system.

In the same week we committed to this major makeover, we realized I was pregnant with our fourth child. The new baby was due in May. Caring for an infant while surrounded with workmen sounded horrendous to me. I pressured Jay and our architect to get the project going.  Finalizing the design work, getting work permits, and lining up contractors, however, proved to be a long-drawn out process. By January we knew that the beginning deconstruction would not happen until May.  Our baby’s due date was May 15.  John, the architect, thought the renovation would take about four months.

close to drowning

Jule and the children, Christmas, 1977How, I wondered, was I going to get through a summer with four children under the age of eight with our home literally being torn down around us? The answer came to me as I waited to pick up my youngest daughter Betsy from preschool.  On the bulletin board, an index card offered a four-bedroom cottage on the dunes in Michigan City, Indiana, for rent.  Maybe we could live there for the summer.  Jay liked the idea.  I called the cottage owner.

tiny cottage
Photo by Clay Banks

We drove out to see her place, but knew as soon as we stepped in the front door that we couldn’t possibly live there for four months. Yes, it had four bedrooms, but each was minuscule and the common room was just as small. The miniature kitchen appliances were at least forty years old. This little cottage was meant to be a two-week summer refuge for a family who would “live” at the beach the whole time. A family of six, however, would be crawling all over each other by the end of less than two weeks.  By the end of a whole summer here, we’d be at our wit’s end.  Yet, as much as that house disappointed us, the idea of living at the beach for the summer still sounded like a good plan.

disappointing search

Lake Michigan Cottage
Photo by Josh Hild

At first, we read classified ads in our search for a summer place, but not full-summer rentals turned up. So, we hired a real estate agent who did rentals as well as sales.  For several weekends in a row, Jay and I drove over to Michigan City to look at possible rentals.  We stuck with Michigan City because the South Shore Electric train rail ran from that town into Chicago’s Loop and provide an excellent way for Jay to get to work.  For a thousand reasons I no longer recall, none of the houses that the agent showed us seemed feasible.  February was almost gone. Panic took over.

“Let’s consider buying,” I told Jay. “If we hate it, we can sell next year. But we might love it. The beaches are lovely and it’s close enough to have a permanent summer house there.”

risky choice

Lake Michigan from beach
Photo by Jeff DeWitt

“Are you kidding me?” Jay exclaimed.  “We barely know how we’re going to finance this renovation of our house and you’re talking about buying a second one?”

I pushed back. “We have to come up with a solution for the summer.  We can’t stay here. It’s not like we’ve never talked about a cottage on the dunes. Whenever we go up to Michigan to rent a place for a couple of weeks, we talk about buying a place someday.  So do Bill and Mary Florence.  They’d love it if we found a place on Lake Michigan.”

“We’ll look, but I’m not committing to anything,” he said.

The next weekend I felt certain we’d find a lovely spot just right for us, but the homes we loved were way beyond our price range and ones we could afford were too far from the beach to make the purchase worthwhile for us. By mid-March, our whole scheme looked like it would go down the tubes.

a crazy idea

Mailboxes
Photo by Mathyas Kurmann

“Maybe there are families who are ready to sell but haven’t contacted a real estate agent yet,” I said.

“That could be true, but how would it help?” Jay asked.

“Well, we could put letters in the mailboxes of all the houses we like. We tell them we’re interested in buying or in renting for four months.  If they are open to an offer, please contact us.”

“That’s crazy.”

“Maybe. But what can it hurt?”

The following weekend we slipped our letter into fifty mailboxes up and down Michigan City’s Lake Shore Drive.  On Wednesday, we got a call.  When we arrived at 1618 Lake Shore Drive on Friday evening, we immediately fell in love with the location.  The house sat several steps down from the road and away from what little traffic noise there was on that quiet street. A small sand dune sat between the house and the lake, protection the home from Lake Michigan’s winter storms. Up and over the dune was a two-minute walk to a deep beach lapped by lake waves.  At this point the lake offered enough shallow waters for children to play safely.

Knotty pine
Photo by Abby Anaday

The house took our breath away quite differently. It was jammed full of furniture and people and appeared to not have been cleaned in some time. Still, it had a long, spacious living/dining room, a good-sized if badly furnished kitchen, and five good-sized bedrooms. From the front bedrooms, you could see the blue-grey lake turning scarlet under the setting sun. Best of all, every wall and all the ceilings were glowing knotty-pine despite the poor upkeep of the rest of the house.  We both knew we wanted this house.  The asking price of $52,000 was, however, way beyond what we could swing.

The owner agreed to wait a week to hear from us.  The minute we arrived home, Jay called Bill Forsythe, “I’ve got a deal you can’t pass up,” he said.

cross your fingers.

The next weekend, the Forsythes drove out to the beach with us. They walked slowly around the house with us and the down to the beach, where we could see a faint outline of the Chicago skyline at the edge of the horizon.  As we mounted the steps back to our car, Mary Florence said, “It’s one of the ugliest houses I’ve ever seen, but, of course, we’ll buy it!”

So, we did. Over the years, Mary Florence transformed the “ugly” house into a beautiful home for all of us – the home that became everyone’s “favorite house of all.”

Of all the places you have lived, do you have a favorite? It would be great to hear about it right in this space?

1618 Lake Shore Drive
1618 Lake Shore Drive

“The ornament of a house is the friends who frequent it.”
Ralph Waldo Emerson

California, Here We Come!

Jellyfish in the Monterey Aquarium
we’re out of here!

Airstream at night
Photo by Stefan Widu

“We’re out of here” is most definitely the buzz phrase of the day right now.  After eighteen month or more of calling a trip to the backyard an excursion, literally thousands of Americans are taking to the road again. Among these excited travelers are a myriad of motorhome enthusiasts. Watching neighbors hitch up mobile abodes to their trucks and SUVs evokes poignant memories.

almost too good to be true

Airplane in flight
Photo by Nick Morales

One of our best motor-home escapades began in February, 1979 when an airline’s TV offer jumped out at me between segments of whatever program engrossed my four kids under age eight.  It seemed so unbelievable that I had to call the airline immediately to be certain my ears weren’t deceiving me. The airline rep assured me, however, that I had heard correctly. They were offering roundtrip tickets from Chicago to San Francisco for $189 – and for each full-fare adult tickets, a child under twelve could fly free.

I took a deep breath, “And are babies under two free as usual.”

“They are,” he told me.

“I’m buying,” answered and proceeded to acquire seven roundtrip tickets for $550.

“Wow!” the agent said, “You really milked this offer for all it was worth.”

you did what?!

Happy woman on the phone
Photo by Piero Nigro

I hung up the phone with a shaking hand. I stared at the receiver for a full five minutes before I had the courage to pick it up again. Then, I called my husband Jay. “Hi,” I said, trying my best to sound very casual, “I just booked us on a flight to San Francisco. We leave in two weeks.”

“What? A flight to California!  What about the kids? I wouldn’t be comfortable leaving them with Bodil all that time. She’s a great au paire, but she’s only nineteen.”

“We’re not leaving them. They’re coming, and so is Bodil.”

“We can’t afford that.”

“Yes, we can.  There was this great deal and I called right away to take advantage of it.”

Jay would have been well within his rights to tell me I was crazy at that point, but instead he simply said, “Cool. See you tonight.”

we really need the break!

Little boy with squirting hose
Photo by Phil Goodwin

Maybe Jay didn’t accuse me of being insane to make such a plan, but the truth was that at the moment I made the call I was over-the-wall stir crazy.  It had been an awful winter of frigid temperatures and snow storm after snow storm. Most days Bodil and I had been cooped up in the house from morning to tonight with three rambunctious little girls and one extremely adventurous toddler. My son Johnny spent his whole day turning the house into a jungle gym.  He climbed the fireplace mantles, the upright piano, the outside of staircases, and up on to kitchen counters to get into the cabinets.  By evening, Bodil and I barely had enough energy left to climb the stairs to our bedrooms.

oh, no, can we still go?

We needed a break, and sunny California sounded like paradise. Then, the day before our flight Kristy, our eight-year-old, came down with a fever. Was our trip off? I explained our dilemma to her pediatrician.

“Well,” he intoned, “She can recover in California as easily as here.  I wouldn’t give up the family vacation for a cold.”

San Franciso
Even in a hotel, I was happy to be in California.

As a result, Kristy and I spent the first three days of our trip in a San Francisco hotel while the rest of the family explored the city. But it was worth it. We had salvaged the vacation and I loved hearing the other children’s excited tales of spotting jellyfish and otters at the Monterey Aquarium.  On day three Kristy was fully recovered. Time to start trekking.

 

the adventure begins

California Redwoods
Photo by Martha Bergmann

We picked up our rented GMC motorhome and turned its nose south on the fabled Highway 101. Our first day, it rained so hard, we could barely see the way in front of us. Any moment, we thought, we’re going to pitch into the Pacific Ocean, but we pressed on. Just as night fell, we spotted a blinking neon arrow pointing to a campground. Jay swerved off the road and into an invisible driveway. Because we could barely see the other trailers and couldn’t discern any anyone assigning spots, we simply pulled into an empty slot.  The children were already sound asleep. We gratefully crawled into the couch bed. Bright sunshine woke us the next day. Gigantic redwoods surrounded us. They took our breath away.

as dreamers do

Pacific Coast
Photo by Eric Muhr

The rest of the journey felt like a dream come true. Any scenic viewpoint with a parking spot big enough for our giant vehicle compelled us to stop.   We had no schedule. At every stop, the kids got out and played. When it was possible, we walked down to the beach and searched for shells and driftwood or took off our shoes and wades in the shallows. At some of the beaches, we were treated with the sight of seals resting on rocks so close we felt we could reach out and touch them.  Other stops offered plummeting waterfalls just a short hike from the parking lot. Every day the ocean breezes were warm and enticing. Taking each day as it came, we were continually surprised by the unfamiliar beauty of the ocean and the shore – so different in every way from our ordinary stomping ground – Lake Michigan.

one minute, one hour, one day at a time

It took us ten days to drive to San Diego. Theoretically, because it is 500 miles between these cities, we could have driven it in eight hours.  That gives you an idea of what a slow pace we had set for ourselves.

California wine countryWith four little kids along, touring wine country wasn’t a top priority, but we wanted Bodil to get the full flavor of California so we did stop at Buena Vista winery, a very quaint and charming place, which had been a winery since 1856, except during American Prohibition. There we enjoyed a picnic lunch while we drank in the view along with the wine. We didn’t know we were sipping a beverage that had been judged the top wine in the 1976 World Class Judgment of Paris. For us it was just part of a very pleasant family outing.

oceans and windmills

Monterey PenninsulaAlthough I was the only member of our troupe who enjoyed seafood, I did convince everyone to eat at a beautiful bay-side restaurant in Morro Bay.  There I treated myself to the oysters. Six weeks later when I became very ill with Hepatitis A, which the doctors traced to an outbreak in Morro Bay, I could only be very grateful that the rest of my family had shunned seafood and, thus, remained well.

Street in Solvang CAJust south of Morro, we veered inland to the Santa Inez Valley so that we could visit the town of Solvang, a town founded in 1911 by Danish immigrants that has clung to its culture and language. We had heard it was like visiting a little bit of Denmark right here in the USA. Stopping there was a must for us because Bodil, our au paire, was from Denmark. The town thrilled her – especially being able to hold a conversation in Danish with a total stranger!

Solvang’s authenticity made Disneyland, our next stop, all the more glaringly artificial.  At least that’s how it felt to me.  To my children it was magical realism come alive and they loved the entire day we spent there. The amusement park was plenty of La-La Land for me. The next day we head out of Los Angeles.

to top it off – a safari!

Elephants at the San Diego ZooWe got no argument from the little ones because we told them our next adventure would be an African safari.  This was not too far from the truth. Once we boarded our vehicle in the San Diego Wild Animal Park (now the San Diego Zoo Safari Park) and headed out into the 1600-acre reserve, we were about as close to being on safari as most people ever get. Once we saw how vast the exhibit was, we wished we had saved more days. We and our children could have spent many more hours in that awesome location.

But time was running out. Our return flight was the next morning. Over dinner that evening on the San Diego Pier, Bodil and I tried to talk Jay into the idea that he could fly back to Chicago while we stayed in California with the children for another week.  He wasn’t buying!

I promised myself I’d be back. But I never returned.  Life is short.  And the world is very big.  Even more distant shores lured me from home on future journeys.

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

 

Creating Galatea

Pygmalion Creates Galatea
Pygmalion Myth

In a much-loved Greek myth, the sculptor Pygmalion, unattracted to the frivolous women of his city, creates a statue that represents his ideal of the perfect woman. He endows her with exquisite features and a graceful figure, but more than that he projects onto the sculpture every possible virtue. As he works, he falls so completely in love with his creation, who he names Galatea, that he can love no living woman. This ancient tale ends happily. Pygmalion appeals to Aphrodite the goddess of love who uses her power to bring the statue to life. Galatea and Pygmalion marry and raise a son who founds the city of Cyprus.

changing dreams

Line drawing -hanging from a heart
Photo by Nick Fewings

On the day, shortly after my twenty-fifth birthday, when my obstetrician informed me that it would be very difficult for me to conceive a child, I transformed into a Pygmalion figure. For over ten years, I had cherished the dream that once I finished school, I would become a journalist. That hope had informed a multitude of choices I made, including courses I took, part-time jobs I accepted and extracurricular activities to which I devoted my time. When I married, I fully intended to continue in that life protectory. Financial necessity forced me to accept other work when my search for a spot in journalism ran dry.  As soon as my husband finished law school and started working full time, I promised myself I would again seek a career in journalism and not give up this time.

a new avocation

Pregnant woman
Photo by Jan Canty

My doctor’s diagnosis, however, tilted my psyche off its axis. After that my choices altered. My ambitions wavered. Motherhood, which had once seemed inevitable, now became elusive, and therefore, the preferred goal. The determination to become pregnant drove away all other aspirations. Could the stress of my work helping abandoned, abused and neglected children adjust to life in foster care be contributing to my infertility? It was a possibility the doctor admitted. Ironically, when I quit my job, I took a job with a magazine publisher – but as a secretary, a mundane position with very little pressure.

My real work, my true avocation at that time, consisted of following the advice of infertility specialists.  I was both Pygmalion and Galatea, sculptor and creation. I molded myself into a woman dedicated to becoming a mother.  Through that endeavor, I transformed myself into a person who desired children more than any other treasure life could offer. Other parts of me fell, chipped away, to the studio floor.

escape the long wait

Road in Door County
Photo by Alisa Anton

In October, 1968, the brilliant fall colors enticed Jay and I to take our Fiat for a spin up to Door County, Wisconsin. We sped north out of the city through the vast farm fields of northern Illinois. Just over the border in Milwaukee we stopped at a favorite restaurant we had discovered on one of trips to visit my family in St. Paul. The Brat House served several tasty versions of that traditional German sausage.  Stepping into the wood-paneled space, we spotted an empty booth and slid in.

“Lucky we got here early or there’d be a long line at the counter,” Jay noted.

Beer taps
Photo by Gonzalo Remy

“I feel like I haven’t eaten in days.  I think I’ll have two brats,” I told him.

He smirked. “Keep that up and you won’t keep your girlish figure you know. Didn’t you have three donuts for breakfast.”

“So, I did,” I admitted. “But I’m famished and we have five more hours before we get to the motel tonight.”

“Can’t have you starving to death before midnight.  What kind do you want?”

anxiety – an unwelcome passenger

Milwaukee, WI skyline
Photo by Tom Barrett

After lunch, we decided to chance driving straight through Milwaukee.  The traffic might be heavy, but it cut several miles off the route. Negotiating the city freeway system took all of Jay’s concentration. I watched the grimy, old city neighborhood whiz by, allowing myself to think about how unusually hungry I’d been lately. It had actually been going on for about a month, but I hadn’t gained any weight. Even more worrisome, my menstrual period had been very light last month. Could the tumors have returned? I wouldn’t bring it up now.  This was going to be a great weekend.

“Hey, Yulsey, wake up. We’re there.”

I’d slept all the way to Elks Bay in Door County. “Geez, I’m sorry. I should have been keeping you company.”

“Nah, you really zonked. It’s funny you being so tired.  You’re always asleep when I get home if I have to stay late at the office.”

“It’s a good thing we took this break then.” I touched his arm.  “You must be the exhausted one now.  “Let’s get our stuff into our room.  We have some serious antiquing to do tomorrow.”

a brief respite

Fire in fireplace
Photo by Clay Banks

The knotty-pine paneled motel room had a wood-burning fireplace with a very big, deep leather chair and ottoman pulled up to it. Heavy wool blankets and flannel sheets covered the double bed. Yes, we needed this. But as I curled up in Jay’s arms, listening to his soft snore that night, anxiety about my hunger and fatigue nagged me. First thing Monday, I had to call the doctor.

It took three weeks before I could get in to see Dr. Grimes.  My concerns mounted. A small voice of hope suggested that maybe I could be pregnant. Perhaps that explained my symptoms, but they didn’t match anything my sister-in-law or my friends had told me about early pregnancy. I felt no nausea, none of the infamous morning sickness. I realized I didn’t know much about what it felt like to be pregnant. Although determined to have a baby, I avoided being with friends who were mothers. Being in their company sharpened my sense of incompleteness.

the verdict

Doctor with stethescope
Photo by Online Marketing

In the doctor’s office, I lay on my back, sheet draped over my spread legs and tried taking deep breaths. Would I ever get used to this ignominious position? I doubted it. “You can sit up now,” he said.

I pushed up with my elbows and clamped my knees tightly together. He was smiling. Smiling! “I’m okay?” my voice quivered. I’d come in scared, prepared to hear I needed another surgery, but he was grinning.

“You’re more than okay, Mrs. Ward,” he beamed. “You are expecting a baby.”

“I’m pregnant?” All the air in my lungs rushed out those words. The room spun.

Dr. Grimes reached a steadying hand to my shoulder, “Most definitely.”

“But, but I haven’t been sick or anything.”

“That’s not exactly the case, is it?  Didn’t you say you’d been very tired and that your appetite had increased?”

“Well, yes, but…”

“Those symptoms can signal pregnancy as often as nausea. About a third of pregnant women never suffer. Check with your mom. I get you find she didn’t have it. It seems to run in families.”

But his voice had faded away. Talk about symptoms and genetics were just a bunch of fluff. The real substance of our exchange, “You’re expecting a baby,” became a star glimmering so brightly that all other words faded into obscurity. Five years of anticipation and hope, despair and doubt had ended.

answered prayers

Pygmalion, Venus and Statue
Painting by Raoux

Pygmalion so fell in love with his own creation, he begged Venus, the goddess of love, to make her real. His prayers were answered. My prayers were also answered.

Even though I know that most, if not all, parents think their babies are the most beautiful ever born, when I look at photographs of the tiny Kristin Margaret, her astonishing beauty still haunts me. Kristin and I settled into a dream-like daily rhythm completely ruled by her needs. To be the best possible mother became my single most important ambition.Kristy at 6 months

In that dream state, a young woman’s sense of a separate self faded away. For fifteen years, being a mother encompassed me in a bubble. How I would wonder did I let myself get so lost? Could I have possibly juggled a career in journalism with motherhood? I have no way of knowing. It’s time to let go of the question.

It’s intriguing, however, how many times it gets asked?

https://www.theatlantic.com/family/archive/2018/12/motherhood-television-news-difficult/576913/

https://www.forbes.com/sites/anushayhossain/2016/07/20/day-in-the-life-being-a-journalist-and-mother-from-home/?sh=6a26a86b39d1

https://www.nytimes.com/2018/08/25/insider/working-parent-mom-journalist-juggle.html

Mom and baby at computer
Photo by Standsome worklifestyles

‘I’ve yet to be on a campus where most women weren’t worrying about some aspect of combining marriage, children, and a career. I’ve yet to find one where many men were worrying about the same thing.’ – Gloria Steinem, feminist and writer