Side-by-Side on Different Paths

Jule and Jay, mid 1960s
hovering over life

“Life happens while you are making other plans” is a popular cliché, but for me the true theme of my life was, “Life happens because you aren’t able to plan.” Sometimes, I simply failed to take the time to think ahead and work out the consequences to decisions I made. Other times, insurmountable barriers blocked the path I chose, and I had to re-navigate my life. This pattern began when I was twenty-three and my gynecologist upturned my world with the news that I might be infertile. Until his fateful words, I expected to wait to have a child until I finished my education and established myself professionally. Instead, I put my career plans on hold and threw myself into trying to get pregnant.

professional promise in an envelope

Exactly one year later, I was home from work sick with the flu, but new life bloomed in our tiny abode. I had not conceived, but our cat, Champagne, had. Fuzzy, grey-striped kittens cavorted in every corner of our living room. The kittens couldn’t hold my attention, however, because earlier that afternoon, I’d pulled a bulging envelope from our mailbox. Addressed to my husband Jay, it was from the Illinois Bar Association. Thick meant it had papers for him to sign, which signaled he had passed the bar.

Tense with excitement, I counted the minutes until he would arrive home from work and see the envelope sitting in the middle of the card table. Following his June graduation from law school, he accepted a position as an Assistant State’s Attorney, but keeping the job depended on passing the bar. He’d be over the moon. He loved his job, its fast-paced rhythm, the intricacy of the court system, the dealings with police, judges, defense attorneys, and defendants. Every day he headed out the door affirmed in his choice of profession.

one more wish

I pulled my knees up to my chin, and Champagne jumped from my lap to check on her little ones. As I waited for Jay to appear on the walk outside our apartment, I couldn’t help wish I was pregnant. Then everything would be perfect.

We hadn’t shared my infertility with our families, but they were asking questions. Barrenness sounded biblical to me, not a condition of the twentieth century. Yet, here I sat, an apparently healthy twenty-four-year-old with a womb as unresponsive as Sarah’s in the Old Testament. Champagne jumped back up and rubbed against me. “Too bad you’re not an angel in disguise,” I told her. “Maybe you’d be the one sent to tell me God had answered my prayer.” Her deep green eyes held mine solemnly. I could have sworn she understood.

The front doorknob rattled. Jay was home! I sat perfectly still, anticipating the moment he’d see the letter. But he walked right by the table and up to me, “Feeling any better this evening?  … Oh!” he jumped because he almost squished a kitten under his heavy work shoes.

“I’m fine,” I said. “More than fine.”

He twisted his head, “What’s that grin about?”

“Look on the table!”

“Holy smokes. Is it THE letter?”

I nodded. He grabbed and ripped it open. And jumped, hitting the ceiling with both hands. “Passed! I passed.  Your husband’s a real lawyer now, honey.”

celebration time

Euphoria swept over us. We ignored the budget and ordered Chinese takeout. We celebrated and talked past midnight. How strange it would be to be financially stable. Passing the bar assured him an immediate, substantial raise. By the next week, his salary would double what I brought home. It made our heads swim to think what that could mean. Dreams piled onto one another like a child’s house of blocks, colorful and covered with dozens of images.

Then at some point he ventured, “We could start saving to buy a house, one big enough for kids.”

My heart froze. “If we have children… if not, it would feel empty living in a house, just the two of us.”

He took both my hands in his. “Jule, it’s only been a year. Dr. Grimes says your body had to heal from the surgery before we can count on any eggs being produced. It’s important you don’t get negative. That’ll just stress you out and make things worse.”

I leaned against him. One of things I loved about him was his optimism, but I wished wouldn’t make infertility sound like something that would just fix itself. I was just so tired of living my life in a holding pattern while his life moved forward in such a defined direction.

“Maybe I should leave Children’s Division. Take a break. The doctor suggested that maybe the stress of the job was contributing to my problems.”

“But you love what you do.”

“I enjoy helping kids have a better life than they could have, but I don’t love the struggle. They can’t be with their natural families because all kinds of awful things happened to them there. And yet, they very often yearn to go “home” no matter how caring their foster family is.  There’s never a truly suitable answer. After three years at the agency, I am understanding why some of the older caseworkers are so jaded.”

a possible new future

“But what would you do if you quit?”

“I could go to school full time instead of just at night.” Where had that come from? Had I been chafing all along, frustrated by the slow pace of my crawl toward a bachelor’s degree?

“Could we afford it if you quit?”

My heart clenched a little that his first response was practical rather than supportive, but the rest of me was roiling with excitement. I wasn’t giving up on this idea. “Let me work on it, okay? I just need to juggle the budget a bit.”

He looked over at the letter propped against the salt and pepper shakers. “Tonight, though, we’ll celebrate this victory. Your next campaign can start tomorrow.”

He reached over and ran a finger down my cheek to my chin, traced the outline of my neck down to the barely visible crevice between my breasts.  Keeping his hand in place, he stood, circled the table, and bent over me. “I think I’m ready for bed,” he said. “How about you?”

I leaned all the way back to stare into his grinning face. “This would be a perfect night to become parents,” I murmured.

“Can’t hurt to try it,” he agreed.

the hard part

A month later, I stood, shoulders back, arms at my side, fists clenched just outside the door of my supervisor’s office. I admired and respected Mrs. Geis not just for the keen understanding she brought to our work, but how sensitively and deftly she molded untried young women, barely into their twenties, into capable, caring but effective caseworkers.

I dreaded telling her I planned to quit, to leave behind the children that had grown to be like nieces and nephews to me, the fosters mothers that “mothered” me even as they cared for the children I brought them. Building these relationships took time and dedication. Every time a caseworker left the agency, the families in their caseload experienced disruption, sometimes serious enough to capsize a placement.

Resigning felt like a betrayal.

Over the last two weeks, I had created a budget that would allow me to quit working for the six months it would take to earn my degree and to pay for the courses. But I shrunk from taking the next step.

“Mrs. Ward, did you need something?” My eyes flew open. The petite Mrs. Geis stood in her doorway not a foot away.

“Oh, I, ah,… I need to talk to you.” I felt like a schoolgirl called to the principal’s office.

“Come in then. You are pale as milk. It must be serious. I hope you’re not ill again.” She laid a small hand on my arm.

“No, no, I’m fine.” Silence gripped me.

“Sit down, please. You’re clearly agitated,” she said and closed her door. She sat on the other side of her battered wooden desk. Suddenly, a sweet grin broke out on her narrow face. “Are you expecting a baby?”

I wished I could lie. Being pregnant was a better reason than just quitting. I could not, however, sit there forever saying nothing. “No, I’m not having a baby.”

“Oh, my dear, I’m sorry to hear that. I know how badly you’ve been hoping for a child.”

Her concern for me drew a sigh. “But I am leaving Children’s Division.”

She nodded her head slowly. “I’ve noticed that you seem strained lately. If a case is particularly troublesome, I might step in.”

“No, it’s not that at all.” I didn’t want her to think I simply couldn’t cope. “I need to finish college. It’s just so slow going to night school. If I switch to full-time in January, I’ll graduate next August.”

“A wise decision, I agree. Can you make it work financially?” she asked.

“We can, unless I get pregnant. That would be a whole different ball game. But I’m not going to just sit around and wait for it to happen.” Both my hands flew into the air. “With my husband done with school and working, we can swing the tuition and a little sabbatical from work for me.”

“As much as we’ll miss you, I applaud this move.”

“Thank you for understanding.” I stood, eager to leave, but at the doorway I turned. “Telling the foster mothers I work with is going to be even harder than telling you.”

one of many new beginnings

We couldn’t know when I started classes at Roosevelt University in January, 1967, while Jay moved to the Narcotics Court at the State’s Attorney’s office that we had laid the cornerstone of our marriage.

From that day until he resigned from his law firm in 2007, Jay would pursue his professional life with unwavering dedication. For however many hours of each day it took, for however many days of each week it required, he devoted them to being a successful attorney.

During that same period, my life spun in kaleidoscopic cycles.

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Some Sneak Previews

Jule and Johnny in the yard

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

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

To Be A Dolphin

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

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

epilepsy reality

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

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

never grow up

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

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

brave front

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

“Earth to Mom.”

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

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

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

Back to reality, whatever that was.

 

 

Find Yourself in My Story

asphalt blur car city
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not an autobiography

As important as what a memoir must be is what it cannot be. Memoir is not autobiography. By far most memoirists are not people whose lives compel them to write a full-blown autobiography. If you are the first Black woman to become Vice-President of the United States, readers will want to know about your childhood, your education, and even how you manage to get dinner on the table while being the Vice-President. Thus, you will need to write an autobiography. And you’ll call on professional writers to help you craft memorable work.

The rest of us who wish to share part of our stories with the wider community have a humbler purpose. Everyone has fields of expertise. That doesn’t necessarily mean an ability that takes years of school or practice, like playing the piano well or teaching grade although those certainly are important and interesting skills. An area of personal expertise can be as simple as developing a satisfying relationship with a rescue dog. Yet, these smaller-scale accomplishments offer opportunities to develop compelling narratives that will hold readers on the page from the first word to the last.

finding myself in your story

The reasons I would read your memoir differ fundamentally from my motivation for reading Kamala Harris’ autobiography. I’ll read her book to learn about Kamala. When I read your book, I’ll be hoping to learn something about myself.

That’s right! The kicker of writing a memoir is that it isn’t “about” the writer. It’s about his/her/their field of expertise that can have meaning for you in your life. If, as a memoirist, I stray into simply drafting my own story just to tell you about me, you aren’t going to read it. Even if you thought you’d like it and bought it, you wouldn’t finish it. Reading must nourish us in a way. When a memoir does what it is supposed to do, the reader learns something they can apply to their own life. What they learn may even be a universal truth they already knew, but the memoir heightens its value for them.

finding the universal

The claim I make here is one of the seven principles of memoir writing, developed by Marion Roach Smith. She calls it the “Need for the Universal.” https://marionroach.com/?s=need+for+universal

As I continue the challenge of writing my memoir, I must find a way to universalize my argument. Where in my story would others see themselves? Six drafts of my memoir imprinted themselves on my computer screen before I finally discovered the four-leaf clover, the universal factor in the story I wanted to tell.

the way I was

In the early years of mothering my children who struggled with progressive myoclonic epilepsy, a rare brain disorder, I became overwhelmed with the effort to find a remedy for their illness and to care for them completely on my own. Eventually, however, I realized I needed to step back from their full-time care and share that responsibility with others more experienced than myself.

what i became

The universal exists in the tension, what Roach Smith names “the gap” between the two. https://marionroach.com/?s=create+the+gap  What stood between me and the best possible life for my children? It was the dread of a word freighted with misunderstanding, “institutionalization.” I needed to move from a place where no matter how tremendous overwhelmed I became; I was never going to be “one of those parents who put their children away” to realizing that good residential care for children and adults with developmental disabilities can be an exceptionally good thing.

a better understanding

The right place not only provides a happy, productive life for the residents but also involves their families in a wider community of support and engagement, which empowers advocacy and nourishes friendships. If a family is fortunate enough to find a genuinely good residential situation for their challenged family member both that child/adult and the whole family will lead fuller, richer, more satisfying lives.

As I write and construct this narrative, I must keep in mind that there is a full range of residential options for persons with developmental disabilities. We were lucky to find Misericordia. But there’s a larger principal at work in my argument. It is that a broad supportive community of some kind is a necessity of life for any parent but most especially for parents of children with special needs. It’s not easy to find that community but it does exist and it’s worth seeking out. More than anything I want my memoir to say to other parents:

don’t do this alone

 You deserve to be happy. You can find joy in parenting your special child who brings unique blessings into your life. But it won’t happen if you’re exhausted by their care. Help is out there. If you don’t have time to look for it, ask for the help of your family.

Our children need our advocacy, and we can only bring that to the table if we nourish ourselves as well as them.

 

backview of girl holding plush toy while walkingon dirt road
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Dylan: Nothing’s That Easy

Dylan: Part 3, “Nothing’s That Easy”

A few minutes after Dylan’s Sunday school class began, Bro-Bob stuck his head into the classroom door. Their teacher, Miss Anne turned, smiled at him, and nodded.  She came up to the table where Dylan was coloring a picture of Jesus as the Good Shepherd.  “Reverend Pilcher would like to speak with you.”

Dylan could only stare at Bro-Bob.  Fear held him in his seat.  He was in big trouble, he knew it. Yet, the big guy’s face lit up with a grin and he tipped his head over his shoulder in the direction of the hall.  Around him, the other students didn’t seem to notice. Finally, Dylan jumped up and followed the minister down the hall. Bro-Bob turned to him, “How about if we go up to the dining room.  The ladies are getting after-services hospitality ready. You and I could have first pick of the doughnuts.  Dylan’s stomach twisted into knots. He loved donuts, but right now he didn’t think he could swallow even the best of them.

In the cafeteria, he couldn’t focus on the array of pastries. Instead of looking delicious, they smelled sickening sweet, not the least bit appetizing

“Go ahead, choose as many as you want,” Bro-Bob urged. When Dylan didn’t move, he asked, “Aren’t you hungry?”

“No. I mean yah, sue, but there’s so many different kinds I don’t know what to chose.”

“That’s never a problem for me,” said Bro-Bob.  “I always go straight for the jelly donuts with the icing on the top because I know they’re filled with yummy raspberry jam.”

“I like chocolate better than anything,” Dylan said, “but chocolate ones sometimes have nuts inside. I hate nuts.”

Bro-Bob reached over and handed Dylan a rich brown donut with chocolate sprinkles on top.  “No bad surprises inside this one.  Just plain chocolate through and through.”

He then poured himself coffee from the big stainless, steel urn, and Dylan took a paper cup of orange juice. Bro-Bob led them to a corner of the parish hall near the multi-colored window that showed Jesus surrounded by children.

As they sat down, Dylan’s palms got sweaty.  Was the minister going to kick him out of Sunday school? Tell him what an awful thing he’d done to his brother?  He took too big a bite of donut and chewed it, focusing on keeping his mouth shut.  It wasn’t easy.  His mouth was so dry the gooey topping stuck to the roof of it. He grabbed his juice and gulped it down. That made him choke and cough. Bro-Bob took the glass from his hands and gently patted his back. Dylan felt his whole face heat up.

Before he could stop himself, he blurted out, “Why did you want to talk to me?”

“Well, it’s part of my job here at Three Crosses to get to know you, seeing as the children of the parish are my special ministry.”

Oh, there was that word was again.

“What do you mean ‘special’?”

“It means while God called me to serve all His people. In this time and this place, it is my particular mission to minister to the children of Three Crosses.”

“So special means particular?”

 

“Sometimes. Special is one of those words it’s hard to pin down.” Bro-Bob took a sip of coffee and put his cup down, “I bet you wonder about that word a lot, don’t you?”

“Why do you think that?  Did somebody say something about me to you?”

“Yes, I’ve heard a lot of good things about you.” Bro-Bob took a bite of his donut and jelly oozed down his chin.

Dylan watched while he wiped it off, feeling suspicious and confused.  Wasn’t this about the family picture he had drawn, about how he’d made Nick so mad?  Not knowing what to say, he knocked some sprinkles off his donut and licked them off his finger.

Instead of talking about Nick, Bro-Bob nodded quietly.  “Before I tell you all the fine things your teachers have told me about you, I want to tell you a story about me.”

Dylan took a careful bite of donut.

The minister pulled his wallet out of his back pocket and slid a photograph out of a slot inside. “My story starts with a picture.”

He held it out and Dylan saw a tall, chubby guy who looked something like the minister.  But he had curlier hair and lots of freckles, more than Dylan had ever seen on a grown-up. “Is that your brother?”

“Yep, that’s my big brother Edward.”

Big brother? Dylan looked again.  The man in the picture couldn’t be older than Bro-Bob. He looked like a teenager. “Is this an old picture?” he asked.

“No, I took that photo last month.”

Dylan stared again at the photo.

“You think he looks a lot younger than me, right?”

“Well, yeah, sort of.”

“That’s because in many ways Edward stayed very young. He has trouble learning and with knowing how to act around people. When he was little, my family didn’t know why he wasn’t learning things or why he didn’t respond in typical ways.  Now we know he has developmental disability called Autism Spectrum Disorder.”

“What is that exactly?”

Bro-Bob sighed heavily. “The thing is it’s very different from person to person. It takes time and involvement to understand these kids. It’s something we can talk about as we get to know each other.”

Light exploded in Dylan’s head.  “People say that Edward’s special, don’t they?”

“You got it. My mom has a poem she hung up in his room at home.  It’s called “Heaven’s Special Child.”

“I thought you wanted to talk to me about what I did to Nick in Sunday School last week?”

“You’re right, of course. Paster Adams thought I might be a good one to handle this ‘special’ ruckus” Bro-Bob winked at him, “given that you and I face similar sets of challenges at home.”

Dylan’s stomach clenched, “Like what?”

“For instance, the crazy word, “special.” Why do people call kids like Nick and Edward “special?” just because they have developmental disabilities?”

Dylan’s head bobbed up and down, “Right. It’s weird.”

“I agree.  According to the dictionary, special means ‘better, greater, or otherwise different from what is usual.’ That’s so vague it’s no help.  After all God made each of us uniquely ourselves. We’re all ‘different from what is usual.’”

“So why does everybody make a big deal over anything Nicholas does, but expect me to do everything perfectly.”

“It probably feels like that a lot of the time, but my guess is your parents and teachers really only expect each of you to do your own personal best.”

“I am trying.  They should know that.”

“You’re right.  If you feel like it’s unfair, it’s because it really is in a way. The things you achieve match well with the hopes and goals that your parents have for you. When life goes the way we expect it to go, we tend not to notice that – sort of like, we don’t get up every morning and say, “Hey, the sun rose today.” On the other hand, when something happens that’s much better than we expected, say the sunrise is especially spectacular, we stop and to “Wow!” It’s sort of like that with Nick. When he was born with Down Syndrome, your parents didn’t know what to expect. They knew he couldn’t achieve everything a kid without developmental issues could, but didn’t have any idea what he might be able to do. So, now when Nick does really well, it’s like an exceptional sunrise. It’s a wonderful surprise that makes them go “Wow!”

Dylan felt a shiver raise the hairs on his neck. He remembered his grandmother looking at Nick and whispering, “I thought he’d die young.  That had made Dylan furious. But now he asked, “They’re just happy he’s alive, right?”

Bro-Bob’s chin jerked up and his eyebrow pulled together. “Every parent is, of course, grateful for the gift of life for their child, but they also want each child to have a life worth living. Just like you and me, Edward and Nick need to accomplish goals that make them feel good about themselves.

“Nick sure does get happy bringing home those art projects.”

“And he has a right to be. Creating them was much harder for Nick than you or I could ever imagine.”

Dylan chewed on his lower lip. It sound right somehow. Yet…

“Still, it doesn’t seem fair to you, does it?” Bro-Bob said. “Seems like Nick gets an easy ride while you have to work hard.”

Dylan looked up and examined the minister’s face.  It creeped him out when grownups knew what you were thinking. It was like they had some superpower that went along with being bigger.

Bro-Bob smiled.  “I didn’t read your thoughts.  No one can read your thoughts. Whatever is in your head is your own and can only be known by other people if you actually tell them. Otherwise, we’re guessing.”

“But how come you knew exactly what I was thinking?” Dylan asked.

 

Part 4:

Nobody’s “Normal”

 

“Well,” Bro-Bob said, “It’s what I thought when I was your age. Grownups were always telling me that I had ‘to make allowances’ for Edward. I hated that.”

“So, you kinda guessed I was thinking the same thing?”

“Right. But I couldn’t be sure. It could be different for you.”

“What do you mean?”

“That not no one, not even people that know us well, can guess what’s in our heads. Just because we both have brothers with learning challenges doesn’t mean we feel or think the same way about it.”

“That sounds complicated.”

Bro-Bob’s deep laugh came right up from his belly. “You’re not making it easy on me, kid. Let me try an example. Do you ever get car sick?”

What did that have to do with anything, Dylan wondered. But he’d better answer. “Nah, I love riding in the car.  My mom does, though.  That’s why Dad has to drive me and Nick everywhere.”

“Right on. Same experience – same car ride. One person feels like upchucking, the person right next to her is just having a pleasant ride.”

“But what’s that got to do with me and Nick?”

“Just that some kids have a harder time dealing with sibs with disabilities than other kids.  Just because I have a brother with autism doesn’t mean I get what it’s like for you and Nick.”

Bro-Bob leaned back. Dylan nodded. “When we were littler, it didn’t bother me as much.  Nick was pretty good at playing with the other kids – just went along with everyone, you know.”

“Now it’s harder?”

Dylan’s whole body stiffened. What could he say? How could he explain? He bit his lower lip and blurted out. “A lot of times Nick really can’t keep. We can’t always include him. I feel bad. He looks sad. It’s not my fault, though. I can’t fix it.”

Bro-Bob’s hand fell heavily on his shoulder. “These years will be toughest for both of you. Everything about school and sports is getting harder for Nick at the same time it’s getting easier for you. You’re walking a tight rope and balancing is scary.”

“You’re right. It is. Can’t Mom and Dad see that?”

“I think they do.  That’s why they make a big deal when Nick does something well. They’re trying to keep his world right side up.”

“But what about me?”

“You’re not going to like it, but I have to be honest with you, Dylan. Nick’s not the only kid in your family who has to grow up differently from other kids. You do too.”

“But I’m normal!”

“I might like to debate that word sometime, but right now I want to help you stick out your chin, put your shoulders back, and face reality. Nick with all his extraordinary challenges is your brother. He’s your family. That means you are also different than most kids.

“That’s it, that’s all I can do – just face it, just tough it out?”

The big man smiled softly and shook his head. “I’m willing to bet it’s not all ‘tough.’ Nick has gifts that he brings to this world, gifts he shares with you. I’d like you to make an effort to notice those. We can talk about them the next time we meet.”

“Nothing’s good about having Nick for my brother.”

“Prove it to me then. Really try to see the good in Nick.  If you can’t find it, you can tell me that when I see you next Sunday.”

Dylan felt a little trapped.  “Okay, I’ll try.  I’m not sure I’ll find much, though.”

That hearty laugh again. “I think you’ll surprise yourself,” the pastor said.

Part 4: “Nobody’s Normal”

Monday at lunch as Dylan and Harley compared the amount of jelly on each of their sandwiches, Harley’s big brother George came along and slammed the back of Harley’s head. George didn’t hurt Harley but did call him “Dickhead” which made all a bunch of fifth-grade guys walk away snickering.  Harley scrunched up his whole face in fury but just hunched his shoulders over his lunch. When his brother was out of earshot, he said, “I wish I could get back at him, but my parents would be mad at me cuz they never see all the stuff he does to me.”

After school, Dylan thought about Harley and George all the way home. While he gobbled down the cheese chunks and apple slices Mom put out for them, he pulled a piece of paper from his school bag and wrote, “Nick never hits me for no reason and never calls me rude names.” As he finished, he felt his mom standing behind him. He swung around just in time to see her smile as she ducked for cover.

On Tuesday evening, Grandpa came to dinner. Afterward, he and Nick took turns playing checkers with their grandfather. Like always Grandpa let Nick win. That usually made Dylan mad because he didn’t think it was fair. Grandpa often beat him at games and never let him win. But that night he beat Grandpa fair and square. He saw how proud that made Grandpa and it felt good.

By Sunday Dylan had five things to tell Bro-Bob. Five, wow! Maybe things weren’t as unfair as he thought.

Once he and the pastor settled down with their donuts, Dylan handed over his list. He didn’t take a single bite. His eyes never left Bro-Bob’s silently moving lips as the big guy read.

He knew the list by heart and could almost hear the words aloud.

  1. Nick never hits me just to be mean or call me bad names like some other big brothers.
  2. I get to read to Grandpa, something Nick might be doing if he didn’t have reading problems.
  3. Nick is happy to play board games with me even though I don’t let him win like Grandpa does.
  4. Mom is so worried about Nick getting the right foods, she never nags me about what I’m eating.
  5. Nick tells me all the time that he loves me and he really means it.  I used to think this was embarrassing, but now I realize it’s a good thing.

 

Dylan put down the donut which was melting in his sweaty palms. “Is it too short?”

The pastor took a big bite of his jelly donut without answering and reread the list while he wiped the jelly off his chin. “It’s a good list. Short or long isn’t the point.  You made the effort to look at things in a new way. That’s what counts.”

“Are they the right answers?”

“There aren’t right or wrong answers, Dylan, just answers that help us deal with our challenges or ones that don’t.”

Dylan smiled. “I should have added that I can always talk Nick into walking our dog for me when it’s my turn.”

Bro-Bob smiled right back.  “Look at that. You’ve made a habit of noticing more good things about your brother.”

“But I still wish sometimes that he wasn’t my brother.”

“I get it. I felt about Edward that way sometimes.”

“Really?”

Bro-Bob crossed his finger across his big chest, “Absolutely, did. Lot of times.  I just wanted our family to be normal.”

“You mean like other families, right?”

“Yep. But there’s no such thing.  All families are unique.”

“That doesn’t sound right. Somethings must be ‘normal’.”

“Not really, Dylan.  It’s a word that’s misused way too much.  It’s really an idea that only works for arithmetic; it’s not a good way to describe human beings.”

“But people say it all the time.”

Bro-Bob pulled his bushy eyebrows tightly down across the bridge of his nose. “So, they do, but that doesn’t make it true. I think you’re smart enough to get it if I give you an example.”

Dylan didn’t feel that sure, but he said, “Okay.”

“The norm means the average.  For instance, if you have 100 boys and you measure how tall each of them is, add that number together, and divide the sum by 100, you get their ‘average’ height – or the norm.  But that doesn’t mean that any one of those boys is actually that tall.”

 

“So, you’re saying we can’t say one kid is ‘normal’ and another isn’t because we can’t measure them?”

“Not exactly, but I like that way of putting it.  People come up with all kinds of tests for measuring kids and grown-ups, but it’s true that those tests aren’t all that reliable.  Certainly not like measuring height.”

It was great that Bro-Bob talked with him just like they were friends. “Can we do this again?” he asked.

The big man nodded. “Anytime. If something is bothering you and you feel like you need a good listener, tell your parents you’d like to meet with me.  They’ll arrange it.”

That surprised Dylan. “Did they know we’d be meeting today?”

“Yes, Miss Anne suggested it to them. She and I have been friends since we were kids so it came to her that you and I had an important connection.”

People did notice him. They did care.  They didn’t fuss over Dylan like they did Nick, but his parents were watching out for him just the same.

“ I want to try to show my parents that I can work at be a good brother to Nick.”

“It sounds to me like he’s always had a great brother in you. Just remember there’ll still be times he annoys you and you wish he lived on the moon. That’s okay, too. I’m sure he’d be happy for any extra time you want to spend with him.”

Dylan looked down at his unfinished donut.  Maybe he’d take it home and share it with Nick. He wrapped it carefully in his napkin and stood to leave. “Yah, I know. See you around, Bro-Bob.”

“See you around, Dylan.” The pastor struck out his hand. Dylan like the strong firm feel of the handshake. Like they had a pact. They had each other’s back. That made Dylan feel very special!

 

Tikkun olam: Restoration of the World

yellow bokeh lights
Photo by Pixabay on Pexels.com
a continuing resolution

In September, which is always the real beginning of a new year for me, I vowed I would write a memoir.  I promised I would see this project through to completion. The focus of the memoir is that part of my life I devoted to parenting four extraordinary children, two of whom suffered from a progressive neurological disorder. While I drafted this work, I used my blog as an online journal to share my writing journey with you.

many mentors

Along the way, I’ve gained a range of knowledge from several “how-to” sources for memoirists.  These were often quite helpful. More inspiring by far than these guides, however, were the enlightening memoirs of authors who walked before me.  These brave ones lit my way. One of the most illuminating of these was Ellen Blum Barish’s Seven Springs. In this memoir, Blum Barish shares the ancient Jewish belief that humans are called to tikkum olam, “the restoration of the world.”

Then in lyrical prose, she offers us a wonderful narrative that does just that. As Blum Barish sets out to break the silence that locked an event from her past away in the darkness, she sheds light not just on that incident, but on her whole life. In seven beautifully interlocking chapters, representing different phases of her life, she leads the reader through a series of riveting discoveries to a climax that frees not just Ellen but others who had been bound by the same silence. In the end, the reader sees the power of persistence, the beauty of light, and the impact of breaking unnecessary locks. The story calls us to ask our own questions. It inspires us to push away past fears and uncover our own truths.

meet ellen

Because I found the book so inspiring, I approached Ellen and asked her to share with me the story of her writer’s journey.  I share her answers with you here today.

 When did you realize you wanted to be a writer?

I’ve been writing since I was 6 or 7 but was only able to call myself a writer 10 years ago!

In elementary school, I began with awful Dr. Seussian poetry and later began to journal. But by seventh or eighth grade I ran into a reading comprehension issue that was impacting my test scores. My parents sent me to a reading tutor which helped me pass tests and make a B average in high school English but like liked reading and writing so much that I minored in English in college. It wasn’t until I was two years out of college, working as a travel writer for Mobil Travel Guides, that I decided to go back to school for a master’s in journalism. I loved 60 Minutes -still do! – and wanted to make a change in the world. But even after earning that degree and working as a reporter, feature writer, and editor, I still didn’t call myself a writer until many years later when I was accepted for a writing residency at Ragdale in 2012. That’s when I knew that I was my best self, my happiest self, writing. It’s also where I began to write my memoir.

What drew you to writing as an avocation and/or profession? Why is it important to you?

Now I can see that I reached for the page as naturally as a painter reaches for a brush or a musician to an instrument. Once I connected with it, it became as essential to me as breathing.

Anne Frank wrote that paper is more patient than people, and I agree. The page has always been my best listener, the place where I feel the calmest and the way I make meaning from my life.

What are the top three challenges you face as a writer?

I continue to struggle, like most writers, with navigating rejection, trusting the process, and managing ego. But in recent years, I’ve come to understand that there are no wasted words. I believe everything we write leads to the next thing – our words build on each other – even if that first thing doesn’t leave our desk.

My challenge now is clarifying my mission with words. What is my goal? Am I writing for self-discovery? To teach other writers? To entertain? To promote? How can my words help bring people together? Unify. Heal. I want to do more than put more words out into the world.

I want them to work harder now than I did before.

What is the best thing that’s happening for you currently? How does it feel? What do you think it will mean for your future endeavors?

I am savoring this year of my memoir’s release. It has felt incredibly satisfying, gratifying, confirming, and surprisingly healing, not just for me but for some of the people I write about in the book and readers who have written to say so. This experience makes me want to write even deeper pieces – words that move people to feel something powerful and act on that.

If your writer’s life laid just the way you’d like it to, what would that be like? What’s the most important aspect of this dream? Why?

Writing pulls me in two directions. My writer self – the ego – would certainly love to see continued press coverage of my memoir, Seven Springs, more book sales, and a writing award or honor. I have ideas swirling for two more book-length projects and a TEDx talk idea, so I’d love to get these in motion.

Ellen Blum BarishBut my teacherly-coaching self focuses on coaching writers who want to improve their craft and get their work out into the world. It feels important to me because I know the potency of the healing that can come from getting a powerful story from one’s life onto the page – whether it is for self-discovery, legacy, or publication. Returning to my childhood trauma and finding words to write it released something and made more space available inside me. I have more energy, resources, and experience to share with others. And doing so fulfills a desire for tikkun olam in my spiritual life – the desire to do better and help repair the broken parts of the world.

 

 

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

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

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

 

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