Still Saying Goodbye

still in our hearts

Two days ago, we celebrated the ninth anniversary of the passing of our oldest child, Kristy. Celebration may seem an odd word to choose. Yet, there are two reasons it is entirely appropriate. First, by the time she left us, Kristy deserved to be in a better place than this one. Second, we had been exceedingly fortunate to have shared forty-five years of life with her. There had been so many times we feared she wouldn’t reach her next birthday.

The following is the story of one of those times.

Deep heart wishes

On her fourth birthday, Kristy sat on a booster seat at our round oak table in the dining “L” of our new little house. Surrounded by her sisters, aunts, cousins, and uncles, under pink and white crepe paper streamers, amidst purple balloons, she drew in her breath and blew out four candles with one breath. “I wish for a kitty,” she announced.  No one had the heart to tell her you shouldn’t tell your wish.

But I kept my wish silent. For the past year, living with Kristy was a rollercoaster ride of increased hopes as her vocabulary increased, she learned to ride a tricycle, and she engaged readily in play with her little sisters, and deepened fears as her seizures happened more and more frequently. Not a single month went by without Kristy suddenly going into convulsions. They were no longer connected with fevers or illnesses of any kind, but random–and occasionally dangerous.

without warning

The most recent one had occurred while she was rocking her lullaby doll in her little green chair. Her arms flew outward, and the doll sailed across the room. Kristy’s head jerked back so quickly that I barely had time to unlatch Betsy from my breast. I lay her in the middle of the rug, grateful that she didn’t crawl yet. Her immediate shriek pierced my ears and my heart, but I had to ignore her.

By this time, Kristy’s back had arched, her legs and arms were spasming, and she had fallen face forward onto the floor. Carrie was already at her side, looking frightened, but patting her back–and she was only two years old! With shaking hands, I slipped a couch pillow under Kristy’s head, turned her to her side, and gently held her arms and legs so that they wouldn’t crash into the dining room chairs. Almost as quickly as it had begun, the seizure was over, but I sweated like a marathon runner.

worse than ever

As Kristy’s muscles relaxed, I slid my arms under her to lift so I could move her onto the couch. She screamed in pain. That shocked me. Usually, after a seizure, Kristy was a limp, unresponsive rag. I couldn’t see any injuries. Nothing was bleeding. But each time I tried to move her, she screeched. Behind me, Betsy’s cries subsided to whimpers. I glanced over my shoulder. Across the room, Carrie sat with her back to the fireplace, legs straight in front of her, and the baby in her arms. She had thrust her tiny thumb in Betsy’s mouth. My heart went out to her. Two years old and already shouldering responsibilities!

I needed help. The best possible answer was my neighbor Dee, a nurse at nearby Grant Hospital. I lay Kristy back down and moved into the kitchen. My hands were so slippery I could barely hold on to the phone, but I managed to dial Dee‘s number. “I need you over here now,” I blurted out, and hurried back to Kristy.

band of two angels

Two minutes later, when Dee flung open my front door, her ten-year-old daughter Evie was right behind her. “Kristy’s hurt,” I told them. Dee scrunched down beside my little girl and studied her. I went to Carrie, scooped up the now sleeping Betsy, and pressed my lips against Carrie’s dark curls, drinking in their soothing scent.

“What do you think?” I asked Dee. By now, Kristy was struggling to get up, but when she put her left hand on the floor to brace herself, she screamed again.

“Could be a broken collarbone,” Dee said. “We need to get her to the hospital. Evie, get me a clean diaper.”

Her daughter sped up the spiral staircase and down again in seconds. Dee formed a makeshift sling for Kristy’s little arm. “Jule, wrap her in a blanket. Evie, you stay here with the babies. I’ll bring the car upfront.” And she was gone.

yet another hospital run

Five minutes later, Dee dropped us at the emergency entrance of Children’s Memorial just two blocks from our home. X-rays confirmed my friend’s speculation. Kristy came home with her arm supported by a shoulder immobilizer, a combination of a sling and a strap around her waist to brace the injured arm. One of Kristy’s strongest traits had shone with full brilliance at the hospital. Although only four years old, she had listened to instructions attentively. She accepted the immobilizer without complaint and after that, she complied with the whole regime the doctor had set up for us.

time to heal

For the first week, I put a pack of frozen peas over her collarbone for twenty minutes every couple of hours. During that time, I would sit on the couch, slip Kristy onto my lap, and read a picture book aloud. Carrie crawled up beside us. I tried to coordinate these sessions with Betsy’s infrequent naps. Sometimes I would enlist Evie to come over and take Betsy for a walk in her stroller so I could spend the time with Kristy. The immobilizer remained in place for a month, but it didn’t always ease Kristy’s pain. Reluctantly, I added children’s Tylenol to the phenobarbital she was already taking.

reprise emergency

At the end of the month, I walked Kristy back to the hospital. We cut through the brick alley behind our townhouse complex on our way. Halfway there, she cried out, flipped backwards, and went into convulsions. I caught her going down, but her head hit the edge of a brick hard enough to bleed. I balled up the cloth of my skirt and held it against the minor wound.

For twenty minutes, we sat in the deserted alley. The sharp bricks cut into my legs as I prayed that help would come, but my angels slept that morning. When Kristy was fully awake, we continued our walk to the hospital. She came home without the immobilizer, but with four stitches on her forehead.

move on through the maze

There were times between such incidents that I just wanted to curl up on the couch, drink coffee, and read a good romance – anything to escape the reality I had somehow constructed for myself. But instead, every day I threw myself into the myriad of other responsibilities that were mine as the mother of three small girls. Romance could wait.

The Good Life

Candy Day volunteers get ready to got out and beg.
candy on a mission

If you live in the Chicago Metropolitan area, this weekend you cannot miss a major fundraising drive. This coming Friday and Saturday, over 10,000 volunteers head out to the street corners, bus stations, train stations, and groceries stores of this bustling city and suburbs to beg. Wearing bright white and red aprons, they approach everyone they meet with a friendly smile and the request, “Help Misericordia.” As they do so, they offer the recipient a delicious packet of Jelly Belly Jelly Beans and a small card explaining the work of a magical place that is the home for over 600 persons with physical and developmental disabilities.

As you’ve learned from other blog posts, two of my children, Kristy and Johnny, once were lucky enough to live at Misericordia. The good work goes on and parents continue to be grateful. Here’s one mom’s story. I’ll let her tell it in her own words.

one mother’s story

“It’s hard to believe that it’s been almost 40 years since that day when two of my best friends and I drove my son Jon to move into Misericordia South. He was only four and a half years old. I knew he needed the care they could offer him, but it still was one of the toughest days of my life.

tears into triumph

“I could not know then that it was also the beginning of what would become a rich, fulfilling life for my son! For the first six years, even though I saw how he thrived at Misericordia, I felt guilty and sad whenever we took him back after his frequent home visits. I would cry on the way to our house. But as the years rolled by, I slowly realized that Jon was not only happy at Misericordia, he prospered there! Every member of the staff adored him. Endearingly, they called him “Chocolate Eyes,” offered him the special attention, loving care, and stimulation that he needed. Then, when he came home each weekend, his brother and sister and all their friends outdid themselves, constantly entertaining him. His was a ‘good life.’

“When Jon was ready for school, he took the bus from Misericordia to Oak Park for elementary, middle, and finally high school. I had the privilege of serving as ‘honorary room mother’ throughout his school years.

exciting new challenges

“Midway through high school, Jon moved to Misericordia North and became the first resident there to have a g-tube! Pam Dreyer, the Head Nurse, told Jon it was his job to teach all the other Mis nurses about g-tubes, and he loved this great new challenge!

“Moving to Mis North meant Jon transferred to Park School in Evanston. He loved his new school environment, but was especially excited about the many new opportunities, like the art studio and the bakery, that he found at the North campus. His good life had become even better.

“His life got better yet when the McGowan Home opened its doors. One of its original sixteen residents, Jon moved into this beautiful home designed especially for residents who depended on wheelchairs. Windows and tables sat at wheelchair height. Rooms featured wide open spaces. Hallways were also double wide. An extra big elevator served its two levels. With its open-plan living-dining-kitchen, it had a true family style of living. And true to the Misericordia form, the staff were exceptionally caring and competent.

good, better, best
Jon loves everyday at Misericordia
Jon Lives the Good Life

“Jon’s life continues to be rich and full, and over the years, he has grown in ways I never dreamed possible. He’s busy every single day, and he has the advantages of art and music therapy; physical, occupational, and speech therapy; as well as recreation and leisure activities, such as opportunities to go bowling or take part in Bob & Madge’s sing-alongs. He also regularly spends time in the fitness Center, gym, and pool areas. And somehow, despite his busy life, Jon ‘finds time’ to come home to visit regularly!

a second family

“Misericordia long ago ‘adopted’ both Jon and me into what I consider to be our second family. I love volunteering, spending time with Jon both on campus and at home, and interacting with the amazing staff and the other residents and their families. And as I age, I sleep better at night knowing that Jon has a real ‘home away from home’ where his caretakers genuinely love him and where he is safe and happy. Blessings and my heartfelt thanks to Sister Rosemary, Fr. Jack, Mary Pat O’Brien, and the entire Misericordia staff who work tirelessly to make Jon’s life so happy and healthy!”

That is Cynthia and Jon’s story.

one of many good life stories

What is almost unbelievable, but true, is that Jon’s story is a typical Misericordia story. So, please, if you live in the Chicago area and pass a Candy Days volunteer, drop a donation in their can and enjoy a packet of Jelly Bellies.

You don’t have to live in Chicago to help. Thanks to the internet, Candy Days now has a virtual presence as well. Check out the link below.

Our Virtual Candys Days fundraiser is underway. No need to wait until the last weekend in April to donate!! You can donate now or create your own fundraising page! It’s quick and easy, just visit:

Donate to Sister Rosemary’s page: https://secure.frontstream.com/misericordia-candy-days-2023/participant/SrRosemaryConnelly

Set up your own fundraising page: https://secure.frontstream.com/misericordia-candy-days-2023

https://secure.frontstream.com/misericordia-candy-days-2023/

 

Candy Days Banner
Here Comes Candy Days!

A New Baby Ushers in an Unexpected Change

Newborn Betsy and Jule in hospital

This won’t be in the memoir even though it completely changed my life.

baby number three

On an unusually mild January morning in 1973, I awoke to the powerful tug of a contraction across my belly. Our third child would be born that day. Jay and I determined we didn’t want to spend the entire day in a hospital. We calmly woke Kristy, age three and a half, and Carrie, age two, and fed them their breakfast. By the time we called Jay’s mother, the contractions were coming closer together. While we waited for their grandmother to arrive and watch the girls for us, I sat in our big oak rocking. Kristy and Carrie nestled around my belly, and I gently sang and rocked to soothe them and myself.

labor at the movies

“Gramma Mary,” as they called her, arrived in a half hour. Jay and I hurried out and went – to the movies. (We didn’t, of course, tell his mom where we were going.) The film Sleuth, with Michael Caine, was playing at the Hinsdale Cinema. Its suspenseful plot let my mind ride above the increasingly intense and rapid contractions. When a contraction started, I’d grip Jay’s hand, he’d look at his watch, time it and whisper the duration to me. The solution to the mystery eluded me, and I was determined to remain until the movie ended. We heard loud whispers in the row behind us. One of which was a shocked, “I think she’s having a baby.”

off to the hospital

Movie over, we sped to the hospital. When the emergency room nurses realized the intensity of the contractions, they summoned the obstetrician. They sent Jay straight to registration and me right into Labor and Delivery.

There, a resident doctor examined me. “She’s nine centimeters and dilating rapidly. Have you called her obstetrician?” he demanded.

“Yes.” a nurse replied. “As soon as emergency informed us they thought she was pretty far along.”

“Good, well, get her husband up here. He can do the paperwork later. This baby is coming now.”

Two interns slid me onto a gurney for the hurried ride to the delivery room. Jay in his heavy khaki overcoat and Dr. Halama, my obstetrician, rushed through doors at opposite ends of the room like a choreographed scene in a stage play. My doctor wore a tuxedo, which the nurses helped him cover with a surgical gown. I laughed, “Where were you?”

And then I gasped in pain. I panted through the contraction, trying my best to keep my breathes even. Jay stood at my side, holding my hand and gripping it so hard it hurt. Hospital regulations had prevented him from being present for Kristy or Carrie’s births, so we had changed doctors and hospitals so that he could witness this one. The enormous pressure in back and lower belly subsided a little. I repeated my question to the doctor.

birth of our party girl

He laughed. “I was at the cocktail hour before a friend’s dinner party. This baby is making me miss out on fresh lobster.”

“In January, that’s ridiculous.” I retorted, and then gasped again. “Count,” I shouted to Jay and tried to pant in rhythm with his slow, “1…2… 3.”

Dr. Halama wheeled his stool over to the bottom of the delivery table. “The baby is crowning,” he said. A nurse stepped to either side of him, instruments I couldn’t see in their hands.

“There’s the head,” he announced. Excitement blocked my sense of pain, but my body contracted and shoved.

“Slow down. Try not to push. I’m easing a shoulder out,” the doctor said.

A nurse turned to me. “I’m sure it’s a girl. She has such a beautiful face.”

Across from her, the other nurse shook her head. “No, look at those broad shoulders. It’s going to be a boy.”

“Just let me push,” I begged. “Then we can settle this.”

“Just a minute. There, got the other shoulder. Good work. Okay, one last push.”

I bore down with all my strength, felt the pressure of the little body sliding down the birth canal, and seconds later, a high-pitched cry filled the room. “You have a girl,” the doctor told us, holding up the screaming, failing little human being.

hello betsy!

“Give her to me,” I demanded. I couldn’t stand to see her cry. They cut the cord, wrapped her in a soft blanket, and laid her next to me. “Hello, Betsy,” I whispered.

Betsy’s birth was the catalyst for an unanticipated upheaval.
She and I remained at the hospital for three days. She had been born on Saturday evening at 6 o’clock. On Sunday, Jay brought Kristy and Carrie to the hospital to visit their new sister. They couldn’t visit the maternity floor, but the baby room had windows along a corridor outside the ward. I stood on the other side of the nursery and watched as the nurse rolled Betsy’s bassinet up to the window, lifted her out, and showed her to the toddlers on the other side. The tiny bundle instantly fascinated Kristy, but Carrie caught sight of me. She lifted her arms and wailed, “Mommy.”

a trip to the zoo

To distract Carrie, Jay took the girls on an excursion to the Lincoln Park Zoo. It was unusually mild for a Chicago January that week. Going to the zoo was a logical choice of diversion. The Brookfield Zoo, however, was much closer to our home in Western Springs. Still, Jay drove to the Chicago Loop and then north to Lincoln Park. He wanted to take his children to the city zoo, the one that held many fond memories of our pre-suburban days.

As far as I know, they had a wonderful time, but I never really heard about the zoo at all because what followed was much more momentous. On the way back to where he had parked our car, Jay passed a “For Rent” sign in the window of a building that sat on the south edge of Lincoln Park. It stopped him cold.

When he and I had frequented the Zoo in the early years of our marriage, we always admired these stately buildings that lined the south end of Lincoln Park. He couldn’t resist taking a peek. He fell in love with the apartment and discovered, much to his surprise, that the rent was in our price range. Wheels started turning in his head.

Jay has questions

That evening, he left the girls with his mom and rushed to the hospital, full of his discovery. Betsy and I had spent a quiet day. She was a champion nurser, and I knew enough about breastfeeding by then to let her nurse at will. Well rested and feeling at ease with the world when he arrived, I listened calmly as his story burst forth. He finished with, “I want you to see this place. It is unbelievable!”

By the following Saturday, one week later, I was exhausted. Jay’s mom had returned home. He was back at work. Juggling the needs of three small girls was exponentially harder than caring for two little ones.

Jay had made an appointment for us to view the city apartment that afternoon. Tired as I was and as crazy as it seemed to take three small children, one merely a week old, out into the rapidly dropping temperatures of a Chicago winter, I needed to get out of the house. Any excuse would do. The ride would entertain the girls, and I could nurse the baby on the way to the city. As we sped east on the Eisenhower Expressway, it was with growing excitement that I watched the skyscrapers of Chicago’s Loop fill the horizon. We swung around Buckingham Fountain. Its ornate sculpture encased in ice delighted Kristy and Carrie. While we drove north along Lake Shore Drive, they both pressed their little noses against the window to watch the crashing waves of the winter lake.

The rental agent waited for us at the central door of the apartment complex. There was no elevator, but the apartment was on the first floor. Its spaciousness overwhelmed me. Twice as large as our home in Western Springs, it had twelve-foot high ceilings in every room but the kitchen. The rooms included a formal library with its own fireplace. Painted buckled on walls. The kitchen appliances were decisively vintage. Doors squeaked on their hinges. The bathroom floors had cracked tiles–but there were three bathrooms!

But I questioned. Why are we here? We have a home. We’re settled, right? Betsy had been whimpering throughout the tour. Kristy and Carrie ran from one empty room to the next as though in a gymnasium. Without warning, the noise, or maybe my increasing uneasiness, got to Betsy. She let out a loud, piercing wail.

“We have to go,” I told Jay.

“We’ll get back to you,” he promised the agent.

the choice we didn’t see coming

We rode back to Western Springs in silence. After dinner, Jay walked across the living room floor singing to Betsy while I gave the girls their bath and got them to bed.

Once I returned to the living room, I settled in a huge armchair, a Salvation Army find, so comfortable that we still have it today. I nursed Betsy off and on over the next two hours. Jay made us cocoa. And we talked. We relived every detail of the apartment and imagined how we would live there, how each room would function for us, how we could decorate it. Our imagination pictured living in the city again, close to the zoo, the park and the lake. Jay spoke of how easy it would be to get to work.

What was holding us in Western Springs? We definitely didn’t plan to stay for the rest of our lives. But didn’t we need to stay in the suburbs for the sake of the excellent schools? Maybe. We had just assumed that, hadn’t we? Kristy was only three, two years away from kindergarten. That gave us plenty of time to explore the city school situation.

By ten o’clock, we were ready to move. “I’ll call the agent in the morning,” Jay said. But when he called the next morning, the rental agent told us another family had rented the apartment late Saturday evening.
That stunned us both. I fixed breakfast in silence. He hunched over his scrambled eggs and bacon. I held Betsy in the crock of one arm so I could nurse while I encouraged Carrie to eat some eggs from a spoon. Kristy pushed her eggs around in patterns on her plate.

When he finished, Jay sat straight up in his chair. “It wasn’t about the apartment–not really. We’re still moving back to the city, right?”

I smiled and nodded.

photo of buildings
Photo by Chait Goli on Pexels.com

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.

 

 

Am I Writing a Best Seller?

low light photography of books
Photo by Suzy Hazelwood on Pexels.com
a thought-provoking question

In her most recent email to fellow writers, my friend, and colleague, Erin Donely, challenged her readers with the question,” Is being a ‘best seller’ the best idea?”

“Every book reaches a critical juncture in its development,” Erin states, “when you must decide: Do I want this book to reach the masses, or does it serve a more specific audience? It’s hard to know at first.” (Erin Donley, erindonley@erindonley.com. July 29, 2022.)

Erin emphasizes that authoring a book about your life can be – terrifying, traumatic, and cathartic. But if you aren’t clear about what you are doing, the whole project will turn into a major burden.

You must be clear about two major aspects of your memoir. What is its purpose? Who is its ideal audience? The answers to those two questions will give a memoir its direction and its organizing principles. Without them, you have nowhere to begin because you don’t know where you are going.

have a higher purpose

To ensure that your book serves its highest purpose and reaches its most ideal audience, Erin suggests, you need to ask yourself why should this book be written. Who will benefit from reading these words? And most importantly, what do I need to get this work done?

Answering these questions correctly, she promises, will “set you free.”

So, I challenged myself to answer Erin’s questions, to fill in her blanks.

Starting with the question, “Who needs to see these words beside me?” I formulated the following.

“More than anyone, I want all the people who supported me as I cared for Kristin and Johnny, my two extraordinary children, to read it as soon as it’s available to them. Every one of them needs to know what their strength and caring meant to me and to my children, how they sustained me and kept me going when I thought I’d never make it, and how much I will always thank God for bringing them into my life.”

These helpers and supporters were family members, friends, neighbors, teachers, care workers, and other parents of persons with disabilities. Like angels, there always was “someone,” just the right “someone” for the moment. I know they won’t all find themselves directly referenced in the memoir, but I hope they pick up the vibes of gratitude that the book will carry.

all parents need to know

In speaking directly to those who upheld me throughout my children’s lives, I hope to speak indirectly to all parents. Raising a child, any child, from infancy to adulthood, is a challenging task and they don’t have to go it alone. We all need support. Hopefully, parents hear me say, “Open yourselves to help whenever it’s available.” I didn’t do that as often as I should have.

When I envision speaking directly to this audience, Erin feels confident that I’ll set my book free – “from having to do the heavy lifting that commercially viable books require.” I can draft our story without seeking expert advice about my children’s medical conditions and without comparing my book to others on the same topic.

the toughest question

That leaves me with Erin’s last and very central question, “What do I need to get it done?”

At this point, the whole story is there – all twenty-seven chapters of it! You’re right. You don’t want to read twenty-seven chapters and I don’t blame you. I am working hard to hone it down to ten succinct chapters, following the advice of one of my other mentors, writer, Ellen Blum Barish (http://www.ellenblumbarish.com/). She suggested last fall that I pick a number and stick with it. “Your instinct for an important number can be a true guide,” she assured me. She also said, “Find the stories that make Kristin and Johnny ‘Pop off the page.’” I’m trying to do that. Johnny adored everything Seuss and would have loved her advice.

Another respected mentor Marian Roach Smith (https://marionroach.com/)has helped me seek “the turn for home” like a good racer. I’m doing my best to keep pace. The memoir is not a never-ending story. It’s coming closer every day to being a finished project.

Thank you, for hanging in there with me.

 

 

 

 

 

 

person using typewriter
Photo by Min An on Pexels.com

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 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

Little Boy Lost

Rapid transit Chicago
The same, yet different

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

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

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

***

no time between crises

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

My heart sank into my gut.

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

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

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

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

first things first

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

“When did you miss Johnny?”

“About twenty minutes ago.”

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

“Should we call the police?”

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

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

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

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

a false sense of security

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

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

holding on to hope

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

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

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

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

saints and good samaritans

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

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

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

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

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

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

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

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

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

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

and the day goes on

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

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

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

He nodded and headed down the steps.

Saints
Photo by Fernando Santando