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!

Bringing Back the Blog

Heart-shaped loaf of bread
happy spring

With great glee, I announce the sling has come off and I’m typing again.

So, here’s the first issue of JuleWardWrites for the new year (if you are like me and your year begins when the first flowers pop their heads out of the grass.

where i left off

My last post shared a couple of poignant vignettes about our son John and his experiences at the wonderful residential facility for persons with physical and developmental disabilities, Misericordia Home.https://julewardwrites.com/committed-relationships/truly-a-heart-full-of-mercy

Those stories inspired other to write to me with permission to share their own stories of their equally wonderful “Mis” experiences.

Many of the people who love Misericordia are those who volunteer there. Today one of them, Terry Baugh, tells you his story.

hearts and flour

“Misericordia held a warm place in my heart even before I heard about the Hearts and Flour Bakery. My friends, Barb and Dave, had undertaken a long and nearly impossible search to find a nurturing place for their son, Seth, to live. When he was accepted at “Les Mis” as they fondly refer to it, the search ended, and Barb moved to Chicago to be close to Seth. Visiting Barb in Chicago and volunteering at the bakery was a great opportunity for me to catch up with my friend and spend a week working hard and feeling great about every day.”

hairnet? apron? gloves? go!

Volunteering for the bakery at Misericordia was a satisfying experience in giving back for Terry. The bakery is a hub of activity, with experienced bakers and novices, like him. He volunteered in 2019 just before the holidays. Christmas music played in the background and staff and volunteers and residents cheerily greeted each other as new people arrived for their shifts. Got a hairnet or hat? Apron? Gloves? You are ready to go.

just like downtown

The organization of the bakery was–and is — amazing. Every step for baking, cutting, and packaging is well thought out. It was fun to package soda bread, operating a packaging machine just like the bakery downtown. Over the days, Terry was there, he worked on a lot of different stations, but he loved the brownies the most. Bakers mixed large batches of brownies, baked sheets of brownies, and finally flipped them to prepare for cutting into heart shapes. There is a proper technique to getting all the hearts you can out of a sheet and then evenly powdering them with a gentle tap on the sifter. Packaging is always part of the production cycle — stacking the brownies in boxes and sending them on their way to treat a lucky recipient. They are such a delicious and simple treat!

sister rock-star

Beyond all the baking tasks, Terry loved being at Misericordia and seeing the operation. “Sister Rosemary has rock-star status in my book.,” he claims. “The caring staff, the amazing facilities, and the meaningful ways of raising money that Sister Rosemary created to support this amazing facility is something to admire.”

working the line

Besides the unique operations of the bakery, Terry met some lovely people while “working the line”. Weekly regular volunteers, school groups, families whose children were at “Les Mis”, or had passed on, were there helping and sharing wonderful stories. And he loved visiting Seth’s house, his classroom, and meeting his friends and the residents who helped the bakery.

make giving easy

Take a hint from Terry, “if you are looking for a way to give back, a way to spend an extra afternoon or day a week, or a way to open your heart — consider volunteering at the “Les Mis” Hearts and Flour Bakery. They also make gift giving easy. Shop here! 

For information about volunteering at Misericordia click here -> https://www.misericordia.com/volunteer/get-involved/

Heart shape in powdered cookie
Almost too good to eat

Truly, A Heart Full of Mercy

Johnny reads during the speeches.
bright memories

For thirty years, our family shared the care of our two of our children, Kristin and Johnny, with Misericordia Home, a residential and learning center for persons with multiple developmental disabilities. Many treasured memories of our family’s time at Misericordia live in my heart, but the ones I remember best are times when its generosity of spirit lit up like a giant Christmas tree.

a giving heart

In 1985, when we took our son John for his first visit to the school, we shared a dinner with a friendly group of fellows in one of the Village Homes. At the end of dinner, one resident pushed back his chair. “I’d like to stay and have desert with you,” he said, “but it’s my night to volunteer at the homeless shelter.” His words solidified my trust that Johnny would find love and empathy among his new housemates.

heart big enough for the entire world

Some years later, the students at the Learning Center engaged in a geography program which focused deeply on one nation each year. Through their studies, they became aware of hunger in the world. This realization heightened the gratitude they felt for the abundance of care they received at Misericordia and motivated them to help those less favored. With their teachers’ help, they organized an on-campus “Walk for Hunger.” Family and friends pledged funds to support the walk.

please, stay off the grass

Johnny’s dad remembers that bright October day as though it happened last week. The residents, staff, and some parents gathered outside the Learning Center. Sister Rosemary gave a rousing opening talk–and then asked the participants to stay off the grass because landscapers had recently seeded the lawns.

the last shall be first

Johnny’s pace was a slow slouch in the best of times. So, his dad had stationed them at what he believed to be the end of the line. But no, at the end of her speech, Sister pointed out the direction of the walk. It put Jay and Johnny at the front! For a while Johnny set the pace, but then Sister broke ranks and walked on the grass to get around him! Soon, everyone followed suit. By the time father and son arrived back at the school’s gym, the organizers were putting away the refreshments. That didn’t matter, the spirit of joy and generosity of the day still lives in my husband’s stories, which he is willing to share with anyone who will listen.

Neither of us ever tires of telling the world how blessed we are to be a part of the Misericordia family.

 

Johnny has a party in the Mis greenhouse restaurant.
Jay and Johnny in Mis Greenhouse Restaurant.

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

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

 

If I Had Known

Question mark by doorway
Be careful what you promise

In last week’s blog post, I promised that this week I would “bring you up to date on how far I’ve gotten so far with the memoir, examples of advice I’ve received, and the quandaries I face as I move forward.” The sentence makes me chuckle because, of course, I couldn’t possibly do all that in one short blog post.  Instead, I can share what I consider to be one of the important pieces of advice I found about writing a memoir: “Begin by asking yourself a lot of questions.”

don’t do this

This is not what I did. Rather, I just plunged in and started telling a story about a young couple who longed for a child but struggled with fertility issues.  Then page after page I recounted the days and years of their life as a family. No wonder my writing colleagues felt lost as they tried to find a theme and to keep up with dozens of characters. The manuscript was a roller-coaster ride up the peaks and down the valleys of our life.  Readers had to hang on for dear life because it never paused. I didn’t take time to reflect on the challenges or the joys for very long at all. And I kept how I might be feeling about what was happening completely to myself.  Did I even know then or now how I felt? I didn’t stop to find out.

After eighteen months of writing and submitting sections of the “memoir” to writing workshops for review and always hearing the same critique, I finally realized there was something fundamentally wrong. Kristy’s story remained as compelling as ever, but I had not yet imbued it with its true power.

now and then

I put aside writing narrative and took up asking myself questions. Many different guides to writing memoirs offered a myriad of possible questions I could ask myself.  I read several of these. The one that struck me right between the eyes was, “What do I know now that I didn’t know then?”

What I now know is the Kristy never had a chance.  The neurological disorder that eventually destroyed her resided deep inside her infant’s brain from the day she was born. As best I can understand and explain it, the force behind this disorder was a genetic anomaly. It was not carried on a gene she inherited from her father or from me. Rather shortly after conception genetic mutation, a so-called “de nova variant” caused her developmental trajectory to be unevenly and unpredictably stunted.

blissful(?) ignorance

I did not know any of this until Kristin was thirty-eight years old and most of the damage to her body and mind had already happened. During those thirty-eight years, my husband and I sought the best medical care we could for Kristy. We never let go of our hope that someday a medication would come along that could control her irretractable seizures. We firmly believed that if Kristy could stop seizing, she could regain some of her lost abilities and even start learning new ones.  That dream dimmed greatly as the years went by but never disappeared entirely – until 2007.

not a real answer

That year, genetic testing became available for her. The tests revealed the root cause of Kristy’s seizures and disabilities and why her brain had slowly atrophied. (Brain atrophy is a wasting away of brain cells, or more accurately, the loss of brain neurons and the connections between them that are essential for functioning properly.) EEG exams performed when she was young showed no damage, but the older she became the more these pockets of atrophy appeared.   By the time the doctors could give us this genetic analysis, Kristy was as helpless as an infant, dependent on others for all her needs. The diagnosis was, therefore, not a shock, but finally an answer.

willful naivete

Now when I ask again, “What do I know now that I didn’t know then?”, the question deepens into, “Would I have wanted to know then, what I know now?”  My only honest answer is “No.” Although it was hard to have our hopes dashed year after year, I wouldn’t want to give up the joy our beautiful, happy little girl brought us through the first twenty-five years of her life. If we had known how ultimately devastating the disorder would be, fears and forebodings would have tainted all those good times.  And we would have been helpless to stop the inevitable.  It was by far better to live each day, each year, as it came to us without any knowledge of its heartbreaking end.

through a mirror darkly

As I write the memoir, I will have to hold up a double mirror to my own inner thoughts, reflections, and feelings.  My readers need to fully understand all the optimism I held onto as a young mother, all the joy I got from being Kristy’s mom. Yet, the story must also carry my awareness of its tragic end.

“Life can only be understood backwards; but it must be lived forwards.”
― Søren Kierkegaard

Doorway opening out
Photo by Jan Tinneberg