Forever Family–Misericordia

Johnny surrounded by his books
missing chicago family

As much as Jay and I have enjoyed many facets of our life in Portland, Oregon, Chicago still tugs at our hearts. Of course, we miss that special city with its spectacular stretch of Lake Michigan beaches, vibrant culture, and stimulating diversity. Mostly, however, it’s people our hearts cry out for.

As a young couple bringing up four kids, we had an extended family, an engaged community of neighbors and an inspirational faith community, St. Clement’s Parish. We miss all of those people. But, perhaps, most of all, we miss be part of Misericordia, the amazing “second home” where the loving caretakers and administrators devoted themselves to the well-being our two children with special needs, Kristy and Johnny.

misericordia family

In the other families whose children also called Misericordia “home,” we found a community of compassion and understanding unlike any other. If we still lived in Chicago, we know we would continue to work with the folks at Misericordia as they continue to make life worth living for vulnerable children and adults.

Today I appeal to you to join me in that work. Here is a link that allows you to contribute to Misericordia’s Candy Days fundraiser.

First, however, I’ve invited Barb Quaintance, editor of the Mis Newsletter, to share with her story about other families who have lost their beautiful children who were once residents at Misericordia, but continue to find meaning in working with Mis.

misericordia alumni families     by Barb Quaintance

It’s a group no one wants to become a member of. But it’s a group that is a very important part of the Misericordia community–and is very meaningful to its members. The Misericordia Alumni Families (MAF) is a group of parents, guardians and siblings whose Misericordia loved one has passed away. (You’ll see them listed in the Misericordia directory with a heart next to their names.) Formed in 2014 by four families–the Tesmers (who lost Julie), the Scouffas’ (who lost Mary), the Hoynes (who lost Jeff) and the Gibbs (who lost Bryan)–the goals of the MAF are:

alumni family mission
  • To give Misericordia our support in helping our special home continue to provide excellent, quality care to those in need.
  • To help our members keep friendships formed over the years, as well as make new friends who are equally committed to Misericordia.

Sister Rosemary was the one who first suggested the term ‘alumni’ for the group, since she calls the residents who pass ‘graduates’ of Misericordia. The name resonated with the founders and the Misericordia Alumni Families was born.

condolences and invitation

When a family loses a resident, the MAF contacts them to offer their sympathies but also to inquire if and how the family would like to be involved with Misericordia in the future. Some do not want to stay involved, but many others choose to stay connected; e.g. continue to receive MisBiz and emails from Misericordia leadership or participate in Candy Days. Still others–families of about 70 residents who have passed–become more active members of the MAF.

masses, meals, and much more

The Misericordia Alumni Families support Misericordia in several ways. One, they are involved in planning the memorial mass, which remembers those Misericordia residents who have passed away.. Two, they staff funeral mass luncheons and work together in the Bakery during the holidays. And they have also supported the Benefit by organizing the photo booth. (The idea of creating memories through the photo booth seems particularly appropriate for the MAF since they keep memories of their loved ones alive.) And they get together several times a year to socialize and remember their loved ones.

Besides the volunteer activities done as a group, families also volunteer on their own. Many continue to volunteer in the bakery, for staff appreciation days, Sunday brunches, Family Fest, the Benefit and during the Christmas season. Not only does the volunteering help alumni families stay connected to Misericordia and the friends made over many years, but Misericordia values its connection to the alumni community.

our extended family

When I asked the Tesmers if it’s hard to be involved in Misericordia when Julie is no longer there, they said no. What would have been harder, they said, would be to have lost Julie and all the wonderful connections and friends they had at Misericordia. Asked the same question, Sherry Scouffas also said no and added: “Where else would you find so much love?”

The gratitude for Misericordia that the Tesmers and Scouffas’ feel is palpable and a big part of what the Misericordia Alumni Families is all about. The larger Misericordia community is so very lucky to count the MAF as part of our extended family.

jule’s afterword

As I mentioned earlier in this post, I’m raising money for MISERICORDIA FOUNDATION by participating in Misericordia Candy Days 2024. I would like to ask you to support the cause and make a donation to my personal fundraising page:
As you know, our children Kristy and Johnny spent many wonderful years as residents of Misericordia before being called back home to God and the angels. During those years, they not only lived a life truly worth living but had a great time doing it. And John and I and their sisters Betsy and Carrie could share in many fun times at Mis as well.

Misericordia is as much a family as a community and we are proud to continue our support of such a special place so that other vulnerable children and adults can receive the same loving, knowledgeable care that Kristy and Johnny were fortunate enough to receive.

Just click on the link below and it will lead you to my personal fundraising page:

https://secure.frontstream.com/misericordiacandydays2024/participant/JuleWard

Kristy with I Love You balloon
Kristy loves you!

 

 

 

 

Perplexity of Responding to Condolences

Kristy and Johnny's niches at Notre Dame
bottled-up feelings

Several days a week a story from Narratively, an online magazine with the mission to “publish untold human stories that surprise, delight and captivate readers,” appears in my email box. Most days, I skim through the offering and move on to other emails. Last week, however, one of their stories stopped me in my tracks. I couldn’t get past it because it spoke so directly to feelings I had bottled up for such a long time.

responding to sympathy

The story, Jill Deasy’s “The AfterDeath,” had originally been published in Creative Fiction’s 73rd issue. The piece had won the Creative Nonfiction Essay Contest in 2019 and earned a spot on the Best American Essays Notable list. 

Drawn to the story by the words, “Reeling from the loss of their 7-year-old,” I avidly read to the end because Jill so accurately articulated an aspect of grief, that I still struggle with today, seventeen years after Johnny died and nine years after we lost Kristy. Much of what she had to say about coping with the loss of her son resonated with me. What struck the most familiar chord, however, was the struggle to respond to the reaction of others when they learn of your unbelievable tragedy.

cardboard words

In the immediate aftermath of their death, the usual limpid replies to the standard condolences worked: “Thank you for your kindness.” “It means a lot that you are here.” “I know you’ll miss him, too.”

These are cardboard words, borrowed from Hallmark, because their death had left us without accurate words to express how we felt. The deepest part of us knew condolences were totally useless. Way more emotional than usual, the logical part of our brains struggled to make sense of things. We were simply too distracted to consider how to respond well to sympathy. But to point that out to those who offered it would not have made us any less distraught. Instead, it would surely have made the comforters feel worse when they already felt inadequate.

fragile facade

So, I put up a brave front, smiled a lot, gave a lot of hugs, and wrote a hundred thank-you notes. After Johnny died, life went on. Kristy still needed care. My teaching obligations remained in place. Behind that façade, however, I slowly disintegrated for three years until I totally fell apart. At which point I descended into a bleak, black year of fear, anxiety, and depression. That God and the angels here on earth pulled me out of that hole still feels like a miracle. Every day, I rejoice I am no longer afraid to live within my own skin, that most of the time I can believe I did the best I could for my children.

extended condolences

But I have not yet escaped the trap of needing to respond to condolences, and I am no better at it now than I was in the bitter months following the death of first my son, then my daughter. These condolences still come because we left behind our home of fifty years and moved across the country. Here in Portland, we have made many new friends. With new friends come fresh revelations. Inevitably comes the question, “How many children do you have?”

I’ve been tempted to lie and say, “Two grown daughters, one lives here in Portland, the other one lives in Boston.” But that would be a betrayal of all that Kristy and Johnny brought to our lives even though it would mean I wouldn’t have to face the awkwardness that always follows the words, “We had four children; two of them have passed away.” These are the moments when Jilly Deasy’s story most profoundly resonates with me. She writes,

rare & foreign experience

I wondered how she would react to our story. I never knew what to expect. Sometimes, people would break down and pull me into their arms. Others would stand silent and face the floor, speechless. And there were some who smiled too much. Each encounter reflected my new reality — that around here, my loss was rare, an experience foreign to others. There was no rehearsed etiquette, no guidelines for acknowledging such misfortune. My presence triggered floundering reactions, and I couldn’t help but feel self-conscious in the face of other people’s discomfort.

What Jill and I know is that although we cannot measure grief or compare ours to that of anyone else, many people hold losing a child to be a deeper loss than many others. For this reason, telling someone for the first time that two of your children have died leaves them tongue-tied. Whatever can they say? Most often, because they don’t know me that well and never knew my children, they mumbled, “I’m so sorry for your loss.”

what’s enough?

I can see they know it’s not enough, but I feel awful for putting a new acquaintance in a place of feeling inadequate. I murmur, “Thank you,” when I want to say, “Please, no, it’s okay. Let’s just not talk about it.” But many feel compelled to ask, “What happened?” Then, the conversation takes a turn down a dark road with me finally insisting, “They were wonderful children. We were lucky to have them as long as we did.”

It’s harder if they respond with a story of a similar loss in their own family. Now, I’m the one who doesn’t know what to say, and I believe I really should. I’ve been there after all. I ought to have the vocabulary to comfort them. But I don’t because grief is so individual, you can’t get inside another’s mourning.

reciprocal condolence

I take some comfort in realizing that no one escapes a time of grief. So, even though I might not articulate my gratitude at the moment, I know I can show my thanks by being there when others lose someone that they care for.

It is important for everyone to understand that sympathy is still valued, even if it may be inadequate. At the time Kristy died, I felt less alone in my grief and found better ways to cope. David Kessler, Author, of Finding Meaning: The Sixth Stage of Grief”, suggests a “Rule of 3: Support them three daysthree weeks, and three months after the funeral.”

ongoing witness

What Dr. Kessler means, I believe, is that support needs to be ongoing because grief is. The words and gestures that support us are different at distinct moments in our grieving. Right now, what helps me process my loss best is the hours my writing groups and my writing coach are giving me as I create a memoir to witness the lives of my children.

A last summer at Belden

“For no soul can ever be replaced, and death claims a beauty and a magnificence that will always be missed.”
― Jocelyn Soriano, In Your Hour Of Grief: When Mourning the Death of a Loved One

 a

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.

Writers Need to Be Heroes

wonder woman illustration
silhouette of mountain under night sky with stars
Photo by McClain Crigger on Pexels.com

An Author’s Dark Night of the Soul

If one imagines a hero’s journey for authors, then your dark night of the soul is probably when no one believes in your work except yourself.

Jane Friedman <jf@janefriedman.com

Coming to the end of a first full edit of the memoir I’ve been writing for two years, I spiraled down into a dark night of despair. Who but me believed in my projected book? Was I my only audience?

In her blog, Electric Speed, Jane notes writers can fall prey to the temptation to internalize the “NO” they receive from editors or publishers. (Jane Friedman, August 5, 2022)

I have found one can also internalize the critiques that one receives from fellow writers, those colleagues you ask to access your work.

a sign from the universe?

If we treat that “NO” like a “sign from the universe” that our work doesn’t make the grade, our life as a writer can end right there. A chance encounter or an unexpected opportunity could reverse your fortune, but that’s not the likely outcome. What we need is the more straightforward solution—turn up the volume of your dedication to your work.

Straight forward, yes. Easy, no.

For that reason, Friedman suggests authors think of this task in terms of a “Hero’s Journey.” What is a “Hero’s Journey?” It’s a literary device that breaks a character’s story arc into discernable steps with a probable outcome. The journey typically has twelve steps in three acts. (Thirteen Step Guide to the Hero’s Journey)

If my writing struggle follows this arc, what would that look like? Here’s how I imagine it.

Act I—The Departure

Step 1The Ordinary World in which the hero is living their everyday life oblivious that they are called to something bigger. For me, I was retired and finally had the time to write I had dreamed about for years. I crafted two novels, several short stories and started a blog.

Step 2–The Call to Adventure: An incident transforms the hero’s life with a sudden jolt. As a member of several writing workshops, I read and edited memoirs for colleagues. The more I worked with these manuscripts, the more I knew I had to put down my other writing. I had to memorialize the lives of my two extraordinary children.

Step 3–The Refusal of the Call is where the hero doubts her abilities to accomplish the task. There seemed to be so many reasons this story couldn’t be told. It covered too many years. It was too complex. The mystery that shrouded it would be difficult to unveil.

Step 4Meeting with the Mentor: There were multiple mentors in my life. Friends and writing colleagues, as well as family members, all urged me to write this book. My Wanderer’s Writing Workshop colleagues promised to read and give advice through every step of the process.

Step 5Crossing the Threshold: Ready to head the call. The hero sets out on the journey.  As best I could recall, I wrote a chronological record of what had transpired during Kristy and Johnny’s lives. Then I constructed an outline on which to base my writing.

Act II – Initiation

Step 6Tests; allies; enemies: This is a long beginning of the adventure when the protagonist finds all their abilities stretched, discovers some new allies, and encounters expected enemies. I started the memoir in many places and gave it different emphases. Nothing seemed to work. New colleagues agreed to read the work. I took two memoir-writing classes, which both taught me techniques and bolstered my confidence. My memory and my self-confidence were constant enemies, begging me to give up this arduous task.

Step 7Approach to the inmost cave: Here, the hero faces the genuine challenge. It’s the call to the ultimate battle. In December, 2021, I finished a complete draft, seventeen chapters! It felt like such an accomplishment. But it was only a “vomit draft,” that is everything I had in me about our story. With the new year, I faced turning those thousands of words into a well-paced, page-turner that someone would want to read.

Step 8The Ordeal: This is the moment of truth where the hero dies, even if metaphorically, and must be reborn. For the last eight months I’ve “killed my darlings” as the jargon goes in the publishing world. With each part of the memoir that I chop from the final draft, a part of me goes with it. My hope is the final product will be a true rebirth.

Step 9The Reward: The hero has achieved a major success. When I finally believe that I have edited my manuscript to where it can be offered for publication, I’ll have reached this step. But I’m not there yet.

Act III –Return

Step 10The Road Back: The Hero returns home with the reward. Once I have what I am convinced is a publishable work, my journey will be to decide whether to self-publish or offer the memoir to a traditional publisher. Either of these will be a long, painstaking trek, but I’ll be buoyed up by having finished the manuscript.

Step 11The Resurrection: The hero faces a major threat, often the threat of death itself. For me, this would be if they published my book, and no one buys it. I know absolutely that getting it out there will not be enough for me. I’ll need the affirmation that someone values it enough to pay for it.

Step 12The return with the Elixir: After this, the hero is no longer the same. The challenge has been successful. Death is beaten. If my narrative fulfills its intent, others will understand what rich and meaningful lives Kristin and Johnny led. The meaning of their lives and mine will endure even when I die.

 

 

brown pendant lamp hanging on tree near river
Photo by Rachel Xiao on Pexels.com

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