Christmas: Lost & Found

Our 2021 Christmas tree
Best Laid Plans . . .

A holiday-themed blog post was the last thing on my mind when I planned my post for this week.

In keeping with my blogging premise for this year, I had intended this week’s post to continue chronicling my journey toward writing a memoir. In fact, this would have been the triumphal post in which I announced that I had finished a complete draft of the memoir after five separate attempts.

Versions one through four next got past ten chapters, but now I had finally pushed through to the end of the narrative. Yes, I would admit, the really challenging work came next – “Killing my darlings,” the dread of every writer, but a particular horror for memoirists. Her “darlings” are real people and the way things “truly happened.” Unfortunately, that by itself does not justify putting them in a memoir. Time to edit. Now, however, I had an actual document to edit.

This time, last year

Before I could begin that worthwhile endeavor, however, our family Christmas fell apart. It feels so much worse than last year. For months before it arrived, we knew that Christmas, 2020, would be a “no show.”  As elders, isolated from the world at large and our family, in particular, my husband and I convinced ourselves that Christmas for just the two of us could be “romantic.” We lit the fireplace, dimmed the lights, and exchanged gifts (okay, I gave him a gift; Jay is not that good at gift-giving and usually relies on the kids to fill up my stocking.).

At mid-morning, we tuned in to the Portal and had an “online” Christmas exchange with our children and grandchildren. We felt grateful for the technology that brought their faces and voices to us – if not their presence. We then settled down to watch “Mary Poppins (the original one) on television, a movie we had first viewed on our honeymoon. As we turned out the lights that night, we congratulated ourselves on making the best we could of an unbelievably tough situation and went to bed convinced that Christmas, 2021 would be a much better and more traditional experience.

deja vu, all over again

It should have been, but it was not. Our daughter Betsy and her family arrived in Portland from Boston a week ago Monday to join her sister Carrie’s family as well as my husband and me for a week of Christmas celebrating. A small cloud hung over them as they arrived. Our grandson Bryce had only just found out he had been exposed to Covid-19 the night before.

Our daughters immediately canceled plans for a full family gathering until Bryce could be tested three days after exposure. We all were sure he would be negative, but the theme of “keep the elders safe” prevailed. Our certainty was ill-founded. Bryce did, indeed, contract Covid. He had to isolate himself from the entire family. Even worse, because they had all been with him until his test, our daughters, sons-in-law, and granddaughter now felt compelled to avoid contact with us.

the breaking point

To add a cherry to this unsavory sundae, they also begged us not to go to church. Being able, this Advent to celebrate the sacred season once again with the community of faith had been a boundless joy. Now, once again, we must remain at home even though our parish would be celebrating three Christmas Eve masses. Isolation is a terrible scourge for seniors in our society during the best of times. During this pandemic, it has wracked havoc with our mental and emotional well-being to the breaking point.

In August, Jay and I lost his brother to the pandemic and could not at that time have a memorial service. Now once again we were losing the rituals and traditions that sustained us. It was hard to find a reason for rejoicing. But God did not abandon us. When I sat down to write this post, Misericordia, the home that cared so well for our disabled children for years, sent us a message.

o come, o come, emmanuel!

Father Jack’s would have Christmas Eve Mass at the Home broadcast that evening. Jay and I could join an important part of our family, the folks at Misericordia, to celebrate the essence of Christmas, the birth of Jesus, the coming of light and hope into darkness, a light that shines as brightly tonight as it did over 2,000 years ago.

“Any one thinking of the Holy Child as born in December would mean by it exactly what we mean by it; that Christ is not merely a summer sun of the prosperous but a winter fire for the unfortunate.”

The New Jerusalem, Ch. 5https://www.churchpop.com/2014/12/03/g-k-chesterton-on-christmas/

jesus christ figurine
Photo by Jeswin Thomas on Pexels.com

The Notion of “Fixes” and “Cures”

Together
What is normal?

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

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

looking for a “fix”

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

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

a really brave new world

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

medical magic?

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

people are not math problems

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

parents love to dream

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

who are the grown-ups?

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

rethinking our culture

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

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

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

Kristy dressed up with watering can
Kristy at her most beguiling

Make Them Pop Off the Page

Johnny thinks a sculpture is a fort.
keeping a promise

Last week’s blog post, “Memoir as Smorgasbord,”  I promised to tell you the most enlightening moment of the memoir writing course I took this autumn from Ellen Blum-Barish.

two heads are better than one

Every class contributed immensely to expanding my understanding of memoir creation. All the discussions were lively, supportive, and inspirational. But the shining moment of the class for me was the one-on-one hour that Ellen spent with me. As a component of the course, Ellen scheduled a one-on-one hour with each student. She encouraged us to choose whatever aspect of writing we believed was giving us the most trouble, that we found the most discouraging.

I told Ellen I struggled with how much of my story of parenting two children with profound disabilities to share. The narrative covered so many years and so many different challenges as Kristy and Johnny’s needs and capabilities changed and shifted. The work felt encyclopedic. Where did I begin? Where did I end? What could I leave out and still be authentic?

caught in a maze

I knew my obstacles were not unique but did not see an effortless way through the maze. Ellen asked one question. That question turned out to be the key to the locked gates between me and a finished draft. “What,” she asked, “is your mission in writing this memoir? Are you hoping to inspire or help other parents of children with similar disabilities?”

“Absolutely not,” was my immediate response. “I can only tell what happened to us and how we muddled through. I can’t pretend to have the answers other parents might be seeking.”

seek your mission

“That’s totally valid,” she replied. “I completely understand, but there must be something driving you to tell this story. You need to be able to name that very clearly. That’s the only way you can discern the parts of the story that must be written.”

I knew why I wanted to write this memoir. But I had not thought of it as a “mission.” “Kristy and Johnny were such special kids,” I told her. “And I mean that in ways that go beyond their special needs. They were unique and wonderful, and they gifted the world with their presence. I do not want the people in our family to forget them. I’m writing this story so that their niece and nephew, cousins, and the many other folks in both our families and among our friends can remember them as the extraordinary human beings they were.”

there’s your focus

Ellen’s face crinkled in a big, bright smile. “Wow, that’s a mission for sure. It also definitely tells us where the focus of the memoir needs to be.”

“It does?” Her claim perplexed me. It did not sound like it limited the span of the story very much to me.

“Without a doubt,” Ellen stated, “You have to tell the stories that make them come alive. You need to make Kristy and Johnny pop off the pages of your memoir. Choose to tell the things about them that were unique and stood out. Let the reader really know them.”

still caught in overwhelm

“I see how this theme could be a good guide, but it still feels like a lot of material,” I objected.

“That where there’s a trick of the craft that comes in,” Ellen explained. “Limit yourself to a certain number of scenes – much like you were writing a play. Then choose the action that would bring those scenes alive.”

Ellen noted that this is how she was able to bring clarity to her own memoir, Seven Springs. https://ellenblumbarish.com/tag/seven-springs/

That work covers forty years of her life, yet she focuses on seven specific springs during those years to tell the whole story. I knew and loved Ellen’s book. Picturing how it laid out, I could envision tackling my own project in a comparable manner.”

mythic numbers

“Sometimes,” Ellen said, “certain numbers have a particular meaning for us spiritually and emotionally. Working within the confines of such a number can inspire and enlighten us.”

She advised me to sit with that notion and discover my number. Once I knew it, I could start working out what the “scenes” of my “play” might be.

This approach has galvanized me. I have plowed ahead – not creating scenes just yet but recording down all the best information I can about Kristy and Johnny. Once I have that in mind, I will let the contemplation begin. I’ll let the number emerge. When it happens, you will be among the first to hear about it.

“One of the most important things you can do on this earth is to let people know they are not alone.”
― Shannon L. Alder

Kristy with rag doll
The older Kristy got, the bigger her rag dolls became.

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

Dwell Deeply in the Only Life We Have

Old diary and photo with flowers

Memoirists enter into an agreement with readers: I will tell you an emotionally true story in a skillful way. I will make it worth your while. And while my memory is imperfect, I haven’t invented memories. I haven’t invented facts. If I compress timelines, combine characters, or conflate events, I will tell you. The other people in my book would tell the story differently; this is my own, true version.” — Tracy Seeley, author of My Ruby Slippers

Being honest isn’t easy

Truth is slippery. It sounds so easy. Just be honest. Tell it like it was. Memory, however, is a living, breathing power and like all living beings, it changes constantly. Every day, I experience thousands of moments. Each one of them crowds itself into its own little corner of my brain. None of them are forgotten, but all are transformed by the space they share with the memories that were there before they arrived. And as new memories burrow in, they modify those that came before them.

It leaves me wondering how I keep my implicit agreement with my readers as I write my memoir.

craft is a given

The “skillful” part I get. I stay with my craft, writing, editing, and rewriting. I submit excerpts to writers’ critique groups and to mentors. Time to rewrite once again taking to heart the insights these wise counselors have shared with me – over and over until my writing clearly communicates my voice and shares my vision. Skill alone, however, will not make my story worth your while.  Only if you sense right from the beginning that what I tell you is emotionally true will you stick around to hear the end.

and so is imperfection

It’s a given that as a reader, you understand that my memory is imperfect. You know I must compress timelines. You’re not expecting to read a day-to-day diary. You may, indeed, accept that I combine some characters. Over the course of Kristy and Johnny’s lifetimes, I consulted with so many doctors and educational specialists that it is inevitable that these people run together in my mind.  As to conflating events, there were so many emergency room trips in our lives, it is only natural that some of them blur together while others stand out in vivid detail. This is true also of the multiple bittersweet and funny moments I shared with my two extraordinarily special children.

but lying is unacceptable

At the same time, you fully expect that I won’t make up a memory just so it fits the narrative.  Also, my story happens in a particular time and place. Therefore, the backdrop against which our lives played out, Chicago, Illinois, during the last quarter of the twentieth century and the beginning of the twenty-first, must be portrayed with the greatest possible accuracy. For that I cannot just rely on memory. Research might not be the “fun” part of writing, but without it the memoir will lack luster and solidity.

digging deep is essential

There are no external references or resources, however, in which I can find my own emotional truth.  That vital nugget, that essential core, of a memoir exists in one place only, deep inside my very self. I’ve buried it so deep, I’m not certain that I can dig down far enough to reach it. There was a day almost fifty years ago when I sat on my kitchen floor and sobbed. I held in my lap, my four-year old daughter, unconscious and limp in my arms. She had just had had a wrenching grand mal seizure. I wept in frustration that none of the seizure-control medications were working. I wept in relief that I had caught her before she fell, and she hadn’t been injured this time. I wept in helplessness because I couldn’t make my little girl’s life better.

yet unbelievably difficult

Then Kristy’s breathing slowly became more regular. Her two-year old sister, Carrie, came up to me and patted my shoulder, “Be okay, Mommy,” she pleaded. At that very moment I heard their infant sister, Betsy wail from her crib.  I smiled at Carrie and wiped away my tears. I got up, lifting Kristy, and carrying her to a couch to sleep off the aftereffects of her convulsion and went to get my hungry baby.  Carrie trailed along behind me and stood beside us as I put her sister to the breast.  Her eyes were still wide with consternation.  I smoothed her dark curls back from her forehead. “It will be okay,” I promised. It was the last time I cried over a seizure and maybe the last time I accessed my own emotional truth.

can I do it?

Because I now want to tell Kristy’s story because I believe she deserves it and my grandchildren should know this part of their heritage, I must unbury almost fifty years of hidden emotions. Discerning which are the true ones and which are only the ones I wanted to feel will not be easy.  But if I don’t do this, you won’t read the memoir. It won’t be worth your while.

But how will I reach emotional truth as honest and raw as Anne Roiphe attains in her essay, “A Child Has Died,” published in Tablet, an online magazine about Jewish life?  Read it and see what I mean.

I can only try

Of course, my language cannot be Roiphe’s language.  I don’t have her voice. Still, I want you to feel my loss the way I feel hers. That’s the task I’ve set for myself. Almost everyone else in my story would tell it differently because they lived it differently. All I can promise is to do my best to tell my own true version.

Jule reads the Christmas story to Kristy, Betsy and Carrie
Note the net on the spiral staircase. We lived every day with the illusion that it kept our daughters safe.

 

 

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