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Bittersweet

This morning, our youngest child Joshua attended his first day of kindergarten.  After breakfast and lunch-making and a shoe argument and coffee for everyone but me, we walked up our sun-dappled street to the elementary school together, me and my wife and our son and the empty hole beside him, where his sister would have been.

Today was his big day, and Kat and I worked hard to keep it that way.  We took his picture on the front porch, as we did for each kid on their first day, and strolled along the sidewalk.  We smiled as he shifted his brand-new backpack on his shoulders, getting used to its weight and feel with its folders and crayon box.  We ruffled our hands in his first-day-of-school haircut—a Mohawk, at his request—as he assured us that he and his friend M.L. would know everything they needed to do in school, since they’d already learned it all in preschool.  We stood with him outside the school’s front door, chatting with parents and teachers as we waited for the start of the day.  We headed into the building in a line, eventually splitting off into the kids’ room and the parents’ orientation room.

We didn’t talk about our missing third-grader, even to ourselves.  We refrained from sharing the looks, the touches, the abbreviated sentence fragments that are painfully clear to us and nobody else.  Our kids may not understand exactly what we’re saying in those moments, but they know exactly what we’re talking about, just from the way our jaws stiffen and the dull sharded light in our eyes.

We didn’t talk about our hopes of past years, how we’d looked forward to our kids walking to school together, hand in hand.  We didn’t talk about the two years we’d been away from the school, years we had expected to be there as each kid moved through the grades.  We didn’t talk about the absent eyes that would have shone with pride and protection.

We didn’t talk about how we had only made one decaf coffee for the kids that morning, instead of two.  Joshua, like Rebecca before him, loves coffee.  As long as it’s loaded with milk and sugar, that is.

Bittersweet.

As we got ready to leave the school and Joshua to his day, we gave him hugs.  He showed us the work folder he’d been given, a plain Manila folder on which the kids had been asked to draw a picture of their families.  He’d drawn us all: Kat, and me, and Carolyn, and himself.  And between him and Carolyn, a line.

A marker drawn in marker, holding open a place in his family that can never be filled.

We told him it was a great drawing, and to have a great day, and held our tears until we were well out of his sight.

It’s not fair to anyone, least of all him, that these milestones are so irrevocably tinged.  We try, and often succeed, to keep them focused on the present, to take them for what they are rather than what we wanted them to be.  And we’re getting better at it as time passes.  Better is not perfect, and I doubt it ever will be.

But if you’re reading this years from now, Joshua, please know: we were so happy to see you start kindergarten.  We truly felt joy seeing you meet your classmates and teachers, and give everyone that sly half-smile you’ve perfected.  And we felt pride at seeing that you haven’t forgotten the sister who died when you were so very young, and whose memory you keep alive in your own ways.

We may have missed Rebecca, but we didn’t miss seeing you take those first steps into your new school, and we’re beyond grateful that we could be there to see them.

Between the Rain and the Sun

Late in the afternoon, we all drove over to Mayfield Cemetery to visit Rebecca’s gravestone, two years after her death.

“She’s not here,” Kat said quietly as the kids headed back to the car, for once not making a race of it.

“I know,” I said.

“She’s in her preschool.  She’s at New Jersey.  She’s everywhere we are.  This… is the last place she is,” Kat said.

Misunderstanding her meaning, I shook my head.  “No.  The last place she was, was in our home.  In her home.”  My voice cracked on the last words.

Kat didn’t correct me.  We stood silent, holding each other, feeling the stiff rivers of pain running through each of our bodies.

The cemetery groundskeeper rolled slowly by in his SUV, giving us the “we’re closed” look.  Kat nodded at him.  The SUV rolled on.

I took some pictures of the mementos friends had left earlier in the day.  Flowers.  A rainbow-colored spinner.  A small plastic Rainbow Dash toy.  We nestled the figurine into the earth next to the stone, in hopes that it would stay safe through a summer of mowing.  I whispered a few words to my absent daughter, barely voicing apology and love and regret past the tight bands of sorrow in my throat.

We decided not to go to any of the kids’ favorite restaurants for dinner, not even Rebecca’s.  We drove instead to Chagrin Falls, to eat at Jekyll’s Kitchen, our first visit since its reopening.  After dinner, we got ice cream at Jeni’s and walked down the stairs to the falls.  We showed the kids where I had formally proposed to Kat, one icy March afternoon almost two decades before.  Carolyn was incredulous to hear that we’d jumped a closed gate to do it.  Joshua climbed over rocks and logs down on the river’s bank, falling once and then warning me about the moss on the rocks.  “The moss is very slippery,” he informed me solemnly.  “You have to be careful.”

On our way home, the clouds were underlit by sunlight which I guessed was reflecting off Lake Erie.  As we turned alongside the interstate, I spotted columns of rain off to the north, dark beneath the darker clouds.

I had a sudden hunch.  I turned off the direct path home, working north and west in a stairstep fashion.

“Why are we going this way?” Carolyn asked.

“I think your dad is stormchasing,” Kat said.

“Rainbow-chasing,” I replied.  “I just have to get us between the rain and the sun.”

Soon enough, a light sprinkle fell across the windshield.  Just as I turned west onto Cedar Road, the sprinkle intensified to a light rain.  Ahead of us, the setting sun turned utility lines into threads of golden fire.

“If there’s a rainbow, it will be behind us,” I said.  “Kids?  Is it there?”

A rustling of movement, and then: “Oh my God!” Carolyn exclaimed.

I pulled into the parking lot of the Burger King across from University Square, and there it was: strong and bright at the horizon, fainter at the zenith, paralleled by a still fainter cousin.  Well, would you look at that—double arches over Burger King, I thought, wryly.

The rainbows flared and faded as rain and clouds and sun shifted places, the slow dance of color and light.  I watched it all unfold, feeling anew the ache of regret that I hadn’t been able, hadn’t thought to try, to give her one more rainbowShe would have loved this so much, I thought sadly.  Just as her sister and brother are loving it, right now.

“This is a sign,” Carolyn said.  “It has to be.”  I smiled softly.

Two years.  Two rainbows.

We love you, Little Spark.  We miss you.

The Guilt I Carry

Last year, in an effort to help him and many friends of mine struggling with the tragic death of Chloe Weil, I told Jeremy Keith I had let go of guilt over Rebecca’s death, and that was the truth.  I mourned, I had regrets, but there was no guilt, because there was nothing we could have done except what we did.  Her cancer and death was always going to happen, and the only thing—the only thing—we could have done to avoid it was to have never adopted Rebecca in the first place, thus causing some other family to experience all the joy and sorrow of her brief life.  I accepted that, and it brought some small measure of peace.

All that was true.  Almost all of it is still true…except for guilt.  That came back, seeping into me so slowly that it took me a long time to realize it.  When I finally recognized it for what it was, I realized it had been there for months.  I also realized it was a particular form of guilt: survivor’s guilt.  This came as a surprise, honestly.  As it’s usually defined, at least as I understand it, survivor’s guilt seems to be recognized in the parents of children who take their own lives, but not to those whose children die from disease or accident.

Last week, I published my first piece with Modern Loss to talk about this.  A brief excerpt:

If Joshua had asked why I was saying sorry, I would have told him I wasn’t apologizing because I felt guilty, but rather because I was sorry in the sense of sorrowful. Sorry he had to experience the death of his older sister, who died on her sixth birthday of aggressive brain cancer. Who had been gone just about 51 weeks on the day we had that conversation. Sorry she had been terminally ill, sorry the world is as harsh and unfair as it is, sorry his best friend in the world is dead.

But not sorry out of responsibility or guilt. At least, that’s what I would have said, but I’d have been violating one of my basic tenets of parenting. Because I would have been lying to him.

You can read the whole thing at Modern Loss.  It’s a standard-length article, about 800 words.

I wrote it, in part, to understand myself.  But I published it in the hopes that it will help someone, some day, understand a bereaved friend or relative a little bit better…or possibly even themselves.

The Guilt I Carry

“Why are you crying?” I asked my son. He wasn’t actually crying so much as sniffling, but the expression on his face was enough to justify the question. He just shook his head, so I sat down on the steps, pulled him into my lap, and snuggled him close. You can still do that when they’re four years old.

“You’ve seemed sad this morning, buddy,” I said gently. “Can you tell me what’s wrong?”

“I miss Rebecca. She was the best big sister ever.”

I hugged him close, as if he were a life preserver, and at that moment he might well have been.  “She was, Joshua.  I miss her too, so, so—” I couldn’t speak for a moment.  The tears were running ceaselessly down my face, spattering both our shirts. He looked into my eyes and his own tears stopped as he searched my face with a kind of tender curiosity.

“Oh, I’m sorry, Joshua.  I’m so, so sorry. It wasn’t anyone’s fault.  There was nothing we could do. We did everything we could. We loved her, and made her life as wonderful as possible. That’s what we did.  Right?”

He nodded, still looking at me intently.

“Oh, buddy, I’m sorry. I’m sorry. I’m so sorry.”

If Joshua had asked why I was saying sorry, I would have told him I wasn’t apologizing because I felt guilty, but rather because I was sorry in the sense of sorrowful. Sorry he had to experience the death of his older sister, who died on her sixth birthday of aggressive brain cancer. Who had been gone just about 51 weeks on the day we had that conversation. Sorry she had been terminally ill, sorry the world is as harsh and unfair as it is, sorry his best friend in the world is dead.

But not sorry out of responsibility or guilt. At least, that’s what I would have said, but I’d have been violating one of my basic tenets of parenting. Because I would have been lying to him.

As the parent of a dead child, I experience survivor’s guilt. I know the term is generally defined to apply to people like those who survived the 9/11 attacks, tortured by the knowledge that they lived while others died. Those who make it out of plane crashes, or war zones. The friends and family of suicide victims, including the parents of children who take their own lives.

2010-01-xx

Father and daughter

I can assure you it also affects the parents of children who died of what we bitterly label natural causes. My daughter Rebecca had glioblastoma multiforme, something her genetics preordained and no medicine could hope to cure. Her last MRI, taken five days before she died, showed so many emerging tumors that the doctors didn’t bother to count them. There was, as I said to Joshua, nothing anyone could do to save her.

It doesn’t matter. I still ask myself what I should have done differently, as if there were some winning strategy I was too stupid or blind or arrogant to see. I tell myself that we all did everything possible, but I feel a profound sense of failure. This is the guilt surviving parents bear. Why did she die, and we live? How can we live with ourselves, knowing we failed to save her? For that matter, having failed at our most basic duty, what right do we have to call ourselves parents at all?

Parents are supposed to protect their children, even at the cost of their own lives. I remember the nights I lay in bed next to her sleeping form, my forehead lightly pressed against hers, silently begging any god or demon who might hear me to draw the cancer out of her head and into mine, to name its price if my life was not enough, the pressure of my desperation pounding in my temples.

Did I not pray hard enough, or fervently enough, or offer enough of a sacrifice? Did I not pay attention at the right moment, and overlook the treatment that would have saved her?

You may shake your head, assuring me I did all I could and then some, gently insisting I should be proud of what my wife, Kat, and I did, and how we made her short life the best it could be. Many, many people have done all that and more. I’ve listened to them, and told them I hear them and agree with them. There’s even some truth to my words. But only some.

Kat has it even worse. With her advanced medical degrees, she feels like she should have found a cure. She knows intellectually how ludicrous that sounds, the idea that in ten months she should have found a cure for an incurable disease, but in her heart she carries the guilt. I can tell her she did everything she could and then some, that she should be proud of what she did and how hard she searched for treatment and how she made Rebecca’s short life the best it could be. I do tell her that, and I believe every word.

But she does not.

It was one year to the day after Rebecca’s death, the day that would have been her seventh birthday.The prayers were finished, the memories shared, and Kat and I sat in front of the newly-unveiled grave marker looking at all the stones people had set atop it in remembrance.

I had reached out to move one of the stones off the word “loved” when my fingers brushed the sparkling silver-blue granite of marker itself. Suddenly I was sobbing, blind to everything around me except Kat’s hand on my back as I hunched over, my hand pressed against the gravestone of my daughter.

“I’m sorry, Little Spark,” I sobbed to her gravestone. “I’m so sorry.”

“Why are you sorry?” said Kat gently. “You have nothing to apologize for.  You did everything you—”

I shook my head, tears sluicing off the inside of my glasses. I whispered it again and again: “I’m sorry.”

Of course Kat’s right, that I have nothing to apologize for. I know that. There was nothing any of us could do except what we did: Fight for her, and make sure her short life was full of wonder and love. I am proud of what we did, but I still carry the guilt of what I could not do: Save my child’s life. I still carry the guilt of what I do now: Continue to survive when my child did not.

I would give almost anything to be able to tell Rebecca how sorry I am, over and over, to beg her forgiveness for my failure to do the impossible. For letting her down, for violating her trust in me to fix everything, the way parents are supposed to.

Just as I begged Joshua his forgiveness, as he huddled in my lap.

This article was originally published as After My Daughter’s Death, On Guilt and Apologies at Modern Loss on 18 June 2015.  It has been edited for clarity.

Into Each Life

It was the end-of-the-school-year picnic at the local elementary school, and we were invited.  Not because we have any students there right now, but because it was Rebecca’s school, and the PTA was set to dedicate a Little Free Library in honor of her and Trishka Tantanella-Holcomb, another student who died in 2014, a few months before Rebecca.

There were some words spoken, readings read, and then the Library unveiled.  I shook the hand of Trishka’s mother, expressing my condolences, and then I found myself locked in an embrace with Trishka’s father, taller than me, his breath hitching.

“I know,” I said.  “I know.”

He sobbed in my ear, quietly, despondently.  We stood back a step.

“Every day,” I said, looking into his eyes, my throat tight.

He shakily held up a finger.  “Not… not one day,” he ground out.

We turned to look at the new Library, adorned with the names of our little girls, hands on each other’s shoulders.  Kids and adults alike were putting in books they had brought to contribute, one after another.  Someone decided they’d had enough of the raucous pile of books, and started standing them on their ends, sorted by size.  I could imagine Rebecca saying, “Aw, boo!” in the casual, lighthearted way she liked to say it.  Expressing her disapproval, but without any heat to it.

A storm was moving in, so the crowd scattered back to their homes as a few of us quickly broke down the tables and sound equipment to move them inside.  The storm arrived just as we finished, filling the now-empty playground with curtains of rain, racing with the wind.  A minor lake immediately began to form as the playground’s storm drain was overwhelmed by the outpouring.  I thought about the video Kat had taken of Rebecca and her best friend Ruthie playing in another such lake, a little more than a year before, splashing and laughing as they poured water out of their rain boots.

As quickly as it had broken, the storm was over, the rain trailing off to a minor sprinkle.  I looked at the clouds to the west, realized what was about to happen, and fished my iPhone out of my pocket as I turned around.

“Get the kids outside,” I told Kat, who’d gone home with them ahead of the storm.  “There’s going to be a rainbow.”

I waited.  But not for long.  It slowly coalesced over the school, the first full-spectrum, full-arc rainbow I’d seen since a few months before Rebecca’s death.

She loved rainbows.

I wish so many things, all of them pointlessly, but one of the most piercing is that I wish I’d thought to make a rainbow for her while there was still time.  All it would have taken was a late afternoon and a garden hose, sprayed from the porch roof; all it would have taken was for me to break free of myself just long enough to think of it.  Just one more rainbow, just for her, just to see her eyes widen and her mouth arc upward in delight.

Apophenia

My next big project is to form a rock band called The Why and release a double-length concept album titled “Apophenia”.

—Twitter post, 15 October 2014

Kat and Carolyn were in New York City this past weekend for a brief trip, and when they got back Kat was in a bad way.  I picked them up from the airport and Kat’s symptoms were such that I drove her straight to the Cleveland Clinic ER on suspicion of a cardiac event.  (It wasn’t.)  With the help of friends, I got the kids off to their scheduled activities and stayed with Kat.  By late in the afternoon, we knew she’d be staying overnight, and we decided that I should go to be with the kids.

I gathered up the backpacks and dirty clothes from their weekend trip, slung them over my shoulder, and then stood at Kat’s bedside, holding her hand.  Not speaking, just standing.  Eventually she gave me a small smile and said, “Go on.”

I twitched toward the door, and failed to actually move.  Kept standing.  Kept holding.

“I’ll be all right, Eric.  It’s fine.  Go.”

“I know it’s stupid, but I’m afraid to.  The two times I walked away from Rebecca in a hospital, it didn’t end well.”


We spent our last few hours of innocent ignorance in an emergency room in New Jersey, getting Rebecca rehydrated and hoping to figure out what was going on.  She was so lethargic and tired, and we feared spinal meningitis.  As the day wore on, she seemed stable, neither better nor worse, but one of us had to go get the other kids.  We decided to have Kat stay, since she was the medical professional.  I gave Rebecca a hug and kiss, told her I loved her so much and to feel better soon, and walked out the door.  Not long after that, she had her first seizure.

Just a few months later, after the surgeries and protons and initial chemotherapy and our return back home to Cleveland, Rebecca finally came down with a fever.  It was of course at a time that we could only take her to the ER for evaluation, to make sure she wasn’t neutropenic.  It was evening, and we were hungry, so I went over to the food court while the last few tests were run before they discharged us.  While I was gone, the staff gave Rebecca a routine dose of ceftriaxone, and she immediately had a strong anaphylactic reaction.  We had never known she was allergic to it.  Antihistamines were quickly administered, and she had to spend the night at the hospital in case the reaction flared up again.  It didn’t.


Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong.

And of course there’s nothing to that but coincidence, but we evolved to spot patterns.  It was a survival skill of the savannah, to see how disparate and apparently unconnected events tied together into a cohesive story.

Now we drag it around with us like a growth that we’ve long since ceased to notice.  We see stories written in the stars and meaning imposed on our mundanity.  The most common question we ask is “Why?”, and that can lead us to wonderful discoveries and insight, but it seems just as often to mislead us into an egotistic reordering of the world.  Our obsessive quest for causes can all too easily cause us to invest in illusions.  That pattern-recognizer that coils through the hindbrain can and does turn on us.

Think of all the conspiracy theories you’ve ever heard or believed.  Think of all the times you’ve heard of something terrible happening to someone and asked yourself why it happened.  Think of all the people who get blamed for what has happened to or even near them, regardless of whether we know all they did or didn’t do.

Think of all the Greek or Roman or any other culture’s myths, the stories where some person draws the notice of the gods, who then proceed to punish them for hubris or mischievously grant their prayer according to its letter but opposite its spirit.  That impulse is no less strong in us.  So many people ask themselves what they could have done differently to avoid their current situation, or what they’ve done to deserve what’s happened to them.

And even our language enforces this view, subtly and persistently.  In the last paragraph, I could have written “So many people ask themselves what they could have done differently to avoid their fate”, but “fate” is a concept born of stories.  It carries with it meanings of destiny, of supernatural forces directing a specific outcome.  I even started to type the word, and then replaced it with “current situation”, which is a far more accurate rendition of what I want to say, but not nearly so poetic.

Not nearly so story-like.

We optimize our language’s patterns to favor the concepts that feel the best to us.  All languages do.  And in doing so, we not only reflect the patterns we see, but reinforce them.  Powerfully.  We reorder the way we see the world, we create patterns of filtering, and when we talk to each other we transmit those patterns to each other, self-reinforcing.

I could say the patterns are living, memetic symbiotes, and thus fall victim to the overactive pattern-recognizer in my own hindbrain.

So we ask ourselves what we could have done to save Rebecca.  I can and do believe as strongly as I believe anything that there was never any hope for Rebecca.  Her genetic makeup, some accident of her conception or fetal development or whatever, meant that she was always going to die of cancer as a child.  We could have tried anything from megadoses of chemotherapy to experimental surgery to the latest woo-woo herbal treatments, and she still would have died.  All we could affect was how long that took, and what her short life would be like as it came to an end.  And we had no way to know which choices struck the best balance of lifespan and life quality.

I like to think that we did well, but for all I know some other set of choices would have given her another six or twelve months with the same quality of life she had.  I don’t know, and I don’t torture myself over that; we did the best we possibly could.  Perhaps that’s me imposing an absent pattern on disparate points of data again, but she did have great quality of life, up until the last week or so, and we fought ourselves to safeguard that for her.  It will have to be enough.

And yet, I still ask myself sometimes if we somehow could have saved her.  If there was a moment when the doctors said X, that we were supposed to do Y instead.  And there’s that pattern-recognizer, affecting our language again: “we were supposed to”.  As if her life was meant to be a long and perfect story, and we were too blind and stupid to see it and fulfill it.  As if we failed to understand what we were supposed to do.

That same impulse is only a short step away from taking responsibility for the cancer itself.  Wondering if we could have avoided the cancer entirely if we’d fed her a different diet, or lived in a different city with different air, or taken a different approach in infant medications, or to vaccination.  Or if we’d been less satisfied with our lives.  Maybe she’d be all right if we hadn’t had the impulse to thank whatever gods or demons might lurk beyond the horizon for our lives that seemed so right, and say no more than that; maybe she suffered for our being humbly grateful for what we had and not thinking that we needed to beg for that state to continue.  Punished for the hubris of believing that our lives were good and in no need of improvement.

“What did I do to deserve this?” it’s so easy to ask.  “What did she do to deserve this?  Why her?  Why us?”

“Why”.  “Deserve”.

Patterns of instinct, encoded in language, enforced in thought, imposed on the world.

Capricious deities, lurking in the clouds.  Heroes and monsters, written in the stars.


Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong in my absence.

So I stood there holding Kat’s hand, wanting to stay with her even if it meant sleeping in a hospital chair all night, because deep in my hindbrain, the pattern-recognizer was screaming that something would go wrong, just like those other times.  That she would die if I left.

I squeezed her hand and gave her a kiss, told her I loved her and to feel better, and walked out the door.

She’s fine.

Presence and the Gift

There are two aspects of my parenting that have really helped me cope with the illness and death of my daughter.  One was there long before she became ill, was in place before we had any kids; and the other I learned in the months since the first tumor emerged.

What I’ve had all along is a strong determination to appreciate each stage of our kids’ lives for themselves.  I’ve heard or read any number of parents saying they wish the next stage of development would hurry up, or that a past stage had lasted longer.  You know: “Oh, I can’t wait for Johnny to start talking, all this grunting and wailing is so difficult!”  Then, months later: “I really miss the quiet days, before Johnny talked non-stop all day every day!”

Sure, the current stage is difficult.  They’re all difficult.  They’re also amazing, unique to each child, and they’ll never happen again.

So I went into parenthood determined not to push them forward, and equally not to hold them back.  Of course we teach and encourage them.  We taught them sign language so they could talk before they spoke.  But we also didn’t push it, drilling them and punishing every mistake and rewarding every success.  It was the same with speech: we spoke and signed with them, and they picked up each at their pace.  The same with solid foods, and potty training, and learning to read and write.

Of course this isn’t a 100% deal.  I don’t always manage to maintain a Zen tranquility about every last thing.  I’m really ready for diapers to be done, for example; it’s been a decade now, and I’m pretty much over it.  But we’re not pushing it, and I don’t make a big deal out of it—or even a small deal.  This phase will be done when it’s done.

That focus on appreciating the kids for who they are every day has long made it easier for me to navigate the regular shoals of parenting.  And believe it or not, it’s made dealing with illness and death easier.  I didn’t fidget impatiently for the end of the treatments, or try to block out what was happening.  I didn’t spend my time looking over the horizon, dreaming of future days and missing what was happening in front of me.  I was focused on what was happening, good and bad.  Every day, as much as I could stand.

Given how little time we had, I am incredibly glad that I was present for it.  That I cherished everything good in it, and accepted everything bad.  I shudder to think how I’d be doing now if I hadn’t.

That was the first thing that helped.  The second thing, the one I learned in the past year, is to treat all my kids as if they might die in the next year.  That probably sounds like a prescription for massive spoilage and neuroses galore, but hear me out.

Try to imagine this: you learn that your child has a small but noticeable chance of dying a year from now.  Say, 5%, or something like that.  There’s nothing you can do to change that, it’s just how it is: a small chance they have a year left, and a much much larger chance they don’t.  How would that change how you treat them and interact with them?

For me, it created a new blend of short-term and long-term parenting.  I’ve always been a long-term parent, thinking ahead years or decades.  That sometimes led me to be stern or unyielding, and to not always express an appropriate amount of patience and care when it came time to discipline.

But when I realized Rebecca would likely be dead within a year, I realized I had to change how I acted toward her.  I had to soften how I disciplined.  By soften, I don’t mean letting her do whatever she wanted, or reducing the scope of discipline.  It meant working extra hard to meet outbursts of five-year-old rage with calm and measured words.  It meant being clear about the causes and reasons for punishment while working extra hard to be matter-of-fact and neutral about it.

These were things I’d always tried to do, but in the chaos and tumult of day-to-day life, I hadn’t always pushed myself.  Now, with a limited time frame, I had to make every day count.

And, once I realized that, I realized I had to do it for all three kids.  Because who knows what will happen?  We all have a limited time frame, easy though that can be to forget.  Carolyn might have died in an accident before Rebecca’s tumor came back.  How would I feel if that happened, and the last thing I had said to her was angry in words and tone?

I had been falling short with all of them.  Rebecca falling ill made me realize that, and showed me how to step up.  And so I have.

As I said, that doesn’t mean their discipline has lessened.  Because, to go back to the 5% chance of death in a year scenario, that’s a 95% chance that they’ll grow up to be adults.  So you can’t let them run wild; if you do that and they grow up, you’ll just as surely have failed them, not to mention everyone who comes into contact with them.  The boundaries are still the same.  I just try my best to communicate them in a different way.

Even with the odds of death much higher than 5%, that’s how we treated Rebecca.  Partly it was because she might survive, and partly it was because she wasn’t an only child.  We had to treat her consistently with our other children for their sake, as well as for hers.  Even more for her siblings, perhaps, given the outcome.

But when I did put her in time out, or took away a privilege, I always did my utmost to do so quietly and with care, not in anger.  Not with a smile, which would have mocked her frustration; nor with raised voice, which would have escalated it.  Just calmly, implacably, maybe a little sadly.  I did my best every time, and not just with her.  With all three kids.  I continue to do it with our surviving children.

I don’t always succeed, but I always try.  And when I find myself losing control, a quick internal reminder of the stakes is usually sufficient to regain my course.  Usually.  I’m not perfect.  But I’ll keep trying.  That’s all anyone can do, is keep trying.

The Silent Hole in the World

There is a sound a family makes that only its members can truly appreciate.  The interplay of voices, footfalls, laughter, sobbing, shrieks of joy and frustration and anger, songs sung, catchphrases, the rattle and chirp of beloved toys played with, doors slamming, the rustling of clothing and whispers of breathing, running water and bath splashes and teeth brushed.  The aural fabric of lives entwined.  It forms a curtain around you, altering your perceptions of the world.  It becomes the world.

You feel it, usually half-consciously, but if you stop and listen with purpose, you can actively hear it and savor it and know that the world is right, secure and content inside the cocoon it weaves.  It’s not a symphony, it’s nothing so organized and artificial and remote as that, but sure, yes, call it a symphony, because words like “texture” and “landscape” are even more misleading.

And now a whole section has been silenced.  Not simply resting, not waiting to rejoin the piece, but utterly removed from the stage.  Vanished forever.

I cannot describe how utterly wrong that feels.  Everything feels wrong, sounds wrong, every instinct is scraped on edge, screaming danger, because something has gone fundamentally, horribly wrong and I must fix it.  And I can’t fix it.  It can never be fixed, not by anyone.  Someone is missing and will never be found, no matter how many times we look; can never be replaced, no matter what we might do to try.

There is a silent hole in the world, and the best I can ever hope to do is train my ear not to hear it, most of the time.  Find a way to hear around the void and let what’s left fill my ears.  If I am lucky and work very hard at it, I can learn to appreciate the symphony for what it is, and not constantly obsess over what it once was and should still be.

December 2016
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