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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.

The Thief of Light

When Rebecca was almost 17 months old, she had her first real Halloween—the year before hadn’t really counted, since she spent the whole evening sitting in her bouncy seat dressed as a chile pepper.  It was a big occasion.  We dressed her in her Tigger costume and sat on the front porch with the bowls of candy we’d prepared for all the trick-or-treaters to come.  She loved candy and was thrilled to be sitting with her big sister and all that sweet stuff, even if we did keep telling her not to eat it.

Right on schedule, the first group of trick-or-treaters came up the front walk.  Carolyn, who loves giving out candy far more than she does receiving it, deposited a few pieces in each bag.  Rebecca watched this whole process very intently.  She watched the kids walk away, and saw that another group was headed up the front walk.  She looked at Carolyn, then the approaching kids, then down at the candy bowl in her lap.  Back up at the kids, then back down at the bowl.

And then she leapt up and took her bowl of candy to a far corner of the porch, hunched over her candy, defying anyone to take it.

Now if you offer her candy, you might get a nod or just a shrug.  Taking it from her elicits no reaction at all.


While she was never a super-chatty child, Rebecca was verbal pretty early and always happy to express herself, especially in disagreement or, really, any other form of opposition.  She was never shy about speaking up, a trait we subtly encouraged even as we tried to direct it.  If she thought you were being silly, she’d say so.  “Well that’s just lame,” she’s become fond of saying in the last few months.  Always with a little smirk, unless she really was angry.  The Brits would say that she absolutely loved taking the piss out of everyone around her, and loved even more that she could get away with it by making her target laugh along with her.

She barely speaks now.  Early in the day, we’ll get a few short sentences in response to questions or observations, but she almost never speaks on her own initiative.  A lot of her spoken answers are a clipped “sure”, delivered in a flat, almost bored tone.  Most of her communication with us is in the form of head shakes, nods, and shrugs.  Toward the end of the day, they become so subtle that only Kat and I can be sure what she meant.


Rebecca was always athletic, running and throwing like a much older child.  Like a boy, we would have said in my unenlightened youth, but it was never really like that.  Like a gazelle, I once thought, knowing very little about actual gazelles.  She just threw hard and well, and ran hard and fast, and loved to do both.  I have pictures of her sitting on a trapeze bar, holding the ropes, and her posture looks like that of a seasoned circus performer, sinewy and controlled and poised to do great things.  She excelled in gymnastics, to the point that last summer they moved her up to an older class, placing her on track to join the competitive gymnastics team.

Now she can barely stand upright.  When she has enough energy to walk, she has the slow plodding gait of a clumsy toddler, weaving in unsteady curves from side to side.  When she reaches for something, always so slowly, her hands visibly tremble.  The most activity we see in her comes from obsessive, repetitive motions, pulling over and over at a loose thread or worrying the beads on a bracelet or picking tiny crumbs of food off a plate.


Rebecca delayed potty training mostly because she knew we wanted her out of diapers.  If we hadn’t encouraged it, she probably would have done it sooner.  But she put it off, and put it off, just because she could.  When she finally did, though, she was done.  There was no night-training period, and hardly an accident.  She just gave up diapers one day, on whatever impulse made her decide to do it, and never needed pull-ups after.

Until now, because she’s lost almost all control of her bladder and bowels.  At first she was mortified, but now the most she registers is a distant sort of anger at us when we change her.  We have to change her several times a day, and she just lies there, staring vacantly at the ceiling until we tell her we’re done.  Then, sometimes, she moves her eyes to look at us and wait for us to help her up.


She was full of energy, our Rebecca.  She was always dancing through life, Kat used to say, singing her favorite songs when there was no music to be heard and making a walk on the sidewalk into a skip-steppin’, butt-wigglin’ festival of joyful movement.

Now she sits inert for hours, staring off into space for long stretches of time.  We have to say her name loudly, and sometimes move her head to face us, before she suddenly snaps back.  Her eyes focus on us, the eyebrows raise a bit in query.  We ask her if she wants this or that, sometimes more than once, before she responds.  Sometimes, if she’s more with it, she’ll sit inert and look at one of us.  When I gave her a bath tonight, she sat up in the tub, but as the water rose, her legs floated upward with it, slowly tilting her body backwards until I had to put a hand on her back to keep her upright.  And the whole time, she stared half-vacantly at the chromed overflow drain cover.  At her reflection in it.  At the person there, who I cannot be certain she recognized as herself.


Everything we felt so fortunate to have kept, all her intact neurologic function and physical health and vitality, her ineffable sun-bright spark, have been leached away.  She is dying by slow millimeters, sinking further and further into a miasma of lethargy both physical and mental.  All her emotions crushed flat by the rising pressure in her head.

For all that, she is still Rebecca.  She shakes her head no when she knows we want her to nod yes, and if there’s no smirk to go with it, maybe we can see the faintest echo of a crinkle around her eyes.  When we verbally fence her to the point that no isn’t an option, she just looks at us as if she has all the time in the world to wait out our interest, her eyelids slid just a fraction shut to register her disdain for our feeble attempts to outwit her.

At bedtime, Kat read Rebecca “Madeline”, a favorite they’ve long shared.  Rebecca was so drained that she was basically asleep before we put her in bed, but as Kat started reading, Rebecca’s eyelids slid partly open, her eyes rolling a bit before the lids fell shut again.  Her eyes kept cycling through this, over and over, as Rebecca fought to stay awake enough to hear her mother read her a beloved bedtime story.  She kept fighting until the closing passge:

“Good night, little girls!
Thank the lord you are well!
And now go to sleep!”
said Miss Clavell.
And she turned out the light—
and closed the door—
and that’s all there is—
there isn’t any more.

And as the last syllable passed Kat’s lips, Rebecca’s eyes stilled and she sank deep into sleep.


She lies sleeping on her back, her arms at her side as though not just asleep, but actually unconscious.  She has always been a side-sleeper, ever since the day she was born.  Now she lays inert, her head straight on her pillow, as if rehearsing for the casket she will never occupy.  But when a friend came in to give her kisses, she turned her head slightly, her brows drew together a bit in annoyance, and she folded defiant arms across her chest—still sleeping.

Her pulse is still strong and regular, and her breathing is slow and steady, the calm notes of a child at rest.  She relaxed her arms a while ago; they still lie across her chest, but separated a little bit.  Her jaw has stopped constantly working in her sleep, another new symptom we don’t know how to interpret.  Maybe she was dreaming of chewing gum, one of her favorite things in the whole world.  Maybe it was something very different, and much worse.  It still happens every now and again.

Earlier tonight, I was convinced by all these little clues, and a hundred more, that she would die tonight.  Now I’m not so sure.  The slow rhythm of her breathing gradually carried me from stupefied terror to a quiet reflection.  Now, as I stand guard over her sleeping body, I can look at her still, beautiful face without fear.  I can believe that she’ll wake tomorrow, no more herself than she was today, maybe even a little bit less so, but still going.

Still fighting to stay awake, stay alive, stay with us.

Blind Choices

It’s the nature of cancer and its treatment that there are often incredibly difficult decisions to make on very little information with no real idea of the eventual outcome.

Once conventional treatments for cancer (or any other life-threatening illness) fail, you enter a realm with no landmarks, full of apparently identical paths, and you must choose one.  Or else refuse to choose any, and so wait for death to catch up.  Because past chemotherapy and radiation, there are experimental studies, alternative remedies, and so on.  One of them might be the path to long life and health, but there’s nothing to distinguish it from all the others.  And it’s entirely possible that none of the paths lead anywhere but a quick death, some more painful than others.  And there’s still nothing to distinguish one from another.

So many paths, all looking exactly alike.  Choose one.

We’re facing a particularly difficult decision soon.  Rebecca qualified for a Phase I clinical study of a novel treatment.  It isn’t chemotherapy, but a whole different class of drug.  To quote (with a minor edit) the Sloan-Kettering Cancer Center:

Many cancer cells have a protein called p53 that does not work properly. This protein normally puts the [brakes] on rampant cell growth, and when it does not function well, cells can continue to grow uncontrollably (as cancer cells do). The p28 drug is designed to find and kill cancer cells with dysfunctional p53.

The major advantage is that p28 isn’t anything like chemotherapy; thus, it doesn’t have the toxic side effects of chemotherapy drugs, though apparently some patients do get nauseous from the infusions.  It’s basically a genetic therapy, in the sense that the treatment is designed to address a particular genetic situation.  It doesn’t interfere with other systems, like the immune system or bone marrow.  Not so far as anyone knows, anyway.  It’s always possible the study could show otherwise.

We’re in this study because the genetic analysis of her tumor last fall indicated a “p53 deletion”.  Thus, drugs meant to address p53-related problems are a first choice.  In theory, p28 could completely halt the growth of her tumors.

In theory.  In practice, miracle drugs are never totally miraculous—every type of cancer is its own distinct thing, and every patient responds differently.  The upshot is that there’s no way to know if her tumors are being affected by the p28 drug without doing an MRI.  The doctors leading the study arm in Pittsburgh want to do an early MRI, six weeks into the study instead of 12, to see what’s going on.

If we do the MRI and the tumor is essentially unchanged from the start of the study, then it means the drug is working.  In that case, we continue the treatments while we try to figure out ways to cause the tumors to shrink, either through careful surgery or other experimental treatments.  Kat’s been researching options along those lines, since she’s the one with three advanced-practice medical degrees and a Doctorate of Nursing.

At the other end of the spectrum, if we do the MRI and it shows the tumor is growing just as fast as before, meaning the p28 isn’t working at all, we would withdraw from the study, because the time we spend going there and back for treatment is wasted time.

But if we do the MRI and it shows too much continued growth, even if it’s a reduced rate of growth, then she will no longer qualify for the study.  Some growth is acceptable under the study protocols, but too much—even if it’s less than would have been the case without the drug—is not.

We don’t know what the odds are for these outcomes.  Rebecca is part of the first p28 study ever done in children.  And there haven’t been that many p28 studies in adults.  There is nowhere near enough data to tell us what the odds of success are in general, let alone for her specific type of tumor, let alone for tumors of that type in patients with her age and gender and ethnic background.

If we scan sooner, at six weeks, two out of three outcomes will mean she exits the study and the tumor continues growing at its pre-study rate.  One of those two would mean exiting the study even though there was some benefit, simply because there wasn’t enough benefit.  The third outcome is the best case, the one where she stays in the study because it’s working.

If we wait to scan at twelve weeks, and the tumor is growing unchecked, it could very easily kill her before we get to the scan.  We would spend all those hours in the car for nothing.  Or she could have too much growth and be disqualified.  Or the growth could have stopped.

These are the blind gambles you take, the excruciatingly difficult dilemmas you face, as the parent of a dying child.  Do you find out what’s happening sooner, even though it could mean you hasten her death, when not finding out might have meant she’d live longer?  Do you wait to find out what’s happening, even though that could mean you waste six more weeks, and you could have used those six weeks to try to find another treatment, one that might actually help?

And even if you look sooner, and as a result you find out that another treatment is needed, you don’t know what other treatment will actually help.  Maybe none of them will.  The choice is real enough, but the implied promise—that the right choice, if you can somehow manage to find or luck into it, will lead to a cure—may be, almost certainly is, an illusion.

I don’t know what choice we’ll make.  I still haven’t worked out how to come to a place where I can live with whichever choice we end up making, should the worst outcome of that choice come to pass.  I can’t even take refuge in not choosing, since that is the same as choosing to scan later instead of sooner.

Events will not wait for me, of course.  Soon enough, the choice will have to be made, one way or the other, whether or not I’m ready, whether or not I’m prepared to live with the consequences.

The only thing I think I do know is that I wouldn’t be able to live with myself if I refused to make a choice.  Right or wrong, good or bad, this is part of what I volunteered for when I became a parent.  Taking that role meant taking responsibility for the lives and welfare of my children.  Now Kat and I must take direct responsibility for the life and death of our child, and if we must choose blindly, we will keep her firmly in our sight as we choose.

Three Interludes

We lay snuggled together in her bed, the stories read and books put away, the lights turned low, listening to her nighttime music.

“Rebecca, can I tell you a secret?”

“Sure.”

“I love you super a lot.”

“I already knew you were going to say that, Daddy.”

“Oh, so it’s not a secret?”

“Nope.”

“Well then, can I tell you something that’s NOT a secret?”

“Sure.”

“I love you super a lot.”

“(exasperated sigh)”

I answered with a small chuckle, which earned me an affectionate glare.  Five minutes later, she was asleep, her breath quiet and even and calm and as normal as it had ever been, in the years before the tumors and the months after.


We were at the local playground, Rebecca and her sister Carolyn and brother Joshua and some friends and me.  At no apparent prompting, Rebecca came running toward me, then slowed to a walk and beckoned me to lean down closer to her.

“Daddy, I need to tell you something.”

“What?”

“I love you.”

“I love you too.”

“I love you more! I love you to infinity… and BEYOND! No really, I do.”

And she was already headed back to the slides, smiling at me over her shoulder, her eyes squinted in a knowing amusement, before she turned away and rejoined the other kids at play.


We lay snuggled together in her bed, the lights turned low, listening to her nighttime music and admiring the rainbow arc projected onto the ceiling by a bedside light.  It fell across the ceiling fan and some of the get-well stars strung in a line from one side of the room to the other.

“Daddy, did someone put a rainbow on that star?”

“No, it’s from the rainbow light, sweetie.”

“Oh.”

“What do you think when you look at your stars?”

“I think that my friends are always cheering for me.  Always.”

“You bet they are.  Always.”

“I love you, Daddy.”

“I love you too.”

“I will love you forever.”

“I will love you forever and ever.”

“Daddy, why are you copying me?”

“Well, because your words are beautiful, and they’re all true.”

“Oh.  Okay.”

“I love you to the moon and the stars and back again.  I love you to infinity and beyond.”

“Okay, okay, Daddy, we get it already.”

“Good.”

She smiled at me like we shared a gentle secret, as normal as ever.  I kissed her forehead, and within two minutes, she had fallen asleep.  I listened to her slow, steady breathing, my arm still curled around her—not to protect her, but just to hold her close—and looked up at the stars and watched the rainbow until its timer reached zero and it faded away.

Heroic Measures

This morning, I walked Rebecca and her best friend to kindergarten, all of us enjoying the crisp spring sunshine after the long, cold winter.  The girls ran ahead of me to see if the playground had been re-flooded by last night’s rains (it hadn’t) and then balance-walked a low retaining wall.  Once inside the school doors, I hugged and kissed Rebecca and told her to have a good day, collecting a hug and kiss and a “Love you, Daddy“ in return.  I watched as she tromped down the hallway in her sparkly new Bella Ballerina shoes and pajamas (today is a special Pajama Day at school) and rounded the corner out of sight.  And then I handed her principal a Do Not Resuscitate order.

She’s still so alive, so very vital, but we know that could change at any moment.  We’ve lived through it once already, last August, when she went from playing on the beach to the literal brink of death in just three days.

We carry DNR cards with us, and have given the school a DNR form sealed into a manila envelope with our names and phone numbers written on the outside, because if she suddenly seizes, our overriding goal is to make her as comfortable as possible while she dies.  The EMTs or hospice or we ourselves will give her medication to take away the pain and, if at all possible, the fear.  As much as she needs.

Because we know what will happen if the tumor induces seizure and she’s forced back to life.  We know that once it’s reached that stage, there are mere hours left, even if we permit life-prolonging measures.  Heroic measures, they’re called.  Hours, possibly days, spent in misery and pain and fear.

We can’t do that to her.  If there were a reasonable chance of her suffering leading to a cure, yes.  We did that last August, submitting her to multiple surgeries and the difficult recovery afterward, because there was reason to think that doing so would save her life.

Now we know better.  We know that when the cancer overwhelms her, there is nothing that can stop it.  We know that the best we can do is make what’s left of her life as normal and happy and full of love as possible, and minimize any horrors as it ends.

We’ve thought about pulling her from school entirely.  That would ensure that if she does have a sudden seizure, she’ll do so with one of us.  By sending her to school, we risk it happening when she’s not with us, and inflicting that experience on her schoolmates instead.

We send her to school because she loves it there, however much she may complain about having to get up in the morning and get dressed and put on a coat to walk to school.  Try as she may to hide it, she loves to learn.  She loves her teacher, her classmates, and her friends, and they love her in return.  It would be selfish of us to take that away, despite the risks, despite the hours of separation.  It would shift some of our burden onto her shoulders, force her to pay the cost of our sorrow and fear.

There are so few things we can do for her now, so very few things, but we can do this: we can give her her life, as whole and unbroken as we can manage, and an unspoken promise to fiercely guard it from even ourselves.  We can give her this.  Our last gift.

A New Trial

Very early this morning, we hit the road for Pittsburgh.  We plan to be back home around lunchtime.  We plan to do this three times a week for the next four weeks.  Twelve days of two and a half hours in the car, an hour or more in the hospital, and then another 2.5 hours in the car, all on a slim hope of buying some time.

Rebecca has qualified for a Phase 1 clinical trial of an experimental drug that might—it might, maybe, possibly, if we’re very lucky—slow or even halt the growth of her tumors for a while.  Not shrink them nor eradicate them; this is not a cure.  It’s a new type of treatment, not chemotherapy, but genetic trickery.  Our research had led us to be very interested in this study, and thankfully we were able to secure a spot and qualify for inclusion.

The fact that it’s not chemotherapy means there should be no toxic or other negative physical side effects, which is a very high priority for us.  Furthermore, for people with Rebecca’s specific genetic mutation, this drug has shown a fair amount of promise.  In an earlier Phase 1 trial of the same drug as applied to adults, one patient’s tumors stopped growing for a period of years.  But then, another’s tumors barely stopped growing at all.  (And we don’t know which kinds of tumors responded in which ways.)

This clinical trial is the first test of the drug in children, to see if it works the same, or better, or worse, as compared to adults.  It’s being managed through the Pediatric Brain Tumor Consortium.  The closest PBTC site is the Children’s Hospital of Pittsburgh, where we were able to be sited.  So off we go.

And we keep asking ourselves: Are we doing the right thing?  Is it worth it?

It might seem like an easy choice.  What’s three mornings a week against a child’s life?  It’s 20-25 hours, is what it is, out of something like a hundred waking hours every week.  That’s almost a quarter of her waking time spent sitting in cars and hospital rooms, instead of being at school or running around playgrounds or coloring or playing with friends and siblings.

Sitting in a car isn’t 100% wasted time, of course; it’s not like she’ll be confined to a blank beige box for the trip.  She can sleep on the way there, and watch videos or play games on the way back—thank you, tablet computing industry!—or vice versa, I suppose; but it’s still a lot of time that could otherwise be invested in other, more interesting activities.  So while there may be no pharmacological side effects, there are serious side effects nonetheless.

And thanks to the MRI that was done Thursday, in order to establish a baseline for the study, we know that she is quickly running out of time.  The primary tumor is noticeably larger than it was five weeks ago, and the flare sites haven’t gone away.  How she’s managed to avoid neurological damage, nobody is quite sure.

Given how little time she has left if untreated, if this drug adds a year to her life, then yes, it’s absolutely worth it, especially if that gives us time to qualify for a study that somehow leads to tumor reduction.  But what if the drug only adds a couple of weeks?  Is it worth it to extend her remaining time by fifteen percent, if a quarter of her life is spent away from friends and home?

On the other hand, what if the drug doubles her time left to live?

On the other other hand, what if it doesn’t add any time at all?

We don’t know.  We can’t know.  We can only guess, and try to be as rational about it as we can be even though we are, essentially, blindly choosing how quickly our child will die, and what her life will be like along the way.

Today She’s Okay

While we were in Florida on Rebecca’s Make-A-Wish trip to Disney (and other parks), we were asked a few times which of our kids was the Wish kid.  And I suspect that quite a few more people just assumed it was Carolyn, since her hair is still buzz-cut short.  Rebecca was able to fully enjoy the trip and be an active part of it, every bit as much as her siblings and cousins, and the pictures and videos we all took are full of laughter and excitement from all of the kids.

This has been one of the many fortunate aspects of our misfortune: Rebecca has never really been sick, in the “I feel ill” sense of the word, since she recovered from her surgeries last fall.  The tumors in her head haven’t had any measurable neurological effects, and if they’ve made her a little more irritable or irrational, well, this is a five-year-old we’re talking about.  How could anyone tell?

Even the chemotherapy and radiation therapy had no major side effects.  We tend to think of cancer patients as thin, pale, bald, weak, and vomiting, as much from the toxins we pour into them as anything else.  Rebecca has remained as energetic, luminous, and irrepressible as ever.  Now that she’s stopped her Avastin treatments, she’s able to go back to gymnastics class, and is eager to do so.  She’s even kept a full head of hair, albeit with some loss of hair volume.  We can see that there’s less hair, but a random passerby on the street would never suspect she was a cancer patient, let alone near-terminal.

Thus our new mantra: “Today she’s okay.”  We don’t know what tomorrow will bring; but really, who ever does?  We live with a more present, known danger than most, but today she’s a normal kid.  She’s so normal that even we can forget, sometimes for hours at a time, that she’s terminally ill, that a lump of runaway growth sits behind her eye and threatens to one day kill her.  She’s so normal that we have the space to make our family’s life (mostly) normal.  We hope that tomorrow she’ll be the same.  Whenever our fear of that tomorrow rises, we say to ourselves and each other: “Today she’s okay.”

We’re still working to find treatment options, of course.  There are some promising leads developing even as other leads that looked promising have been closed to us.  A driving force in that search is the desire to keep her as healthy as possible—to preserve her quality of life while still trying to extend the quantity of her life.

It’s a balance almost incomprehensible in its gravity: to decide how much quantity to risk in exchange for protection of the quality, to decide how much quality we can sacrifice in an effort to add quantity.  Before all this, I would have thought maintaining that balance would be paralyzing, but it isn’t.  If it ever starts to become so, we have only to look at her, still full of life and vigor, to know what to do.  We may be the captains of the ship that carries her, but we steer it by the light of her star.

Today she’s okay.  And so today we’re okay.

All the Way to the End, All of Us Together

Our first day here at Disney World, we tried to go on Big Thunder Mountain Railroad, but it was closed “for refurbishment”, so we decided to try Splash Mountain instead.  In addition to being a ride that was right there where we were, it promised to cool us off a bit.  Going from 30ºF to 90ºF in the space of a day was a bit rough on everyone.

Carolyn and Uncle Jim sat in the front seat of the log boat, and Rebecca sat between me and Kat in the next seat back.  Things started well enough as we splooshed and bobbed around bends, but fairly near the beginning of the ride, you get a glimpse of its (sort-of) end: a fifty-foot drop down to a splash pool.  Rebecca, seeing a log full of people fly past us down the ramp, the screams of its riders trailing in its wake, wasn’t at all happy.  She switched instantly from being amused at the water occasionally splashing her parents to scared of what was going to happen.

The various animatronic displays along the way helped distract her, but she kept returning back to her fear of the big hill.  Kat and I soothed her as best we could, telling her it would be all right.  She generally accepted this, calming down until the next time she remembered the big hill that lay ahead.  She never cried, exactly, but the fear was still there, an almost physical thing at times.

“I don’t wanna go down the big hill!”

“Honey, it’s all right.  It’s going to be okay.  We’re right here.  Mommy and I will keep you safe.”

“No, I don’t wanna, it’s too scary.”

“I know, sweetie.  I know you don’t.  But there’s no need to be afraid.  It’s coming and it will happen and then it will be over.  Try to enjoy all the little shows before.”

“Daddy, please let me get off the ride.”

“I can’t, honey.  If there was a way to get off, we’d take it, but there isn’t.  The ride goes where it goes, and we’ll go with it, together.”

“I wanna get off this ride!”

“I wish we could get off, Rebecca, but we’re on the ride now and we have to take it all the way to the end.  I know you’re scared, but we’re right here with you.  We’ll keep you safe, sweetie.  You don’t have to be afraid.”

We’d arrived at the bottom of the last climb, the one that would take us to the big drop.  She looked up the ascending tunnel into the bright, bright light streaming down, and shrank back, quivering, her eyes wide with fear.  She knew the moment was close.  I leaned in next to her, keeping my voice level and light.

“I know, Rebecca.  I know.  I know you’re scared, but it’s going to be all right.  It’s going to be all right.  It’ll be all done very soon.  Mommy’s here, and I’m here, and we’re with you until it’s over.  We’ll stay with you all the way to the end, all of us together.  We’ll be right here with you.  Always.”

The log was drawn up the hill, the drop coming closer and closer, relentlessly.  My arm around her shoulders, Kat’s arm around her shoulders, both of us hunched toward her tiny, trembling body pressed against our sides; and as we came to the precipice, she shut her eyes and squeezed our hands tight.

September 2014
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