Posts in the Rebecca Category

Forever and Ever

Published 2 months, 2 days past

We had been awake since one in the morning.  She had been unconscious since three in the morning.

We’d been taking turns sleeping with Rebecca in the nights leading up to that day, six years ago today, and on the final night it had been my turn.  I was woken by a sound, from her or by her I still don’t know, and I saw that she was awake.  And had vomited.  And still could barely move.  And I knew this was it.

Kat called the hospice nurse to come and give her the drugs to take away the pain, and we waited, sick with despair and doing everything we could not to show it.

We gently held her as she trembled.  We kissed her head through her curly hair, told her that we were here with her and that she could go, not to be afraid, we’d be there with her soon.  Lying to her, now, finally, so far past the point where truth was kind or helpful, telling her whatever we thought would take away even a tiny slice of the fear.  Shamelessly, literally shamelessly, weaponizing all the trust we had built up over the years by telling her the truth her whole life, to ease, if we could, the last hours of it.

Her eyes were wide, even for her.  They barely blinked.  We could still catch her attention, but it was so much harder now.  The trembling increased, and then, eyes somehow still wider, she started to claw frantically at her temples, trying to dig out the thing that was killing her.  Or just to somehow relieve the pain.

I had to restrain her, catch her small wrists in my hands, wrap my arms around her arms and shaking small body and brokenly tell her no, stop, I know, I know, I’m so sorry, we want it to stop too, I know, we love you.

The nurse was finally there and administered a lot of narcotics.  Not enough to kill her outright, but enough to take away the pain.  And consciousness.  I almost asked him to double the dose, or triple it, whatever was necessary to end things quickly and painlessly.  I stopped only because I realized the position that would put him in.  And that if it were an option, he’d already have offered it.

Waiting for the drugs to work, we read her her favorite stories, holding books up one at a time and asking if she wanted this one, this one, this one.  Her head would jerk in a prototype of a nod, and we’d open that book and read, taking turns, voices somehow as clear and steady as if we were doing normal bedtime stories.  I made a list as we went, because I knew I’d want to know later.

  1. Mike Mulligan and His Steam Shovel
  2. How the Sun Was Brought Back to the Sky
  3. Madeline
  4. Jump Rope Magic

Halfway through that last, the drugs finally took hold, and she slipped into unconsciousness.

Or really, semi-consciousness: some part of her was still aware of her surroundings.  Every time Kat shifted or drew away for a moment, Rebecca would whimper quietly, and only stop when she could hear and feel Kat reassuring her.  She only did so for me when I got up from the bed entirely.  I would assure her that I would be back in a minute or two, that I wasn’t going away for good.  That was enough to quiet her.  She trusted us so much.

Shortly before dawn, we started sending texts to loved ones.  This is it.  If you want to say goodbye, you need to come today.  She has hours left.  And asked them to spread the word, so others would know to come.

Just after dawn, at 7:22 in the morning, she crossed another threshold.

Happy birthday, Rebecca, we told her with quietly trembling voices.  You made it.  You really did.  You’re a great big six year old now.  We love you so much.

There was no response.

So many people came to see her one last time on her sixth birthday, drifted in and out of her room, a slowly shifting cast of characters supporting her, us, each other, themselves.  I don’t really remember how it felt then, barely remember who was there and who was not, but looking back now it’s like those movie scenes where one person is still, sharply in focus, while long-exposure blurs of people moving around them draw a contrast between what matters and what is incidental, between transience and permanence.

Sometimes, what is still is the most transient of all.

By late afternoon, there were signs the drugs weren’t enough, that she was going to start seizing despite everything.  Which in turn meant there was a risk she’d come back to a consciousness filled with nothing but incomprehensible pain.  We weren’t sure what we could do.  She’d been lying on her back all day, so nearly motionless, body flaring with fever, shallow breaths coming and going in a rhythm I kept falling into, the way you do when your child is in distress.

Kat looked across at me and said, She’s a side sleeper.

We rolled Rebecca onto her sleeping side, her right side, and her breath hitched, drew in slowly, and then flowed out deeply, contentedly.  Her breathing stayed slow and deep, the rhythm of sleep, comforting, except it gradually got slower and slower and slower.  Stretched out more and more over half an hour, eventually slow enough that when it stopped altogether, we almost didn’t notice.

We checked for pulse.  Breath.  Pulse again.  Nothing.  For a minute.  Two.

A sound came from my throat that I know now is the true sound of ultimate suffering—and as if startled by it, she drew in another breath, choking me off.

We begged her to stop fighting, told her it was okay to go, we loved her, we loved her, we loved her.

A few minutes later, pulse and breath stopped again.  And Rebecca was gone forever.

Rebecca, who we knew so well.

Rebecca, who we had barely gotten to know.

Rebecca, who we will never get to know.

Time has moved on, as we have, and yet some parts of us have not.  Some parts of us are caught there, six years ago today, able to do nothing but watch her slowly slip away, literally helpless to do anything except try to soothe her through the haze of drugs and thickening darkness with our words, our touch, our presence, our love.  Parts of us frozen in that passage, unchanging.

Like Rebecca is now, forever, and should not be.

When I was One, I had just begun. When I was Two, I was nearly new. When I was Three I was hardly me. When I was Four, I was not much more. When I was Five, I was just alive. But now I am Six, I’m as clever as clever, So I think I’ll be six now for ever and ever.

—‘Now We Are Six’, A.A. Milne


So Full of Fire

Published 1 year, 1 month past

I was recently at a conference where someone thanked me for my openness about Rebecca and grieving, and expressed their condolences.  And then they said, “She was obviously very sweet—” to which I must’ve pulled a face, because they said stumbled to a stop and then said, “No?”

I reflected for a few moments.  Eventually I said something to the effect of her being more sassy than sweet.  I believe the words “a real firecracker” were used.  She was never malicious.  She was usually laughing.  She had her sweet side.  But it was just one of many sides.

I was reminded of this today when I came across a post by Elizabeth K., who has worked for years at the kids’ preschool.

I witnessed [Rebecca’s] defiance more than once.  But especially this one time, when Kat, never losing her temper and never wavering on the rules, amazingly sat calmly on the couch in our office as Becca refused to say “please” for a lollipop.  There were many “NO!s” when countlessly reminded all she needed to do was utter a simple word.  She never gave in.  She left without a lollipop.  She held her ground.  She was three.

You might say that every kid does that sometimes, but with Rebecca, it was pretty common.  She wanted things her way, and she was incredibly tenacious about it, willing to forfeit the thing she wanted rather than yield.  Filled with fire and determination, practically vibrating with the force of her will.  We had occasional fears about what she’d be like as a teenager, never suspecting.  We’d already quarter-jokingly agreed with her best friend’s parents that, when we eventually had to bail the two of them out of juvenile detention, neither of us would blame the others.

It’s incredible to think what I’d have given to have that experience.  And how angry and unthinkingly ungrateful I’d have been, had that come to pass.

Elizabeth’s post ends:

…I love to visit the Kindergarten classes because many of the students are children who were in our Early Childhood Center and Daycare program the year before.  So I was welcomed with lots of “Lizzy!”s and “Look what I made!”s.  I was looking at Ruthie’s art project when Becca and I caught each other’s eye.  I told Ruthie how great her picture was and then said to Becca “You know what today is?” to which I got the famous side-eye.  “It’s no-hug day.  There are no hugs allowed today.”

She thought about it for a second and then leapt into my arms.  One of those great big hugs.  She loosened her grip, turned her head and whispered into my ear, “You were fooling.”  Sharp as whip.

“Yep.  But I got a hug.”  She gave me another classic Becca face, [smiled], and went back to her friends.

I count myself lucky to have been witness to her spark and her sparkling personality.  To say she will be missed does not cover it – not at all.


Half a Decade

Published 1 year, 2 months past

Rebecca has been dead for half a decade now.

I feel like I’ve run out of words.  How many times, how many ways can I say that nothing is quite right, nor ever will be?  That I miss the girl she would be today, eleven years old?  That I’ve learned to hear around the void she left, but it’s always there in quiet moments, omnipresent, like tinnitus of the soul?

Five years gone.  It will never be okay.  I will never be okay, no matter what I answer when asked how I’m doing.  I lie, all the time, to strangers and friends.  To customer service reps.  Librarians.  Other parents at school.  Myself.

“Hey, how are you?”

“I’m all right.”  Liar.  But better that than dropping a tragedy bomb on an unsuspecting soul.

A cashier asked me this morning how I was doing today, and I didn’t answer, because the words froze in my heart and I doubted that they cared all that much anyway.  I waited a beat or two, silent, and then said, “How ’bout you?”

“Doin’ okay,” they said, as if I’d answered them.  Maybe it was true.  Maybe they were lying.  Or maybe they didn’t have any particular reason to think about what they said and whether or not it was true, or false, or not even wrong.

I’ve said I’m used to it, and that was the truth.  I’m not over it, will never be over it so long as I live, but I’m used to it.

Being used to this hurts, when I think about it.  So I try not to think about it, and that hurts too.  Not like a sword through the heart, not like unending fire, more like a dull ache.  My aging body is starting to produce more and more of those.  I resent it for living years beyond what Rebecca got.  Snarl at reality for offering no way to give my years to her.

I’ve said all these things before, one way or another.

Five years.

No words.


Decimated

Published 2 years, 2 months past
Rebecca blows out the candles on a birthday cake.

In another timeline, an early alarm woke Kat and me this morning so we could sneak into Rebecca’s room with her siblings and wish her a happy birthday at the moment she turned ten, 7:24am, June 7th, 2018.

Two digits.  It’s a big milestone, in its way.  Rebecca’s best friend Ruth passed it a few days ago.  Ruth, who she called “Ruthie”.  Who shared all three of her initials, and practically had the same birthday.  Who was the last person to whom Rebecca ever spoke a complete sentence in her full voice, the morning of the day before she died: “Goodbye Ruthie, I love you, MWAH!”

Ruth, who still dreams of Rebecca, happy dreams that make her waking sad.

I have dreams like that too, when I remember them.  I don’t often remember my dreams.  But sometimes, I get to spend a little time with her, free of sorrow, on a nighttime walk or at an amusement park my subconscious constructed out of all the parks we ever took her to.

Kat and Carolyn and Joshua and I went to the grave marker this morning, because Kat works all afternoon into the evening and Joshua has an all-day LEGO and chess camp and Carolyn has friends to see before summer vacation gets crazy.  Because life moves on even when a part of you can’t understand why the sky doesn’t collapse and the world doesn’t crack open and time doesn’t shatter into a million sharded memories.  Classes get taken, grades get graduated, camps get attended, trips get planned, work has to be done.  Each day follows on the one before, pulling you further and further away from the last moments your life was normal.

We stood or sat or huddled around the flecked slate blue granite slab under the gray clouds of morning, emotions flaring and fading, subsumed by a profound sorrow without many tears.  We’re too used to it, now.  The sobs of previous years have given way to a steeled mourning.  Sometimes there is resentment at the stupid blind unfairness of the holes shot through all our hearts, the hole in our lives, and all the things she and we never got to experience.

Her playgroup friends still talk of her with their parents.  Rebecca was a good friend, she was funny, she was fun, she was so nice.  In their way, still trying to come to grips with what happened to her.  To them.

They don’t mention her to us.  Children, trying to protect the grown-ups.

Which makes sense, since they know, now, that sometimes grown-ups can’t protect the children.  Sometimes the killer gets into the house and there is nothing you can do to cast it out.

Sometimes there is nothing anyone can do, except hold the victim’s hand as her life ebbs away, and wish your desperate pleas to take her place had been heard.  That there was something to hear, anything to hear, and accept a frantic parent’s bargain of life for life.

Ten years ago today, Rebecca came into this world.  Four years ago today, she left it.

I can’t remember if I ever told her I would never forget her, or if I was too afraid of frightening her.

I clearly remember when and where she told me, sobbing, knowing she would die, that she would never forget me.

I can still recall the terrified strength in her arms, locked around my neck.

I hope I told her then.

Today she should have been ten.


Help Insurance

Published 3 years, 1 month past

This is my daughter Rebecca in 2013.  She was 5¼ years old when I took this picture.  Less than three days later, she almost died on an ER bed.

She’d been completely fine when we set out for vacation that year, and just seemed to come down with a virus or something just after we arrived.  She got checked out at an urgent care center, where they diagnosed strep throat.  But antibiotics didn’t help.  She slowly got more and more sick.  We finally took her to be checked out at a nearby hospital, who were just as stumped as we were.  They were looking for a room to put her in when she seized and flatlined.

Just like that.  She’d been ill, but not severely so.  All of sudden, she was on the edge of death.  The ER staff barely stabilized her, by intubating her and administering drugs to induce a coma.

There was a large tumor in the center of her brain.  Our five-year-old girl, who so far as we knew was completely fine just days before, had aggressive brain cancer.

After a midnight life flight nobody was sure she would survive, she arrived in Philadelphia and had several cranial surgeries, spent more than a week in the pediatric intensive care unit, and then was transferred down a few levels to spend another two weeks on the recovery floor, slowly rebuilding the muscle strength she’d lost from more than a week of immobility.

Later, there were weeks on weeks of radiation and chemotherapy in Philadelphia.  After the initial treatment was done, we came home to Cleveland for more chemotherapy.

This is her, hauling her baby brother Joshua up the slide in our backyard, and hauling her mom through the crowd at the local garlic festival.  At a CureSearch walk with her siblings and dozens of friends and family.  Just barely tolerating my terrible dad jokes, doing her utmost not to encourage me by laughing.

We did everything we could, sometimes through tears and sickening horror, but the treatments didn’t work.  Rebecca died at home, surrounded by friends and family one final time, less than ten months after her cancer was discovered, in the early evening hours of June 7th, 2014, her sixth birthday.

In those ten months, the total retail cost of her procedures and treatments was $1,691,627.45.  Nearly one point seven million US dollars.

We had health insurance—really good insurance, thanks to COSE’s group plans and my wife’s and my combined incomes.  The insurance company’s negotiated rates meant they paid $991,537.29, or about 58% of the retail price.

We paid very little, comparatively speaking, until you counted the monthly premiums.  All of it together, co-pays and premiums, was still in the low five figures.  Which we were, fortunately, able to pay.

Without insurance, even if we’d been able to get the insurer’s rate, we’d have gone bankrupt.  All our investments, our house, everything gone.  If pre-existing conditions had prevented us from being covered, or if we’d been less fortunate and unable to afford premiums—bankrupted.

In which case, Rebecca’s brother and sister would have suffered her death, and the loss of their home and what precious little remained normal in their lives.

How many families live through that double hell?  How many go completely broke trying to save their child?  How many could have saved their children, with coverage that paid for life-saving treatments?  How many never had any chance of saving their child, but ran out of money before treatment was complete and now believe their lack of insurance and money was what killed their child?

How many more will have to live with those unthinkable situations, if the House and Senate bills go forward?

The point, the essential point, is this: every family should have the chance to fight as hard as possible for their loved one’s life without going bankrupt in the process.  And for those who cannot be saved, no family should be denied the knowledge that they didn’t have a chance.  Because knowing that does provide some (small) measure of comfort.

The Affordable Care Act wasn’t perfect, and it was severely and willfully undercut after it launched, but it was a huge step in the right direction.  The bill currently before Congress would be an enormous step back.  I doubt that I’ll benefit from the tax cuts that are part of the bill, but if I do, I’ll commit every cent I get from them and more to unseat anyone who votes yes on this bill.  I have let my senators know this.

I would spare every family the pain we endured, if I could, but nobody has that power.  We do, together, have the power to help every family that must endure that pain, to give them access to the simple safety net they need, to concentrate everything they can on the struggle to heal.

I miss her every day, but I know that we did everything that could be done, including being able to afford the hospice care that kept her as comfortable as possible in her final hours, preventing the seizures and pain and fear that would have made her last moments a hell beyond endurance.  Allowing her a peaceful end.  Every family should have access to that.

Please think about what it means to take that ability away.  Please think about what it means to take away the ability to avoid having to make those choices.

Please.


Eulogy, Completed

Published 3 years, 1 month past

Three years ago, almost exactly to the minute as I publish this, I delivered the eulogy at my daughter’s funeral.  A few months after that, reading it again, I discovered that when I wrote it, I didn’t really finish it.  I understand why: I wrote it in the days after her death, and was not really able to think it through.  It was only in hindsight that I realized what was missing.

So today, I’m publishing the eulogy as I would have written it, had I been of clearer mind.  The final two sentences below are what I left off.


Rebecca was fierce.  She beat adults in staring contests when she was two weeks old.  Rebecca was joyful.  Her laugh could fill a room and bring a smile to anyone who heard it.  Rebecca was stubborn.  She would often refuse to give in, even when it cost her something she wanted.  Rebecca was kind, and loving, and mischievous, and oh so very ticklish.

She vibrated with energy.  Her philosophy was essentially: never walk when you can skip, never skip when you can run, never run when you can dance, and never dance when you can hide yourself around the next corner and then laughingly yell “BOO!” when everyone else finally catches up with you.

She loved to steal our phones and wallets and keys from our pockets, not to hide them away or do anything mean or malicious, but to wave them in front of us and laugh her way through an affectionate, singsong tease.  If there’s a world beyond this one, I hope whoever’s in charge has secured all the valuables.  Not to prevent her from swiping them, which would be an impossible goal, but because she would be disappointed and bored if they were too easy to swipe.

Rebecca is not an angel, nor would she wish to be.  If anything, Rebecca is now a poltergeist.  On her sixth birthday, we had planned to go to Cedar Point that day and the next.  Instead, that was the day she died… and on that day, a water main break closed Cedar Point for the entire weekend, because if she couldn’t go, then nobody gets to go.  And in brief conversation this morning, I was literally about to say the words “lose electricity” when the power went out in our house.

The little stinker.

One of the hardest things for us in the last few weeks of her life was seeing how the tumor slowly and inexorably took all that sass and spice away from her.  The loss of energy and emotion was horrible.  We had fought so long and hard to keep her quality of life normal, and we had succeeded.  It was only at the very end, just the last few days, that she moved beyond our ability to preserve it.

Underneath it all, she was still Rebecca.  She got mad at her sister and brother because they would get to stay with us and she wouldn’t, and then she forgave them because she understood it wasn’t their fault and she loved them so much.  She gave us disdainful looks when she thought our attempts to tease her were lame.  She asked, wordlessly but clearly, to hear her favorite stories.  She told us she didn’t love us because she wanted to push us away, to lessen our pain.  But when we explained to her that the joy of loving her was worth any pain, and that we could never stop loving her regardless, she relented and admitted the truth that we had never doubted.  The last words and gestures that passed between us were of love.

In her last hours, she was surrounded by love, her room filled with people who loved her as she loved them, never leaving her alone for a second.  We held and snuggled her all the way to the end, all of us together.  And the people in that room were surrounded by the love of those who loved them, and they by those who loved them.  All of that love focused on Rebecca.  She deserved it.  But then, so does every child.

Now she is gone, and we who remain are devastated.  It is only together that we will move forward.  Community has sustained us the past months, and made it possible for us to do everything we could for Rebecca and Carolyn and Joshua.  Community will help us get through this.  Our hearts have been broken into uncountable pieces, but we will help pick up those pieces together.  I am beyond heartbroken that she is gone, but I will never, not for an instant, ever regret that she came into our home and our lives.

What matters in this life is not what we do but what we do for others, the legacy we leave and the imprint we make.  Her time may have been short, but her spark illuminated so much in that time, touched and warmed so many people, and for the rest of our days we will all be changed for the better.  That is what Rebecca did for all of us.  And any of us would be beyond fortunate to have lived our lives with half as much meaning, or a tenth as much joy, as she lived hers.


Half Life

Published 3 years, 2 months past

Three years ago, Rebecca took her last breaths.

She’s been gone for half her life.  Half the time she had with us, elapsed in absence.

It’s still hard to comprehend.  The old adage that you don’t get over it, but you get used to it, holds true.  I’m used to her absence.  I still think of her daily, usually multiple times a day, reminded one way or another.  The reminders can spring from moments of joy that I suddenly realize she isn’t there to share, or from moments of profound sorrow over the state of everything, or just from spotting an unexpected flash of purple.

In the initial grieving, each moment of remembrance was like an enormous jagged spike driven violently through my chest, impaling me in an anguish I could not actually feel, even as I experienced it.  My breath would hitch to a stop as I remembered the hitch in hers, as her body finally relaxed and the space between each breath got longer and longer, even as each breath was a fractional bit fainter than the one before.

My grief has similarly faded, these last three years.  That terrible, transfixing pain has its own slope of decay, if you let it decay, dropping into a long tail of quiescence.  If you’ve ever suffered a major injury, then you know what I mean.  The initial pain is overwhelming, filling your entire awareness and leaving room for nothing else.  That fades into a massive suffering as the injury is addressed.  After the initial recovery, you come to live with a constant pain that is manageable, if utterly draining to endure.  After a longer while, that becomes an ongoing ache, easily aggravated but also somewhat possible to ignore for short periods.  And so on and so on, until months or years later, it’s a twinge you get every now and then, maybe a dull ache when the weather changes or you shift your weight the wrong way.  Something you can live with, but also something you can never fully forget.

I can still sometimes feel the spikes that were driven into me, but distantly, around the edges where the scar tissue grew to fill the latticework of grief.  As you might feel the shadows of the pins that put your leg back together, or the echo of the holes drilled into your skull to seat the halo brace.

We went to visit her grave this afternoon.  It was our first time back since last year’s memorial visit.  I’d thought of going from time to time in the intervening year, and resisted.  I’m not entirely certain why, but it felt like the right decision.  Not the decision I wanted to make, but the right one.

We were astonished to find that the artificial flowers and rainbow spinner placed there last year were still in place, faded and worn.  The groundskeepers had carefully mowed around them.  Perhaps that’s why the small Rainbow Dash toy was still there, still nestled against the top edge of the marker.  It, too, was faded from the year of sun and rain and ice, but still had the same jaunty pose and smiling face.

It reminded me of Rebecca, and I smiled a little.

I noticed dirt had settled into some of the letters, and resolved to return another day to clean them out.  Maybe polish the granite face a bit, to see if I could restore some of its initial luster.  Nothing I could do would preserve that forever; the slow decay of time and weather never pauses, not even in deference to the memory of a little girl who lived too short a life, no matter how fully she lived it.

In the long run, the marker will be worn smooth, settling through a long period of becoming harder and harder to read until eventually, it fades completely from understanding.  That can’t be avoided, but it can be postponed a little bit.  As long as I’m here and able, I can put in a little periodic effort to undo some of the damage done.  Put things partly right.  It might seem futile, but sometimes small acts in the face of futility is the best you can do.

You don’t get over it.  But you get used to it.


One Thousand Days

Published 3 years, 5 months past

It has been one thousand days since our daughter took her last breath.

I don’t know if it’s a cruel irony or a fortunate happenstance that this coincides with an upward adjustment in my antidepression medication.  It was necessary, because I was losing the will to do anything but the bare necessary minimum to function.  Now I can actually initiate conversation, and see life as something other than a state to be passively endured.  But the surge in serotonin reuptake inhibitors has also distanced me from grief.

I can feel, distantly, the despair that accompanies this milestone and its root cause.  I can feel, distantly, the instinct that I should bring that despair closer, to mourn a little more and honor Rebecca’s memory. It stays on the horizon of my awareness, something to be noticed when my gaze happens to turn that direction.  Not more.

I can feel, distantly, the conviction that this is abnormal and should be unacceptable.  Maybe that’s true.  Maybe it isn’t.

Instead I remember the face of my daughter, and the aura of a smile suffuses my heart.

I still miss her.  I still, from time to time, wonder how I managed to get this far in the wake of so shattering a loss.  I honestly didn’t think I’d have the strength.  Maybe I was born with it.  Maybe it’s paroxetine.

I don’t know how I’ll feel toward the end of the month, when I reach 210 days, and I guess in some ways it doesn’t matter.  The day will come, the day will go, and it will be whatever it is.

Very much like a life.


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