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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

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

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

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.

Passages

For a number of reasons, I’ve been thinking a lot recently about the two and a half months between Rebecca’s second tumor being discovered and her death.

I remember the looming senses of dread and paralyzing horror, which we shoved down as much as possible in order to get through each day.  Partly it was for the kids, all of them, to give them as much stability as we could in a profoundly destabilizing time.  Partly it was for everyone around us, who looked to us as much as they looked out for us.  And partly it was for ourselves.  Faced with the unceasing sense that nothing made sense, that the world was nothing like what we’d hoped or believed, we had to find ways to get out of bed each day and move forward.

Time was precious, and time was the enemy.  As the quite literal deadline approached, we would find ourselves looking for ways to just stop time, to freeze the moments a bit longer, somehow.  To hold short of the final day, to stretch out the time we’d have with her.  But we kept being carried toward the future at one second per second, as if slowly, slowly dragged by a monstrous grip and only being able to look around to focus on what glints of beauty we could before finally being consumed.

And then the day came, and we lived through it while our daughter did not.

If you’re a parent, then you know the feeling of being bound to your child’s being.  When they’re sick, you feel their fever in your own body, even if no thermometer could register it.  When they cough, your throat seizes with theirs.  When they pause between breaths, you pause too, holding yourself in perfect stillness, not drawing in your next breath until they do.

But when their breathing stops forever, you keep breathing, and can never quite figure out how.  Or why.

The same inexorable passage of time that dragged you to the moment your child died keeps dragging you on past it, away from the last time you held them, the last time they smiled at you, the last time they said your name or that they loved you or that they wanted another popsicle or another kiss or another bedtime story.  The last time their eyes were open for you to peer into, and see their spark.

The numb shock of all those absences perverts the world in profound ways.  You can barely comprehend that your life continues, let alone what’s happening around you.  It’s almost impossible to understand why the world continues at all.  There seems no point to it.  You can find your way past that in moments, focused on loved ones like surviving children, but then those moment pass and you stand up and look at the world as if it’s a soap-bubble illusion that will pop and vanish at any moment.

And sometimes, you numbly reach out, one finger extended, waiting for the moment you finally touch the bubble.

Other times, your shock gives way to flashes of rage, angry with the world for continuing as if nothing had happened, as if the clocks should not have been stopped and the mocking facade not torn apart and burned to ash.  Angry with yourself for not finding a better timeline.  Angry with existence itself.

I remember the moment I realized that pediatric hospitals and the people within them remain unburnt and unshot by grieving parents, and regained an iota of faith in humanity.  It didn’t matter that Rebecca had died of biology run amok, and the people in her oncology wards had done everything they thought was right in an attempt to keep her alive.  The rage of grief obliterates all hope of rationality, and seeks only to inflict the same pain it feels on whatever targets it seizes on.  When Michael Brown’s father shouted to burn everything down, a month or so later, I nodded in bleak recognition.

I can say that the rage can fade over time.  I’m sure some people take it in, nurture it, stoke it, burning it for warmth in the cold hollow where their child’s love used to be.  Using it for fuel, just to keep going.  But it’s also possible to let it go, one way or another, through whatever slow mechanisms of healing can be found.

Although I do wonder how I will react if I ever run into the doctors at the grocery store, or at the airport.  Perhaps there will be a sad reconnection.  Or perhaps I will simply turn and walk away, stiff and silent.  I honestly don’t know.  I hope, most of the time, that it’s the first one.

But the numbness, the pervasive sense of disconnect and artifice—those may have receded somewhat, but they have never left.  I read recently that research shows that the worst period of hopelessness and despair in grieving parents often comes two to three years after their child’s death, which for us is right now, right as our remaining children pass significant life milestones: Carolyn passing out of childhood, and Joshua becoming older than Rebecca.

A world where a youngest child can become older than their sibling can never, ever make sense.  Time seems illusory, and there is a corner of my mind that is always looking for a way to go back, to unwind the clock and undo the changes, to go back to when things were right and find a way to stop them ever becoming wrong.

But I can’t.  There is no way back, just as there is no way to skip forward.  I can only be dragged forward at one second per second, and look around whenever I can rouse myself to find what glints of beauty there may be.  There can be many, if I look in the right places, and I try to do so.  It does nothing to slow the dragging, but it can sometimes ease the grip.

Bits of the Past

I sat digging through the map built by GrandPerspective, showing me what was chewing up 720GB of my 750GB SSD.  I already knew my iPhoto Library was the main culprit, consuming just over a third of the total volume, but surely there were other places I was wasting space.  And there were: old software installers, virtual machines I had long since ceased to need, movies I’d ripped for watching on trips and never gotten around to dumping afterward, years-old Keynote files that I’d never gotten around to compressing.  I dealt with the most obvious offenders, one way or another, and then rescanned the volume.

A set of blocks popped up near the middle of the new map, a cluster I’d not noticed before, even though they were clearly somewhat sizable.  I moused over to see what they were.

They were CD-R master images.

Images of my daughter’s medical records.

Of her MRIs.

Somewhere in there, her final brain scans, the ones where the doctors did not even bother to count the emerging tumors, there were so many.

There’s enough data in there to recreate 3D models of her brain as it turned on itself.  Enough to reconstruct the cartography of her death.

I should just delete it.  Keeping the information is pointless now, when it cannot save her, a reminder of futility and helplessness.  It’s worse than useless—because if a treatment is one day discovered, the data in these files could torture us with the certainty that her life could have been saved, if only it had started later.  Better to not know, and eke out an existence in the spare shelter of ignorance.

I’m not sure I can delete it.  No matter how horrifying the images and records might fundamentally be, they feel like pieces of her, tiny bits of her life and death.  That erasure of data would feel like an erasure of history.  Like a betrayal.  Even to shunt them from my primary machine to some sort of backup storage would feel the same as I did when we carefully packed all of her favorite toys and kindergarten drawings into a box, and stored it away, out of sight but never out of perception.

Perhaps I might feel differently if I hadn’t been missing her so keenly the past few weeks.  There doesn’t seem to be a specific reason for this, unless it’s the beginning of this specific school year.  We’ve all been feeling it, in our own ways.  A few days ago, in the middle of a weekend afternoon, the family was at home and just being a family when I suddenly felt her absence like a spiky, sickly, impossible hole in the center of the world.  It was as sharp and present as the rush of first love, very nearly tangible and visible.

I look at these files, knowing that there are no rational reasons to keep them and many reasons—rational or otherwise—to let them go.  I envision erasing them, and I can’t.  All these jagged bits of the past, which do not cling to me; rather, I cling to them, senselessly, hopelessly, afraid to look at them but afraid to let go.  Perhaps I believe that with enough of these tiny memories, these shards of her life and death, I can cobble together a wall that will shut out the void her absence tore open.

Just enough to keep functioning, for a little while longer.

Which is, I sometimes think, the worst betrayal of all.

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.

August 2017
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