Posts in the Rebecca Category

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.

• Half Life was published on Wednesday, June 7th, 2017.
• It was assigned to the Rebecca category.
• There have been thirteen replies.

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.

• One Thousand Days was published on Friday, March 3rd, 2017.
• It was assigned to the Personal and Rebecca categories.
• There have been fourteen replies.

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.

• Passages was published on Friday, January 20th, 2017.
• It was assigned to the Parenting and Rebecca categories.
• There have been six replies.

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.

• Bits of the Past was published on Wednesday, October 26th, 2016.
• It was assigned to the History and Rebecca categories.
• There have been five replies.

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.

• Bittersweet was published on Tuesday, August 23rd, 2016.
• It was assigned to the Joshua, Parenting, and Rebecca categories.
• There have been five replies.

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 rainbow.  She 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.

• Between the Rain and the Sun was published on Tuesday, June 7th, 2016.
• It was assigned to the Parenting, Personal, and Rebecca categories.
• There have been fifteen replies.

As Rebecca’s Boardwalk wound down, one of our friends came up to me to say goodbye.  “This was just great, such a tribute,” she said.  “I know it must have been a really hard day for you.”

Instead of replying directly, I thanked her for coming, because I didn’t know how to tell her that it hadn’t really been hard at all.  Not in the way she’d meant, anyway.

It was eighteen months ago today that, in the span of half a day, Rebecca turned six and died.  Although I have tried in various ways, there is really no way to express what that was like.  There is no way I have found to convey the feeling of saying goodbye to your child forever, nor of what it takes to tell her it’s okay to go.  Those who understand have done it themselves.  Those who haven’t, don’t, and I hope for their sakes they never do.

In the time since, I’ve devoted a lot of time and attention to grieving.  Just as Kat and I were with Rebecca’s last weeks, and with her cancer treatment, and as we have been with the raising of all our children, and in most of what we do in life, I have been — for lack of a better term — deeply mindful of my grieving.  I don’t mean to link it to the current fad of “mindfulness”, which I know next to nothing about.  I just mean that Kat and I always try to be present for the present, and keenly aware of the future.  Acting locally and thinking globally, temporally speaking.

What I’m really trying to say is that a couple of months ago, more or less, I realized that I had turned a corner.  The agony of immediate grief has passed.  When I think of Rebecca, and even of her death, it is not a knife in my heart and guts.  Sometimes it’s a dull ache, and sometimes it just…is.

And then sometimes, when I think of her, I think of the happy times and smile.  They are memories very much like those I have for Carolyn and Joshua, when I think back to a special day we shared, or a family trip, or a moment of accomplishment.  The sort of wistful, sweet, I remember-when smile that lightly touches the heart.  And if I then remember that there will be no more such moments, it is often felt as a simple fact of life, neutral in many ways.  I have, in a very real sense, accepted it.

I had imagined that I would one day be able to say this — in fact it was always a goal — but I expected it to take years.  I even wonder at times if I truly loved her, to have let go of agonizing grief so soon.  The rest of the time, though, I know that it is my love of her and her mother and her siblings — and more importantly, all their love of me — that has allowed this.

When I do grieve anew, it is usually for my other children, who must grow up without the sister they love so dearly.  But as Kat and I have showed them how to grieve, honestly and without shame or fear, now I hope to show them how to come to terms with it and find a kind of peace.

So yes, in my experience, time does heal wounds.  To heal is not to completely restore; I am not who I was and never will be.  That is always true, of course.  Every day makes each of us into someone new.  I changed irrevocably the day I first got married, and again the day I got divorced.  So too the day I married again, and the day Kat and I decided to become parents, and each time a child came into our lives.  And the day a child left us.

Deep wounds can weaken us, may even threaten our lives…and when they heal, scars remain.  This is the form of closure I have always sought: the stitching of a grievous wound, to let the ragged edges grow back together, slowly closing up to knit new tissue.  The mark is there, and will be until I finally die — but a mark is not an impediment to living.  Our scars are a part of us, and to deny them is to deny a piece of ourselves.  I know, because I tried.  For a time, I forgot the face of my daughter.  I remember it now.

Of course I still miss her, and of course some days are not so graceful as all this might sound.  Some days my throat still tightens with grief until my breath grows short.  There are not many such days, though, and fewer as time goes on.  Bit by bit, day by day, the pain eases and the fondness returns.  My memories of Rebecca are tinged more with affection than sorrow.

As she would want, really.  Her six-year-old ego, selfish in its unselfish way, would have wanted me to be sad that she went away; but her six-year-old spark, so bright and merry, would have wanted me to stop crying.  And sometimes, when I do feel the edge of grief’s blade come close, I can hear her say, as she did whenever she wanted my attention and wasn’t getting it, in her affectionately amused, slightly exasperated, wryly matter-of-fact tone: “Daddy, you’re getting distracted.”

And then I smile.

• The Face of My Daughter was published on Monday, December 7th, 2015.
• It was assigned to the Rebecca category.
• There have been eight replies.

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

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

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

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

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

He nodded, still looking at me intently.

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

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

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

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

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

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

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

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

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

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

But she does not.

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

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

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

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

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

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

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

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

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

• The Guilt I Carry was published on Thursday, June 18th, 2015.
• It was assigned to the Parenting, Rebecca, and Writing categories.
• There have been no replies.