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Bittersweet

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

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

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

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

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

Bittersweet.

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

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

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

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

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

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

Between the Rain and the Sun

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

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

“I know,” I said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two years.  Two rainbows.

We love you, Little Spark.  We miss you.

The Face of My Daughter

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 Guilt I Carry

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

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

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

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

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

He nodded, still looking at me intently.

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

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

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

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

2010-01-xx

Father and daughter

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

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

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

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

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

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

But she does not.

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

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

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

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

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

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

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

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

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

Untitled

If you do something you love for long enough, it gets into your bones.  But more than that, the things adjacent to it do as well.

Since I got started on the web, very nearly 22 years ago now, I’ve never really seen myself as a designer.  Granted, I did some visual design in the early days, because anyone who set up a web site back then had to be the designer: there was nobody else.  No graphic designers would deign to look at the web, and no “web designers” yet existed.  We were Web Masters because we had to be, drawing buttons and laying out content along with writing code and doing UX and UI and IA and everything else.

So I did design when I had to, but I always knew I wasn’t a capital-D Designer.  I knew this in the same way I knew I was not a boulder nor an odor: it wasn’t a failing or even a lack, but just what was true and even unremarkable.  I was a code monkey who knew his way around Photoshop and could mimic what he saw around him decently enough, but I didn’t have the creative vision or training or, really, inclination to generate my own, unique work.

As we passed out of that epoch of the web, I was more than content to stop trying to design and instead be an enabler of design.  My efforts to teach HTML and CSS had twinned, helical aims: to help anyone who wanted to create a web site share their thoughts, and to help any designer who wanted to create a visual effect share their vision.  I was a technical author, a developer, a sometime observer of design, but never a Designer.  I knew Designers by then, and I knew they possessed a skill and focus I did not.

Which was okay.  After all, I possessed a skill and focus they did not.  Our work was complementary.

What I didn’t realize was that, over all those years, as the knowledge I shared seeped into their bones and became second nature, the same thing was happening in reverse.

For the past few months, I’ve been managing a design project, getting a ton of help from Jason Santa Maria; but I’ve also been the annoying client, making unreasonable demands of everyone involved.  I insisted on changes of direction partway through, and coped with changes of understanding at other points in the process.  I refused to listen to reason at one point, and yielded to reality at another.  For most of it, I compared font faces and sizing, trying to decide which I liked best, telling Jason I wished I could have a little of option A, a little of option B, a dash of option C, struggling to put into words what I could almost see.

Among my friends, I’m vaguely infamous for not being able to tell, at a glance, the difference between Helvetica and Arial.  I’ve seen the detailed analyses of the two, and if I had the exact same run of text in each face, sitting side by side, I could probably do a credible job of figuring out which was which, but give me a standalone block of sans-serif text in Ariatica or Helvetial and my odds of knowing which it is are literally no better than a coin flip.

And yet, there I was, staring at the same layout set in various font faces, feeling the sense of each, obsessed with spacing and intervals and kerning, examining which had the best italics while trying to decide if italics should even be used, if their use conveyed the right message.  I scrutinized the spacing between blocks of text, the alignment of fragments of information, the rhythm of the entire piece, every bit of content.  It wasn’t enough that it be passable, or decent, or even good; it had to be right.  I focused on all the details as well as the overall picture with a will and intensity I had never felt before.

It wasn’t easy.  I massaged my temples as the stress of needing to make exactly the right choice overwhelmed me; I paced around my office, glaring at the alternatives on the monitor every time I passed by; I felt tears of frustration rise as I ran into yet another setback and knew that the final result would not be everything I had originally wanted it to be.  I stood in someone else’s office and rode herd on their archaic software setup, literally telling them where and how many times to click, because that’s what was necessary to get the job done properly.  I wrote and rewrote emails to the various parties in the project, masking my battered spirit as best I could while still being clear about where things stood and where I wanted them to go.

Not, as I say, by myself: Jason was invaluable to getting me off to the right start, keeping me on the right track, and helping me through the setbacks.  I doubt I could have done a tenth as well without him.  But as we progressed, I increasingly felt like I knew what his answers to my questions would be.  My inexperience and fear of error and just plain fear meant I kept checking in with him, but with every iteration, I felt more confident that I already knew the right answers.  In a lot of cases, I made the changes I was already sure he would make, and Jason’s feedback confirmed that I had done right.

Over two decades, I had slowly, unwittingly absorbed everything I needed for this project.  It had seeped into me, creeping out of a thousand Keynote slides and a million words, written and spoken, from my friends and their friends and all the people they looked up to and quoted.

Gradually, I had become a capital-D Designer.  I had a very specific intent to render, and with help and focus, I made the end product as reflective of my intent as possible.  I knew when the design felt wrong, but more importantly, I knew when the design felt right.  And I could see, at first with Jason’s help but increasingly on my own, how to get from one to the other.

This morning, the result was unveiled—literally unveiled, ritually, at the direction of our congregation’s rabbi.  A block of sparkling silver-blue granite carved with a few words of English and Hebrew.  A compact arrangement of text bearing more emotion and meaning than anything I have ever done, horrifying and beautiful, set flush into the earth of Cleveland Heights, where similar markers will one day be set for me and for my wife.

Everything I absorbed over all those years, everything I learned by choice or by chance, and most of all the help I received from everyone who’d ever shared their knowledge and insights with me, all made that possible.  Made me a Designer.

Thank you all.

This article was originally published at The Pastry Box Project on 7 June 2015.

Afterimage

I remember her last breaths.
I remember how she methodically ate every last scrap of frosting from her birthday cupcake.
I remember her eating Sasa fries and looking with affection at little Joey, who’d come to her last meal.
I remember the last sentence she ever spoke.
I remember her singing and blowing out the candles at her sixth birthday party.
I remember her many laughs—gleeful with mischief, wild with delight, brimming with amusement.
I remember how her whole body shook when she laughed.
I remember how ticklish she was, and how much she loved being tickled.
I remember when she had finally grown enough that her fingers could interlace with mine when we held hands.
I remember the quiver of her lip as we told her there was no special medicine.
I remember her screaming “YES!!!” when we told her we’d bought season passes to Cedar Point.
I remember how she would oppose and defy us even when it cost her something she wanted.
I remember how she insisted on doing everything herself, insisting she needed no help even when she clearly did.
I remember how she would respond to my jokes in a flat, unimpressed voice: “Seriously?”
I remember how she’d cheat at every game and laugh about it as she did.
I remember playing air hockey with her.
I remember how much she loved to wear sparkly princess dresses.
I remember snowflakes stuck in her curly hair.
I remember her sticking her tongue out at me.
I remember her learning to read and write her name.
I remember how she nearly always threw up a hand to block me taking pictures of her.
I remember her painting her own nails for the first time.
I remember how much she loved to have her face painted.
I remember her squealing with delight when we told the kids we were going to Disney World.
I remember sitting on the porch roof with her and her siblings, watching the clouds and waving to people on the sidewalk below.
I remember her arms locked tight around my neck in a squeezy hug.
I remember her snuggled into my lap as I read her a book.
I remember her huddled against me and flinching every time a firework burst.
I remember how she would nod her head with studied nonchalance and say in an offhand, half-dismissive tone, “Yeah, cool, Dad.”
I remember how much she loved and looked up to and emulated her big sister.
I remember how much she loved and played with and protected her little brother.
I remember how she loved watermelon so much she’d eat half a melon by herself and then say she was too full for dinner.
I remember how she danced through life at every turn.
I remember her unbounded joy.
I remember how her body strained against my arms when I had to restrain her, to keep her from hitting, screaming her defiance until I wore her down.
I remember how she jumped waves at the beach, flinging herself into the air with no thought of how she would land, no concern except to jump over the crest as high as possible.
I remember her shouting “Watch me!” before jumping from the pool’s edge to her mother’s arms.
I remember how much she loved to splash in any pool or a puddle or any body of water.
I remember her playing in a big box of styrofoam packing peanuts, shrieking with delight.
I remember how she would grab my thumbs and climb up my front until she was standing on my shoulders, giggling all the way.
I remember her nestled into a sling on her mother’s back, peeking out at the world with a sly grin.
I remember how she used to carefully stick a raspberry on each fingertip before eating them one at a time, again and again.
I remember her feeding a giraffe.
I remember how much she loved coffee.
I remember her throwing rings at the bottles on the boardwalk.
I remember her trying to wash the dishes when she was barely tall enough to stand on a stepstool and see into the sink.
I remember her sitting in the car at the sledding hill, warming her hands against the air grating and waiting for us to be done.
I remember how she always wanted to drive the car.
I remember how she waited for her first birthday party to take her first steps, so she’d have as big an audience as possible.
I remember how she would call to her sister: “Lerlyn! Ah ooo?”
I remember her sister stamping the papers that finalized her adoption.
I remember the gleam in her two-week-old eyes that made me call her “Little Spark”.
I remember how wide and clear her big brown eyes always were.
I remember the first time I ever saw her, asleep in a car seat in a trailer home in a park in the middle of a cornfield in the middle of Ohio.
I remember how joyful I was when I picked her up and nestled her in my arms.
I remember how scared I was.
I remember.

Spring Air

I’m sitting on the love seat on my front porch.  It’s a beautiful spring day, the blue sky flecked with a few wispy clouds—certainly not enough to dim the sun’s warmth even when they do drift in front of it.  There’s a slight breeze stirring the clean June air, almost but not quite cool enough in the shade to call for a sweatshirt.

The feel of the air on my skin, the smell of spring, the sounds of the neighborhood, the sun and temperature, all exactly the same as they were one year ago today, and the combined sense of parallel and divergence is intense.

We had just started our meeting with the rabbi, upstairs in the library, beginning to discuss the details of the memorial service we knew we could not avoid, when our friends shouted up in panicked voices that something was wrong with Rebecca.  By the time we reached the porch, she was almost unconscious.  There had been a seizure, a small one, but we assumed it was the first of many.  We called the hospice nurse and then Kat and I sat to either side of her on the love seat, snuggling in close.  For more than an hour, Rebecca seemed to be asleep, and yet was, at some level, still aware.  When Kat tried to shift her arm, Rebecca reached up, never even opening her eyes, to pull it back around her shoulders.

So we kept talking to her, telling her how much we loved her, how much everyone loved her, going through all their names again and again.  Telling her stories about herself, favorite memories of hers and ours.  Telling her we were with her all the way to end, all of us together.  Telling her that she could stop fighting.  Telling her she could go.

She never stirred, except to make sure Kat’s arm stayed around her.  And after an hour or two, even that ceased.  Her body was completely limp, her breath steady but slow and getting slower.

We were sure she was going to die that sunny spring afternoon, in the shade of our porch, surrounded by our love, just shy of turning six.

And then, late in the afternoon, she suddenly stirred and sat up, her eyes open.  “Hey,” I said to her, and I remember how my voice was filled with wonder and surprise.  “Hey there, Little Spark.  Did you take a nap?”

She nodded.

“Would you like to go to dinner?”

Another nod.  She had already spoken her last words, hours before.

“What would you like?  Sasa fries?”

Nod.  This one might have been a tiny bit more energetic.

So we and some of those who had assembled headed to Rebecca’s favorite restaurant in the world, owned by our friends, the place every one of our kids had come for their first meal outside of the house.  Rebecca had her favorite meal: a Japanese cream soda, some miso soup with extra tofu, and the Sasa fries.  She was able to carefully drink the soda from a sake cup by herself, and eat the fries, slowly, one at a time.  The soup required some assistance.

Back home that evening, we got birthday cupcakes ready.  It wasn’t her birthday until the next day, June 7th, but all day we had been doing birthday things—favorite breakfast, dinner at Sasa, cupcakes—because we were afraid she wouldn’t be there the next day, and we figured that if she was, we’d just do it all again.  Homemade cinnamon rolls every morning, Sasa and cupcakes every night, for however many days were left.

There were none.

I came into the living room to find Rebecca and Carolyn asleep, snuggled against each other on the sofa.  I kept silent and just watched them sleep, experiencing a bittersweetness beyond any I had imagined.

Then the cupcakes were brought in, and Rebecca woke up to see the lit candle in hers and to have us sing her “Happy Birthday”.  There was no expression on her face as she stared at the flame, no flicker of emotion.  She just stared as we blew out the flame for her, her face like a mask that hid our daughter.

But she ate the whole cupcake, and every bit of frosting, slowly and methodically scraping every last scrap off the plate and licking it from her fingers.  When it was done, I asked if she was ready for bed, and at her nod led her to the stairs.  She put a hand on the banister and walked up the stairs on her own, holding my hand without actually needing it.

I felt a small sliver of hope at that, until I realized that throughout all the frosting and stair-climbing, the teeth-brushing and changing for bed, being snuggled under the covers, her expression still never changed.  No joy, no excitement, no annoyance, no anger.  Nothing.

I was so incredibly proud of her, though.  She was so exhausted, and yet she insisted on doing as much as she could by herself.  The mask of her face may have hidden her emotions, but her fire was still as clear as ever.  I was humbled beyond measure.

Kat read Rebecca her favorite stories for the last time.

Tomorrow will be the first anniversary of her death, the day she would have turned seven years old.  I sit on the porch, and all my senses tell me that day has come again.  It is so incredibly alike, and yet so different, sitting here on the love seat in the cool June breeze without my Little Spark.

The Beginning of the End

One year ago today, it had been two days since Rebecca’s birthday party, held jointly with her best friend Ruthie, who not only shared her initials but was also four days older than her.  We had celebrated them both with a donut van and a balloon maker and the Rocket Car, which Rebecca rode at least four times.  It was completely over the top, but she was still with us, after ten months of treatments, even with the new tumor in her head, and that was worth celebrating.  Kat and I also decided to go all-out because we didn’t believe she’d ever have another birthday party.  A CT scan a few weeks before had indicated that the tumor had stopped growing, but each day she was getting more and more tired.

Except for her great big birthday party.  She was in better spirits than she had been for weeks, just for that day.  People commented on how much better she seemed, and when they confidently asserted that of course she would beat this, we smiled and didn’t say what we really thought.  Kat and I would occasionally share a glance, as people poured their optimism over us: Do they not understand what’s happening here?  Sharing our secret language of fear and pain, the way other couples share a secret language of love.


The day after the party, Rebecca was more tired than ever, barely speaking for hours at a time and increasingly distant.  So now we sat in a waiting room in the Children’s Hospital of Pittsburgh, our study site, waiting with two of our best friends for the results from her latest MRI, wondering if we were being paranoid or prescient, not wanting to know.

The lead doctor came into the examination room alone, clutching a folder to his chest like it was a life vest, and we knew.  He started to speak, but we interrupted, asking if Rebecca could go play with the Child Life counselor, because we knew.  Of course she could, and she did, heading off with the counselor to the play room, leaving our side for the last time.

“I don’t have good news,” the doctor said, wincing a little, apology in his voice.

We knew.

I remember only a few fragments of what he said.  “Significantly larger” and “many flare sites”.  I remember thinking that they hadn’t even bothered to count them, there were so many.  Tumors coming, everywhere, all throughout her brain, the brain that was already being slowly squeezed by the enormous tumor we thought had been stopped.  All our dreams of extended time with her, of trying to find a way to roll back the runaway growth, shattered.

And then: “A few weeks at the most.”

We knew.

Our little girl, dying.  The end of hope.

“I’m so sorry, you guys.”

We knew.


As we drove away from the hospital, each of us sunken deep into our horror and despair, a torrential burst of rain hammered the roof of the van, overpowering the wipers even on high, all the while bathed in direct sunlight.  All the components for an incredible double or even triple rainbow—except the sun was too high in the sky.

Rebecca sat silent and still in the back seat, staring straight ahead, glowing in the rain-muted sunlight, never stirring even to ask where the rainbow was, let alone look around for it.

She had four days left to live.

August 2016
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