Posts in the Rebecca Category

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.

• Untitled was published on Sunday, June 7th, 2015.
• It was assigned to the Commentary, Design, Rebecca, and Writing categories.
• There have been no replies.

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.

• Afterimage was published on Sunday, June 7th, 2015.
• It was assigned to the Personal and Rebecca categories.
• There have been five replies.

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.

• Spring Air was published on Saturday, June 6th, 2015.
• It was assigned to the Rebecca category.
• There have been thirteen replies.

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.

• The Beginning of the End was published on Wednesday, June 3rd, 2015.
• It was assigned to the Cancer and Rebecca categories.
• There have been six replies.

It was the end-of-the-school-year picnic at the local elementary school, and we were invited.  Not because we have any students there right now, but because it was Rebecca’s school, and the PTA was set to dedicate a Little Free Library in honor of her and Trishka Tantanella-Holcomb, another student who died in 2014, a few months before Rebecca.

There were some words spoken, readings read, and then the Library unveiled.  I shook the hand of Trishka’s mother, expressing my condolences, and then I found myself locked in an embrace with Trishka’s father, taller than me, his breath hitching.

“I know,” I said.  “I know.”

He sobbed in my ear, quietly, despondently.  We stood back a step.

“Every day,” I said, looking into his eyes, my throat tight.

He shakily held up a finger.  “Not… not one day,” he ground out.

We turned to look at the new Library, adorned with the names of our little girls, hands on each other’s shoulders.  Kids and adults alike were putting in books they had brought to contribute, one after another.  Someone decided they’d had enough of the raucous pile of books, and started standing them on their ends, sorted by size.  I could imagine Rebecca saying, “Aw, boo!” in the casual, lighthearted way she liked to say it.  Expressing her disapproval, but without any heat to it.

A storm was moving in, so the crowd scattered back to their homes as a few of us quickly broke down the tables and sound equipment to move them inside.  The storm arrived just as we finished, filling the now-empty playground with curtains of rain, racing with the wind.  A minor lake immediately began to form as the playground’s storm drain was overwhelmed by the outpouring.  I thought about the video Kat had taken of Rebecca and her best friend Ruthie playing in another such lake, a little more than a year before, splashing and laughing as they poured water out of their rain boots.

As quickly as it had broken, the storm was over, the rain trailing off to a minor sprinkle.  I looked at the clouds to the west, realized what was about to happen, and fished my iPhone out of my pocket as I turned around.

“Get the kids outside,” I told Kat, who’d gone home with them ahead of the storm.  “There’s going to be a rainbow.”

I waited.  But not for long.  It slowly coalesced over the school, the first full-spectrum, full-arc rainbow I’d seen since a few months before Rebecca’s death.

She loved rainbows.

I wish so many things, all of them pointlessly, but one of the most piercing is that I wish I’d thought to make a rainbow for her while there was still time.  All it would have taken was a late afternoon and a garden hose, sprayed from the porch roof; all it would have taken was for me to break free of myself just long enough to think of it.  Just one more rainbow, just for her, just to see her eyes widen and her mouth arc upward in delight.

• Into Each Life was published on Sunday, May 31st, 2015.
• It was assigned to the Parenting and Rebecca categories.
• There have been four replies.

Children charged through our house, laughing and shrieking and calling to each other as their games shifted fluidly from one imaginative burst to another.  In the dining room, their adults sat around the table and talked, benignly ignoring the chaos around them.  Earlier, there had been a group photo of the kids and rides in a crazily-painted convertible.

I sat in the kitchen window seat, my feet braced against the middle frame, staring out into the back yard.  The afternoon was chilly and bright but not sunny, as befits March in Cleveland, but I didn’t really see it.  I only know what the weather was like because I’ve gone back to look at the photos of that day.  Whatever light was entering my eyes and falling on my retinas wasn’t leaving any impression in my brain; I was focused somewhere unseeable, trying not to think about the unthinkable.

A hand on my arm snapped me back.  Rebecca stood next to me, her expression clouded and frowning.

“Hey there, Little Spark.  What’s up?”

She climbed wordlessly into my lap and curled up against my chest, her back to the window.  She rested a cheek in a cupped palm that pressed on my sternum, looking unseeingly into the kitchen, still pensive.  The chaos was downstairs in the play room now, distant and muted.  I circled my arms around her curled frame, gently pressing her to me, listening to and feeling her breath draw in and out.

I knew she was upset, and I knew just as certainly that she wanted to talk about it.  I was far less certain that I wanted to hear it, but this wasn’t about me.  It never had been, and it was far less so now.

“What are you thinking, sweetie?” I asked after a few moments.

“I’m scared that my brain cancer won’t go away and I will get dead,” she quavered miserably.

Suddenly I was hugging her tightly, my face half-buried in the bright blue shmata she wore on her head, tears coursing from my eyes.

“Me too,” I choked out.  “I’m scared too, honey.  Mommy and I are both scared.  It’s okay to be scared.”

We wept quietly together, curled up on the window seat.

---

I had been crying a lot at that point.  Three nights before, after all the kids had gone to sleep, I had stumbled into Kat’s and my bedroom, collapsed on the bed, and sobbed without stopping for more than an hour.  At some points, I wept so intensely that Kat tried to get me to take medication to calm myself, afraid that I was about to literally choke to death on my own sorrow.  Part of me wanted that to happen.

Because earlier that day, we had been told that another tumor had emerged.  As soon as the doctors walked into the room, we knew from their body language that the news wasn’t good.  When they asked Rebecca if she would go play with the Child Life specialist while Mommy and Daddy talked to the doctors, we knew it was bad.  I felt the blood drain from my face as I reached out to take Kat’s hand in mine, both of us staring at the lead doctor and still trying to hope that it wasn’t as bad as we feared.

It was.

The previous August, the doctors in Philadelphia had told us the tumor was essentially completely removed, and that a long course of radiation and chemotherapy could, possibly, prevent a recurrence of the cancer that had almost killed our daughter.  They didn’t give odds.  They didn’t have too many assurances to give us, save one.  They could pretty well assure us that if the cancer came back, all we could do was watch Rebecca die.

Now it was March 20th, almost exactly seven months from the day she had first seized.  We had gotten her through multiple surgeries, two months of treatments in a city far from her home, and then weekly chemotherapy back home.  Holidays had come, her MRIs had been clear, we’d returned to a relative normalcy.  The nightmare had engulfed us, then receded.

Now it engulfed us again, more complete than ever.  For those seven months, I had held my fears in abeyance.  Now there was no dam to hold them back.

I lay in my bed, almost screaming my sorrow, choking and nearly convulsing, as I tried to cope with the certainty that our little girl was going to die soon, and there was no hope left.  Although she would ultimately prove me wrong, because of course she would, I tried to come to terms with my desolate conviction that Rebecca wouldn’t even graduate kindergarten, let alone turn six.

That night, I started to mourn my child’s death.

---

Within a minute or two, Rebecca was done crying and starting to get restless to rejoin the chaos.  I paused my own grief, wiped the tears from both our faces, and gave her kisses.  She smiled at me and climbed off my lap.

Five minutes later, she charged through the kitchen with her friends, the kids she’d shared a playgroup with since they were newborns, shrieking and laughing along with them, because to be five years old is to live completely in the moment.

They thundered onward, down the steps to the back hall and up the stairs to the sun room and on to the living room.  I listened to her bright, sunny voice echoing from across the house, drew in a deep breath, wiped away my tears, and resolved to live in the moment as much as I could.  For her, and for me.

---

That night, after the kids were asleep, Kat and I stood in the kitchen, cleaning and putting away the last few dishes left over from the play date.  We talked about the day, how much fun all the kids had had, and shared our mutual admiration of our friends, who had brought their children to play with our child, knowing how that would sharpen their kids’ pain when Rebecca’s death came.

“Thank you for letting me fill the house with people,” Kat said.  “I know it’s tough for you sometimes, having that much noise and activity.”

I shrugged.  It didn’t seem to matter.  Very little did, at that point.

“Do you understand why I wanted them all here today?” she asked.

“You were sitting shiva for her,” I heard myself say, distantly surprised by the words as they emerged.

“Yes,” she said quietly.  “How did you know?”

“I’ve known you for seventeen years now.”

“I was sitting shiva for her while she’s still alive.  How fucked up is that?”

I shook my head mutely.  Tears streaked both our faces.

---

In the year since that day, a year ago today, I’ve come to realize what an incredible gift it was for Rebecca.  To bring all those kids and adults who loved her so much into the house, all those people she’d known and loved all her too-short life — to give her a day of play and fun and craziness, the kind of craziness she loved, while she was still able to enjoy it — what better form of mourning could there be?

Rebecca knew, long before I did, possibly even before Kat did, why her friends were there.  She mourned the truth, and then had a fantastic day anyway.

I may have been far older than her, but she was far, far wiser than me.

• Playing Shiva was published on Monday, March 23rd, 2015.
• It was assigned to the Cancer and Rebecca categories.
• There have been eleven replies.

On March 15th, 2015, there will be a St. Baldrick’s Foundation fundraising event at the Cleveland Heights Community Center.  At last year’s event, Rebecca was there, running around and flipping out (in a good way) as her sister Carolyn shaved to raise money.  She gave a big hug to her kindergarten teacher, who had shown up to surprise her and had his head shaved as well.  She was, to all appearances, a totally normal and healthy kid, so full of life that many people there didn’t realize she was one of the honorees.

Four days later was the MRI that revealed the second tumor, the one that killed her two months later.

This year, Carolyn will not be shaving her head, though she is again captaining the team for her elementary school.  In her place, Rebecca’s best friends in the world — the kids from her infant playgroup, as well as her friend Ruth — will be cutting their hair or shaving their heads to raise money in Rebecca’s honor.  If you want to make a difference in their lives, as well as the lives of children who have or will one day have cancer, please consider donating to one or all of these brave kids:

• Everett B.
• Elizabeth K.
• Sean H.
• Ruth M.

Some of them took years to grow enough hair to comb, let alone braid.  And yet, even at their ages, they are willing to sacrifice that hair in order to do something positive.  We are so, so grateful to them all.

We are also very grateful to St. Baldrick’s for working with us over the past few months to establish The Rebecca Alison Meyer Fund for Pediatric Cancer Research.  This “Hero Fund” is specifically designed to fund promising research into the prevention of tumor reemergence, as well as glioblastoma research in general.  As we say on the Fund’s page:

We were told after [Rebecca’s] first tumor was biopsied that if another tumor appeared, all we could do was watch her die. There were no studies to try to prevent the reoccurrence of the tumor. Once it did recur, there were very limited study options, none of which were life saving — only life prolonging. This is typical of so many types of tumors.

You cannot imagine, unless you’ve lived it, what it’s like to know that your child has a rapidly deteriorating terminal condition about which nothing can be done.  There are no words to describe it.  “Helpless” doesn’t begin to come close.  We hope that Rebecca’s Fund can, in whatever way, however small, help even one family avoid that nightmare.  We hope it can help many, many families avoid it.

You can donate directly to Rebecca’s Fund if you prefer, but please note that all funds raised for the March 15th Cleveland Heights event will be counted as part Rebecca’s Fund.  So please, if you’re inclined to support the Fund, donate to one or all of Rebecca’s friends listed above, because donating to them means donating to the Fund as well.  Thank you.

• Big Little Heroes was published on Friday, March 6th, 2015.
• It was assigned to the Cancer and Rebecca categories.
• There have been no replies.

So many people who knew Rebecca told us how they had to hold back tears, watching the Super Bowl halftime show.  “I wish Rebecca could have seen it,” they say.  “When Katy Perry sang ‘Firework’, all I could think is how much Rebecca would have loved it.”

Rebecca loved Katy Perry songs, you see.  She loved to sing and dance to “Firework”, so much so that her sister Carolyn made it part of the medley she arranged and performed at Rebecca’s funeral.  And Rebecca loved to sing “Roar”, and pretty much anything from Katy Perry.  Even “Brave”, which is actually sung by Sara Bareilles, but when your terminally ill daughter tells you a song is by Katy Perry, then it’s by Katy Perry.

But all I can think is, I wish I could be so sure.

Because yes, five-year-old-going-on-six Rebecca loved Katy Perry, and Frozen, and hula hoops, and so many more things.  But by now she’d be six-and-two-thirds, and so much can change so fast at that age.  By now, maybe she’d have moved on to Taylor Swift, and Katy Perry would be so last year.  She might be done with Frozen, and instead be into Big Hero Six or The Emperor’s New Groove.

I know that she would be different by now, just as amazing as ever, but different.  Some enthusiasms would have given way to others; her interests would have shifted.  How, we don’t know.  Can never know.

Every day, she becomes a little more distant from us, a little less known.  A gulf slowly widens with the passing of time, and what she would be now becomes ever more uncertain.  We become estranged from our own daughter, not by hurtful words or actions, but by the merciless passage of time, by the choices she never got to make, the changes she never experienced.

I knew that this would come, but for a time I could ignore it.  A month or two after she died, I could still pretend that I knew how she would react, what she would think, how she would behave.  Even though I never knew that with any certainty.  She was never so predictable as that.  Never so static.

Now it’s been too long.

And it hurts, knowing that I can never know the girl she would be now, never know the girl she would have become, never know the woman she would have been.

I miss her, sometimes more than I ever thought possible, so much that I can physically feel the absence.  But sometimes I think what I miss more than the Rebecca I knew is the Rebecca I never got to know.

• The Widening Gulf was published on Sunday, February 15th, 2015.
• It was assigned to the Rebecca category.
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