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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.

Into Each Life

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.

Rebecca’s Gift

Yesterday was the eleven-month anniversary of Rebecca’s death.  I’ve been trying not to focus on those monthly anniversaries, but this one stuck out for me.  Because in a month—thirty days, as I write this—it will be both the first anniversary of her death, and the day she would have turned seven.

I haven’t really written directly about the grieving process since late March, because it’s been in a stable pattern and nothing has really changed.  Kat and I still grapple on occasion with the question of whether this is a nightmare or a post-dream.  Are we having a nightmare that our daughter died, and we’ll finally wake up; or did we dream that we had a middle daughter, and have since woken up?  Of course neither is true.  She came to us, and grew, and died.  It’s just so hard to come to peace or acceptance or even just comprehension that the mind hunts for an escape hatch, some way of making some part of it not true.

Don’t take this as intimation that we spend every waking second in agony, paralyzed by grief and shock.  Those periods of irreality and escape-seeking are just that: periods of time.  Not all the time.  Most of each day, I function normally, and honestly don’t think about what happened.  There’s work to do, projects to start or complete, errands to run, books to read, kids to raise.  These things all take precedence in their own ways, and Kat and I are both committed to being as present as possible in our lives.  We don’t deny what happened, but we don’t fetishize it, either.  Life cannot stop because a life stopped.  It’s not how either of us could live, even for ourselves, and we have more than ourselves to consider.

Some days are more difficult than others, of course, but for whom is that not true?  We all get through life one day at a time.

One of the things that has really helped us as a family, and Kat and me as parents, has been to go on family vacations.  Some went better than others. A short trip we took to Amish Country in late July of 2014 was probably too soon.  Our annual August trip to New Jersey, coming as it did on the first anniversary of Rebecca falling ill, was both helpful and difficult; and maybe the difficulty was part of what made it helpful.  The trip we took to Gatlinburg/Pigeon Forge just after Christmas was just about right, in terms of timing, and was definitely a huge boost to us emotionally.

These escapes from the normal routine of home and calendar, where we could just concentrate on being together and doing things together and not having any particular demands on us, were incredibly helpful to the healing process.  Friends told us after our trips that we seemed more relaxed, less haunted.  The time we spent together helped us figure out how to be a new family, without all the distractions and chores of everyday life.

The other thing that Kat and I in particular appreciated about our trips is how we could make Carolyn and Joshua the center of the experience.  When Rebecca was being treated, and then when she was dying, we did what we could to make Carolyn and Joshua feel not marginalized, but there was no way to avoid it.  Mommy and Daddy went on a two-month trip to Philadelphia with Rebecca, not them.  We went with her to the hospital, not them.  We worried about her temperature and bruising level and energy, not theirs.  People made banners and posters and cards and healing stars for Rebecca, not them.  Friends and family came to see us because of Rebecca’s cancer, not because of them.  Make-A-Wish granted Rebecca’s wish, not theirs.  People came to pay respects to the memory of Rebecca’s life, not the ongoing reality of their lives.

How could they not feel marginalized?

Kat and I worried about this all the way through, guided to some degree by the insights I had from my own childhood, and tried to counter it as best we could.  Kat went on theater dates with Carolyn, and lunch dates with Joshua.  I played games they liked, and took them to parties.  Regardless, they knew what weighed most on our minds, and we never tried to deceive them or tell them they were wrong.

But those trips, after Rebecca was dead, could be all about them.  They were central again.  We went to the Jersey shore, and did old favorite activities as well as tried new things.  We went to Disney and granted their wishes as best we could, getting them to special character events and letting them stay up to watch the fireworks.  We took them to the museums and shops and ski slopes in Gatlinburg and Pigeon Forge, picking the things they wanted to try out.  We made them feel special again.

You can’t imagine how great a gift that is, both for them and for us, unless you’ve been through this yourself.

That’s a gift that Kat and our good friend Karla want to give to families who are going through this.

That’s why, a week ago today, they launched Rebecca’s Gift, a 501(c)(3) non-profit dedicated to providing healing family vacations after the death of a child.  Rebecca’s Gift is accepting donations in support of that mission, and has its first fundraiser scheduled for this November.

Their goal is to raise enough money to send two or three families on healing trips in the summer of 2016; that is, summer of next year.  At first, the scope of Rebecca’s Gift will be narrow by necessity: eligible families will be those who had a child die of cancer between six and 24 months before the trip is taken, and who have surviving children age 18 or younger.  Rebecca’s Gift will work with partner organizations to identify families who need this support.  They don’t plan to take on anything more ambitious than that to start, in order to make sure those first trips are everything they can be.

As for the future, we’ll see.  The hope is that this will one day be open to more than a few families per year, open to families whose child died from something other than cancer, and perhaps open to parents who have no other children.  If Rebecca’s Gift grows strong enough to do those things, then I feel confident they will.  Those are all questions for the future.  For now, they’re focused on making sure they can help families who need the same time away to reconnect, rebuild, and relax.  Even if it’s just for a few days.

If you can help, I know your support will be welcome.

Warning Hashflags

Over the weekend, I published “Time and Emotion” on The Pastry Box, in which I pondered the way we’re creating the data that the data-miners of the future will use to (literally) thoughtlessly construct emotional minefields—if we don’t work to turn away from that outcome.

The way I introduced the topic was by noting the calendar coincidence of the Star Wars-themed tradition of “May the Fourth be with you” and the anniversary of the Kent State shootings in 1970, and how I observe the latter while most of the internet celebrates the former: by tweeting some song lyrics with a relevant hashtag, #maythe4th.  I did as I said I would…and Twitter blindly added a layer of commentary with a very simple little content filter.  On and in the official Twitter app, a little Stormtrooper helmet was inserted after the hashtag #maythe4th.

So let’s review: I tweeted in remembrance of a group of National Guardsmen firing into a crowd of college students, wounding nine and killing four.  After the date hashtag, there appeared a Stormtrooper icon.  To someone who came into it cold, that could easily read as a particularly tasteless joke-slash-attack, equating the Guardsmen with a Nazi paramilitary group by way of Star Wars reference.  While some might agree with that characterization, it was not my intent.  The meaning of what I wrote was altered by an unthinking algorithm.  It imposed on me a rhetorical position that I do not hold.

In a like vein, Thijs Reijgersberg pointed out that May 4th is Remembrance of the Dead Day in the Netherlands, an occasion to honor those who died in conflict since the outbreak of World War II.  He did so on Twitter, using the same hashtag I had, and again got a Stormtrooper helmet inserted into his tweet.  A Stormtrooper as part of a tweet about the Dutch remembrance of their war dead from World War II on.  That’s…troublesome.

Michael Wiik, following on our observations, took it all one step further by tweeting a number of historical events collected from Wikipedia.  I know several of my British chums would heartily agree with the 1979 tweet’s added layer of commentary, but there are others who might well feel enraged and disgusted.  That could include someone who tweets about the election in celebration, the way people sometimes do about their heroes.

But what about appending a Stormtrooper helment to an observance of the liberation of the Neuengamme concentration camp in 1945?  For that matter, suppose someone tweets May-4th birthday congratulations to a Holocaust survivor, or the child of a Holocaust survivor?  The descendant of a Holocaust victim?

You might think that this is all a bit much, because all you have to do is avoid using the hashtag, or Twitter altogether.  Those are solutions, but they’re not very useful solutions.  They require humans to alter their behavior to accommodate code, rather than expecting code to accommodate humans; and furthermore, they require that humans have foreknowledge.  I didn’t know the hashtag would get an emoji before I did it.  And, because it only shows up in some methods of accessing Twitter, there’s every chance I wouldn’t have known it was there, had I not used to post.  Can you imagine if someone sent a tweet out, found themselves attacked for tweeting in poor taste, and couldn’t even see what was upsetting people?

And, as it happens, even #may4th wasn’t safe from being hashflagged, as Twitter calls it, though that was different: it got a yellow droid’s top dome (I assume BB-8) rather than a Stormtrooper helmet.  The droid doesn’t have nearly the same historical baggage (yet), but it still risks making a user look like they’re being mocking or silly in a situation where the opposite was intended.  If they tagged a remembrance of the 2007 destruction of Greensburg, Kansas with #may4th, for example.

For me, it was a deeply surreal way to make the one of the points I’d been talking about in my Pastry Box article.  We’re designing processes that alter people’s intended meaning by altering content and thus adding unwanted context, code that throws pieces of data together without awareness of meaning and intent, code that will synthesize emotional environments effectively at random.  Emergent patterns are happening entirely outside our control, and we’re not even thinking about the ways we thoughtlessly cede that control.  We’re like toddlers throwing tinted drinking glasses on the floor to see the pretty sparkles, not thinking about how the resulting beauty might slice someone’s foot open.

We don’t need to stop writing code.  We do need to start thinking.

Heard and Received

A week ago today, I stood on a stage in San Francisco and told a couple thousand developers they were doing it wrong.  I mean, I got up there at O’Reilly’s Fluent, The Web Platfom conference, and gave a talk with a slide that literally said, “The Web is NOT a Platform”.  You can see it here, all fifteen minutes of it, in which I borrowed liberally from Jeremy Keith, added a splash of Mike Monteiro, and mixed it all together with things I’ve been saying and thinking for the past, oh, decade or more.

As it turned out, and a little bit to my surprise, a fair number of people completely agreed with what I had to say, judging by the reactions I got both online and in person.  Only a few people disagreed with me in person, which was fine; I actually hoped that there would be some pushback, since I’m not the smartest person in the world by any stretch.  The best part was, our disagreements were friendly, well-sourced, and collegial.  I love having conversations like that.  I don’t know that any of us changed our minds, but we were able to test our assumptions and viewpoints against each other.  In one case, I shook hands on a friendly, no-stakes bet over which of us would prove to be right, five or ten years down the line.

What made it really fun is that not twenty minutes after I stepped off the stage at the end of that talk, I stepped back on to accept a 2015 Web Platform Award alongside Sara Soueidan, Mark Nottingham, and Mikeal Rogers.  Those are some amazing people to stand with, and that it came from O’Reilly made it even more humbling.  In fact, Sara said it best: “This is my first time ever winning a web award, and I feel privileged to have won it from such a prestigious company.”  To which I would only add, and in such prestigious company.

I do want to note that what I said at the very end of my acceptance remarks was woefully insufficient.  What I should have said, and would have said if I hadn’t suddenly felt completely overwhelmed, is that the web has meant more to me, done more for me, and given more to me in the past two years than any one person could ever have any right to expect.  The web and what it makes possible, the ability to reach out and share and hear from you and stay in touch—that kept me sane, and may very well have kept me alive.

Thank you all.

Talk Talk

If you prefer hearing voice to reading text, I was on a couple of podcasts recently and would like to share; also, I have some live appearances coming up soon.

The first podcast is a 16-minute segment on the eHealth Radio Network, talking about designing for crisis.  This was recorded shortly before AEA Seattle and HxRefactored, which is why I talk about HxRefactored in the future tense.  Much as was the case with my talk at HxRefactored, this concentrates on the topic of designing for crisis in a medical/health care context, and as it turns out, it’s only slightly shorter than was my HxR talk.

The second is both longer and a bit more recent: I talked for an hour with Chris and Dave at Shop Talk Show about flexbox, inline layout, the difficulties of the past two years, and how I’ve changed professionally.  It doesn’t shy away from the emotional side, and some listeners have described it as “heart-rending” and “sobering”.  So, you know, fair warning.  On the other hand, I call Chris Coyier a “newb” about a minute in, so there’s that.

In the Shop Talk episode, we talk briefly about Facebook’s On This Day feature, which had just launched but I hadn’t seen at that point.  Yesterday, it finally popped up in my Facebook timeline.  I had observations, and will probably write about them soon.  First, though, I need to finish up my slides for Fluent, where I’ll be giving my talk “This Web App Best Viewed By Someone Else”.  I get 13 minutes to tell the audience that they… well, I don’t want to spoil it for anyone.  (Plus there’s another slide deck I need to finish up for next week, but that’s for a private engagement, so never mind that now.)

In May, I’ll once again be presenting the hour-long version of “Designing for Crisis” at An Event Apart Boston.  There are still some seats left if you’d care to join us; it’s a pretty great lineup, and as usual I’m feeling a wee bit intimidated by the brilliance.  Attendees have been telling us that this year’s lineup is one of the best they’ve seen, making AEA worth every penny and then some, so you’d get way more out of the show than just hearing me.

In case you’re wondering (and I also mentioned this on ShopTalk), I won’t be at AEA San Diego in June.  Part of me very much wants to be, but an accident of scheduling made it inadvisable: the show starts June 8th, the day after the first anniversary of Rebecca’s death and what would have been her seventh birthday.  I don’t know that I’ll be in any shape to hold brief conversation, let alone stand on stage in front of a few hundred people and give an hour-long talk, in the days immediately following.  Rather than risk it, we (the AEA team and I) decided to have someone else take my place at the San Diego show, and that show only.  I intend to be at all our other shows this year.

Hopefully, I’ll get a chance to write about attending not-web-design conferences in the near future.  I find such experiences entertainingly, and in some ways refreshingly, different.  I recommend it.

The Pivotal Ways

Five years ago yesterday, the suave and debonair Ethan Marcotte debuted a talk titled “A Dao of Flexibility” at An Event Apart Seattle.  I still remember the feeling in the room.  Those of us who were there realized that it was a pivotal moment for the web, even before Ethan had left the stage.  It was the moment that responsive web design burst forth into the world.

The title, and content, of Ethan’s talk explicitly paid homage to the rugged and handsome John Allsopp’s “A Dao of Web Design”, published fifteen years ago today at A List Apart.  It’s hard to overstate how much wisdom and prescience is distilled into that deceptively short piece.  As I said in the testimonial I contributed to ALA’s remembrance:

John’s insights are as sharp and relevant as ever, especially when we realize the web’s inherent flexibility isn’t just about layout—that, in fact, layout flexibility is one of the web’s least important features. I try to reread “A Dao of Web Design” at least once a year. You should, too.

There’s not much more I can add, and honestly, anything I tried to add to these seminal works of brilliance would only cheapen them.  Go, read; go, watch.  Remember where we’ve come from, and use that foundation to chart where we’re going.

October 2015