meyerweb.com

Skip to: site navigation/presentation
Skip to: Thoughts From Eric

Archive: 'Personal' Category

Finding My Way

With presentations of “Designing for Crisis” at AEA Orlando and World Usability Day Cleveland now behind me, I’m getting into the process of reviewing and refining the talk for 2015.  This will be my talk at An Event Apart all throughout this year, making me one of the rare AEA speakers who won’t have a brand-new talk in 2015.  (We’ll have a mix of new and familiar faces, as we always try to do, and they’ll all be bringing new material to the stage.)

Even “Designing for Crisis” will have some new aspects to it, as I discover ways to strengthen it and loop in some new thoughts and discoveries.  As an example, I just recently had a great chat with Amy Cueva, who gave me some really sharp insights into how I can share the message even more effectively.  I expect that kind of iterative improvement to continue throughout the year, given how new the topic is to me, and possibly to everyone.  It’s been something of a surprise to have many people tell me it’s caused them to see their own work in a whole new light—even people working in fields where you might think they would already be on top of this.  I’m really excited to bring this talk to people at AEA, and elsewhere as opportunities arise.  I hope it will do some good in the world.

In parallel with that ongoing effort, I’m getting back to writing more than just the occasional blog post.  I’ve restarted work on the fourth edition of CSS: The Definitive Guide—details on that will be forthcoming just after the holidays.  I’m also starting to write down some of the thoughts and approaches in “Designing for Crisis”, as well as some nascent thoughts on network effects, responsibility, community, and guidance.  I’m also trying to teach myself git so I can push out public repositories of my CSS tests and some bits of code I’d like to release into the wild, but honestly that’s pretty slow going, because it’s always a fifth or sixth priority behind my family, working on AEA, refining and rehearsing the new talk, and writing.

(“Bits of code”.  SEE WHAT I DID THERE?)

Given everything that’s coming together, I really am looking forward to 2015 and a return to speaking and writing.  For painfully obvious reasons, I was pretty out of the loop for nearly all of 2014, not to mention the last half of 2013.  I tried to stay up to date, but it’s one thing to be in the middle of things, and quite another to observe things from a distance.  (The mosh pit never looks like it feels, you know?)  So in addition to all the other stuff, I’m working overtime to catch up, and that’s where I could really use some help from the community.

So, tell me: what did I miss?  What’s emerging that I should be (or should already have been) paying attention to, and what am I already behind the curve on?  What has you excited, and what sounds so awesome that you’re hungering to know more about it?  And maybe most important of all, where should I be going to get caught up?

All input welcome, whether here in the comments, or out there on les médias sociaux.  And thank you!

Six Months, Ten Seconds

Six months ago today, our child died in our arms.

I still have trouble believing this.  Kat and I both still have trouble.  But only on occasion, these days, and not for long.  As someone once said, when it comes to the death of a loved one, you don’t get over it, but you do, eventually, if you allow yourself, get used to it.  We’re slowly getting used to it.

Half a year.  It seems like it’s been forever, as if uncountable years have passed since Rebecca died, and yet there are still so many traces and impressions of her that sometimes it seems as if she was only just here.  We struggle, sometimes, to decide what to preserve and what to let go.  We had to force ourselves to put the few boxes of mementoes we’ve kept into storage this past week.  It felt like we were consigning Rebecca to the attic, which doesn’t seem like much when you think about it, but it was in some ways as difficult as consigning her remains to the earth.  For that matter, we were recently making some changes to the family picture wall, and for each picture of Rebecca, we had to ask if it should stay up or come down.  None of those choices were easy, even after half a year.

Of course, half a year is less time than elapsed between her diagnosis and her death.  I remember so much, and so little, of those months.  But this is unremarkable, given that we remember so little of our regular lives.  (Think about yesterday, or of last Friday.  How much of the day do you actually remember?  How many of those several thousand minutes can you no longer recall with clarity?  Now, what else have you forgotten?)

We have thousands upon thousands of images of Rebecca; just in my iPhoto library alone, there are 10,188 photos tagged with her name, 1,624 of which I flagged or rated five stars (or both), 785 of which are on Flickr.  Kat has thousands more, as do so many of our friends and relatives.  Those pictures can take us back, clarify our memories, or remind us of some aspect of her personality.  Myriad facets of a life so short, and yet so fully lived.

Videos are far more rare—the Flickr album has just three—mostly because I greatly dislike shooting video.  In the end, it didn’t matter.  Our friend Jessica captured a video that is the quintessential Rebecca, a near-perfect distillation of Rebecca’s personality in just under ten seconds—all her sass ‘n’ spice, and all her sweetness too.


(Full transcript available at flickr.com.)

Rebecca Alison Meyer, ladies and gentlemen.  How I wish you could have known her as we did.

I laugh every time I watch that video.  Every time.

ardnassaC

May 2014

“You realize this CT could push us out of the study.”

“Yes.”

“Are you ready to face whatever we find out?”

“Of course I’m not ready.  But I will.  We take it a day at a time.  Today she’s okay.”

“Today she’s okay.  Except she isn’t.”

“I know, Kat, but maybe it’s a side effect of the p28.  Or maybe it’s tumor infiltration, or a virus, or who knows what.  She’s been through a lot these past few months.  Whatever’s happening, we’ll find out what it is and deal with it.”


August 2012

“God, what a week!”

“Yeah.”

“It’s not enough that Rebecca nearly killed herself choking on that gum-ball right before we left for vacation.  Thank God Jen was right there to give her the Heimlich!  I don’t want to think about what would have happened if she’d aspirated with nobody around.  And the way she was wailing after the car hit us, I was sure she was headed to the hospital.“

“Me too.  Which I have to say seemed weird, because she was sitting furthest from the impact.”

“I thought maybe the energy from the impact somehow bounced around the car and focused where she was sitting, or maybe she wasn’t buckled in tightly enough.  I thought a lot of things.”

“Yeah.  At least I managed to speed up enough that the impact was behind Joshua instead of right into his door.  I’m not sure the van would be drivable if I hadn’t, and I’m not sure that he’d be out of the hospital altogether.  I just wish I could’ve sped up sooner, or faster, or something.”

“You did great.  Nobody was hurt.  We couldn’t ask for much more.”

“I know.  Still.  I’m not going to soon forget how I felt when I thought Rebecca was seriously hurt.  Like you said, she sounded like she was.”

“Sometimes I think her guardian angel either gets sloppy or works overtime in August.  Remember that bad allergic reaction she had to the sunblock last year?”

“Yes, and I remember how hyper the Benadryl made her.”

“All this stuff that’s happened to her—I just picture her guardian angel sitting in a bar every August going, ‘I kept her safe, now gimme another one!’”

“At least she’ll have some great stories to tell in high school, when they play ‘who had the worst vacation’.”


April 2012

“I can’t believe these things are back.”

“At least this time they aren’t as widespread, and they can be removed laparoscopically.  It was hard enough when you were bedridden for two months when we had only two kids.  With three now, I think I’d go insane.  Especially given Joshua’s disinterest in sleep.”

“I can’t figure out how a baby that young is so opposed to sleep.  He’ll never remember this, and to Carolyn this is just another round of Mommy-in-the-hospital.  But Rebecca is so worried.  Have you seen how clingy she’s gotten with me since we told her?”

“She’s still pretty young.  She’ll adjust quickly.”

“How do we help her do that?”

“The same way we did with Carolyn.  We tell her a hospital is where people go to get better, and that Mommy has bad rocks in her belly that the doctors will take out and then Mommy will get better.”

“You know she’s going to ask us if every rock we go past is a good rock or a bad rock.”

“That’s okay.  She’ll figure it out soon enough, and she’s too little to understand things like tumor growth and how one kind of tissue is good but another is bad.  And one day, when she grows up, she’ll probably chuckle about how she thought Mommy had actual rocks in her belly.”


July 2009

“How’s Kat doing?”

“She’s feeling a little bit better every day.  The infection she got in her incision really set her back, but that finally seems to be cleared up.  We’re hoping that she’ll be able to start walking unassisted and maybe get downstairs in the next week or two.”

“How are the girls?”

“They’re fine.  I think Carolyn enjoys taking her mom snacks in bed, and we sometimes have family dinner up there.  It was a little scary for her at first, but she’s young and resilient.  Rebecca is still Rebecca, crawling and cruising like crazy.”

“You know, I really thought you’d be a widower by now.”

“What?  Why?”

“When we saw those MRIs showing the mass, and then they delayed her surgery for an oncologist to be on hand, I was convinced it was malignant and that she’d die from it and leave you all alone with the girls.  I was sure.”

“Ah.  Well, fortunately, it wasn’t.”

“Seriously.  It was a pretty terrible first birthday present for Rebecca, though, to have her party postponed and her mom in the hospital.”

“I suppose, but she’s so young that she’ll never remember any of it.  Besides, she’ll have plenty more birthdays.”


June 2008

“I know we’ve waited a long time to be placed, but we can’t take a child with cystic fibrosis if we’re not ready to deal with everything that entails.”

“What does it mean if she has CF?”

“A lot of respiratory problems, lots of lung infections, possible lung transplants.  Bottom line?  She’d probably die from it in her teens or early twenties.”

“…I don’t know if I can do that.”

“This could be nothing.  We’ll know by Monday whether she has it or not.”

“If she does, I— I have to turn down placement, Kat.  I’m sorry.  I don’t think I can go into an adoption knowing that it’s time-limited.  I know we’ve been waiting more than two years, but I don’t know if I could survive one of our children dying young.  I’d rather wait longer, and take placement of another baby, than face that.”

“You know some people would ask what you’d do if we’d been able to get pregnant and given birth to a child with CF.”

“And I’d tell them that I’d love and care for that child.  But we can’t get pregnant, and one of the side effects of that inability is that we get the ability to choose which child we take into our lives.  I make no apology for exercising that choice to maximize our chances of having the best outcome.  We’ve done it before, and if need be, we’ll do it again.  I don’t think I can choose to adopt a child with a life-span I know ahead of time to be limited.  Maybe I’m a coward for that, and maybe not, but that’s where I am.”


March 2008

“I don’t get it.  Why do we have to renew our homestudy?”

“They’re only good for two years.  State law says you have renew if you’re still waiting.”

“Yes, thank you, I know that.  I mean, why are we still waiting?  After two years?  We only waited a few months for Carolyn.”

“I know.”

“We’re great parents.  Why are we waiting so long?  What’s wrong with us?”

“Nothing.  You know that.  It’s just, sometimes you wait.”

“Two years, though.  Sometimes I feel like we’re never going to get picked.”

“Sometimes I feel the same way, but you know that if we wait long enough, eventually we’ll be at the top of the list.  And then even if no birthparents actively pick us, we’ll get placed if the birthmother says she doesn’t care who gets the baby.”

“Wouldn’t you rather be picked?  Instead of just placed by default?”

“Honestly, I’m fine with it either way.  I know it’s been a long time.  I know it feels like forever.  But compared to how long we’ll get to be with that child, it’s really not very long at all.  They’ll be our child for the rest of our lives.  We’ll get to love them for decades.  Compared to that, what’s a couple of years?”


October 2003

“I talked to Adoption Circle today and we’re back on the waiting list.”

“Okay, great.”

“They asked how we were doing.”

“What did you tell them?”

“That we were doing okay, and we were ready.”

“Well, it has been four months since Mom died.  It’s sad, but we can’t put our lives on hold forever.”

“That’s basically what I told them.”

“You know, given Mom’s family’s history of cancer, it’s probably for the best that we’re adopting—I wouldn’t want to risk passing that on to our kids.  I just hope I live long enough to see them grow up.”


October 1998

As the funeral service for Kat’s aunt Judy ended, the sun slipped behind a bank of clouds.  The mourners began to disperse, leaving the family to stand in the chill October air, talking quietly as they comforted Judy’s husband and children.  Off to one side, Judy’s mother, Kat’s grandmother, stood stiff and drawn next to me, her eyes glistening with tears as she stared off at the horizon.  I had already expressed condolences and couldn’t think of anything else to say, so I just stood there.  After a few moments, she looked at the grave, then looked at me, and shook her head.

“It’s a terrible thing for a parent to bury a child,” she said.  “Terrible.  Nobody should ever outlive their child.”

Apophenia

My next big project is to form a rock band called The Why and release a double-length concept album titled “Apophenia”.

—Twitter post, 15 October 2014

Kat and Carolyn were in New York City this past weekend for a brief trip, and when they got back Kat was in a bad way.  I picked them up from the airport and Kat’s symptoms were such that I drove her straight to the Cleveland Clinic ER on suspicion of a cardiac event.  (It wasn’t.)  With the help of friends, I got the kids off to their scheduled activities and stayed with Kat.  By late in the afternoon, we knew she’d be staying overnight, and we decided that I should go to be with the kids.

I gathered up the backpacks and dirty clothes from their weekend trip, slung them over my shoulder, and then stood at Kat’s bedside, holding her hand.  Not speaking, just standing.  Eventually she gave me a small smile and said, “Go on.”

I twitched toward the door, and failed to actually move.  Kept standing.  Kept holding.

“I’ll be all right, Eric.  It’s fine.  Go.”

“I know it’s stupid, but I’m afraid to.  The two times I walked away from Rebecca in a hospital, it didn’t end well.”


We spent our last few hours of innocent ignorance in an emergency room in New Jersey, getting Rebecca rehydrated and hoping to figure out what was going on.  She was so lethargic and tired, and we feared spinal meningitis.  As the day wore on, she seemed stable, neither better nor worse, but one of us had to go get the other kids.  We decided to have Kat stay, since she was the medical professional.  I gave Rebecca a hug and kiss, told her I loved her so much and to feel better soon, and walked out the door.  Not long after that, she had her first seizure.

Just a few months later, after the surgeries and protons and initial chemotherapy and our return back home to Cleveland, Rebecca finally came down with a fever.  It was of course at a time that we could only take her to the ER for evaluation, to make sure she wasn’t neutropenic.  It was evening, and we were hungry, so I went over to the food court while the last few tests were run before they discharged us.  While I was gone, the staff gave Rebecca a routine dose of ceftriaxone, and she immediately had a strong anaphylactic reaction.  We had never known she was allergic to it.  Antihistamines were quickly administered, and she had to spend the night at the hospital in case the reaction flared up again.  It didn’t.


Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong.

And of course there’s nothing to that but coincidence, but we evolved to spot patterns.  It was a survival skill of the savannah, to see how disparate and apparently unconnected events tied together into a cohesive story.

Now we drag it around with us like a growth that we’ve long since ceased to notice.  We see stories written in the stars and meaning imposed on our mundanity.  The most common question we ask is “Why?”, and that can lead us to wonderful discoveries and insight, but it seems just as often to mislead us into an egotistic reordering of the world.  Our obsessive quest for causes can all too easily cause us to invest in illusions.  That pattern-recognizer that coils through the hindbrain can and does turn on us.

Think of all the conspiracy theories you’ve ever heard or believed.  Think of all the times you’ve heard of something terrible happening to someone and asked yourself why it happened.  Think of all the people who get blamed for what has happened to or even near them, regardless of whether we know all they did or didn’t do.

Think of all the Greek or Roman or any other culture’s myths, the stories where some person draws the notice of the gods, who then proceed to punish them for hubris or mischievously grant their prayer according to its letter but opposite its spirit.  That impulse is no less strong in us.  So many people ask themselves what they could have done differently to avoid their current situation, or what they’ve done to deserve what’s happened to them.

And even our language enforces this view, subtly and persistently.  In the last paragraph, I could have written “So many people ask themselves what they could have done differently to avoid their fate”, but “fate” is a concept born of stories.  It carries with it meanings of destiny, of supernatural forces directing a specific outcome.  I even started to type the word, and then replaced it with “current situation”, which is a far more accurate rendition of what I want to say, but not nearly so poetic.

Not nearly so story-like.

We optimize our language’s patterns to favor the concepts that feel the best to us.  All languages do.  And in doing so, we not only reflect the patterns we see, but reinforce them.  Powerfully.  We reorder the way we see the world, we create patterns of filtering, and when we talk to each other we transmit those patterns to each other, self-reinforcing.

I could say the patterns are living, memetic symbiotes, and thus fall victim to the overactive pattern-recognizer in my own hindbrain.

So we ask ourselves what we could have done to save Rebecca.  I can and do believe as strongly as I believe anything that there was never any hope for Rebecca.  Her genetic makeup, some accident of her conception or fetal development or whatever, meant that she was always going to die of cancer as a child.  We could have tried anything from megadoses of chemotherapy to experimental surgery to the latest woo-woo herbal treatments, and she still would have died.  All we could affect was how long that took, and what her short life would be like as it came to an end.  And we had no way to know which choices struck the best balance of lifespan and life quality.

I like to think that we did well, but for all I know some other set of choices would have given her another six or twelve months with the same quality of life she had.  I don’t know, and I don’t torture myself over that; we did the best we possibly could.  Perhaps that’s me imposing an absent pattern on disparate points of data again, but she did have great quality of life, up until the last week or so, and we fought ourselves to safeguard that for her.  It will have to be enough.

And yet, I still ask myself sometimes if we somehow could have saved her.  If there was a moment when the doctors said X, that we were supposed to do Y instead.  And there’s that pattern-recognizer, affecting our language again: “we were supposed to”.  As if her life was meant to be a long and perfect story, and we were too blind and stupid to see it and fulfill it.  As if we failed to understand what we were supposed to do.

That same impulse is only a short step away from taking responsibility for the cancer itself.  Wondering if we could have avoided the cancer entirely if we’d fed her a different diet, or lived in a different city with different air, or taken a different approach in infant medications, or to vaccination.  Or if we’d been less satisfied with our lives.  Maybe she’d be all right if we hadn’t had the impulse to thank whatever gods or demons might lurk beyond the horizon for our lives that seemed so right, and say no more than that; maybe she suffered for our being humbly grateful for what we had and not thinking that we needed to beg for that state to continue.  Punished for the hubris of believing that our lives were good and in no need of improvement.

“What did I do to deserve this?” it’s so easy to ask.  “What did she do to deserve this?  Why her?  Why us?”

“Why”.  “Deserve”.

Patterns of instinct, encoded in language, enforced in thought, imposed on the world.

Capricious deities, lurking in the clouds.  Heroes and monsters, written in the stars.


Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong in my absence.

So I stood there holding Kat’s hand, wanting to stay with her even if it meant sleeping in a hospital chair all night, because deep in my hindbrain, the pattern-recognizer was screaming that something would go wrong, just like those other times.  That she would die if I left.

I squeezed her hand and gave her a kiss, told her I loved her and to feel better, and walked out the door.

She’s fine.

A New Chapter

Last Wednesday, I stood on the stage at An Event Apart for the first time in almost fifteen months, in front of an audience for the first time in just over a year, and delivered the most important talk of my life.  It wasn’t about CSS, or coding, or even standards.  It was about design and empathy and user experience and my own personal experience and what it taught me.  It was a talk about designing for users who are in the midst of crisis, no matter what kind of content you have, no matter whether you think your users will ever be in crisis when they come to your site.  It was the opening of a new chapter in my career.

To say this is a radical departure is an understatement.  But after the turns my life has taken, it was almost impossible that this would have been anything less.

I don’t know if the audience sensed my anxiety and fear in the moments before I spoke.  I wasn’t afraid of speaking in front of the audience, nor of their reaction to my points.  I was afraid of making my points badly, so that the message was lost in hesitation and stumbling.  I was afraid of fumbling and failing, not because of how I would look in public, but because it would mean doing a disservice to the message I was trying to convey.  And I was a little bit afraid of letting down the team at AEA, who have stood by me and done so much for me.

In the past, I haven’t really rehearsed my talks.  They were all technical, covering territory I knew very well.  The cliché is “Don’t prepare a talk, prepare yourself.”  In other words, know your subject so well that you can just talk about it for an hour.  That’s how I approached all my presentations.  I had high points to hit, slides (or demos) in a certain order, but no actual script.  I didn’t need one.  CSS was so familiar to me, I could mostly improvise what I said.

But this new talk is entirely about territory new to me.  In some cases, it involves things that are new to everyone—ideas I’ve come up with, and techniques I’ve devised, that I’ve never seen before, and nobody I’ve talked to has seen before.  It took no particular act of genius to do this; I just tried to simulate certain frames of mind with software.  The only insight there was to realize that it should be tried at all.

Beyond the topic area, everything about this talk is unusual for me.  I wrote it out as if composing an article, and read the text aloud several times to figure out what had to change.  Once the text was set, I rehearsed more than a dozen times, which partly explains the complete blogging silence of the past month.  I memorized the opening and closing sections of the talk verbatim, going over them in my head before bed, sitting on the plane to Florida, pacing in my hotel room.  On Sunday afternoon before the show opened, I went into the ballroom and essentially gave the talk to myself and the techs putting the lighting and AV together, getting reacquainted with being on stage and throwing my thoughts into the world.

And then, Wednesday morning, after Jeffrey introduced me, I stood center stage, looked out into the audience that held hundreds of my colleagues as well as my sister and parents, paused for a moment… and started talking.

Several people told me they were holding their breath in that pause, wondering if I’d be able to start.  That wasn’t my concern.  My concern was that I would lock up a few minutes in—that I’d stumble, lose my place, and go tharn.  Once I got through the opening and the first screenshots came up, I knew that danger was past.  Whatever else, I’d be able to carry it to the end.  And I did.

As I said before, that talk marked the opening of a new chapter for me.  I’m not abandoning CSS by any stretch, and in fact I’m moving forward on that front as well, but a goodly portion of my energies will be devoted to this new topic.  I think it’s not just important, but vital, and very much overlooked.  I have research to do, ideas to test and further develop, and a lot of thinking ahead of me.  I have this talk to give at An Event Apart throughout 2015.  There will probably be articles, and possibly a book.  Perhaps even more.  I don’t know yet.

What I know is that I’m on a new path now, one I wish I hadn’t come to by this route, but one that I’m determined to follow.  I hope to take what I’ve suffered and forge it into positive, lasting change—not just for me, but for the profession and medium I still love after all these years.

Gravity Wars Redux

Over the past few weeks, I’ve been writing a remake of/homage to a game I last played somewhere around 1990: Gravity Wars.  I gave this personal project a few hours here and there each day, or more usually each evening, slowly resurrecting a little piece of my past and putting my own spin on it.  You can check it out for yourself, if you like: Gravity Wars Redux.

There are a few things I changed from the version I played all those years ago, besides the change of colors.  First of all, instead of taking turns, in my version the ships fire simultaneously, meaning a no-survivors tie is possible.  Second, the shot preview paths weren’t part of the original game.  Third, the “Gravimetric display” wasn’t a thing in the original game either.  That and the shot previews are leftovers from my development testing that I decided to keep around, either because I thought they added something to the game or because I just liked them too much to dump.

In fact, most of the code in there is accreted leftovers from the experimentation and development process.  Looking at it now, I can see all the things I should have done.  It just got to a point, as with most coding projects, where I could add another scoop or two of spaghetti to the existing mound and ship it, or I could start over and try to make the lasagna properly this time.  I decided to ship it.

I have to admit the point of all this wasn’t actually to recreate Gravity Wars, as much as I like the game and am glad to have a working copy of it.  It was instead to teach myself about the canvas API, and also to try to get a handle on some JS features that have never quite made sense to me.  I think I did okay on the both fronts, in my own idiosyncratic way.

At this point in a JS-related post, I usually throw in a disclaimer about being a JS newb whose code should never be inspected by anybody.  That’s probably still true, but I know I’ve advanced quite a bit from where I was, which pleases me.  I can see that not just in that the code I’m publishing today, which is convoluted and clumsy but still better than what I’ve written in the past.  I can also tell I’ve gotten better simply because I can see better approaches, as a result of what I learned along the way.

This may be where I end the project, or I may go back and take another crack at making lasagna.  We’ll see.  The carrot for me in doing that is it would let me add some other fun features and useful improvements pretty cheaply, not to mention I could fix some things that aren’t quite what they should be (like the placement of planets and ships, which should be a little less random).  The stick is of course having to rewrite code I already wrote.  I mean, lasagna is nice and all, but I like spaghetti too.

Anyway, I enjoyed writing it and learning as I coded, so if slinging missiles around planetary limbs sounds like your idea of a good time, please enjoy.


I’m indebted to Sohrab Ismail-Beigi, whose 1989 PASCAL source code I studied and in some cases directly ported; and to pascal-source.ru, for making that code available for download.  My thanks to both.

Presence and the Gift

There are two aspects of my parenting that have really helped me cope with the illness and death of my daughter.  One was there long before she became ill, was in place before we had any kids; and the other I learned in the months since the first tumor emerged.

What I’ve had all along is a strong determination to appreciate each stage of our kids’ lives for themselves.  I’ve heard or read any number of parents saying they wish the next stage of development would hurry up, or that a past stage had lasted longer.  You know: “Oh, I can’t wait for Johnny to start talking, all this grunting and wailing is so difficult!”  Then, months later: “I really miss the quiet days, before Johnny talked non-stop all day every day!”

Sure, the current stage is difficult.  They’re all difficult.  They’re also amazing, unique to each child, and they’ll never happen again.

So I went into parenthood determined not to push them forward, and equally not to hold them back.  Of course we teach and encourage them.  We taught them sign language so they could talk before they spoke.  But we also didn’t push it, drilling them and punishing every mistake and rewarding every success.  It was the same with speech: we spoke and signed with them, and they picked up each at their pace.  The same with solid foods, and potty training, and learning to read and write.

Of course this isn’t a 100% deal.  I don’t always manage to maintain a Zen tranquility about every last thing.  I’m really ready for diapers to be done, for example; it’s been a decade now, and I’m pretty much over it.  But we’re not pushing it, and I don’t make a big deal out of it—or even a small deal.  This phase will be done when it’s done.

That focus on appreciating the kids for who they are every day has long made it easier for me to navigate the regular shoals of parenting.  And believe it or not, it’s made dealing with illness and death easier.  I didn’t fidget impatiently for the end of the treatments, or try to block out what was happening.  I didn’t spend my time looking over the horizon, dreaming of future days and missing what was happening in front of me.  I was focused on what was happening, good and bad.  Every day, as much as I could stand.

Given how little time we had, I am incredibly glad that I was present for it.  That I cherished everything good in it, and accepted everything bad.  I shudder to think how I’d be doing now if I hadn’t.

That was the first thing that helped.  The second thing, the one I learned in the past year, is to treat all my kids as if they might die in the next year.  That probably sounds like a prescription for massive spoilage and neuroses galore, but hear me out.

Try to imagine this: you learn that your child has a small but noticeable chance of dying a year from now.  Say, 5%, or something like that.  There’s nothing you can do to change that, it’s just how it is: a small chance they have a year left, and a much much larger chance they don’t.  How would that change how you treat them and interact with them?

For me, it created a new blend of short-term and long-term parenting.  I’ve always been a long-term parent, thinking ahead years or decades.  That sometimes led me to be stern or unyielding, and to not always express an appropriate amount of patience and care when it came time to discipline.

But when I realized Rebecca would likely be dead within a year, I realized I had to change how I acted toward her.  I had to soften how I disciplined.  By soften, I don’t mean letting her do whatever she wanted, or reducing the scope of discipline.  It meant working extra hard to meet outbursts of five-year-old rage with calm and measured words.  It meant being clear about the causes and reasons for punishment while working extra hard to be matter-of-fact and neutral about it.

These were things I’d always tried to do, but in the chaos and tumult of day-to-day life, I hadn’t always pushed myself.  Now, with a limited time frame, I had to make every day count.

And, once I realized that, I realized I had to do it for all three kids.  Because who knows what will happen?  We all have a limited time frame, easy though that can be to forget.  Carolyn might have died in an accident before Rebecca’s tumor came back.  How would I feel if that happened, and the last thing I had said to her was angry in words and tone?

I had been falling short with all of them.  Rebecca falling ill made me realize that, and showed me how to step up.  And so I have.

As I said, that doesn’t mean their discipline has lessened.  Because, to go back to the 5% chance of death in a year scenario, that’s a 95% chance that they’ll grow up to be adults.  So you can’t let them run wild; if you do that and they grow up, you’ll just as surely have failed them, not to mention everyone who comes into contact with them.  The boundaries are still the same.  I just try my best to communicate them in a different way.

Even with the odds of death much higher than 5%, that’s how we treated Rebecca.  Partly it was because she might survive, and partly it was because she wasn’t an only child.  We had to treat her consistently with our other children for their sake, as well as for hers.  Even more for her siblings, perhaps, given the outcome.

But when I did put her in time out, or took away a privilege, I always did my utmost to do so quietly and with care, not in anger.  Not with a smile, which would have mocked her frustration; nor with raised voice, which would have escalated it.  Just calmly, implacably, maybe a little sadly.  I did my best every time, and not just with her.  With all three kids.  I continue to do it with our surviving children.

I don’t always succeed, but I always try.  And when I find myself losing control, a quick internal reminder of the stakes is usually sufficient to regain my course.  Usually.  I’m not perfect.  But I’ll keep trying.  That’s all anyone can do, is keep trying.

Indescribable

A thing they don’t tell you before your child dies, because nobody who knows this would go around proclaiming it unprompted (except, apparently, me) and nobody who doesn’t face this situation would ever think to ask and probably nobody who does face this situation has the meta-awareness to go asking after the truth that they will all too soon have to inhabit, is that the pain of it does not consume you like nuclear fire and leave you a hollow, broken, still-burning shell of ash.

Not continuously, anyway.

It does do that sometimes, much more often in the beginning after the end, but that begins after a while to subside and the moments of overwhelming anguish slowly grow farther and farther apart.

After a while, you don’t even hurt continuously, let alone feel what seems like an endless torment.  There are periods of waking time, seconds or minutes or maybe even an hour or two, where you don’t actively remember your child is gone forever, when you aren’t focused on that ungraspable fact.  The intervals grow slowly, over time.  Because humans can get used to pretty much anything.

The grief remains indescribable, but the nature of its indescribability changes.  At first, it is so vast and deep and overwhelming that trying to grasp it is like trying to understand the true size of a galaxy.  Those are the moments of fire and ash, when an unexpected, vivid memory or sharp regret brings you to a sudden, blinded stop.

You try not to have them while driving.

Between those moments, the grief is still there, but different.  It’s not there in strength every microsecond of every day; it comes and goes.  There are times you can put it aside for a while, to concentrate on a demanding task or play with your surviving children or watch a brainless movie.  When you become aware of the grief again, it’s surreal and confusing.  It’s like trying to understand the true shape and texture of a six-dimensional whale.  Even if you could, there’s no way to describe it in words so that someone else can understand.

In those moments of greater awareness, the surreal nature of the grief makes the entire world, your entire being, feel wrong.  It warps you and everything you perceive.  A previously energetic and focused person can become listless and disoriented, or a fidgety, easily-distracted person can become still and quiet.  Anger comes flaring out in strange directions, over stranger reasons.

Recognizing this is difficult, and counteracting it is doubly so.  Recovering from it is a long process, the end of which I have not even glimpsed.  I can imagine it in some detail, I know which general direction to go to get there, but I cannot yet see it.  It is either too far away, or too obscured by the warping effects of the grief.  I don’t know which.  It could well be both.

But this is why I seem to check out, from time to time.  I’m not actually going through an internal hell of pain and torment when I do, which is what I suspect other people suspect.  Instead, I’m trying to come to some understanding of the extradimensional horror that always hovers nearby, sometimes right in front of me and other times just out of sight, hoping that if I can somehow comprehend it in its entirety, it will finally go away and allow me to be happy that she lived instead of sad that she died.

December 2014
SMTWTFS
November  
 123456
78910111213
14151617181920
21222324252627
28293031  

Archives

Feeds

Extras