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Archive: 2014

The Light of Other Days

Every day or three, I upload another batch of photos to Flickr, trying to work my way through the backlog and get caught up with the present.  This is a habit I enforce inconsistently, because I’m bad at maintaining regular habits even at the best of times.  That halfway explains the backlog.  When I do enforce it, my habit is to upload no more than 10 or 15 photos at a time, so that I can properly tag and geolocate them without having to invest hours in the process.  That explains the other half of the backlog.  Right now, as I write this, I’m about six weeks behind.

Which means that yesterday, I uploaded the first half of the pictures from Rebecca’s sixth birthday party.  It’s been over five weeks now since she died, but in the Flickrverse, she still has six days to live.  She’s still tired but essentially herself, riding the Rocket Car and eating mini-donuts and chasing bubbles and hula hooping and blowing out the candles on her half of the enormous Frozen-themed cake shared with Ruth, her best friend in the whole world, the girl who shares her initials and whose birthday is only a few days apart from hers.

She still doesn’t know, none of us know, that the experimental medicine has failed and the tumor has been growing unchecked for weeks, compressing normal brain matter and now only days away from killing her.  Just two days after her birthday party, an MRI will reveal the horrible truth, but in the Flickrverse, that day has not yet come.

Flickr and my laptop combine to become a digital slow glass, bathing me in the light of days past.  I look at those pictures, tag them, adorn them with metadata, sort some into albums, and all the while I remember how we felt that day.  We were worried, Kat and I, but we still had hope.  Everyone there still hoped that she’d find a way to survive, and that hope was not unreasonable.

And so the party was not a wake for a still-living child, but a joyful celebration of her life and the simple fact that she’d lived long enough and well enough to enjoy the party.  There had been times in the previous few weeks that we’d thought she wouldn’t make it that far.  Had we held the party six days later, on her actual birthday, as originally planned, she wouldn’t have.

We didn’t know that then, but I know that now.  As I witness those days past, trying to taste some trace of what life was like then, I also have the horrible foreknowledge of what will happen in the days to come.  I know without question that the MRI will happen, that the news will be dire.  That she will sink into herself and lose so much of what we fought so hard to preserve, and that it will be lost quickly, in the span of a few days.  That we will believe she is leaving us the day before she actually does, and be surprised when she wakes and has a semi-normal evening, believing when that happens that she has a week or two left.  That the next day, the week will end with her actual birthday, the day that shatters us, the day she dies.

Today or tomorrow, I’ll upload the second half of the party photos, and her birthday party will once more be over and that final week will once more begin.  I could stop there, just walk away from uploading forever, and a large part of me cries out to do exactly that—but doing so would arrest more than just the glacially slow expansion of my Flickr account.  If I allow myself to stop there, arrested in the days when we could still feel hope, it will be that much harder to reconcile the past and present.  Without that reconciliation, it is very likely I will never feel hope again.

For myself and my future, the future we were unable to bring her into but must inhabit anyway, I have to keep going.  I have to upload the photos of that last week, relive the horror and anguish, the moments I captured as well as the moments I didn’t but will never be able to forget.  I have to let her go again.

And so the light keeps coming through the slow glass we’ve built, emerging from distributed panes aglow with the light of other days, pushing closer and closer to the unwelcome present.

One Month

One month ago today, just thirty days past, Kat and I held our daughter as she took her last breaths.

I still have trouble accepting this.  We both still have trouble.

Kat says that she often feels like none of this is really happening, that she’s stuck in a nightmare about Rebecca, who is alive and fine and never had cancer.  Sometimes she thinks that Rebecca’s just spending the day with a friend, and we’ll see her for dinner.  She knows this is untrue, but that knowledge doesn’t change the feeling.

I have the opposite problem.  Sometimes I feel like she never really existed, that we’ve only ever had two children and I just had an involved dream about a little girl who lived between our daughter and son.  As if she were a sprite who let us see what our lives would have been like with three children instead of two, and then vanished with the sunrise.  Sometimes I expect to look at the family photos on the living room wall and not see her in them.

But of course she was real.  Imprints of her life are built into the very structure of our lives.  The expansion of the house itself, undertaken to accommodate the three children we realized we wanted instead of the two we always thought we’d have.  Five coat cubbies in the back hallway, instead of four.  Five bar stools at the kitchen island.  The bedroom adorned with castles and clouds and rainbows and fancy princess dresses, a pink painted sky above purple painted hills, a purple fairy canopy over the bed and a cross-stiched birth announcement on the wall, the bedroom where she died, its door now an unadorned white and almost always closed, at least for a while.

A lot of the grief I have yet to really deal with is bound up in her last day, her sixth birthday.  I remember so many things about that day that I wish I could erase, and those are the things I need to deal with.  There are three things in particular that are particularly painful, most of all the moments her body gave out and she physically died.  Twice.  Even though she was gone well before either of those moments, they are still, to me, the moments of her death, and I still can’t shake that impression.

The other two things I’m not ready to allude to, let alone describe, even to myself.  I’ll know I’ve made some progress when I’m ready to write a chronicle of that day.  I may never show it to anyone but me, but I have to write it, have to create a structure where I can store some of my sorrow and receive some measure of peace.

Some day.  Not today.

Today it’s been a month since she died.  One month.  Measured by the weight of my grief, it feels like it’s been a lifetime or more; but measured by the progress I’ve made in dealing with my grief, it feels like it’s been no time at all.

What Not To Say to a Grieving Parent

In the face of tragedy and grief, it’s hard to know what to say or do.  And one thing I’ve noticed is that some people—not most, maybe even not many, but more than enough—say and do what they think would help them, without really considering what might be helpful to the person who’s grieving.

I don’t really want to get into the doing side of things at this point, but I can definitely talk about the saying.  The most basic rule is:  don’t let your discomfort with tragedy and grief push you into saying whatever comes to mind.  A person’s grief is not a wall against which you should throw a spaghetti pot of nostrums, hoping that one of them will help.  Maybe one will, but the harm likely caused by the others will outweigh it.

The second most basic rule is:  don’t assume that a grieving person believes what you believe, or even that they believe what they believed before the tragedy.  They may surprise or even shock you.  The atheist may suddenly talk about an afterlife; the theist may angrily reject the existence of higher powers.  These may be temporary shifts, or not, but they are raw, honest expressions of grief.  Apply this rule in the exercise of the most basic rule, above.

Right now, I can only address this from the perspective of a grieving parent, so I will, though this all does apply to anyone who’s grieving—the child of a dead parent, the close friend of the recently deceased, and so on.  Let’s start out with things you should say to a grieving parent.

“I’m so sorry.”

You’ve let them know you feel sorrow for them, are thinking about them, and are generally there in support of them.  It seems like a lot for so little a sentence, but it’s all there.  I think this is just about the most universally acceptable thing you can say to a grieving parent, and it also has the benefit of being the most appropriate thing to say.

Be prepared for them to say “me too” or something like that; otherwise, they’ll probably thank you.  Do not tell them that no thanks are necessary.  Let them acknowledge your care and support in what is likely the only way they can manage, with the only words they can find.  Which leads us to the next thing you can fairly safely say.

“There are no words.”

Because after expressing your sorrow, there really aren’t.  There are no words that can explain it, no words that can make it better, no words that can take away their anguish.  I doubt there ever will be.

Beyond those two things, you can offer to help in some way—which is part of the doing that I said I wasn’t going to get into, but I’ll say here that you should only say this if you’re willing to do laundry or dishes or whatever else they request—or just sit quietly with them until they speak.  Then follow their lead in the conversation.  They may not speak at all, even if you sit with them for hours.  Be okay with this, or be somewhere else.


All right, so what do you not say to a grieving parent?  Honestly, we could be here all day with that, but I’ll skip over the ones that are obviously Just Wrong and address some of the most common ones that seem to pass by without comment.  And yes, I’ve had all of them said, tweeted, or Facebooked at me, or at least very near me.

Of course, all of these are dependent on the parent in question.  If they say their child is in a better place now, you can absolutely agree with them.  In fact, you should agree with them, or at least refrain from disagreement, regardless of whatever you personally believe.

Because that’s what you do if a grieving parent expresses a belief you don’t hold: You agree with them.  Now is not the time to be undermining whatever framework is holding them together; they have little enough of that as it is.  If you’re religious and a non-religious parent says that their loved one is gone forever, not existing at all, you go along with it.  If you’re non-religious and a grieving religious parent says their loved one is in a better place, in the arms of God, you go along with it.  This is about them, not you.  Adhere to the Ring Theory at all times.

That said, here we go.

“How are you doing?”

How do you think the parent of a dead child is doing?  Okay, I admit that this might be acceptable if you know them very well or if enough time has passed—though how could you know if enough time has passed?—and because it comes from a place of concern for their well-being, this might get half a pass.  Except what it usually does is force them to either lie conventionally (“I’m okay”) or tell the painful, probably swear-heavy truth.  Better would be “I’ve been thinking about you” or even “I’ve been worried about how you’re doing”, though not by very much.

It’s also very much the case that this has been culturally ingrained for many of us; it’s just a longer way of saying “hello”, fired off without thinking, and so it just slips out.  Grief creates an extraordinary circumstance, though, and you need to go into it challenging all of your preconceived notions about how to interact with other people.  Be aware of what you’re about to say and how it might affect the person in front of you.  (I mean, you should probably always do that anyway, but make sure you do it in this situation.)

“It’s all part of God’s plan.” / “God has a special plan for them.” / “Everything is in God’s hands.”

You just told the parent of a dead child that God planned the death of their child.  That God meant for it to happen, wanted it to happen, and in fact arranged events so that it would be sure to happen.  This is not comforting.  It is very much like the opposite.

“God needed another angel in Heaven.”

You just told the parent of a dead child that their loved one is gone because an all-powerful deity took their child away from them, on purpose, for its needs, not caring what it did to them.  Also, if they don’t believe in God (or even a version of God sufficiently similar to yours), you just said the equivalent of “Santa needed another elf in his workshop.”  Would you say that to a dead child’s parent?  Then don’t say this either.

“Now they’re watching over you.”

You just reminded the parents of a dead child that for all their care and efforts, they could not protect their loved one from untimely death, which is pretty much the most basic responsibility a parent feels.  Furthermore, it is the job (some would say calling, others would say privilege) of parents to watch over and protect their children, not the other way around.  Telling them that this arrangement has now been inverted does not help.

“They’re in a better place now.” / “They’re where they belong.”

You just told the parent of a dead child that there is a place better for them than the home that sheltered them and the family that cherished them.  That the child truly belongs somewhere other than with the people who loved them most.  Don’t do that.

“Everything happens for a reason.”

You just implied that the child is dead because something their parents did resulted in the death.  That wasn’t the intent, but it’s still in there, easily picked up on by parents racked with overwhelming regret and, very possibly, guilt.  (Even parents who did everything they could in a no-win situation are likely to feel guilt that they didn’t do more or couldn’t find a way out.)

“Maybe it’s for the best.”

You just told the parent of a dead child that it’s better their child is dead than still alive.  No.  Just no.


The one I almost included was “I’m praying for you”, because you don’t always know what the other person thinks of prayer.  In general, though, I think most non-religious people (even grieving parents) will mentally translate it to “I’m thinking of you and care about you”.  Of course, if you know for a fact the grieving parent is non-religious, you should probably think hard about skipping this one.  You can still pray for the non-religious, obviously, but say that you’ve been thinking about them.

There are a bunch more that are borderline.  “At least they aren’t suffering any more” is very risky, for example, even if the child was in fact suffering greatly before they died.  It reminds the parent of their child’s suffering, for example, and they may feel guilt as well as grief about that (see above).

As a last note, be careful about what terminology you use regarding death.  Some parents won’t want to say or hear that word, preferring instead phrases like “passed away” or “passed on”.  Others actually find phrases like “passed away” or “lost” to be more painful.  Again, take your cues from the griever.  If possible, don’t use any death-related terminology until they do, and then use the words they do.

To sum up:  think hard about what will help them rather than what will soothe you; do not contradict expressions of grief even when they conflict with your beliefs; be sure to adhere to the Ring Theory; take your cues from the griever.  And be prepared for just about anything.


My thanks to Gini Judd, Kate Kikel, and TJ Luoma for their pre-publication feedback on this post.

The Silent Hole in the World

There is a sound a family makes that only its members can truly appreciate.  The interplay of voices, footfalls, laughter, sobbing, shrieks of joy and frustration and anger, songs sung, catchphrases, the rattle and chirp of beloved toys played with, doors slamming, the rustling of clothing and whispers of breathing, running water and bath splashes and teeth brushed.  The aural fabric of lives entwined.  It forms a curtain around you, altering your perceptions of the world.  It becomes the world.

You feel it, usually half-consciously, but if you stop and listen with purpose, you can actively hear it and savor it and know that the world is right, secure and content inside the cocoon it weaves.  It’s not a symphony, it’s nothing so organized and artificial and remote as that, but sure, yes, call it a symphony, because words like “texture” and “landscape” are even more misleading.

And now a whole section has been silenced.  Not simply resting, not waiting to rejoin the piece, but utterly removed from the stage.  Vanished forever.

I cannot describe how utterly wrong that feels.  Everything feels wrong, sounds wrong, every instinct is scraped on edge, screaming danger, because something has gone fundamentally, horribly wrong and I must fix it.  And I can’t fix it.  It can never be fixed, not by anyone.  Someone is missing and will never be found, no matter how many times we look; can never be replaced, no matter what we might do to try.

There is a silent hole in the world, and the best I can ever hope to do is train my ear not to hear it, most of the time.  Find a way to hear around the void and let what’s left fill my ears.  If I am lucky and work very hard at it, I can learn to appreciate the symphony for what it is, and not constantly obsess over what it once was and should still be.

rebeccapurple

I have been made aware of the proposal to add the named color beccapurple (equivalent to #663399) to the CSS specification, and also of the debate that surrounds it.

I understand the arguments both for and against the proposal, but obviously I am too close to both the subject and the situation to be able to judge for myself.  Accordingly, I let the editors of the Colors specification know that I will accept whatever the Working Group decides on this issue, pro or con.  The WG is debating the matter now.

I did set one condition: that if the proposal is accepted, the official name be rebeccapurple.  A couple of weeks before she died, Rebecca informed us that she was about to be a big girl of six years old, and Becca was a baby name.  Once she turned six, she wanted everyone (not just me) to call her Rebecca, not Becca.

She made it to six.  For almost twelve hours, she was six.  So Rebecca it is and must be.

Kat and I are deeply touched by all the caring and support from the community, and this proposal does mean a lot to me personally.  It will always mean that, even if the proposal is ultimately declined.  I always thought “it’s an honor to have been nominated” was a pleasant spin on sour grapes, but it’s not.  It really is an honor, regardless of the outcome, even if it is an honor I wish nobody had had cause to think of in the first place.

Thank you all.  For everything.


Update 22 Jun 14: the proposal was approved by the CSS WG and added to the CSS4 Colors module.  Patches to web browsers have already happened in nightly builds.  (I’m just now catching up on this after the unexpected death of Kat’s father early Saturday morning.)

I Love You, I Miss You

In April, not long after we told Rebecca we couldn’t find the special medicine, I heard her crying in her bedroom.  I went in to find her with her brother Joshua and Kat.  She was sobbing, huddled in Kat’s arms.

“Rebecca says she wants Joshua to have her Cinderella’s Castle alarm clock forever and ever,” Kat told me through her own tears.

This is the clock that, for a while, is how Rebecca got to sleep, listening to the two stories it could play, one after the other, until she drifted off.  She loved to watch the tiny figures of Cinderella and Prince Charming twirl about as cheery music played and the towers lit up with slowly shifting colors.

Our five-year-old daughter, a fan of all princesses but of Cinderella above all others, willing her treasured clock to her little brother.

I cannot ever describe the emotion that pierced me in that moment.

A few days ago, Joshua added a new component to his bedtime routine.  We didn’t prompt him; he just did it of his own accord, and continues to do it.  Just before it’s time to read stories, he goes over to the clock Rebecca gave him, sitting there on his dresser as it has since that day in April, and starts the music.  Looking at the spinning figurines within, he says in a clear, slightly wistful voice, “Good night, Rebecca.  I love you, Rebecca.  I miss you, Rebecca.”

I cannot ever describe the emotion that pierces me in those moments.

But I can say that it has helped me start to pierce the numbness I described earlier.

Of course it brings tears to my eyes when he wishes Rebecca good night.  The first time I saw him do it, I almost completely broke down, only containing myself for fear of scaring him or making him think he should stop.  I don’t want him to stop until he moves beyond it naturally.

What that pure moment of love made me realize, to my horror, is that I had stopped saying those things.  I had stopped saying I loved her and missed her, because she was gone and there was no point.  But there was a point, all along, and I (perhaps understandably) overlooked it in my grief.  The point is that I can still hear those words, and in hearing them, feel what they mean and what we have lost.

So every so often, when I have a few moments alone or with Kat, I say the words:  I love you, Rebecca.  I miss you, Rebecca.

It isn’t enough to think them (or type them, for that matter).  I speak them, in a whisper or a normal tone or whatever voice seems right.  It becomes a miniature elegy.  A way of slowly, slowly, slowly coming to terms with her death.  Saying the words brings tears, sometimes just a few, sometimes a few minutes of them.  Each tear brings me a tiny step closer to acceptance.

I know it will take a long time, but this small ritual, taught to me by my three-year-old son, keeps me on the path.

I love you, Rebecca.  I miss you, Rebecca.

I Have No Voice, and I Must Grieve

In the hours since Rebecca’s funeral and inurnment, I find it increasingly hard to speak.  I can talk if I must, almost always in response to someone’s attempts to engage me in conversation, or to thank people for coming to Shiva.  I have no words of my own.  Only here, typing, can I find a few.  Even these are hard to produce.

People come to the house and tell me how sorry they are, and all I can say is “So am I.”  They tell me how remarkable Rebecca was, how much the service moved them, how we’re constantly in their thoughts, and all I can do is mumble “Thank you.”  They ask me how I’m doing and I don’t know how to answer.

I look at her pictures on the wall and on the mantle, sitting in front of the Shiva candle, and I try to feel something.  Anything.  Grief seems as absent as joy.  Tears rarely come, and only then in sympathy with the tears of others.  People tell me how incredibly strong I am, and I don’t know what they mean.

In my head, I tell myself that this is still shock, deep shock, and that grief will come.  In my heart, I ask myself how I could possibly feel—more accurately, not feel—this way, if I ever truly loved Rebecca.  Was the whole thing a long, involved dream?

The mourning candle burns on the mantle, and the pictures surround it.  Rebecca as a baby.  At Disney.  Laughing with her siblings.  Kissing a dolphin.  Smiling next to her mother.  It must have been real.  The house seems empty now, vast beyond need, filled with too many rooms and not enough use.  I miss her laugh, her footsteps, her arms around my neck, her energy.  It must have been real.  Yet I still sit, numb and passive, wondering if I will ever grieve my child’s death, and what it will say about me if I never do.

Eulogy

Below is the eulogy I delivered at Rebecca’s funeral, as I wrote it.  I hope that what I actually said matches the text.  The same deep shock that let me speak also prevented me from retaining any clear memory of what I said, and I’m not ready to watch the archived recording of the service to find out.  I don’t know if I’ll ever be ready.  I hope I will—to see Carolyn’s tribute to her sister, if nothing else.


Rebecca was fierce.  She beat adults in staring contests when she was two weeks old.  Rebecca was joyful.  Her laugh could fill a room and bring a smile to anyone who heard it.  Rebecca was stubborn.  She would often refuse to give in, even when it cost her something she wanted.  Rebecca was kind, and loving, and mischievous, and oh so very ticklish.

She vibrated with energy.  Her philosophy was essentially: never walk when you can skip, never skip when you can run, never run when you can dance, and never dance when you can hide yourself around the next corner and then laughingly yell “BOO!” when everyone else finally catches up with you.

She loved to steal our phones and wallets and keys from our pockets, not to hide them away or do anything mean or malicious, but to wave them in front of us and laugh her way through an affectionate, singsong tease.  If there’s a world beyond this one, I hope whoever’s in charge has secured all the valuables.  Not to prevent her from swiping them, which would be an impossible goal, but because she would be disappointed and bored if they were too easy to swipe.

Rebecca is not an angel, nor would she wish to be.  If anything, Rebecca is now a poltergeist.  On her sixth birthday, we had planned to go to Cedar Point that day and the next.  Instead, that was the day she died… and on that day, a water main break closed Cedar Point for the entire weekend, because if she couldn’t go, then nobody gets to go.  And in brief conversation this morning, I was literally about to say the words “lose electricity” when the power went out in our house.

The little stinker.

One of the hardest things for us in the last few weeks of her life was seeing how the tumor slowly and inexorably took all that sass and spice away from her.  The loss of energy and emotion was horrible.  We had fought so long and hard to keep her quality of life normal, and we had succeeded.  It was only at the very end, just the last few days, that she moved beyond our ability to preserve it.

Underneath it all, she was still Rebecca.  She got mad at her sister and brother because they would get to stay us and she wouldn’t, and then she forgave them because she understood it wasn’t their fault and she loved them so much.  She gave us disdainful looks when she thought our attempts to tease her were lame.  She asked, wordlessly but clearly, to hear her favorite stories.  She told us she didn’t love us because she wanted to push us away, to lessen our pain.  But when we explained to her that the joy of loving her was worth any pain, and that we could never stop loving her regardless, she relented and admitted the truth that we had never doubted.  The last words and gestures that passed between us were of love.

In her last hours, she was surrounded by love, her room filled with people who loved her as she loved them, never leaving her alone for a second.  We held and snuggled her all the way to the end, all of us together.  And the people in that room were surrounded by the love of those who loved them, and they by those who loved them.  All of that love focused on Rebecca.  She deserved it.  But then, so does every child.

Now she is gone, and we who remain are devastated.  It is only together that we will move forward.  Community has sustained us the past months, and made it possible for us to do everything we could for Rebecca and Carolyn and Joshua.  Community will help us get through this.  Our hearts have been broken into uncountable pieces, but we will help pick up those pieces together.  I am beyond heartbroken that she is gone, but I will never, not for an instant, ever regret that she came into our home and our lives.

What matters in this life is not what we do but what we do for others, the legacy we leave and the imprint we make.  Her time may have been short, but her spark illuminated so much in that time, touched and warmed so many people, and for the rest of our days we will all be changed for the better.

August 2014
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