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One Year

Exactly one year ago, in the emergency department of Cape Regional Medical Center, Rebecca had the first of her seizures, and our nightmare began.

Now we are back in the same place for our annual family vacation.  The same resort, the same building, even the same floor, though not the same room.  We go to the beach, we swim in the pools, we play games on the boardwalk.  All the things Rebecca loved to do.  In fact, her first wish with Make-A-Wish was not to go to Disney World.  Her wish was that it be summer so she could come back to New Jersey and do all those things.  Disney was a distant runner-up, a sort of consolation prize for not being able to do what she really wanted to do.

Even as we organized for that Disney trip, Kat and I decided to bring the family to New Jersey for an early vacation, if Rebecca was well enough once June finally came.  And then to come again in August, unless Rebecca was still alive but too sick to make the journey.  Neither came to pass.

Instead, we’re here without her.  I had feared this would be too painful for us to bear, but it isn’t.  New memories are being made with our children, and if sometimes Kat and I are drawn up short by a specific memory, or a wish that Rebecca were here to enjoy the trip with us, or just having the instinct to count three heads before realizing that we only have to count two, it is usually a wistful sorrow rather than a sharp agony.  Usually.

Those newly-made memories, of jumping waves and digging holes in the sand and boardwalk ice cream and going to water parks, are the building blocks of healing.  Forming them in the place that Rebecca loved so much is, we hope, the mortar that will glue them together.  It helps that we love it here too, and that love is limned by the memory of her love.

It all still seems unreal.  Our lives were proceeding as lives do, and then, in the middle of our special family time away, we were suddenly confronted with the horror that our middle child, our five-year-old girl, had a tumor in the middle of her brain.

I remember all the shock and terror and anguish, but not like it was yesterday, because it wasn’t.  It was a year ago today.

Depression

I’m sad about Robin Williams.  I was also a little bit angry with him.  In much the same way, I was sad about and angry with Chloe Weil when news of her suicide reached me.

Yes.  Angry.  It took some time and help from a friend to work out why: because Kat and I just spent most of a year doing everything in our power to save our daughter’s life, and now here was someone just throwing that away.

Here’s the thing: they did not throw their lives away.  Both of them were suffering from a disease: depression.  That disease made them feel unloved and worthless despite any and all evidence to the contrary.  And they each eventually, despite years of trying to treat and deal with it, died from that disease.

I know this because I have a milder form of that same disease, one that rises and falls in slow, multi-year-long cycles.  I have spent time on SSRIs.  There are times I have gone to counseling.  I have contemplated ending my own life, though only abstractly, never in a detailed or direct manner.  I’ve never in my adult life had suicidal ideation and a plan.  Robin and Chloe did.  They had a disease much, much stronger than I do.

But that’s where my anger really came from: my own depression.  The same lying impulses that sometimes, not often, but sometimes make me feel worthless and unlovable also pushed me to be angry at these people who had the same disease, and died of it.  It lied to me that they had failed.  And for a little while, I believed that lie.

That reaction made as much sense as being angry at Rebecca for having cancer, as thinking that she failed to fight hard enough to live.  It was not their fault.  I know this first-hand… and yet, I believed the lie.

This is another sign that I have it much milder than they did: I could eventually, with some self-inspection backed by decades of experience, recognize the lie for what it was, and dispose of it.  Not everyone has that ability, no matter how much self-inspection and experience they may have.  Not because they are weak or foolish, but because they literally cannot do it, any more than a cancer patient can verbally order the tumors to leave them alone.

I have been lucky.  The disease is mild enough in me that I am still here, and have only sometimes needed pharmacological and psychological help.  That is not because I am strong.  That is because my disease is not strong.  I have still needed and obtained that help, and I feel no shame for that.  If you need help, please get help.  There is no shame in it, no matter what the disease tells you.  If it tells you that seeking help is failure, it is lying.  If it tells you that being sad is weakness, it is lying.  If it tells you that death is preferable to life, it is lying.

It is not shameful to feel depressed.  It is not weak to feel like you want to give up.  It is not failure to ask for help.  There are resources in almost every city of every advanced country—not enough, to be sure, but they are there.  Please use them, especially if you already have a plan to end the pain.  In America, the National Suicide Prevention Lifeline is at (800) 273-8255, or (800) 273-TALK.  You will be connected with a skilled, trained counselor at a crisis center in your area, any hour of the day or night.

If you know of a similar resource in another country, or other resources in America, please leave a comment with the details.  It could help someone right when they need it most.


Update 11 Aug 14: here’s a list of suicide prevention services throughout the world from the International Association for Suicide Prevention.  If you know of one not on the list, the comments are still open (and you should also let the IASP know!).  And information about depression treatment services, not just suicide prevention, is also welcome.

The Gift of Time

Over the past year, we received much assistance, and even more offers of assistance, so many that we were humbled and a little overwhelmed by it all.  In the process, I came to realize that one type of assistance was far more humbling than the others.

For us, the greatest gift people gave us was time.  A friend set up a care calendar, where anyone could sign up to come do after-dinner dishes, or wash-dry-fold a couple of loads of laundry, or make a run to the grocery store, or drop off a pre-cooked or easy-to-cook meal, or whatever other thing we needed that would otherwise have taken up our time.

By doing that, they let us use our time for other things.  During the day, we could do the legwork of looking for treatment options, or the administrative paperwork of consent forms and privacy releases to try to qualify for studies, or arrange travel details when needed, or run errands that were really best done by us—things like grocery store runs.  In the evening, we could concentrate on the kids’ bedtime and take our time with it, allowing a longer bath and adding an extra bedtime story and so on.  We could be fully present for every one of Rebecca’s limited and dwindling number of bedtimes, and spend extra time with Carolyn and Joshua as they went through the same difficult passage with us.  We didn’t have to short them while we concentrated on their dying sister; we could concentrate on all three, because we weren’t distracted by the back-brain awareness of undone chores.

I cannot overstate how incredibly valuable a gift that is.  Not one of us can earn, steal, or otherwise acquire even an instant of extra time.  Our time comes to us all at the same rate, never a surplus or deficit, and is of limited duration.  Every one of those caring helpers came and spent some of their time, time every bit as finite and unreclaimable as ours, so that we could put our time to other uses.  They sacrificed time with their families so we could be with ours.  There is no gift that could ever be more precious than that.

It’s definitely hard to give that gift from a distance.  What do you do if you know someone several states or oceans away who needs that same gift?  Traveling to be with them, taking over that care role for a few days, is an amazing gift, but it’s obviously a lot easier if you live a few streets or suburbs away.  Gift certificates for food delivery services or favorite restaurants or Amazon are a decent substitute if you can’t be there in person, though check to make sure the recipient isn’t already flooded with them.

Thankfully, we didn’t need help with expenses.  Our health insurance’s deductibles and co-pays were well within our ability to pay them, and we were otherwise able to meet our financial obligations.  Not everyone is nearly so lucky.

So what about someone who isn’t so lucky, who’s coping with crisis and tragedy, or for that matter a massively time-consuming joyful event like a newborn child, in addition to an almost-empty bank account?  Money is time.  Seriously.  Donating to a fund for them, or even just sending a check, could keep them from having to work a second job to make ends meet, right when they need as much time as they can get.  It could keep them from having to worry about the rent, food on the table, co-payments for office visits and medicine.  Or even just straight-up payments for office visits and medicine, if (like far too many in America) they don’t have insurance at all.  You might keep them from bankruptcy.

If nothing else, a donation can help them avoid added stress.  Money may not be able to buy happiness, but it can greatly reduce pressure and worry and stress and strife, which is very close to the same thing.  To be able to just pay for something rather than have to figure out whether it’s within the budget, whether it’s really that important, frees up that energy to concentrate on making better decisions, to put that energy toward making life a little better for themselves and their loved ones.

And of course, if you’re able, you can still offer to come clean up their living room, do the dishes one night a week, watch a little one for an afternoon, ferry a child to and from school, or whatever else they might need.

It really is the greatest possible gift.

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.)

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