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Archive: 'Cancer' Category

Divergence

Being here, in the same vacation spot we were last year when Rebecca fell ill, wasn’t as difficult as I thought it would be… until last Friday, August 15th, the first anniversary of her seizures and life flight to CHOP.

That night, the next day, and the days since were much more difficult for me, as we moved through the anniversaries of her first and second surgeries.  Today is the anniversary of the third, when they implanted the drainage tube that probably kept her functional and complete until the last few days of her life.

These days have been so difficult because I’ve been experiencing what I’ve come to refer to as “divergence stress”.  I feel as though last year’s August and this year’s are running in parallel, branching from this past Friday.  I am here, sitting in our rental, looking at the beach and the ocean waves, and feel as though another of me is up in Philadelphia, gaunt and teary-eyed in a dim intensive care ward and hoping against hope that our daughter will survive, while I sit in sunshine and luxury, wondering why I am not with my little girl who so desperately needs me right now, who I so desperately want to hold and talk with again.

Or worse, that another me isn’t up in Philadelphia, but Rebecca still is, lying unconscious and alone in the intensive care unit.  As though the loop has restarted, but I have stepped out of it, abandoning my baby to her cancer.

I know this isn’t the truth.  She is not there.  We are not there.  We are here, now, and she is not.

But someone else, right now, as you read this, is there.  Another family is assembling around a PICU bed, surrounding their child and hoping against hope and sick, choking fear that their beloved will survive.  Maybe they will.  Many do.

That family, and all the families still to come, need research to give their children a better chance to live.  Many of them will need a place to stay while their child endures weeks or months of surgeries and treatments, just as we did.

To that end, our friends Nancy Massey and Kimberly Blessing have launched a fundraiser with two aims.  The first is to support research into pediatric brain cancer.  The second is to sponsor a room at the Philadelphia Ronald McDonald House for a year.  The $10,000 fundraising goal will allow both.  Going beyond that goal will make it possible to support even more research.

It’s not much to make sure those other families have a welcoming place to stay and a better chance at continued life than we did.  If you can, please make a contribution.

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.

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.

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.

So Many Nevers

She’ll never learn to read.  She’ll never learn to ride a two-wheel bicycle, or to drive a car.  Never get to ride the best roller coasters, never learn to swim unassisted, never go to sleep-away summer camp.  Never get her first social-media account, never join a sports team, never compete on the gym floor, never learn to play a musical instrument.  Never fall hopelessly in love, never break a heart, never have her heart broken and learn from it.  Never sneak out for an evening with her friends, never hate her teacher, never graduate from high school.  Never get her ears pierced, never get her first tattoo.  Never fight with her sister over clothing, never share secrets with her brother, never be a shoulder for her siblings to cry on.  Never have her own place to live, never adopt a pet of her own, never get her first job and eventually quit it in disgust for a better job.  Never get to decide whether to marry, whether to have children, whether to believe in higher powers and lives beyond this one.

All the light bulbs of discovery that will never switch on, all the radiant smiles of pride that will never burst forth, all the moments of insight that will never unfold, all the experiences she’ll never enjoy.  I feel the weight of all the years she will never have, and they may yet crush me.

My beautiful, bright-burning girl, my little spark.  I wanted so much to watch you grow and learn, and to see the world made new through your eyes.  I would do almost anything to restore all that to you.  Give you my own years, if I could.

So many nevers.

In Memoriam

Rebecca Alison Meyer
Ahuva Raya bat Kayla
7 June 2008 – 7 June 2014

Rebecca Alison Meyer, adored daughter of Kathryn (née Fradkin) and Eric Meyer.  Beloved sister of Carolyn and Joshua.  Loving granddaughter of Arthur and Cathy Meyer, Steven and Sandy Fradkin, and the late Carol Meyer and Ada Fradkin.  Rebecca was a cherished niece, cousin, god-daughter, and friend.

Services will be held Thursday, 12 June 2014 at 3:00pm at Anshe Chesed Fairmount Temple, located at 23737 Fairmount Boulevard, Beachwood, Ohio.  Interment will be at Mayfield Cemetery in Cleveland Heights.  The family will observe Shiva at their Cleveland Heights residence Thursday (following services) until 9:00pm; and then Friday, Saturday, Sunday, Monday, Tuesday, and Wednesday from 3:00pm–7:00pm.  A brief minyan will be held Thursday night, and Saturday and Sunday at 2:30pm.

The family requests charitable donations be made in Rebecca’s name to the Philadelphia Ronald McDonald House or the St. Baldrick’s Foundation.  They further request that those who attend the services and are comfortable wearing purple do so in honor of Rebecca and her favorite color.


If you have a mind to be there, please know that you are welcome—adults and children alike—to the service, interment, and Shiva.  Community has sustained us, and anyone who wishes to be there should be there.  Those traveling to attend should look to the Chagrin/I-271 area for lodging, which is very near Anshe Chesed and near to our home as well.  The service may be live-streamed—apparently that’s a thing our temple does these days—but I can’t be certain that the technology will cooperate.

I will update this post as necessary.

October 2014
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