Posts in the Rebecca Category

I Love You, I Miss You

Published 9 years, 9 months past

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

Published 9 years, 9 months past

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

Published 9 years, 9 months past

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.


So Many Nevers

Published 9 years, 9 months past

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

Published 9 years, 9 months past

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.


The Thief of Light

Published 9 years, 9 months past

When Rebecca was almost 17 months old, she had her first real Halloween — the year before hadn’t really counted, since she spent the whole evening sitting in her bouncy seat dressed as a chile pepper.  It was a big occasion.  We dressed her in her Tigger costume and sat on the front porch with the bowls of candy we’d prepared for all the trick-or-treaters to come.  She loved candy and was thrilled to be sitting with her big sister and all that sweet stuff, even if we did keep telling her not to eat it.

Right on schedule, the first group of trick-or-treaters came up the front walk.  Carolyn, who loves giving out candy far more than she does receiving it, deposited a few pieces in each bag.  Rebecca watched this whole process very intently.  She watched the kids walk away, and saw that another group was headed up the front walk.  She looked at Carolyn, then the approaching kids, then down at the candy bowl in her lap.  Back up at the kids, then back down at the bowl.

And then she leapt up and took her bowl of candy to a far corner of the porch, hunched over her candy, defying anyone to take it.

Now if you offer her candy, you might get a nod or just a shrug.  Taking it from her elicits no reaction at all.


While she was never a super-chatty child, Rebecca was verbal pretty early and always happy to express herself, especially in disagreement or, really, any other form of opposition.  She was never shy about speaking up, a trait we subtly encouraged even as we tried to direct it.  If she thought you were being silly, she’d say so.  “Well that’s just lame,” she’s become fond of saying in the last few months.  Always with a little smirk, unless she really was angry.  The Brits would say that she absolutely loved taking the piss out of everyone around her, and loved even more that she could get away with it by making her target laugh along with her.

She barely speaks now.  Early in the day, we’ll get a few short sentences in response to questions or observations, but she almost never speaks on her own initiative.  A lot of her spoken answers are a clipped “sure”, delivered in a flat, almost bored tone.  Most of her communication with us is in the form of head shakes, nods, and shrugs.  Toward the end of the day, they become so subtle that only Kat and I can be sure what she meant.


Rebecca was always athletic, running and throwing like a much older child.  Like a boy, we would have said in my unenlightened youth, but it was never really like that.  Like a gazelle, I once thought, knowing very little about actual gazelles.  She just threw hard and well, and ran hard and fast, and loved to do both.  I have pictures of her sitting on a trapeze bar, holding the ropes, and her posture looks like that of a seasoned circus performer, sinewy and controlled and poised to do great things.  She excelled in gymnastics, to the point that last summer they moved her up to an older class, placing her on track to join the competitive gymnastics team.

Now she can barely stand upright.  When she has enough energy to walk, she has the slow plodding gait of a clumsy toddler, weaving in unsteady curves from side to side.  When she reaches for something, always so slowly, her hands visibly tremble.  The most activity we see in her comes from obsessive, repetitive motions, pulling over and over at a loose thread or worrying the beads on a bracelet or picking tiny crumbs of food off a plate.


Rebecca delayed potty training mostly because she knew we wanted her out of diapers.  If we hadn’t encouraged it, she probably would have done it sooner.  But she put it off, and put it off, just because she could.  When she finally did, though, she was done.  There was no night-training period, and hardly an accident.  She just gave up diapers one day, on whatever impulse made her decide to do it, and never needed pull-ups after.

Until now, because she’s lost almost all control of her bladder and bowels.  At first she was mortified, but now the most she registers is a distant sort of anger at us when we change her.  We have to change her several times a day, and she just lies there, staring vacantly at the ceiling until we tell her we’re done.  Then, sometimes, she moves her eyes to look at us and wait for us to help her up.


She was full of energy, our Rebecca.  She was always dancing through life, Kat used to say, singing her favorite songs when there was no music to be heard and making a walk on the sidewalk into a skip-steppin’, butt-wigglin’ festival of joyful movement.

Now she sits inert for hours, staring off into space for long stretches of time.  We have to say her name loudly, and sometimes move her head to face us, before she suddenly snaps back.  Her eyes focus on us, the eyebrows raise a bit in query.  We ask her if she wants this or that, sometimes more than once, before she responds.  Sometimes, if she’s more with it, she’ll sit inert and look at one of us.  When I gave her a bath tonight, she sat up in the tub, but as the water rose, her legs floated upward with it, slowly tilting her body backwards until I had to put a hand on her back to keep her upright.  And the whole time, she stared half-vacantly at the chromed overflow drain cover.  At her reflection in it.  At the person there, who I cannot be certain she recognized as herself.


Everything we felt so fortunate to have kept, all her intact neurologic function and physical health and vitality, her ineffable sun-bright spark, have been leached away.  She is dying by slow millimeters, sinking further and further into a miasma of lethargy both physical and mental.  All her emotions crushed flat by the rising pressure in her head.

For all that, she is still Rebecca.  She shakes her head no when she knows we want her to nod yes, and if there’s no smirk to go with it, maybe we can see the faintest echo of a crinkle around her eyes.  When we verbally fence her to the point that no isn’t an option, she just looks at us as if she has all the time in the world to wait out our interest, her eyelids slid just a fraction shut to register her disdain for our feeble attempts to outwit her.

At bedtime, Kat read Rebecca “Madeline”, a favorite they’ve long shared.  Rebecca was so drained that she was basically asleep before we put her in bed, but as Kat started reading, Rebecca’s eyelids slid partly open, her eyes rolling a bit before the lids fell shut again.  Her eyes kept cycling through this, over and over, as Rebecca fought to stay awake enough to hear her mother read her a beloved bedtime story.  She kept fighting until the closing passge:

“Good night, little girls!
Thank the lord you are well!
And now go to sleep!”
said Miss Clavell.
And she turned out the light — 
and closed the door — 
and that’s all there is — 
there isn’t any more.

And as the last syllable passed Kat’s lips, Rebecca’s eyes stilled and she sank deep into sleep.


She lies sleeping on her back, her arms at her side as though not just asleep, but actually unconscious.  She has always been a side-sleeper, ever since the day she was born.  Now she lays inert, her head straight on her pillow, as if rehearsing for the casket she will never occupy.  But when a friend came in to give her kisses, she turned her head slightly, her brows drew together a bit in annoyance, and she folded defiant arms across her chest — still sleeping.

Her pulse is still strong and regular, and her breathing is slow and steady, the calm notes of a child at rest.  She relaxed her arms a while ago; they still lie across her chest, but separated a little bit.  Her jaw has stopped constantly working in her sleep, another new symptom we don’t know how to interpret.  Maybe she was dreaming of chewing gum, one of her favorite things in the whole world.  Maybe it was something very different, and much worse.  It still happens every now and again.

Earlier tonight, I was convinced by all these little clues, and a hundred more, that she would die tonight.  Now I’m not so sure.  The slow rhythm of her breathing gradually carried me from stupefied terror to a quiet reflection.  Now, as I stand guard over her sleeping body, I can look at her still, beautiful face without fear.  I can believe that she’ll wake tomorrow, no more herself than she was today, maybe even a little bit less so, but still going.

Still fighting to stay awake, stay alive, stay with us.


In Shock

Published 9 years, 9 months past

Today’s MRI showed that the CT scan two weeks ago was inaccurate.  The tumor has grown significantly, and two of the flare sites are larger.  We’re out of the p28 study.  There are no other studies we or our doctors know of that can help.  Surgery is off the table.

Rebecca has a few weeks left at best.

We’re starting steroids to reduce swelling in her head, in hopes of restoring her to something like her old self.  And we will make whatever time is left as fun and amazing as we can for Rebecca and Carolyn and Joshua.

I built a memorial page for my mother, eleven years ago.

I’m not ready to make one for my daughter.


Deep in the Forest of Fear

Published 9 years, 9 months past

Rebecca’s spark has dimmed, and we don’t know why.

On days we go to Pittsburgh, she sleeps the whole way there, is pretty normal at the hospital, and then sleeps some or all the way back home.  When we get home around mid-day, she usually stumbles to the couch and takes a long nap.  She might have a few normal hours of wakefulness starting mid-afternoon, get energized around dinner and bedtime, and then go to sleep for a full night.  Or she might spend those hours not doing much of anything except lie awake.

On days Rebecca goes to kindergarten, she usually walks there and has a normal morning.  And then, right around lunch time, she usually runs out of steam.  We had to go pick her up the other day because she’d fallen asleep at her desk, deeply enough that normal attempts to rouse her got no response.  (Normal, as opposed to “THERE IS A FIRE WAKE UP NOW!”)  We got her home, and she stumbled to the couch and took a long nap.  Once that was done, she didn’t do much for the rest of the day.

Even when she’s awake, at least half the time she seems distant, disconnected.  Much of the time she’ll just lie on a couch or a lap, not moving much, not doing anything but staring off into space.  You can catch her attention and get a warm smile or an air kiss when you do, but that’s it.  She’s there, and yet not there.  At her most energetic now, she’s much more subdued than she has been in the past.

And we don’t know why.

We’ve ruled out seizures.  The EEG showed absolutely no trace of any seizure activity, even when she just sort of stopped and stared off into space, as she does so often these days.  Everything was completely normal, diagnostically.

We think we’ve ruled out pressure due to tumor growth, given the latest CT.  We’ve moved up her next MRI, and expanded it to most of her body, to see if there are tumors elsewhere, or if the CT somehow missed something.  Maybe a thalamic tumor.  Maybe not.

We can’t definitively rule out a virus of some kind.  Her viral panel was negative, but it’s a limited test.  Everyone in the family has had a virus that drained us, as have some of our friends, but most of us recovered in a few days and Rebecca’s been like this for two weeks now.  If it’s a virus, then something is keeping her from recovering from it.  But her blood work is normal, her immune system apparently fine.

We can’t rule out the possibility of side effects from the p28 treatment.  Rebecca is the 38th child ever to receive this treatment, and one of a very few who’ve gotten it at her dosage level.  Maybe this is all just a huge side effect.  Except it’s been almost a week since her most recent treatment, and there doesn’t seem to be much, if any, improvement.

In the absence of certainty, it’s hard not to descend into fear.  Maybe none of these things are what’s wrong, we try not to think.  Maybe she’s just dying.  It’s a little like being deep in the heart of an unknown forest at twilight (or is it sunrise?), unsure which way to turn and what’s really dangerous.  A snake could be in that log.  A rotten tree might fall.  There might be a bear.

I grew up in forests; Kat’s totally a city girl.  But even I can’t help feeling like Rebecca is leaving us slowly, a tiny little bit at a time.  Intellectually, I know that may not be so, but in my gut I feel it.  I look at her lying limply on the sofa, her eyes vaguely focused on something a thousand miles away, and my stomach twists icily.  I want to shake her fully to life, drag her back to us, scream until the spell is somehow broken.

Instead, I take her hand and smile at her.  I sign “I love you”, tapping it to my heart as we always have in our family, to see if she’ll do the same.  Usually, she speaks “I love you” back, because that takes less energy, less movement than signing.  Her eyes crinkle with warm affection when shes says it, looking into my eyes, holding my gaze for a few moments.  Until her gaze slides away and loses its focus on the here and now.

If Rebecca were cranky and irritable from exhaustion, that would actually be easier on us, because that would make sense.  That would be normal.  It’s the quiet inertia that really, deeply scares us.  Whatever our heads may derive from looking at all the maddeningly incomplete data, our hearts are filled with fear.  We’ve tried to push it away, and also tried to accept and acknowledge it, and neither approach seems to help.  The fear persists.  We’re afraid that her light is very slowly going out, that she’s fading from this world, that she’s leaving us.

And we don’t know why.

Perhaps posting this publicly will make all the symptoms go away, and I’ll wonder some day what I was so bothered about.  I hope so.  I’ll absolutely take feeling foolish in exchange for having her be herself again.  I’ll even accept never knowing why she’s been like this.  Just as long as we can put this forest behind us.


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