The Thief of Light
Published 10 years, 6 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.
Comments (53)
I don’t know if I have commented before, but you don’t know me.
I am at a loss for words – but this is a beautiful account of a grave injustice.
It is highway robbery, and we are being robbed of our children.
Sending you love.
Ellen
I didn’t cry until the very end of your post.
You all have done so much since that initial session and diagnosis last summer. I expect that time interval has seemed both endless and too short. Do you think of that time as bonus time? You’ve indicated Rebecca only lived past that because of improbable circumstances. Or, does some fraction of you wonder if losing her then would have been in any way easier? I apologize if that is a hurtful question when we all know losing her is just awful and wrong.
Will there come a moment when you and Kat explicitly give Rebecca permission to let go? She wants to live. Everyone wants her to live. Sometimes a person needs to be told it’s ok to stop.
Thank you for letting us be present with Rebecca, and with you, all along this journey.
Oh. Oh. Oh.
This is the most beautiful writing I have ever read. What an incredibly ugly place this world can be. I am just so so sorry. I am at a loss
Dear Eric, you leave us all wanting so much more of dear Rebecca. Sleep softly, Rebecca.
I read it all. I am listening.
You don’t know me, either–friend of Ferrett and Gini’s–but, I’ll sit here, with you and everyone, and read everything.
I commit to remembering it. Her.
Peace and strength be with you. Love be with you.
keeping you all in my thoughts.
Another person you don’t know, but who owes you a debt of gratitude for his early web education. When I see these posts emerge in my Twitter feed, I know pain is behind the link. I have the luxury to scroll past, to spare myself a momentary pang of sorrow; however, you and your family don’t—and so I don’t. The very least I can do is to bear witness and to grieve alongside you and yours for your brilliant daughter, taken far too soon from those she loves. My wife Jessica, my daughter Eve, and I feel for you; would that we could do more.
I’m heartbroken for what is being stolen from Rebecca and from you. Her struggle reminds me constantly to cherish the time I have with the people I love. I just wish she wasn’t going through this, that all of this hadn’t happened to her.
The buddhists would say a lot of comforting things about how we should live each minute to its fullest. Still, life is ugly sometimes and you cannot rationalize the pain. Again, we’re with you with our heart and spirit.
You don’t know me. I’ve been following your blog for a few years and more closely over recent months. I have no words for what is happening. Your words are a real gift to all of us who are following. I’m a parent and grandparent but can only imagine how I would feel in similar circumstances.
Thank you for sharing, Eric. God bless you and your family.
Eric,
thank you for continuing to share Rebecca’s life with us ~ I cannot bare to think of how you as her parents, and her brother and sister, must be feeling about Rebecca’s changes every day. My heard aches to read how such a bright little spark is fading…
Crying for Rebecca ~ and crying for you all. You are in my heart.
x
I can tell how full of light Rebecca is, because through your writing, it has lit a spark in hundreds of people who have never even met her.
You don’t know me. My daughter, Emma, was a madraha in Rebecca’s religious school class. Please know, though, that I think of your family daily. You are in my prayers.
Rebecca’s spark is lighting so many flames through your writing, Eric. As always, thank you for sharing. My thoughts continue to be with you, Cat, Rebecca, and your whole family.
beautiful and heartbreaking. all of you in our thoughts and prayers.
i wish my heart were so big, that every beat that i can share can be filled with extra kindness, extra feeling, extra moments for you. i know that you and your family and Becca are sharing so deeply and so painfully. You could have chosen to be in your grief in anger. But for the courage that your sharing provides, you are truly sending out angel blessings to many who have not known how love lives. you are the prayer that we are all feeling and hoping and sensing that Becca wants to leave us with. Thank you ever so so much for your precious Angel moments. And sleep my pretty one, Sleep.
Thank you for this. Thank you for taking the time and making the effort to capture the wonder of your beautiful girl.
Thank you for letting us cry with you.
We continue to pray, but without words, really.
You don’t know me. I learned about Rebecca and your family through Ferrett’s posts on his blog. I lost my niece at the age of 5 in an accident, so I have been especially touched by Rebecca’s story. My thoughts and prayers are with all of you.
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One Last Writing On Cancer, And I’m Done For A While | Ferrett Steinmetz
[…] not even the best writer. That honor would go, as it should, to her father Eric, who has written a beautiful fucking essay on what the cancer has done to her, called “The Thief Of Light.” If you want to know what Rebecca is, then go and read it, because he sums her up far […]
I had forgotten that I have tear ducts. I remember now.
I have been following Rebecca’s story through Ferrett. It seems frivolous to mention it, but as a writer, I have to say that this was some damn fine writing. As a mother, though, my heart hurts for all of you. I wish there were something I could do to ease the burden for you.
I started reading your blog to learn how to be a better professional, but instead am learning how to be a better human. Thank you for letting us be present in your journey and connect with you and your family, however grief-filled a journey it is. I wish there was something I could offer other than gratitude and love to you, your wife, Carolyn, Joshua, and of course, Rebecca.
My thoughts and prayers are for precious little Rebecca and for you, her beautiful and loving family. May God bless you, and continue to guide you through this heartbreaking time.
We’ve never met before. I also followed the link to this post from Ferrett’s blog.
I’m so sorry this is happening. You and your family are weighing heavily in my thoughts this weekend.
Little Rebecca.
Dear Eric, I don’t know how you are able to write so beautifully and eloquently in the midst of losing your dear child. My heart goes out to you and your family. And of course to Rebecca, whose short life is making such a huge impact on so, so many.
I don’t know if I told you and Kat how much it means to me that you are sharing your struggle. I don’t know what I can do to help, I’m sure there really isn’t anything, except to send my love and prayers to you and assist you with housework, so you can spend these precious moments together. I don’t know if I should even attempt to come over for fear of disturbing you at an in opportune moment. My heart breaks for you…what else can I say.
You have such an incredible gift with words, Eric. Makes it all the more heartbreaking to read something like this. Ellie is the same age as Becca… My heart hurts when I learn of what is happening to that sassy ball of energy I will always think of when I think of Becca. Words won’t help during a time like this; and I am guessing that you are all feeling that prayers have gone unanswered. All that is left to say is that you are all in my thoughts. I am wishing most for peace for Becca and for all of you; that seems to be all there is left to offer.
I linked here from a mutual friend’s Facebook feed. Your daughter is so beautiful. Words fail – but yours don’t. I hope she can feel every inch of the love that surrounds her, and nothing else.
My heart breaks for you and your family…
Thank you for allowing us to share in your tragic journey with your exquisite words that reach the depths of our souls. Sending fervent prayers to you all for your strength in the days to come.
Bud… you got me! Pediatricians, as a rule and unless they are practicing specialists, rarely have a patient who passes. Even though my choices have perhaps given me more “practice” than my companions, my eyes are stinging for the pain you must feel in your soul to write such a post. All the times having been the bearer of terrible news and companioning parents through nearly identical circumstances, you’ve still surprised me with the incredible clarity of your descriptions and memories. Could it be that placing a portion of your distress into the words to be absorbed by the friends who read it left less for you to bear? I hope so.
Eric, I came upon your blog and Rebecca’s heartbreaking story by accident. My heart goes out to you, Kat, Carolyn and Joshua. Nothing could be harder than losing a child. Your love for Rebecca and your anguish are potent in your postings. I always think of your house as the happy family and kid-centered house on our block. Reading your words I understand now the Team Becca signs and all the visitors. Don and I are holding Rebecca and her family in our thoughts and hearts. Susan
I have no words… I almost don’t want to post. I wish I could give support and encouragement but everything I want to say seems so hollow given there is nothing I can say or do to make this better or easier for you. It is painful to watch her die through your words, I can’t even begin to imagine what it is like to be there with her in the room seeing it happen. Having buried my own child who was stillborn, I feel a sense of blessing that I did not have to watch him die; I did not have to grow to love him more through the years only to lose him. I never thought I would have relief at the way it happened. I always thought to myself that it could have been worse but your words and stories have made that so painfully clear to me. I so badly want to spare you from this… but I cannot…
What a wonderful job you’re doing here, telling your story, the story of your beautiful Rebecca. I feel honored to be allowed into this hallowed place. It’s a wonderment that you continue to report from the most vulnerable places in your heart, standing at the edge of doom. We people, and the species, are enriched and made better by your heroic effort. I do believe, too, that this record will be an enormous help to you and your family as time passes.
I wish you strength, calm and eventual peace.
Your pain is so heartbreaking. Both of you have been very strong. To share your pain with the world and maintain a balance in itself is courageous. Sometimes God seems so unfair.
Hi Eric,
We’ve met before but you almost certainly don’t remember me. I’ve seen you speak at events a few times and have always been a big ALA fan.
Anyway just over a month ago my son was born. My first child. Like so many other parents who have commented I can’t imagine the situation you and your family find yourselves in and I’m so sorry for all of it.
I was sitting in the nursery this morning, reading your tweets about Rebecca, holding my son and I just couldn’t help but think that I’ll never take for granted the time I spend with him.
A few months back you wrote a post about how this blog is a bow to send Rebecca’s arrow around the world. The line struck home and it made me think that Rebecca’s story, her arrow, isn’t just about the shared experience and the ability to archive this for the future. Her story lives on in the hearts of all the people who have a little one they care for and stop for just a moment longer to appreciate what life has given then because your family shared this tragic story.
So thank you. I know its little consolation but your openness impacted my family and I know many more.
Our best wishes for you all.
My Deepest Condolences…
May you take strength and love from all those you’ve helped over the years. Your in our thoughts and prayers.
Steve
Eric,
Having just lost a family member, the pain is still strong and it’s hard to see the life lived rather than the life lost. Your words remind me that, even in the days where the sun didn’t shine bright, they were days together. Every day, good or bad, was still a gift.
These times are so hard. There is such love in the words you write about Rebecca, and your care for her has been nothing less than determined.
You’re in my thoughts,
Alistair
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Bookmarks for June 7th from 01:02 to 12:35 : Extenuating Circumstances
[…] The Thief of Light – Eric A. Meyer: “The Thief of Light”—She was full of energy, our Rebecca. Nearly all of it has been stolen away. http://t.co/LfKb8rDWLa […]
Hello Eric,
I’m just another of your Twitter followers who you don’t know, but I was struck by your posts and couldn’t just continue on my way without sending you my sincere condolences too.
I also just wanted to let you know that reading about your terrible loss had the effect of reminding me not to take my loved ones for granted – something that I try to remember often of course, but sometimes it strikes you more forcefully, and this was one of those times. I realised that my inactions are selfish and that I need to forget about being “busy” and think about other people more often, and give them a call more often. So, thank you for helping me. I wish that I could in some way help you in return.
In this time when you are so surrounded by darkness, I hope you are able to focus on the light.
With my best wishes,
Peter
Eric, you don’t know me but a tweet made me aware of Rebecca story. She looked so smily and cute. I have no words, but i have Rebecca in my heart. So sorry.
Hello Eric,
So sorry to hear of your loss.
Yong
Dear Eric and Kat,
My heart breaks for you. I am so very sorry for your loss. I wish there were words which could lighten your grief. Alas!
Dear Eric,
Rebecca’s story touched me so much, so many others … My heart goes out to you and your wife for this untimely lose.
I’m so sorry. You, and your wife, and all of your children, are in my thoughts.
I am so sorry. I hope you find some comfort in the memories and ongoing love. You and your family are very much in my thoughts.
“Cartwheels in Heaven” – Sad to learn the news of your sweet Rebecca. My daughter Sidney was one of her kindergarten schoolmates. When Sidney and I talked about Rebecca on 06/07, having no idea she had passed, Sidney was very excited for Rebecca because she would be going to heaven where you never get boo-boos on your knees when you try to do cartwheels, and nothing hurts anymore. However, after a moment of reflection Sidney said she was very sad for Rebecca’s mommy and daddy and sister and brother… and especially Ruth, because Ruth “really really loves Rebecca and that will hurt”. Meyer family, you don’t know us but we are praying for you with heavy hearts. And as for Rebecca, we think she might just have been doing cartwheels in heaven on her sixth birthday.
Eric, I am so so sorry for the loss of your daughter. I lost my mom to leukemia 4 months and 8 days ago. We were best friends, we lived together, we had so much fun together. In the end, I was taking care of her, like she was my own child. It hurt to see her in pain, and it hurts to know she’s not around. I really feel for you. I thought the same thing you did, when you watched your daughter sleep, and wondered if tonight was the night. Grieve for your daughter. That’s all you can do. And it’s ok.
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rebeccapurple: New CSS Color Name Now Supported In WebKit, Blink and Gecko
[…] know already, the rebeccapurple is a tribute to Eric Meyer’s adored daughter Rebecca, who passed away […]