Forever and Ever

Published 3 months, 2 weeks past

We had been awake since one in the morning.  She had been unconscious since three in the morning.

We’d been taking turns sleeping with Rebecca in the nights leading up to that day, six years ago today, and on the final night it had been my turn.  I was woken by a sound, from her or by her I still don’t know, and I saw that she was awake.  And had vomited.  And still could barely move.  And I knew this was it.

Kat called the hospice nurse to come and give her the drugs to take away the pain, and we waited, sick with despair and doing everything we could not to show it.

We gently held her as she trembled.  We kissed her head through her curly hair, told her that we were here with her and that she could go, not to be afraid, we’d be there with her soon.  Lying to her, now, finally, so far past the point where truth was kind or helpful, telling her whatever we thought would take away even a tiny slice of the fear.  Shamelessly, literally shamelessly, weaponizing all the trust we had built up over the years by telling her the truth her whole life, to ease, if we could, the last hours of it.

Her eyes were wide, even for her.  They barely blinked.  We could still catch her attention, but it was so much harder now.  The trembling increased, and then, eyes somehow still wider, she started to claw frantically at her temples, trying to dig out the thing that was killing her.  Or just to somehow relieve the pain.

I had to restrain her, catch her small wrists in my hands, wrap my arms around her arms and shaking small body and brokenly tell her no, stop, I know, I know, I’m so sorry, we want it to stop too, I know, we love you.

The nurse was finally there and administered a lot of narcotics.  Not enough to kill her outright, but enough to take away the pain.  And consciousness.  I almost asked him to double the dose, or triple it, whatever was necessary to end things quickly and painlessly.  I stopped only because I realized the position that would put him in.  And that if it were an option, he’d already have offered it.

Waiting for the drugs to work, we read her her favorite stories, holding books up one at a time and asking if she wanted this one, this one, this one.  Her head would jerk in a prototype of a nod, and we’d open that book and read, taking turns, voices somehow as clear and steady as if we were doing normal bedtime stories.  I made a list as we went, because I knew I’d want to know later.

  1. Mike Mulligan and His Steam Shovel
  2. How the Sun Was Brought Back to the Sky
  3. Madeline
  4. Jump Rope Magic

Halfway through that last, the drugs finally took hold, and she slipped into unconsciousness.

Or really, semi-consciousness: some part of her was still aware of her surroundings.  Every time Kat shifted or drew away for a moment, Rebecca would whimper quietly, and only stop when she could hear and feel Kat reassuring her.  She only did so for me when I got up from the bed entirely.  I would assure her that I would be back in a minute or two, that I wasn’t going away for good.  That was enough to quiet her.  She trusted us so much.

Shortly before dawn, we started sending texts to loved ones.  This is it.  If you want to say goodbye, you need to come today.  She has hours left.  And asked them to spread the word, so others would know to come.

Just after dawn, at 7:22 in the morning, she crossed another threshold.

Happy birthday, Rebecca, we told her with quietly trembling voices.  You made it.  You really did.  You’re a great big six year old now.  We love you so much.

There was no response.

So many people came to see her one last time on her sixth birthday, drifted in and out of her room, a slowly shifting cast of characters supporting her, us, each other, themselves.  I don’t really remember how it felt then, barely remember who was there and who was not, but looking back now it’s like those movie scenes where one person is still, sharply in focus, while long-exposure blurs of people moving around them draw a contrast between what matters and what is incidental, between transience and permanence.

Sometimes, what is still is the most transient of all.

By late afternoon, there were signs the drugs weren’t enough, that she was going to start seizing despite everything.  Which in turn meant there was a risk she’d come back to a consciousness filled with nothing but incomprehensible pain.  We weren’t sure what we could do.  She’d been lying on her back all day, so nearly motionless, body flaring with fever, shallow breaths coming and going in a rhythm I kept falling into, the way you do when your child is in distress.

Kat looked across at me and said, She’s a side sleeper.

We rolled Rebecca onto her sleeping side, her right side, and her breath hitched, drew in slowly, and then flowed out deeply, contentedly.  Her breathing stayed slow and deep, the rhythm of sleep, comforting, except it gradually got slower and slower and slower.  Stretched out more and more over half an hour, eventually slow enough that when it stopped altogether, we almost didn’t notice.

We checked for pulse.  Breath.  Pulse again.  Nothing.  For a minute.  Two.

A sound came from my throat that I know now is the true sound of ultimate suffering—and as if startled by it, she drew in another breath, choking me off.

We begged her to stop fighting, told her it was okay to go, we loved her, we loved her, we loved her.

A few minutes later, pulse and breath stopped again.  And Rebecca was gone forever.

Rebecca, who we knew so well.

Rebecca, who we had barely gotten to know.

Rebecca, who we will never get to know.

Time has moved on, as we have, and yet some parts of us have not.  Some parts of us are caught there, six years ago today, able to do nothing but watch her slowly slip away, literally helpless to do anything except try to soothe her through the haze of drugs and thickening darkness with our words, our touch, our presence, our love.  Parts of us frozen in that passage, unchanging.

Like Rebecca is now, forever, and should not be.

When I was One, I had just begun. When I was Two, I was nearly new. When I was Three I was hardly me. When I was Four, I was not much more. When I was Five, I was just alive. But now I am Six, I’m as clever as clever, So I think I’ll be six now for ever and ever.

—‘Now We Are Six’, A.A. Milne


Comments (33)

  1. Love and hugs.

  2. Still so sad but beautifully shared.

  3. So sad for you all.

  4. Thank you for sharing this, Eric. The story of Rebecca’s passing has a deep beauty, because it shows the love that was shared between Rebecca, Kat, and you.

    Steve

  5. I’m sending only love and hugs and gratitude for the tiny bit of Rebecca I got to know and your huge hearts which ushered us through this unwelcome journey.

  6. Love

  7. Sending you all my love.

  8. You are each of you, all of you loved. So loved.

  9. Someone very close to me died around the same time. Unlike you I had been with her for forty good years. I still keenly feel the pain of my loss. However, in comparison to your loss I can only glimpse the intensity of your pain.

  10. Bless you for sharing this, Eric.

    All of my love,
    Steve

  11. May you and your family have comfort and peace.

  12. I’ve had the good fortune of “knowing” you across a digital gulf of sorts and respecting your contributions for years now, but whenever I read your name or see you pop up in mutual circles I find the thing I respect and aspire to the most is your humanity, grace and empathy. I am so deeply sorry for you both and hope you are able to find some solace in the support of a community you have been so integral in building.

  13. My thoughts are with you.

  14. Reading this was beautiful and devastating, and I am grateful for having the opportunity to ready it. Thank you for being such a kind and open person.

  15. Sending love to you.
    Beautiful way to honour the memory of your beautiful daughter.

  16. I think about y’all often. You and your family are forever always in my heart. I can’t imagine the pain then and the sorrow now. I wish you comfort in your family and friends today and every other day.

  17. It looks like she was a strong girl.
    Thanks for sharing this.

    I’m a father of an almost 6yo and his twin brother stayed with us only for a day.

    Feeling stuck in the past and feeling sad about what it could have been are thoughts hard to cope with.

    As he’s about to become 6yo I can fully realise what beautiful little big person you had to say goodbye to.

    I hope you will be strong enough and keep her memory with you.

    Love and hugs.

  18. I send you love and prayers for warmth and peace. 💜

  19. Love, hugs and peace to you and your family.

  20. Purple reminds me of Rebecca and you. #663399 💜

  21. I have always been amazed at the grace you and Kat have showed at every step of your journey in losing Rebecca. You are both so strong.

  22. Thank you for sharing another window into Rebecca’s life. Beautiful and eloquent story. We miss her and love you! Rachel fondly remembers and cherishes the birthday rocket car ride and the opportunity to sit next to her in the first row! We will never forget getting that text Saturday morning…

  23. 💜

  24. i wept, heart wrenching, thank you for sharing your experience, i know there is nothing that can repair this unimaginable tragedy, but i hope that remembering and sharing the joy and love provides some solace.

  25. Thank you for sharing this. I happened onto this profound document accidentally. I am sorry for your loss. My prayers are with you on this sad anniversary.

  26. Love for you and your little girl.

  27. I normally have just known your site from the HTML encoding-decoding page — but a random keystroke today took me to your main page, where I read this utterly devastating and yet utterly beautiful tribute to your daughter. I don’t know what to say, except that if it is possible to immortalize someone simply by the act of beautiful writing, you have done so here.

  28. Love endures forever. I hope time brings you peace, day by day.

    Sincerely,
    Matt Russell

  29. Sending you all so much love.

  30. Man, I cried while reading the first lines… I am so sorry for your loss. Six years… And six years… :-(

    We don’t know each other (I’m just an occasional reader of your blog for years now, I wrote my first CSS lines because of people like you) but I am trying to send you all my love now.

  31. I was heartbroken to read about your loss of Rebecca. Her light still shines on through your thoughts and memories all these years later. I came across your story after stumbling upon the named colour rebeccapurple while setting a background-color. So glad this tribute was accepted by W3C because it brought be to her story despite already being familiar with your website.

  32. I cried my eyes out reading this.
    I can not fathom what you’ve gone through.
    Beautifully written.

  33. I have known you as an online figure since the early days. I have followed your work, your web-design contribution to the world, and have learned much from them. Little did I know you became a father at the same time as me. My condolences and commiserations go out to you and your family for your incredible loss.

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