All The Love In The World Is Useless. All The Anything In The World: Also Useless.

There is a little girl.  If she is lucky, she will hit six before the brain tumor in her head kills her.

It won’t just kill her, though.  “Her” is an abstract, a body hitting the floor.  Her is Rebecca, and Rebecca is my glorious little thug.  Rebecca the stubborn, who at one time when asked to say “Thank you” to get her favorite dessert from Aunt Gini, steadfastly refused to say anything despite half an hour of coaxing.  She didn’t get the dessert, but she gained a curious kind of respect from us all – maybe we didn’t understand why she refused, but the kid had made a decision and stood her ground, never throwing a tantrum, simply refusing to give in to this adult peer pressure.

Rebecca is my glorious companion in untruths.  I take it as a point of pride to lie, and lie flagrantly, to small children, just to introduce them to the idea that not all grown-ups tell the truth.  So I tell increasingly large and crazy whoppers until it all falls apart and they stare at me in half-horror, half-bemusement, saying, “Uncle Ferrett!  America was not founded by sentient otters!” and I say, “Show me where it says otherwise.”

Rebecca, however?  First time I tried that trick with her, she just gave me the stinkeye.  “Yeah, right,” she said, a liar able to spot one… but kept returning, asking me questions about things to hear my crazy lies with great interest.

Rebecca shows me her love not with words, but with little pokes and teases.  The Meyers are a very kind and loving and fair family.  They do not trade in insult.  But Rebecca longs to, and she knows I’ll give as good as I get, so she will come up to me and tell me, “Those are silly nails,” and then I will say, “No, they are glorious.  You are the one with ugly nails.”  And then she will say “They are purple!” and shove them in my face as if “purple” was the most wonderful thing in the world, and then I will say that mine aren’t chipped at the edges, and then she will be dead within the month.

That is not a lie.

Dead within a month, probably.  Hard to tell with cancer patients: anyone who gives you a firm deadline is trying to make it easy for you.  But the brain tumor nestled inside her skull has grown to twice its size, and she has already run low on energy – a little crazy fireball flinging herself around the lawn simply watches TV now, too tired to move – and oh, how her fingers tremble when she eats her string cheese.

She’s grown a couple of inches.  The rest of her body doesn’t know she is about to die, so it’s proceeding like everything is normal.  They had to buy her new clothes, if I recall.

Dead.

SHE

IS

FIVE

YEARS

OLD

She will probably cruise across the six mark next week, on her birthday on the 7th, but how much longer she’ll get?  Unsure.  Every chemotherapy we threw at her, every experimental treatment, has failed.  At this point, the only thing we can do is maybe cut into her brain and try to remove part of a tumor that refuses to stop swelling, a tumor entangled with all of her thought centers, and it is almost certain that this would terrible things to Rebecca’s remaining days.

And when we got that diagnosis, the one where the doctors gently all but said, “It’s over, go home and love her for the rest of her life,” the silence was a shriek.  It was a two-hour drive back from Pittsburgh – we left a little later because all the doctors came to hug Rebecca, who they loved, but realized they would never see again once we took her back to Cleveland – and that trip was deep-sea grieving, silent, pressurized; if we had let ourselves weaken in any way, we would have been crushed under an ocean of salt tears.

We cried in little luxuries, clenching our fists, scrubbing the tears from our cheeks like they were alien invaders, and Rebecca slept in the back because Rebecca, vibrant and feisty Rebecca, was tired.  So tired.  And not just brain-tired, though I’m sure the swelling intracranial pressure had a hand in it, but to shove a five-year-old in front of her mortality is a terrible thing.

You know what happens when a kid dies?  She worries about her parents.  She’s told Eric that she is terrified that her death will hurt Mommy and Daddy forever… and it will.  She’s cried because her younger brother, who is sunny and three and her best friend and mostly-unable to fathom what’s going on, will not remember her.  She was upset this morning, bitter at her sister and brother because they get to stay and she doesn’t.

All of those thoughts will vanish.  Deleted.  Like a virus-eaten file, everything that Rebecca is and could have been was gone, and fuck the heavens there are not words enough.

And minutes after the diagnosis, after Gini and I had offered to leave the room so Eric and Kat could tell Rebecca that the medicine hadn’t worked and she was going to die – imagine having that talk with a kid in a stroller – I was very good.  I did not punch walls.  I did not throw chairs through windows.  Mostly because it wasn’t the hospital’s fault.  They had done everything they could, assisted by Kat’s able medical knowledge (Kat is a doctor, and the conversations she had with doctors in my presence spiralled rapidly out of my casual comprehension).

But I thought of taking a bullet to my head.

I had never really understood the concept of dying for another human being.  I mean, I knew people did it, but I never knew anyone in serious enough trouble that it was an option.  My grandmother and grandfather were senile, yes, but they’d lived good long lives; my Uncle Tommy, my sainted Uncle Tommy, had survived hemophilia, HIV, and hepatitis, so I always thought he was invincible until pancreatic cancer took him.

But Rebecca.  I would clasp the barrel to my head, if the person pulling the trigger could guarantee her life.  I imagined saying apologies to Gini as I did so, but Gini?

Gini would have also been there for the bullet.

And Eric and Kat might well have been shoving me out of line.

I knew of at least four people who would give their lives for this child, this darling truculent stubborn-ass snarky girl with the wild hair, and there was no one to take the offer.  We stood in the great hallways of the place with the most power in the world to do this, all the might of American medical research aimed straight at this child’s brain, all our technologies marshalled to save her, and the time was short and this tumor wants to kill her inasmuch as it mindlessly “wants” anything, and…

…I slumped next to a Batman playhouse meant for other children.  I didn’t know how many dead children played with that Batman playhouse, but I knew the number?  Was nonzero.

This was where society did everything they could, and society failed.

There is no force on Earth that can save Rebecca.  That is a cold thought.  That is a thought that drains the water from you.  Whenever we hear, “There’s no force on earth that could,” we’re trained by movies to think the superhero will be coming, the brilliant scientist will be coming, the miracle will be coming, but no.

We have scoured everything on Earth, and the Earth is insufficient.

And so everything we love about Rebecca will fade to photos.  And we will go on cancer walks, walking with the photo-ghosts of other children, raising our dead high to marshal funds in the hopes that maybe future children can be saved.

Yet the only way we can save future children is to rearrange, discover, and build things that have not yet been built.  It’s some comfort to think that we’ve raised tens of thousands of dollars to help future children, and maybe some of that money will pay the salary of a smart woman who cracks the code on the anaplastic astrocytoma, and then there will be no Rebecca.

Yet there is nothing now – no love, no science, no willing God – that can save her.  We join the ranks of millions of other humans who have watched helpessly as disease ravaged their child.  It’s an old war, perhaps the oldest, and in one sense Rebecca is just another casualty.

But she is ours.

And there will be love.  We will care for her.  We will bring her ice-pops, and carry her when she is too tired to walk, and brush her hair, a huge pyramidal stack of love – the Meyers support Rebecca, we support the Meyers, and last night I had at least twenty people who didn’t know the Meyers supporting me.  This is the beauty of mankind, and don’t you dare tell me that humanity is not kind; yes, we have moments of savagery, but I watched the faces of the doctors in the children’s oncology ward yesterday, the cost of it engraved in their faces, and yet they showed up time and time again to battle diseases that they often lost, just in the hopes that one of them won.

I grabbed the man who told us that Rebecca would die, and thanked him for doing it.  Not for the message.  But because someone had to tell us, and I knew what toll that must take on him, relentlessly informing parents that there was no force on Earth.

And yes.  Love is wonderful.  Love will make this better.  Love will ensure that we get through this, as when it is all done we will cling to each other like survivors on a wrecked boat, reaching hand to hand, seeking warmth, trying to repair whatever wreckage is nearby into survival skills.  We may, in time, rebuild.

But all the love in the world cannot save Rebecca.  All the medicine cannot.

My darling goddaughter, my special little girl, will pass, and you’ll forgive me for being a little bitter about that.

(EDIT: If you want to help, then feel free to donate to the CureSearch for Children’s Cancer.  I’ve given them $500 of my own money, at a minimum; we may not save Rebecca, but that’s no excuse to leave other potential children behind.)

16 Comments

  1. Clodia
    Jun 4, 2014

    I weep for Rebecca. I weep for her family and friends. I weep for you.

  2. ellixis
    Jun 4, 2014

    I’m sorry. I’m so very sorry. I barely touch the surface of your grief and theirs, but I feel it, dimly, and it is huge and terrible. I hear and acknowledge your pain.

    • halfmoon-mollie
      Jun 4, 2014

      it sucks. Big time. that I am sorry doesn’t help at all, I know.

      but I am.

  3. Billy Moreno
    Jun 4, 2014

    Left my job at WoTC in no small part to be closer to my 7-year old niece. After being close for the first few years of her life, being across the country was challenging. I can only imagine what you guys are going through. And even that hurts so deeply.

  4. dharawal
    Jun 4, 2014

    I am rendered speechless. All love to you all.
    So much love.

  5. Camellia
    Jun 4, 2014

    I lost a cousin to a brain tumour, she was also a child, not much older. So that her siblings would not forget her, I helped her make videos in secret – she made me promise. After she passed, the videos helped. Her sister is now 8 – the age she was when she passed, and watching the video left for her makes her feel close to her still. If it is right for your family to do so, perhaps something similar would be useful.

  6. Emily Baisch
    Jun 4, 2014

    Oh, hon. *hugs*

  7. Christie
    Jun 4, 2014

    Oh, Ferrett, I’m crying for you. I’m so sorry.

  8. Sara Harvey
    Jun 4, 2014

    2014 needs to stop. Too many children in my life and the lives of the people around me have died or are dying.
    I’m so done with it. I am running out of tears, which is a terrible hiccuping feeling in your eyeballs when you keep crying but your body cannot produce any more liquid.
    My heart breaks for you, Ferrett. I don’t know if it is better to suddenly wake up one day and they’re gone, or to watch the whole thing unfold before you, knowing you have the chance to say goodbye but having to to so knowing the end that is coming.

    But I know what you mean. That depth of yearning to trade your life for theirs because you have had the joy and the pain and the experiences you want them to have and you would give it up so easily, if you could give it all to them.
    And no, all the love and the tears and the praying and the yearning doesn’t ever bring them back. and it takes a damn fucking long time for it to even get easier. It’s ok if you’re not thinking about it, but there’s never a point in the first few months after that you are not thinking about it and them and all the things you’d be doing or saying or planning with them. And then you have those moments where you;re not thinking it, and realize it and the grief comes back but then it’s all covered with guilt because there was a second that you forgot. Except that you didn’t, not really. The mind tries to cover up some of those sharp memories so we don’t keep stabbing ourselves on them and bleeding. So remember that when you get there.

    And it sucks and I’m so sorry Ferrett. We all prayed so hard over here. But even that doesn’t always work and life is unfair.

    My heart breaks for you, for you now staring this down, for you when it finally happens, and for you in the days and months and years to come.

    I’m sorry. I don’t know what I can offer but my love and support from afar. And if you just want to sit on the phone or on Skype and cry together until we run out of tears I can do that too.

  9. Jax
    Jun 4, 2014

    I have nothing I can say, and I am too far to come and cook and help in those ways. I just…

    I read the whole thing. I’ve said it before, but it’s all I can offer: you all have all the love I can send.

    I’m so sorry.

  10. Fred
    Jun 4, 2014

    I read all of this with tears running down my cheeks, then when my partner came into the office, she read it too with similar results. I lost my dad a bit over two years ago, yeah, more cancer, but as painful as that was … and still is, really … I can’t begin to comprehend what you and the rest of the family are going through here. No one should have to go through this – from either side of the process. “I’m sorry for this,” doesn’t even start to cover it.

    Neither I nor any of my sweeties have children, but I think I’ll give my niece an extra hug next time I see her.

  11. Jesse Haxton
    Jun 4, 2014

    Thank you for sharing. Thank you for loving. Thank you for these tears.

  12. Amber Brown
    Jun 5, 2014

    No idea what to say. The tears I’m crying are nothing compared to what’s certainly happening in your heart.

    I’m so sorry this happens. It’s bullshit and unfair and we all feel so helpless.

    🙁

  13. Lasivian
    Jun 5, 2014

    **hugs** So sorry to hear about this.

  14. Linda Czernysz
    Jun 6, 2014

    I don’t know you, or Bekka but I do know Laura Block ( I live on the same street) and I feel compelled to let you know that there are many people uniting in love and prayers for Bekka, her family and friends. When Alex has his lemonade stand this Sunday please know that I, and others, are all participating because we care. I cannot do anything directly that will truly be on any help to you, but to support a young boy who is trying to raise money for cancer research because of his love for Bekka is a “must” for many of us. Words cannot express how I feel about the situation and I sure I am not on my own when I say this. Humans are inextricably complex beings most of the time however, when situations create trauma, despair and pain we all somehow become united. That truly is a blessing , however small it may seem.
    Please know that many thoughts and prayers are with you all in love and friendship.

  15. Lydia Mann
    Jun 7, 2014

    Thank you. Though I’ve not had the pleasure to know you, your writing has been a great source of comfort, information and comprehension during this awful time. Thank you.

Trackbacks/Pingbacks

  1. Uncle Tommy, My Patron Saint Of Sick Children | Ferrett Steinmetz - […] Rebecca dying so quickly, I talk to dead people and wish they would […]
  2. The Forever Bucket List | Farrell Ink - […] At a glance, this seems callous. How could I stop myself from desiring for Becca to have health instead of sickness,…

Leave a Reply to halfmoon-mollie Cancel reply

Your email address will not be published. Required fields are marked *