Monday, December 28, 2009

The Road Taken

Master of the Osservanza Triptych - St. Anthony Abbot Tempted by a Heap of Gold

I've written before about drugs, about new drugs in particular, about the drugs that are supposed to stop the seizures. I've said that after eighteen trials of drugs, I wouldn't give Sophie another unless Jesus Himself offered one to me.


We've given Sophie yet another drug. When I open my eyes each morning, I steel myself for the morning bouts of seizures, and they really ARE bouts. I have to literally protect myself from her flying limbs and protect those flying limbs from hitting furniture. Sometimes I have to lie across her to prevent her from throwing herself off of the bed. Do these seizures hurt? I hope not but can't be sure. I do know that when they subside, sometimes after forty-five minutes, we are both exhausted and I'm usually in tears. And this is partly because I've done a fine job of cursing the universe, yelling at God, berating myself for the yelling and otherwise acting like a desperate woman on the edge. I look at my daughter, her brown eyes like pools and I stroke her cheek and whisper that I'm sorry, I'm sorry, this must be better.

This one is called Clobazam and it's a benzodiazepine. For those of you who don't know your drugs, benzos are drugs like Valium, formulated to sedate, calm down, make comatose. The tricky thing about them is that one builds up a tolerance and then one must increase the dose and then increase again and then before you know it, seizures are coming through, breaking through and the side effects are taking over and  then one must wean the drug from the body. And as anyone knows who has given antiepileptic medications unsuccessfully to one's child, the wean is sometimes worse than the seizures themselves.

I remember long ago thinking this is my choice? when faced with the decision of which drug to try next for my baby Sophie. One drug could cause aplastic anemia and the other vision loss. There were the side effects of a suppressed immune system and terrible thrush or regression in development. These were our choices?, I'd laugh, darkly to my husband in the dead of night.

Roll forward almost fifteen years.

Jesus didn't give me Clobazam.  I actually got the prescription from The Neurologist about six months ago, who faxed it to the drugstore in New York City on the Upper West Side who got it from Canada who then mailed it to me. Throw in there, too, the transaction itself, the transfer of monies through credit cards because the insurance company doesn't cover it because it's not FDA-approved because it's probably not worthwhile economically for the FDA to approve it because there are other FDA-approved benzos but they don't work, so never mind (and any of you laggards out there who think that 1. medical decisions are being made between you and your doctor and 2. the USA has the best healthcare system in the world and 3. you fought against reform like a good Republican should or are settling for the measly compromises that are being crafted, well, wake up because this is how many of your fellow citizens with children with chronic diseases have to live). And when I received it in the mail, the little innocuous white box of one hundred pills, each pill a startling white in an indented plastic container with a bit of foil on the top, I put it, promptly, into my medicine cabinet in my bathroom, far away from the girl.

I was waiting for a sign, I suppose, and didn't mean to cave. Because that's how I look on it, actually, trying a drug that Jesus, Himself, didn't offer me. There was no sign, really, only a cry of enough! that came out of me one morning, and it's a very dark cave that I crawl into when we try these things, a cave that beckons me, separate from my instinct, all my bones and thinking brain and aching heart but nothing else of me. I crawl down that dark passageway each time I take the white pill and split it in half along the indented line, toss it into the back of her mouth and quickly give her the cup of juice to wash it down.

I never, never get used to it.


  1. You may not get used to it but you do it, you do what needs to be done, you wake and you deal with the siezures, crying or not, you do it, you don't run away physically or in any of the other ways people leave without leaving. You are doing a wonderful job. I hope those damn pills help.

  2. Oh, I so hear you...I'm looking at spinal surgery here...blech, blech, and blech to the whole thing...but it sounds beautiful when you write it. Much love to you.

  3. you are a goddess, elizabeth, and that is a tough and lonely thing to be.

    light to you, even in the deepest recess of your cave. light to sophie.

  4. No. I cannot imagine. I cannot.
    But I stand here at the doorway you have opened and look in and I think, "This woman is braver than Jesus."
    That's what I think.
    And I'm with Maggie. I hope those damn pills help.

  5. God,my heart aches for you Elizabeth. And my brain.
    How you have to find the sane line between the two. For your Sophie, for your family, for yourself.

    sending little white pill hope prayers.

    I'm emailing you a picture of my niece who is here visiting from Florence. I was struck by how she looks like Sophie.

  6. Brown eyes like pools.

    Never get used to it, dear Elizabeth. But keep recreating it in your incredible prose and your steely soul. Sending holiday love. Also loved the pics posted yesterday. And the whole damn blog. Wish I'd been following it more closely all this time, it's amazing.

  7. I want to hug you, make a latte, yell at the Universe "enough already" hold the Mermaid quietly in my arms and sing to her sweet nonsense songs, in other words: give you a break.

    Decisions are made by the pharmaceutical companies in case someone is still in the dark ages.
    When in conversing with one radiation oncologist I asked why there hasn't been any research I was aware of since 2000 toward at least some form of help for those dying of Mesothelioma he looked at me straight in the eyes and said something akin to: "there is no money there for "them". They are not interested in financing trials that have no economic impacts."
    Right, those are only lives and we know the price for lives these days.

    You are a brave and loving woman and I admire you because I am still in the dark about how you do it. Day in and day out.

    I am off to my chemo, although I tell you I wish I had the courage to say no. Some times we made decisions that affect others without much regard for our own personal cost. That I guess is the secret side of love.

    I too hope those damn pills help.

  8. Hi Elizabeth! I apologize for taking so long to respond to you, but I wanted to have time to look at your blog and read about your beautiful Sophie.
    Have you looked more into the CDKL5 testing? There is a pix of Spophie with her legs crossed and it seems like it is a picture we all have of our CDKL5 kids. The little ladies these kids are. This is my email knothdurft at gmail dot com email me and we can chat more.
    Oh and btw my Lily was on the Clobzam study most 2008, it is soon to be fda approved so we won't have to deal with the pharmacy in Canada too much longer, same thing with Vigabitrine :) We've really had to mix and dose appropiately but it has helped our daughter. I'd love to hear how it goes with Sophie. Take care and hope to speak soon!

  9. Oh Elizabeth.

    You are doing the very best you can. Sophie is doing the best that she can. It is all so hard and we cannot even fathom lying across our young daughter for 45 minutes. The exhaustion, I could picture it so well as you wrote it and it has broken my heart.

    You are a good mother and you are doing all you can and know how to do. You have no one to show you the way, there is only you.

    I would do whatever and try whatever too, what other choice do you have.

    I'm sorry Elizabeth that life is so hard, I'm sorry.

    Love Renee xoxo

  10. I am so very sorry this is part of life for you and Sophie. I am praying that this pill is magic.

  11. The thing nobody tells us when we're young, is that sometimes there are no good choices, it's only the lesser of two evils. I'm there with my mum right now, celebrex that have destroyed her kidneys or morphine that will make her confused and fall down. That's it. Die from kidney failure or die from a broken hip. Shitty choices indeed.

    Hope the pills help. Sending up a prayer to Mary for both you and Sophie.

  12. Damn. I wish you and Sophie didn't have to go through this...that you didn't have to endure those every morning seizures, and that you didn't have to go into that deep dark cave to get even the slightest chance of some short-lived relief. I really hope this little white pill will be different, and that if you do have to eventually wean that it won't be as hard as other times. And of course I am wishing that I could do something to help. Sending lots of love.

  13. I have absolutely nothing to say. Except that you're breaking my heart. And that I send a huge cyber hug to both you and Sophie.

  14. I'm not sure what to say except you are doing what you know how to do. You can only try these things and if they work they work and if they don't you move on and try something new. I will just pray for God's strength for you and the wisdom to listen to your heart even when it's crying out in anguish.

    Sending love and peace today...

  15. I love how you can write so beautifully about something so ugly, and how you can be so sensitive and so strong at the same time.

    Sometimes it fries my brain to figure out which choice is bad and which one is worse. I'm sending you lots of love.

  16. Just back from the mountains visiting family and catching up on blogs.

    I hear you. I hear you. I hear you. I hate it. I hate it. I hate it.

    love, love, love, Christy

  17. You do it because you have to do something, because you're doing the best you can, because it hurts too much not to try. Because you love her in the best way, better than anyone else can.

    I'm hoping for the gift of stillness for both of you. And candles in your dark cave and light for Sophie.

  18. Beautiful writing about an excruciating part of your life. Thank you for sharing. It breaks my heart. We have had many discussions about meds around my house lately and there is not any good or easy answers. Strength with love is often the only thing that gets us through. Sending you both if it is possible!

  19. I am keeping you all in my prayers

  20. jesus woman. that is heart wrenching. i can't even begin to know that cave but you bring me closest with your stunning writing. even through this hideous anguish and fear, your spirit and strength and fierce insistence for more, for your sweet sophie, comes through. so moving. and awful.

  21. This froze me. I am new here.
    Your writing, your strength, everything here, just bowled me over. I hope too the pills help.
    My gosh. I'm speechless but didn't want to read and pause for so long and then say nothing.

  22. Well, you speak doubly for me on the crappy health reform we're getting.

    All we can do is hang in there, I guess. I am willing it for you to be OK--not that I am magic or anything, but on the off chance it does any good. Stay strong.

  23. How could you ever get used to it? It sounds as if it goes against everything in you, but so does Sophie's continued suffering. As a mother, we will try ANYTHING to ease our child's suffering, our family's suffering.
    I can feel your love and passion and fatigue in your words. I am sending love and postive energy to you.

  24. You articulate what is so hard about motherhood when things arent 'typical.' I can relate to much of your conflict, though to a lesser degree. you SHOULD never get used to it. And what struck me in reading this post is that I never SHOULD get used to this either: but I have. And it sickens me...

  25. The word epilepsy is one that tends to be lost and isolated in dark and hollow caves. No matter how hard we claw out, it seems only a matter of time before we're back in those empty, desperate, caverns begging for more light.



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