Monday, August 16, 2010

Here we are

It's hard for me to convey, over and over again, what it's like to watch Sophie struggle with seizures. I hate to do it, over and over again. I've been admonished not to do it, over and over again. I put restrictions upon myself and look for transcendence. I read the requisite literature. Yet still, as Sophie seizes, particularly now as she struggles with ESES I am struck by how exactly it, the disease, is following the path it did over five years ago. As I spooned beans and rice and guacamole into Sophie's reluctant mouth this afternoon, her second meal after a five hour nap, I remembered the pureeing of food, the stroking of her throat, the threat of a feeding tube. I thought, for a moment, that I might have something in common with those mothers whose children fall out of remission from cancer. Is this it? I think and quickly think The IVIG worked then, so it'll work now. I think does she possibly have a brain tumor that is only now showing up? Nonsense, I think. What if she IS a seizure? That's nonsense; she will get better, feel better, respond.  A spell, a curse, an imprecation, the antidote. When she wakes after these interminable naps, these naps that I imagine are the only rest her body and her brain receive, she lies in bed and has what we call a cluster. A cluster of jerks where her arms fly out and her head bobs, an almost exact mimicking of the infantile spasms she acquired when she was three months old. As I lay by her today, at 3pm, much of the day spent doing paperwork, fiddling around online and cleaning as she slept, I wondered whether I could be mindful as a sort of counter-action to the seizures. I wondered if that wouldn't be mindful at all as it implied judgement. Nonetheless, I breathed in and out breathing in I calm myself, breathing out I smile, breathing in I calm myself, breathing out I smile, the same exact words I chanted as I held the baby Sophie in my arms in the brown and white checked chair in the fourth floor apartment in New York City so long ago. So much is different yet so much is the same. There is a timelessness that is not transcendent, though, an infinite whose implication is not light and that is where I lay a bit, today.

Andrea, my friend from this strange, virtual world, sent me an email  with a message at the end, an epistolary quote used at the end of every letter sent by rural Indians when they sign off.  I don't know why, but it made me laugh and laugh and laugh.

 Here we are all very happy, living in bliss, and we pray to god that you, there, are also well and happy too.

13 comments:

  1. I haven't been dealing with seizures in Emily for nearly as long as you have with Sophie, and I still hate them. I hate them. Did I mention I hate them???

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  2. I don't know what to say. If I could, I'd give you a real hug.

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  3. Every time we get raided by Izzy's freakish mucus/vomit attacks, the question 'Is this it?' sneaks upon me along with other 'nonsensical' questions. It's hard work to keep them away. Thinking of you and Sophie and sending you lots of love.

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  4. In my mindfulness meditation, I allow myself to go where I need to go, view whatever thought I am having without judgment and try to bring myself back to my breath.
    Without judgment. Just...this is.
    Oh Elizabeth. How do you do what you do?

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  5. just here with you in this.

    in about as helpful a way as those words maybe,
    but that's all I got.

    love you girl.

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  6. Maybe it's the rice and beans?

    Just ignore me, I'm going back to my f'ing bliss.

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  7. i am reading and listening and as you write i am imagining myself doing what you are doing, stroking the throat, waiting, spooning the food. and i know that in order for you to do this day in and day out for all these years you are building.... a strength in your soul and a beauty to your spirit that you would not have chosen, but is so very clear and beautiful to me.

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  8. It is so hard to feel so powerless as a mom. Just remember to be kind to yourself. You are doing the absolute best you can and sometimes it will feel more than you can handle. You'll have days when you can't stay mindful and you'll be frustrated and afraid. That's when you need to think about loving kindness, and the fact that you are still human. You're doing a great job, mama

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  9. I read your words, and all I can do is hope that the disease will ease off soon as it did 5 years ago, and send you hugs.

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  10. Don't know what to say. You are stronger than you know.

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  11. Hoping, praying, sending you a big hug. My words are so inadequate.

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  12. Do you read Thich Nhat Hanh? The Vietnamese monk? He has an entire book of breathe in...breathe out chants. Jimmy had the book, and when I was going through all my fertility junk, I just kept reading it and breathing! Helped so much.

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  13. I'm a pediatric nurse of many years and seizures don't frighten me which has turned out to be a good thing since my 16 year old had her first horrible seizure on Dec 28th of this year. It is a difficult journey...she has enough problems already. She does not need one more. I understand on several levels what you are going through. Glad to find your blog.

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