Thursday, December 4, 2008

The Monster

Over at Fighting Monsters with Rubber Swords, a fantastic blog by Robert Rummel-Hudson, I learned today that his little girl, who has a neurological disease, might also be having seizures.

My heart sank when I read this because Robert wrote so beautifully about how the spectre of seizures has been hanging over their family's head for as long as they have known of her condition. Hanging over their heads like "the sword of Damocles," I believe he said. Suffice it to say that the sword fell, long ago, on our heads and I might even add that the near-constant nature of Sophie's seizures and their resistance to intervention could be compared to a perpetual sawing of that sword or at least a surrealistic dropping of it, over and over.

This is a thought about disability that I've had for a while, and Robert's post brought it fresh up to the front of my head. And now out of my mouth or through my fingers (because when I write, I imagine a conversation that my fingers are channeling). If I knew fourteen years ago that Sophie would be here, now, still seizing, nonverbal, cognitively impaired and needing assistance with virtually everything, that my life would be the way it is, now, I would probably have at least wanted to kill myself. BUT, here's the thing:

Sophie is a beautiful child with curly hair and a perfect nose. She is surrounded by those who love her. She is, actually, all about love. We have a beautiful life and in many ways, her presence, the reason for her being is manifest in that beautiful life. We are fine, you see. My own life is fine, more than fine. I am thrilled to be alive, however difficult the daily is. When I wonder what the future brings, when I have intimations of its difficulty or fears of its uncertainty, I try very hard to bring myself back to this thought -- that the future, the then will most probably be the same. I have learned that whatever comes... well, it's incorporated and becomes the present. And it's all right.

I'm not sure if that makes sense in words, on the screen. If I say it, it does. I'm hoping that the sword doesn't drop on the Hudson's. But if it does, I'm sure, by reading his past posts and "knowing" the beautiful way in which he's led his daughter's life, that Mr. Hudson will be all right.


  1. Thank you for writing this. I needed to be reminded.

  2. It is odd to think about the future in our situations, isn't it? Everything does seem to be an eternal present. Other people don't understand that. The neurologist we like was shocked by that, when I said I never think more than 6 months ahead. He thought we should. I still don't see the point. Things will be the same, medical expenses will still be overwhelming, something worse might be going on that is entirely out of my control--it's just an exercise in seeing how high you can drive your anxiety, how crazy you can make yourself, to think about the future. That's what I think.

  3. Thanks for cheering me up with your poignant and honest post. For some reason saying goodbye to the Shiba Inu puppy cam today set me on a crying jag. I think because I spent all Thanksgiving checking the puppies with my niece who is 3 and who I miss very much. Saying goodbye to the puppies felt like saying goodbye to 3 year-old Layla. When I see her next she will be different, 6 month, maybe a year older. And I will miss her little voice and her excitement about spending time with me watching puppies frolic on the computer.

    (Thanks for buying the Danger Dog calendar too. Hope the boys like it.)



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