10.08.2012

plain sick

I got punched in the eye, bit on the cheek, scratched on the neck and screamed white-hot in the ear, head butted on the nose and lip and kicked in the ovaries ... all by my eight-year-old boy—mostly not on purpose—over the course of a weekend.

He’s back to being the maniac that he was last spring, likely due to the antiepileptic drugs hitting him harder after a recent and unfortunate weight loss. His teeth-grinding is more fervent than ever and he flails like a lunatic in a padded cell, but without the straight jacket that oft times I feel we need.

I’m sick. Plain sick. Our situation makes me sick. Sometimes little Calvin makes me sick. I’m sick of his screaming, of his poor coordination, his inability to do anything by himself. I’m sick of him nearly choking on food, coughing his lungs out in what seems like an act, though I can never be sure. I’m sick of him stuffing his hand down his diaper then not using that hand to protect himself from nearly running into a wall, or spreading a handful of feces all over like he did last night after dinner. I’m sick of his feverish writhing and uncontrollable floundering, sick of constantly having to keep one hand and both eyes on him at all times. I’m sick of the trips to Boston, the blood draws, the failed urine collections, the doctors’ appointments, the lines at the pharmacy, the mistakes with his seizure drugs, the loss of skills it took months, if not years, to learn. I’m sick of him biting every wooden surface in the house. I’m sick of feeding him, of changing his diapers, sick of having to monitor his bowel movements and of having to give him suppositories every other day. I’m sick of his stubborn behavior, his head-banging on the padded bed boards so hard that I wonder if he'll give himself a concussion. I’m sick of having to listen to a baby monitor all night long, sick of the sleep deprived nights, sick of the gnawing worry, sick of the dread, sick of the fear, sick of the monotony. I’m sick of jumping out of my skin at loud noises, sick of resenting him, resenting my husband, resenting my friends, resenting what my life has become. I’m sick of the drugs and I’m sick of the seizures that never seem to end.

I'm sick of not feeling quite like myself.

And then the phone rings and I think I'd like to bite the head off of whoever is on the other end, and it's my mother and my sister. They can tell something is wrong. I can hear the regret in their voices, their helplessness in being three thousand miles away. In a rare show of memory my mother is able to tell my sister, who is sitting next to her in the car, that I'm far away and feeling very sad. Mom asks what she can do to make me feel better. “Just listen,” I say, and at hearing her kind, soft voice I feel the slightest bit of sick tension melt off of my shoulders like icing from a hot cake.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

15 comments:

  1. I'm listening from far away and feeling.

    ciao
    Federica

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  2. I'm also listening and holding you close at heart...your honesty, raw emotion and COURAGE blow me away. Wishing you moments of peace and grace.

    Best, Sel
    Portland, OR

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  3. thank you sel. it means the world.

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  4. Bless your heart. Some days must be like this, specially when they come in a row. Take a big breath, Christy, and if it helps, scream!!! Getting some breaks with time to do something physical might help too....I surely hope so. Hugs...

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  5. Oh, dear. Time to stop lurking and 'fess up-- I am listening too, from Zurich. I am the mom of three n/t kids and here I am , fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading...so we are all listening.

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  6. Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day.

    Peace and love,
    Karen

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  7. dear anon, so glad you are reading and listening. what is n/t? if you wish to help me share calvin's story you can find me on facebook and friend me if you so chose. thank you so much for writing. it means the world! how did you find my blog?

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  8. thank you karen, peace and love are the most precious things in the world. so glad you get it. xo

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  9. Thank you for having the courage to say out loud what so many parents of suffering children think. My husband and I just spent the morning at my daughter's neurologist's office trying to find out why there seems to be only three states of being for my girl: having seizures, bat-shit crazy because of the meds, or a zombie because of the meds. I hate them all. I miss my pre-epilepsy daughter. And I'm sick of it. I wish you and I had other options.

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  10. dear lisa,
    i hope some day we will. keep on keepin' on. thanks for reaching out. find me on facebook and "friend" me to help promote epilepsy awareness and keep in touch.
    xo

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  11. I don't remember how I found your blog, but I am glad I did.
    N/t is shorthand (mine, I guess) for neurotypical.
    My kids are 9, 8 and 5 and so far we have been lucky in that we face just the usual challenges of childhood and family life.
    I believe that reading your blog has seriously increased my tenderness and compassion quotient, for which I thank you whole-heartedly.
    Danielle

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  12. dear danielle,
    you make me cry. thank you for your kind words. i am glad that the blog is making a difference in the lives of people like you, not just the lives of folks with disabled kids who have epilepsy.
    take care,
    christy

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