Friday, January 2, 2009


The year is young and already there have been two news stories that hit very close to home. The first is the negligence of a caretaker for her 22-year-old charge whom she left, stranded, in a bus overnight somewhere in New York. The young man evidently had severe cerebral palsy and was in a wheelchair. She knowingly left him in the bus where he rocked for over 17 hours, trying to keep warm. He suffered hypothermia when they discovered him in the morning.

The second is the death of John Travolta's son Jett in the Bahamas this morning. The young man, aged sixteen, evidently had a seizure and hit his head on the bathtub, was found by a caretaker at the hotel, but couldn't be revived. I had long thought that Jett was autistic but learned in a newspaper article that John Travolta had always denied this and that in addition to seizures, his son had suffered from Kawasaki's disease when he was younger. After the initial rush of horror, of what I think in the moment I understand, I'm painfully aware of my own selfish need to differentiate from these families. My only thought, then, is My God, My God and then all the inane platitudes that accompany tragedy.

I stare sickly at these news stories (that many people emailed me), poring over every word, almost runnning my finger over the lines. I read them and then I reread them. Looking for clues. There seem to be only cliches to describe the feelings: my heart literally goes out to them, the parents. I get it, I think, simultaneously looking for something in the story to differentiate from my own life. Sophie can't ever bathe by herself, so that wouldn't happen I think. Or Sophie's aide would never do that and besides, I'd know that she wasn't home. Where was this young man's family when he was freezing, alone, on a parked bus?.

Some people like to say that we're all one step away from death. To savor every moment because you, too, or your spouse or your bright and happy children could be taken away with a snap, like that. And that's true and unless you're just not too bright, getting older makes you painfully aware of mortality.

The vulnerability of my own daughter, Sophie, is something that I try not to dwell upon. Try not to even write about because I think, sometimes, that I'll jinx it. That by giving it form it will be more real. Or I think the opposite: that the more I think about it, the less likely it will happen. The Husband likes to say that one would be paralyzed, literally, if one entertained the thought of Sophie's vulnerability at school. She can't talk or really do anything for herself. So when we send her off to school each day with, let's face it, an aide who we've only known for a year or so, we're taking, really, the biggest leap of faith of our lives.

And then there's the other. The fact is this: people with seizures that are not controlled by medication can die suddenly. The condition has the lovely acronym of SUDEP (and I don't even want to link to it in my blog!) and it's something that The Husband and I think about every single night.

One of us, usually him, because he is far less psycho in the night, sleeps with Sophie each night. This has become habit and we look on it as one of the concessions we've made in our lives to her disability. We do it knowing that in some ways it's irrational. Even useless. A lame, pathetic attempt to control the utterly uncontrollable. "Can't you use a monitor?" someone always asks. "No," I reply. We need to be near her. We have this idea that if she were to stop breathing, we would sense that, in the night. I have to believe that we would.

That the Travoltas' tragedy is public due to their celebrity doesn't make it any bigger than the countless, faceless tragedies of other children's deaths. From seizures, from disease, from something out of the blue. But it does put it out there.Sometimes I feel like gritting my teeth and reading these stories, that sharing them will somehow prepare me for the worst. Lamely, I'll repeat There but for the grace of God, go I. But I know that isn't really true. I really just have no idea.

I'll leave the computer, the story and go back to my nest where I'll squat, my wings spread over them, these fragile eggs.


  1. I thought of you immediately. And felt completely sick for the Travoltas and families like yours where this hits close to home.

    BTW, this tragedy is only going to get more upsetting/controversial. There has been long standing opinion that Jett has not been medicated because Scientologists don't believe in the condition (Autism?) or in psychiatric or neurologic drugs.

    My sister runs the Free Katie website and message board. People are very heartsick about the boy's death especially if it was due to a crazy cult.

    Here is the message board, if you are interested...

    I am sending you "protective" thoughts. I'll keep and eye out for Frank.

  2. "I'll leave the computer, the story and go back to my nest where I'll squat, my wings spread over them, these fragile eggs."

    I never know what to say when I read about how you deal with Sophie's condition. This is a beautiful essay. Your words remind me of how truly fragile human beings are. The anxiety and stress and the thoughts and feelings associated with the hyper-awareness that someone close, a child is so very vulnerable are unimaginable to me. It does keep me aware that life is capricious, maybe even random and anything can happen to anyone at any time.

  3. I thought of you immediately. I wondered how parents of children with seizures live on a minute to minute basis. The whole story is tragic. A death of a child is so very sad. Living your life in fear that your child will die must be horrific. My heart goes out to them, to you, to any one living like this. Life is so very precious. Your family is so very beautiful, in every sense of the word.
    xo n

  4. Sometimes I don't know how to comment on your beautiful writing or circumstances that I can't comprehend in my life.
    You handle things with such grace and your children are so fortunate to have you as their mom.

  5. I have a similar reaction to those news stories. It gets so personal. We've just fired a caregiver because she was starting to exhibit some signs that were disturbing to us. In the end, it's hard for me to keep working because I just don't really trust leaving Robert with other people right now.

  6. i know.

    i don't have the same situation but i identify with every single thing you wrote here so beautifully.

  7. the bird and nest image is beautiful and so true

  8. Your writing - so heartbreakingly beautiful.

    Sometimes I just want to shake the parents of "typical" kids who get mired down in the everyday minutia.

    So (too?) much worry to shoulder.

    The whole Scientology thing - shaking my head. I'm afraid this coverage may get pretty ugly.

    I cried when I heard the story about the young man who had to sleep on the bus. I'm crying now as I type. Someone's child you callous "caretaker."



Related Posts Plugin for WordPress, Blogger...