Tuesday, March 9, 2010

I just want to go with you

There's a song I sing to Schuyler sometimes, primarily when she's going to sleep. It's funny, because she's ten now, which is clearly getting a little old to be sung to sleep by her father, and on most nights she climbs up into her high loft bed and goes to sleep on her own. In some ways, she's fiercely independent, and she grows more so every day. But occasionally, she'll curl up next to me on the couch, and I'll sing the same song I sang to her when she was much younger, an Eels song called "The Stars Shine in the Sky Tonight". It's not a kid song, not at all. But it's ours.

I think a lot about the future, one in which Schuyler is alone, without her parents, making her way in a harsh world that doesn't care about her disability. It is the thing that keeps many of us awake at night, parents of children with disabilities who feel like we're the only thing that keeps our kids from being devoured.

But then I meet the other parents, the ones who are fighting the other fear, the ones whose kids face a more immediate fate. I met some of those parents at a conference where I spoke last summer, and it put my own life and my own fears into perspective.

I can't live in a world that you have left behind
Seen a lot, been through too much
But this is where I draw the line

It's not where you're coming from
It's where you're going to
And I just want to go with you

Protectively, as a parent who only wants the best for my child and who worries about her when she's on her own, I never want to face the thought of leaving her behind. But selfishly, almost shamefully, I quietly hope that I never have to be the one left behind. I don't know how she'll make her way in the world without me, but I know she will somehow. But I'd never make it without her. And that fear keeps me up nights, too.

December is a lonely month
In a year of lonely days
It's hard to tell which way is up
Or down or out
Or through the haze

People cheat and people lie
While you just watch it all go by
Counting days until you die

I don't know what the future holds for Schuyler. None of us know. I remember speaking to a college acquaintance who suffered from what was supposed to be terminal cancer. She told me of a friend who had reacted to her cancer diagnosis with real sorrow and sympathy. He'd grieved with her, and for her, and had spoken to her of how he couldn't imagine a world without her in it, and then soon after was killed in a car accident. She attended his funeral, and her own life moved quietly forward, and still does to this day, almost twenty years later. You just never know.

Fate, God, Life, whatever it is, it doesn't show its cards very often, and it has a taste for the unexpected.

I watch other parents of kids with disabilities, and I see how they face the future, the one they fear and the one they try to understand. I face it myself, with varying degrees of success. I fear a future where she walks alone without me, and I also fear a different future, one where she leaves me behind. Both are too big, both are too much, and so I try to live instead in the present, in both the quiet moments and the rowdy ones, where I can see what I have before me, and love her in this moment.

Fear is a monster. I fight it sometimes. The rest of the time, I ignore it as best as I can.

The stars shine in the sky tonight
Like a path beyond the grave
When you wish upon that star
There's two of us you need to save

It's not where you're coming from
It's where you're going to
And I just want to go with you

Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008).  He is also a contributing essayist for My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press, 2009). His work has appeared in Good Housekeeping and Wondertime.  Robert's adventures with Schuyler can also be found at his blog, Fighting Monsters with Rubber Swords.



  1. "Fear is a monster. I fight it sometimes. The rest of the time, I ignore it as best as I can."

  2. Wow. That sums up parenthood just beautifully. Thank you.

  3. I agree, fear is a monster. Thus, we do it afraid.....whatever "it" may be.

  4. each day, poised at another beginning.
    your post brought tears to my eyes.

  5. I prefer to sing to my kids about the itsy bitsy spider, who was angry and sad and frightened and who drank too much and was unfaithful to Mrs. Spider.

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