Hard as in the hardwood floors always coated with Cheerio crumbs and unrecognizable dried sticky stuff (because toddlers).
Hard as in waking three times in one night because your kid’s lightweight immune system has yet to receive its boxing gloves and she can’t shake her fourth respiratory infection this month.
Hard as in hearing your mostly nonverbal daughter whine Momma, Momma again and again but never knowing further what she wants.
The blog has been a little quieter as of late, and there are a few good, temporary reasons (some work-related things, a big writing project I’m finishing up). But there’s also another reason, one that’s probably not-so-temporary: the days have been drudgingly, tediously hard. Not hard as in, “Let’s drive an hour and deal with a wacky neurologist” hard. Or “Let’s venture into the great outdoors and encounter a bizarre ableist comment” hard. Nope, the hardness of my days hasn’t been significantly story-worthy. There has been no good plot in this difficulty.
It is the difficulty of hauling children into or out of car seats eight times in one day. Of making the requested peanut butter sandwich only to watch it get rejected in a toddler fit of rage. Of a sister shoving a sister, followed by a lecture against shoving sisters. Of failed potty attempts. Of successful potty attempts that still require disinfecting a potty—in a very tiny bathroom whilst one child waits with her pants around her ankles and another child wails on the other side of a closed door, banging to get in, but I am unable to acquiesce to her wishes because if the door to this teeny-tiny bathroom opens, it will whack me in the face, perhaps knocking the shit-covered potty from my hands and landing on the whining, pants-around-ankles child beside me, who is pressed against the tub. (Seriously, we have the tiniest bathroom on the East coast.)
You know, that kind of hard. Shit-just-got-on-my-hands hard. Back-is-splitting-from-lifting-kids-into-car-seats hard. Who wants to read that?
And that is a kind of hard I find hard to write about.
Why? Because I’m keenly aware of the narrative that the disability community wants to combat, the one I too want to combat: the narrative that the child with disabilities is a burden—to the family, to society.
There it is. The B word. Can I write about hard without invoking the B word? I sincerely worry about this. Hence, an of-late quiet blog.
I worry that if I describe a level of hard that is so hard you think the B word, then I am helping out the case of a certain Princeton professor who advocates killing babies with disabilities before they are too old. He argues that people with disabilities suffer and cause suffering around them, so killing them is the ethical thing to do, because he says what we want to do in life is avoid suffering. He is an ethicist.
The B word bolsters his cause. The B word is evidence for his claim. The B word does his head-nodding for him.
And make no mistake, people, this kid is no B word.
First you should know that they have planets inside just as you do; rivers; acacia trees; windfall apples.
Fiona was ten months old when Steve posted that poem on his blog, and I promptly printed it out and tacked it to my bulletin board, where it remains today. Fiona has a planet inside her, just as you do. It’s probably blue. It’s probably sapphire blue like her eyes, and when you encounter it maybe its gravity makes you lighter, makes you as light as she is, allows you to bounce on the surface like you’re bouncing on foam.
But there are days, too, friends, when I am rendered heavier around her. Maybe that’s not her planet. Maybe that’s my own.
One thing I tend to write about is whatever thing I haven’t yet said. And I write about it because if I haven’t yet said it, it stops up all the other things, and I say nothing. “What’s the unsaid thing?” I ask myself again and again when I face a blank screen.
Here is the unsaid thing: Sometimes this life of parenting Fiona is hard, just for itself. Not always due to the structure of buildings, or the treatment of outsiders, or the ableist language we encounter. Nope. Sometimes it’s just hard because my kid wants something and doesn’t have the language to tell me. Because my kid’s sick and can’t combat it. Because my kid had two seizures in one week. Because when that little cotton-ball top of chromosome four skipped out on her blueprints, it left a whole human, yes, but a whole human who needs to do an awful lot of leaning on the adults around her. And that is just plain hard.
How can I talk about hard and still show you she’s whole?
Maybe by telling you this: Hard is indeed hard, but it’s also okay. Here’s where the ethicist and I disagree: I don’t believe the purpose of life is to avoid suffering. I’m pretty sure no great teacher in any wisdom tradition advocated as much. The Buddha gave up his palace and meditated for days. Jesus said yes to a cross. The doorway of suffering is sometimes how we enter new worlds. We walk through to the other side, freed of something we’d once thought we’d needed in order to be happy. We are newly light in this new land, unburdened.
What I’m also trying to say is this, though: I’m not there yet. I’m not living on the other side of hard right now. I’m just juggling a shit-covered potty in a teensy bathroom. I’m just living today on a sleep-schedule no better than a parent of a newborn. I’m just hearing the word Momma, Momma again and again, with no knowledge of what words should follow next.