Hard

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?

I have written about hard before. I’ve written about grueling days at children’s hospitals and outrageous encounters with doctors. I’ve written about fears and worries and major health decisions.

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This is a Worry Monster, found at Northshire Boosktore.  You slip your worries into its mouth, zip it up, and forget-about-em. [Image: plush aqua creature with six small yellow ears on its head and a red mouth that opens and closes with a zipper.]

But let me be honest: a lot of what makes my days hard is taking care of a 4-year-old who cannot do what a lot of 4-year-olds can do. I don’t want to go into details, because it’s no fun highlighting the many things Fiona can’t do, but suffice it to say, the list is long, and she requires far more involvement than her two-year-old sister.

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.

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Fiona smiling big with a splayed soft-shell taco sitting on the table before her. She’s wearing a grease-soaked napkin around her neck. A fork and spoon are on the taco.

She is a profound honor to raise. As my friend Stephen Kuusisto wrote in April of 2012, in his poem “The Souls of Disabled Folks”:

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.

 

 

 

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22 thoughts on “Hard

  1. Heather, YES. YES. It is hard. It may stay hard. It can be hard for everyone in the family in different ways. The hard wears you down over time, and it changes your life. The hard comes and goes, in a cycle that links in part to the developmental stages of childhood… all of the moments when you see a typically-developing child, perhaps your child’s sibling, and are smacked in the face again with the cold scaly hard fish of reality. Thank you for the courage to talk about it. Talking about it helps, and it doesn’t take away the joys and the pride and the courage and the hope. Perhaps talking about the hard makes room in our spirits for the joy and pride and courage and hope.

    • Ah, Tesi, thank you for these words! Yes, I think you’re right. Talking about hard makes room for the other lovely things. We just watched Inside Out, the Pixar film, the other day, and I nodded at the idea that sadness and joy really do need each other. Without making yourself available to one, you can’t feel the other. Maybe “hard” has to be there too!

  2. I think the wildly public nature of the internet is part of what makes writing about these things hard, because anyone could stumble upon a piece and make nasty judgements or use it to bolster some argument that would gut you to know you helped. But the writing itself must be so good for you, and it certainly is a godsend to those of us who can identify with your experiences. So I wish you wouldn’t censor yourself, but I also wish you wouldn’t have to. The same goes for me, having a hard time writing about anything non-fluffy, because of the scope of the audience. Each word I type gets censored by my mind, preoccupied with how myriad unknown readers might interpret my thoughts. It makes me feel I must be so polished and certain of my words that I usually just leave posts hanging out in the “drafts” for evermore. Maybe some things are meant for the blogosphere and others for a private Facebook group or email newsletter; some more controlled audience but still out of you? I don’t know the answer, of course, but if you find one let me know!

  3. Wow, Heather. Sometimes, it’s really, really hard in the valleys….but the mountaintop experiences that surround those valleys are so VERY worth it! Love to you and yours.

  4. The everyday wariness is a different beast than the crisis wariness where adrenaline often sustains. It seems more abrasive and cuts your stamina away in its own way.

    We are privileged to know all of our child, the hard times being a part of that. We want others to know that whole child too. Because they are oh-so-worth it. Worth every bit. The thing is, that ‘worth it’ doesn’t make you any less weary at times. It’s okay to acknowledge that!

  5. The everyday weariness is a different beast than the crisis weariness where adrenaline often sustains. It seems more abrasive and cuts your stamina away in its own way.

    We are privileged to know all of our child, the hard times being a part of that. We want others to know that whole child too. Because they are oh-so-worth it. Worth every bit. The thing is, that ‘worth it’ doesn’t make you any less weary at times. It’s okay to acknowledge that!

  6. Heather, It’s your former colleague from College Writing at Berkeley. I guess I’m one of those “lurking” readers. I’m responding now to say something I’ve felt for a log time. Every time I read one of your posts, something—both mental and emotional—changes for me. Your writing shifts my consciousness. Writing about these experiences is clearly risky and difficult. But it is very important.

  7. As a parent of 5, 2 with special needs and 2 LD and 1 leftie, Please keep writing! You say what is experienced but can’t seem to clearly express. Hard is just hard. Some days, weejs, months, years are just hard ask the time. Then something else happens lopiling on the hard making you wish you could go back to the looking back just not so hard days. But then you realize this is the new normal and you adjust. Keep doing the next thing. It does add up to time well spent loving your child. Hugs!

  8. What the Internet needs is intelligent, honest conversations like this–love + reality = a rarity in this online world of clickbait and snappy one-liners.

    We need you. Thank you for your writing.

  9. That bioethicist is ridiculous. If a burden just means “something to be carried, a load, a responsibility,” then we are ALL, at times, burdens on one another, especially children to their parents. And because we love one another, we ALL bear each other’s weight sometimes. Willingly.

    Is that weight sometimes oppressive or worrisome? Of course it is. Does that mean any parent would abandon their children because the task of raising them leads to struggle and pain? No. Pregnancy itself is a burden. As is parenting of any child of any level of ability. I don’t mean that to say I know what it’s like to raise Fiona; I don’t. I only know what it’s like to raise Lily.

    But you’re right that a struggle does not imply something unworthy, something to be discarded. We don’t kill the mountains because they are hard to climb. Your hard is beautiful. Your hard comes from the heart. No one should belittle or degrade someone else’s “hard.”

    And the trouble with Singer’s comments? They’re a little too easy for him to make.

    • Wow, DearLilyJune. You and the other commenters are making it very clear that I have the best readers in all the world. You are some amazing writers. I nod wholeheartedly at your words. “We don’t kill the mountains because they are hard to climb.”

  10. There is such a pervasive fear among people in our culture, and many others, of being a burden and we are bombarded with the idea that needing help from others is bad so I think in the disability community many people are loath to associate burden with disability. As another commenter said though other people are burdens on us at times. We are a burden on others sometimes. I don’t think that is a bad thing. Someday my parents will need my help and that will be an extra burden because I have a physical disability. It’s okay to acknowledge that and I don’t think it should mean anything negative about people. Needing others, helping others is a part of life. My disability is a burden on myself and sometimes others and I wish I could magically fix it but I can’t and I don’t think it makes me less of a person, nor should other people think it makes me less of a person. Someday they will need help and people with disabilities and people who experience the disabilities of those they love will be the ones advocating, designing and building accessible public spaces, school environments, hospitals, and and recreation programs.

    As a Doctor I love once said “The good things don’t always soften the bad things, but vice-versa, the bad things don’t necessarily spoil the good things and make them unimportant.”

    I hope that you and Fiona both find many, many good things along with the hard ones.

  11. Astounding. That you’ve thought these things and articulated them after only four years is testament to Love. Yes, it’s hard and such an honor, and not many will experience that honor.

    I know it sounds crazy, but I love you (and that’s partly because of the teeny tiny bathroom which made me remember changing the fifteen year old’s poopy diaper in an airplane bathroom).

  12. Hi. I didn’t have the perseverance to figure out how to post a comment on your blog. I was having a a HARD day. After a couple of attempts to post, I gave up:) Just wanted to tell you that I really appreciated reading your post exactly when I read it. I was in the middle of a really crappy, hard day with my kids (youngest 3 with Down syndrome). A messy poop without wipes at the ice rink (3 yr old) already late getting five year old in skates and on ice. Sudden need to pee (5 yr old) while I’m pumping gas…ran her to tan bark island and she peed all over pants anyway. Went to store for diapers and wipes, bought groceries (lots of begging and whining) forgot wipes and diapers. Still fatigued from sapping cold. Just a shitty day. I was driving home thinking, “how would I even describe this to anyone? There’s no big headliner to get the compassionate response I’m craving. If I took the time to list the details, I would bore myself and the listener and just drive people away” I felt isolated in this unique kind of pain. A lot of it has to do with Ds. It’s so much work to juggle all the extra care she needs. I came home, got little one down to sleep, checked email and found your post! It changed my day, on the spot. Writing is medicine. Your work is a service and I fold my hands in gratitude. Thank you, mama. We are commadres! I especially appreciated the reminder that life isn’t about getting it perfect – Finally getting to that static state of happiness our culture is so fond of. For me, it’s about soul growth – the deep down, very personal, well of real joy that burbles up through the cracks in our plans, our hoped for lives, our control structures, really. I like Leonard Cohen. I like a line from one of his song/poems…”There’s a crack in everything. That’s how the light gets in.” My daughter with Ds is that crack. She is the absolute light of my heart. She is sweeter than anything I’ve ever felt. And, she has powerfully disrupted my life…brought me to my knees…often in pain. It’s not an obvious path. It takes a lot of heart to be here. I recently did a painting that I called “Pray for a sufficiently broken heart” It was along these themes. It’s the transformation that happens when we go thru the long winding process of living our actual lives consciously. Reading your post in the middle of that hard day was the compassion and wisdom that I needed. So perfect! It turned my day around. Thank you! xx Date: Wed, 2 Mar 2016 14:30:08 +0000 To: wildwell@outlook.com

  13. I hear your struggles and I understand them. I understand this hard intimately. I am a newly divorced, single, stay-at-home mother of two girls (4&2) and I can honestly say I feel this hard just as you do. These times/ages are both so hard and so precious. But even if I had the energy to pack everyone up and go out to a “mommy meet up,” the average suburban mom (it appears) thinks divorce is contagious because I haven’t seen the face of a friend who has been married less than fifteen years in over a year. I kid you not. Fifteen year wives seem to feel bullet proof and willing to hug me, or watch my kids while I take myself alone to the ER for three bags of fluids after the stomach flu derails my life. But less than ten years wives, don’t text… Don’t call… They could catch divorce or worse yet, I could steal their husband… The only people who call my phone are creditors because I live with 100% of the bills of our former married life on 40% of the income. People say “good for you for getting complete custody!” & “my husband doesn’t help with the kids at all so I know how you feel.” But the truth is, he does help. He brings home a pay check, or he empties the dishwasher or he crawls on all fours and let’s someone on his back. Hell, he pulls dinner out of the beeping oven so it doesn’t burn while you are hunched over a toddler on the potty trying to get them to wipe in some effective fashion… I may not have your hard but it’s so close to my hard that it rings true. So I open my little cash envelope for groceries, straighten my ponytail and tell myself that tomorrow… Tomorrow I will do yoga and chill out… Because we don’t get to dream of a day when everything is perfect when things are hard. We get to dream of a day when it’s a little bit less hard. And that is enough for now…

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