Maybe we were arguing, I don’t even remember, but I was feeling thwarted, roadblocked, about whatever it was, and I spit out these words, “you’re cutting me off at the–” (silence). Knees. I couldn’t take it back. I didn’t finish it and, I don’t know, I must have said something else, but it didn’t matter. The imagery of that phrase hit me in the chest like a sandbag, thrown fast like by some muscled dude trying to protect his house from a rising flood. The thud shook my bones and lingered after the sandbag fell and then -can you see it?- the water was too quick and high anyway, and I stood there, stupid, waist-deep in all these words I never gave a second thought to, before. I can’t even tell you if we said anything else to each other, because I was drowning in this sudden flashflood of realizing how many words mean something so much more, now.

Due to the severity of his lower limb differences, my baby’s only hope for walking requires bilateral amputations. At the knees.

That’s the kind of hurtful phrase I never should have said, anyway, nobody should ever say. It’s easy to rationalize my wrong, to flagellate my pigheaded anger and concede I could do better. But we all say shit like that. How many other punchy phrases are as potentially hurtful? The thing is, a lot of benign sayings sting now, too.

He might be a little old for such goofiness, but my six year old is always good for a couple rounds of “gimme five! up high! down low! so slow.” And I love that the pull-away hand always makes him laugh. But I can’t engage in this throwback low-tech silly thing without the brightest blinding hurt reminding me: the baby doesn’t have a hand with five fingers. I won’t ever hear “High Five!” again without an involuntary clenching, a bracing against the obvious.

Remember how in the beginning of Stuart Little (the book. I wouldn’t be referencing anything else and, in our house, E.B. White is practically my kids’ grandpa, which is pretty awesome, actually.) and it’s mentioned that the word “mouse” is removed from stories so as to not hurt Stuart, ergo: “Not a creature was stirring, not even a louse“. I am Mrs. Little, fretting over my little surprise mouse’s feelings, I am the mother with the baby that causes doctors in all specialties to scratch their heads: how unusual! I wish I could censor our whole life, with a tiny tub of white-out and a pen to fill-in descriptions that would match Ulysses’ body. What must it be like to grow up and see no bodies that look like yours? Little boys in books and movies have ten fingers, two strong legs. Because that’s what little boys look like. (I know, I’ve got one.) But if your little boy is a mouse, a literal whisker-faced mouse, you want him to feel positively about himself. You are careful about what he hears and sees. You think twice now about saying things like “cut off at the knees” and “lame”.

Lame: having a body part and especially a limb so disabled as to impair freedom of movement. Check! Present and accounted for, sir!

I know it’s just one of those slang words that falls out of anyone’s mouth, and nobody means to be hurtful when they say it. But if the word you’re using to describe something inferior, something that you don’t like or didn’t work out the way you wanted it to, is an actual word used to define disabled limbs, well, using it is offensive. It just is. And I’ve allowed offensive words to live in my vocabulary, maybe in a little closet somewhere, not in a part I use everyday, or even very often, but certainly they’ve lived there. I’ve said “how lame” when what I really mean is “how disappointing” or something else.

I cannot remove an able-bodied world full of Gimme Fives, I will have to set my jaw and train myself to flinch inconspicuously. Just like I absorb the curiousness and comments, already. A little girl said about Ulysses yesterday, “it looks like he only has two fingers!” and I could feel the air shift, her father paused, was he wondering what to say? But he didn’t have to wonder, I jumped right in, “he does have two fingers!” and then the big brother, “but he was three on his other hand! and only two toes on each foot!” and it was a lot more information, I think, that the little girl and her dad expected to hear, but I added “that’s the way he was born!” just to punctuate the whole exchange with a little extra positivity. And I’m telling you this because it was the most unremarkable conversation ever, a few fast words about a new baby, no big deal, but the unspoken part is how I absorb other people’s awkwardness. I have to be the sponge that sops up the ooze, the discomfort, the apologies, the questions, that other people have. I have to be the bread dough on it’s second rise that doesn’t keep an indentation when you poke it. I have to hold it all. I have to be ok and make sure you know it, so that my boy gets the most ok he can. The scale must tip to the ok, the hesitant and sorry side can’t add up at all. And I’m glad to do it. I will do it because it’s what he needs. But it takes a lot out of a person to absorb so much.

This is me, asking you, to be careful. This is me saying I don’t expect you to understand or notice how many hurtful things my boy and I will need to deflect, but the more cognizant language around him, the less hurt we’ll have to sop up.  This is me, talking to myself, letting you listen in.

(once you’ve fallen out of the habit of taking good pictures, it’s hard to get back to it. the above has nothing to do with this post, no subliminal photographic metaphor or anything like that, i just hate putting up an entry without a picture, and since i did that last time, i wanted to share something up there on this one, even a quick snapped phone shot with visible spots from my windshield.)

Categories: Uncategorized | 9 Comments

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9 thoughts on “colloquially

  1. I supposed it wouldn’t be right to copy and paste this post in my own blog and pass them off as my very own thoughts….but I sorta want to.

    Once again I’m astounded. Well done.

    • aw, thanks. i have this constant stream of related thoughts in my head lately and it’s pretty helpful to work some of them out in writing. i’m worried that i didn’t really make the point i was trying to make, that i was thinking in my head, with this one. i appreciate your comment. of anyone who reads here, i think you probably understand the most what i’m feeling about all this.

  2. This was beautifully written. I hope you don’t mind if I ask a couple of questions. My 2 year old is at the age of noticing; differences, similarities, etc. Should we ever meet at the store, park, whatever, hypothetically, and she notices and calls attention to the differences, what do you want me to say? What do you want me to do? How can I address that there are differences, without hurting you and your son?

    • that’s a good question, but as i’m only two and a half months into this, i am not sure i’m so qualified to answer! i can say that i totally expect children (and adults!) to be curious. but i hope curiousity is balanced with kindness. that people accept simply, this is who is is. that children who see ulysses, or other people with differences, will learn to understand that differences just are. so if a child comments on his fingers, like i mentioned happened the other day, i will respond matter of factly, yep, that’s right, two fingers! and hope we can just get on with our day. and i would hope that parents acknowledge their own discomfort and not apologize. that’s kind of the biggest thing for me, i think. please don’t say “i’m sorry”. i don’t want people to be sorry when their children ask questions, because in apologizing, the message is sent that there’s something to be sorry about. this is his body. it looks different. period.

  3. Brooke

    April, It is wonderful to read about you and your family. You convey your experience in a thoughtful and open way. I was thinking as I read this post about how we have to undergo a mindset change to be more sensitive to others in general. Or maybe it is along the lines of Non-Violent Communciation to not make assumptions. Thank you for sharing this today.

    • oh, hi brooke! thanks! i certainly have a lot of reprogramming, of my own brain, to do. having a child with disabilities has certainly opened up a whole new world of thought and considerations to me.

  4. ruth

    I came over from Miggy’s blog. I had to say hello and tell you that I relate to your feelings in so many ways.
    “how I absorb other people’s awkwardness. I have to be the sponge that sops up the ooze, the discomfort, the apologies, the questions, that other people have.”

    I always felt that it was so overwhelming to deal with my own feelings, but now I have to deal with everyone else’s?!! Too much.

    You do adjust to this new medical world. not that it’s easy….. you just get used to it.

    • oh, thanks for commenting! I am so encouraged by knowing more people, more stories, families with amazing, surprising children. learning about other one-of-a-kind kiddos makes it feel a lot less lonely over here with mine.

      (love the name Ruth btw. it’s my middle name!)

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