There’s a post sitting in my drafts with this exact title that is fully written and edited. I decided a few weeks ago, after reading through it several times, that I’m not going to publish it. It’s possible that the post needed to be written but only for me. I won’t delete it– it exists and is real, but I don’t want to share it with everyone. Its content comprises about 80% emoting and 20% analysis, so it’s unsurprisingly disjointed and not terribly purposeful. I’d call the writing of that post cathartic but it wasn’t, really. It was the sort of emotion dump that doesn’t really make you feel any better, doesn’t lessen the weight of the rock in your stomach. It will have to linger, probably forever, in Bloggy Purgatory.

This one will be a little messy too, I imagine since I haven’t written it yet, and for authenticity’s sake I’m not going to come back and edit this sentence after I’ve finished. Life in real time, people.

Today was a bit of a haphazard hither-and-thither sort of day, with M heading out to court early in the morning and me largely on my own getting the girls dressed and fed in time for 8am therapy. To my credit, I did enough prep the night before to have the time to do cute pigtails on the babies so there’s that small victory, but the scant four hours of shut-eye I got were badly broken by what we think were night terrors (poor little hysterical Chicken), so my sleep was about as seamless as a vase dropped and glued back together. (METAPHOR. Still got it!) My friend Em, who I have known now for holy crap, twenty years was a lifesaver and willingly drove an hour to my house on her day off to accompany me and the chicks to a doctor’s appointment in Boston after ABA. She got to experience the fun of an overtired Chicken bursting into tears as soon as I moved out of her range of vision and a squirmy Ham trying to drag the computer, mouse-first, off of the desk in the exam room while I changed her teary-eyed sister’s diaper. (Later on, Em bought me sushi for dinner. This one’s a keeper, folks.)

Before the appointment, though, there was just us hanging out in the car in the parking garage while the babies snored away the last few minutes of nap time before I had to drag the behemoth double stroller out of the back of the car. We just sat, sipping iced coffees and chatting, and she asked how I’d been doing, saying, “You seem like you’re handling everything really well but I think I’d be a mess right now and I wonder if you’re just feeling really stressed.”

I’d considered confiding in her back in the fall, after our September 12th diagnosis (I can’t help but reference the exact date, it feels so significant). I thought about the hard times she’d had in the past few years and how we’d sit for hours on my couch, sometimes with a box of tissues between us, while I tried to help her parse out the messy shit of life’s unraveling and unexplainable complications. It’s not even that she owed me the favor so much as we’d developed a newer level of closeness and honesty in our friendship, and it was a no-brainer that she’d be my go-to gal when I needed the box of tissues gently angled in my direction.

But I didn’t. Not really. In the beginning, I didn’t really want to talk to anyone; a few weeks in, I started vaguetweeting. I sent out a few emails, mostly one-on-ones. I needed hushed and furtive conversations around corners and behind doors. I didn’t feel right publicizing it– I couldn’t untangle myself from the feeling that I’d be exploiting my children’s plight for my own selfish desire to have people help me sort out my fears– but I needed to be talking about it because it was all I could think about.

“You seem like you’re handling everything really well but I think I’d be a mess right now and I wonder if you’re just feeling really stressed.” Yes, to all of this. I am handling things. I am a mess. I am stressed. But I’m handling it.

But anger is real. Anger seeps out when everything else feels too complicated to even pin down the name of the feeling. Just like there’s no concise English equivalent for the German schadenfreude, the delight in the misery of another, so too there isn’t a word to properly convey “I completely understand that my child is the same child today that she was yesterday, and all that has changed is what we call her and how we conceptualize her strengths and needs, it’s just that I’m really terrified about the amplified uncertainty that now exists about her future in a way that parents of children without special needs don’t have to keep at the front of their minds all the time, and I’m also really upset in a way I can’t define by the adorable videos that people I love post of their beautiful children on Facebook, especially when someone’s eight-month-old is doing things with language that far exceed what one of my 26-month-olds has ever been able to do, and all of it just makes me want the whole world to just wrap me up in a giant blanket so I can cry and cry but mostly I’m annoyed that I only have twenty minutes to feed my children lunch on Wednesdays because of our therapy schedule and also it feels really unfair that I am not a person who was designed for paperwork organization and the sort of constant positive energy that I think my children and husband deserve from me at this particular critical moment in our lives together.” So “anger” it is.

I was really mad at everyone. Everyone. Sadly, that probably includes you, friends who are reading this, at some point. (It doesn’t mean I ever loved you any less.)

I developed considerable skill in the art of misdirecting my anger. I was angry at friends who didn’t ask me how I was doing (because I hadn’t told them what was going on and I was acting like everything was fine). I was angry at the few friends who did know because I was sick of their offers of support, advice and general well-wishing. I was angry at the friends who knew but, disappointingly, didn’t really come around or call much for a variety of reasons that largely involved them having shit going on in their lives, too (strange how that always seems to happen to all of us all the time, eh?). I got zero-to-sixty-in-ten-seconds-or-less mad at a friend who reached out with “hey, I have an essay I found that I thought might be helpful for you” and wrote back a long long long email about how disappointed I was that all she had to offer me was some essay?! (That one got angrier on both sides, then got calmer, then got resolved & repaired in a way that reminded me how grateful I am for that friend and her particular way of loving you firmly and honestly.)

I got angry at myself for not being the sort of person who manages stress well, or for being someone who easily sorts and keeps track of paperwork, appointments and self-care all at the same time while still making a delicious homemade dinner (my mom). I got angry at my husband for not being the unwavering emotional rock that I felt I needed when he, too, was dealing with “both of your children have special needs and we have no idea what that means for their futures” whiplash. I got angry at family members who tried to give advice that came out wrong. I got mad at friends who posted pretty much anything on Facebook ever. I got mad when people had differing opinions from me on anything even distantly related to education, development or parenting. I got furious with someone who told me to “switch to decaf” after a series of Facebook comments went awry. I waited for people to say the wrong thing, and I knew exactly how I was going to scathingly retort the second they did.

I was setting all of us up to fail, and we failed spectacularly. I was full of red-hot rage.

I told this to Em, sitting in the car and sipping the watery, sweetsy-melty dregs of my iced mocha. How I probably should have reached out to her months ago but I just didn’t want to “go there” with anyone, how I still feel 100% fine and also 100% an about-to-dissolve-into-sobs mess all at once. It’s an odd disconnect. My day with my girls is not an endless, distant drumming chant of “autismautismautismautism” in the back of my brain. It’s just our life together, diapers and breakfasts and tickling and silly-girl-that’s-not-a-hat!-ing and one-shoe-fell-off and dishes and meal planning and draping the warm towels from the drier on them while they sit to watch Peg + Cat as I fold laundry. But it’s also those moments of small heartbreaks, over and over, because it shows through sometimes when I watch Ham’s little playful jaunt back and forth across the dining room with a half-smile and then it fades as I realize… oh, she’s just going back and forth over and over again with no real purpose and when I call her name she doesn’t hear me. Those are the moments when I remember a video a friend posted of their child saying something adorable, maybe snuggling a stuffed lovey in a way that emulates the way they see adults care for babies, maybe responding to a video of another friend’s child. I remember the things that my children cannot do and wonder if those things will ever be on their radar. I think about our Big Moments, of Ham pressing buttons on her iPad and asking for “YES HELP MUSIC [HAM]”, and what a beautiful and bittersweet and shallow victory it seems, to see my child stringing together pictures for a foreign robot-voice to tonelessly chirp out and to cheer like we are all okay with this, like this is some sort of equivalent exchange for talking. I smile big for her accomplishment, but I feel like all of my smiles are tempered with just a little sadness now. I think about those women who look older than they are and whether maybe it’s not one big heartbreak but the constant little ones, every day, that weigh them down the most.

I know this sounds so hopeless, and I don’t mean it to be. It sounds more hopeless than I feel, I think. I know that I just posted about Ham’s accelerating communication skills with her new device and I don’t mean to take away from the true sense of excited anticipation that I feel when I see her making connections, or the heartwarming moments when she types a word, then signs it, then looks straight at me, self-assured and direct. Moments that felt so out of reach for so long. I know that moments that feel out of reach now might only be just outside our grasp. In the pitch black, a light switch an inch away could very well be on the other side of the room until it grazes your fingers. Even the briefest victory– and we have plenty of those; words that appear once and then disappear for months before they turn up again– gives the promise of potential.

The anger is starting to let go, a bit. It doesn’t dissipate; it has to be displaced. I’m trying to make room for acceptance and determination, but peace doesn’t have a place in my heart quite yet.

21 thoughts on “anger

  1. I mostly just want to hug you right now. Every inch of how you feel is acceptable, understandable, okay. And I also know I just don’t have any of the right words, but want you to know that I’m here, listening. Accepting. Understanding. And wishing there was more I could do, but knowing there’s probably not. ❤

    • You do a lot just by being there! Remember, while I was feeling this way on the inside for months, I was venting all over twitter and all of you were very supportive (and tolerant). That has meant a lot.

  2. Can I just say ditto to Gemini? You have held yourself together amazingly well & inspire me. I am here to listen & help in any way I can. Hugs, big fat hugs to you….

  3. I think, oddly enough, that I understand exactly what you mean. I have often worried that I’ve inspired that feeling, and, in truth, it’s just a question of when, not if. I’ve felt honored that you’ve chosen to keep me around regardless. I care about you so, so much. If there are things that I can change , I want to know, and I’m sure that also goes for most people reading this.

    • Honestly, I don’t think you’ve ever said or done anything that upset me! I hope you haven’t been too concerned with that. Know that a lot of my anger was just a giant, itchy blanket that seemed to fall on everyone I knew, even though when I considered people individually the anger wasn’t there. It was a “rage against the world” feeling, not a specific feeling. That was one of the easiest ways for me to identify that it was irrational and had more to do with my bitterness and sadness and powerlessness than anything rational or productive. And really, nearly all of my friends have been worth keeping around for a while now, since having kids in the first place reshapes your priorities and a lot of the not-so-great friends fell away long ago. ❤

  4. I have tears burning in my eyes right now for every reason I can possibly think of. But mostly, because I am proud to know a person who knows herself so well, who can lay bare with such authentic honesty her heart and soul. I love you dearly and admire you beyond comprehension for this. And for everything else, warts and all. ❤

    • Oh boy, I’m blushing now. Uh, sorry I made you cry! ❤ Heh. I feel similarly about you, and I seek to emulate in this blog some of the honesty and "this is my life but I can find powerful meaning in it"-ness that I get when I read what you write, actually. You're my blog-spiration 🙂

  5. Gosh, I’ve been thinking about this post all morning and still don’t know how to say the right things and not sound like I’m condescendingly patting you on the arm. First, I apologize for being on the end of the stick that pokes you with videos and anecdotes of my kid (though I try not to be excessive about that anyway due to my many years as a bitter infertile). Second, I apologize for the inadvertent foot-in-mouth-ness that I know I’ve engaged in (like complimenting your organizational skills… which I still maintain you are a rockstar at, even if only by necessity). I can’t imagine the conflicting feelings you have about all of this. It’s hard to know how to say sorry that this has happened to you and your girls without sounding like we’re sorry they are who they are. Because your girls are awesome. You are awesome. I am legitimately SUPER PROUD TWITTER AUNT when you post things about them — I showed my husband and Miss E the videos of Hammy using her communication device the other day because I was so excited! It is not your job to teach the rest of us how to be supportive and say the right things, but I appreciate when you do and, believe me, I learn from it. Thank you for that ❤

    • Oh T, I promise, you are not someone who inundates me with kid vids. Truth be told, I really look forward to your videos because E is such a delight that I really look forward to seeing videos of her. She is charismatic as hell and so, so bright, and she’s also a bit older than my girls so there’s a shade of “well, she’s older than them, they wouldn’t be doing that yet anyways” to it for me, even if she’s only a few months ahead.

      You’ve never upset me by saying I’m organized, either. It’s mostly that people say that a lot lately and I chuckle inwardly, thinking about how my mom always said that every year in elementary school she could find my desk at parents’ open house nights because it was the one overflowing with papers. It might look like I’m organized, but what’s actually happening is that I just have a lot more paperwork to deal with and more appointments to make than most and I just have to do SOMETHING with it. Same as when people say to me “Twins! I don’t know how you do it. I couldn’t do it!” and I tell them, “Yes, you could. You could because you’d have to. That’s the only reason I’m doing it!”

      I love this– “It’s hard to know how to say sorry that this has happened to you and your girls without sounding like we’re sorry they are who they are.” That’s so it. From my side, it’s “It’s hard to know how to say ‘this is hard and sad sometimes’ without sounding like I’m sad about who my kids are.” That’s a tricky one to navigate. I appreciate that you get that and that you considered how to say it so sensitively 🙂 I’m also honored that one of our videos got the “honey, come look at this!” treatment! I’ve shown M a few videos of E, too. He agrees with me that she’s very charming!

  6. I love you, J. I hope that doesn’t seem too weird :-/ This post was one of the best things I’ve ever read because of its honesty. I feel ridiculous even saying I get your anger, but I do. Words fail me. I think you are amazing & so are your girls. As with so many things this week, I’m just going to listen, digest & learn. And maybe one day I’ll be as brave as you. Hugs & love from NC.

    • Thank you, K. I’m glad my post resonated. ❤ don't feel ridiculous! I normally have a hard time parsing this stuff out but sometimes it manages to translate. I'm glad it was a relatable message.

  7. KeAnne was kind enough to share this post with me — and how grateful I am to you both! My son’s ASD diagnosis is less than a month old, but dang is my anger way, way older than that. Anyway, love your writing and happy to discover you’re out there in the world too.

    • Hey there! I just popped over to your blog for a moment and read a bit about what’s going on. I’m going to write you a few comments over there tomorrow when I’m not in bed on my phone at 1:30am, haha. Thanks for stopping by ❤ I'll talk to you more in a bit!

  8. Came over via Stirrup Queens. Thanks for the eloquent post. We wish for our children all the good and wonderful things in life. Scaling down your hopes and aspirations for them along the way was not part of the vision. I can relate on the level about the kind of anger that stirs up my soul and leaves me feeling restless and fractured and all the while I’m saying I’m fine, I’m okay, I’m good. I don’t want to give voice to that anger cause it’s kind of scary and the flipside of that anger is full on depression and hopelessness cause I can’t magically wish the thing that made me angry away. Everyday I seek to transform it somehow into something that doesn’t hurt, that doesn’t provoke shame or sadness or even more anger. I think it’s the inching your way through something you never wanted, never wished for, the “seriously? Is this the bag of hammers that we gotta deal with here?” feeling that a lot of people can relate to. Is it just me or is that women really don’t feel they can be angry about anything?

    • Thanks for visiting! I didn’t realize until your comment that I was featured over there. Famous for a day!

      It’s a messy kind of anger, for sure. I’m actually mentally linking it in my mind with some other kinds of situational anger I’ve felt and drawing a few parallels.

      I half agree with you about women and anger. I think the bigger issue, really, is how our anger is perceived. Women often get the “you’re just being hysterical” treatment, and I know I, at least, have internalized that and often think I’m just overexaggerating. I read back through posts like this and a little voice in the back of my head says, “Oh come on, it’s not THAT bad. You’re just editorializing.” It’s hard to push past that sometimes.

  9. Hi there, I just found your blog via Stirrup Queens today and wanted to let you know that I found this post very touching. I am not a mom yet, (still hoping), but appreciated how you shared so honestly about your experience as a mom of two very special little girls. I wish you and your family all the best! Big hugs for having the courage to lay bare your truth and the strength to keep going every day.

    • Hi, thanks for stopping by! I’m trying an experiment with this blog in trying to be very honest about my experience even when it’s not particularly flattering, without also saying anything I’d regret having publicly available. I’m hoping some other parents who need to read about and relate to these experiences will be able to find my blog and feel like someone else understands.

      Good luck on your journey. It took us a little time to get this parenting gig started, but once it did, it’s been an amazing ride. I hope for you, and everyone else “in the trenches,” that it happens soon and in the exact way you need it to. ❤

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