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.