Won’t Be Idle With Despair

If I could tell the world just one thing…

The January air was cold, crisp, the sort of Chicago winter that seared your boogers to the insides of your nose and made your eyes water, your tears freezing as soon as they emerged from your tear ducts. I was just crossing the river, the grey of the cold January afternoon oppressively suffocating me as I noted the chunks of ice floating down the river. I wished I could fall down there with them, and wake up to a new day, a new life.

I was driving my dad’s old car, the roads wet and icy, the salt making a jaunty click-click sound against the bottom of my red Acura Integra, the one I’d inherited to replace my del Sol for something, well, with a backseat. A backseat that held one tiny infant, with a shock of black hair who squalled and cried, even as we drove. I hadn’t slept in days. To keep me awake, and to drown out the sound of my tiny sons wails, I put on one of my most favorite Christmas albums.

….it’d be that we’re all okay.

I was baffled by my new baby.

His dislikes included me, air, food, being touched, the world, gravity, the universe, and, well, life. Babies are supposed to love this shit, right? If babies are supposed to love this shit, then it’s clearly some character flaw of mine that he couldn’t even look me in the eyes.

In 2001, autism wasn’t The Thing – no one walked, or ran, for a cure – no one really knew much about it. And I certainly didn’t suspect that he had a problem.

He was just…temperamental. And he probably sensed that I was a bad mother, a piece of shit person, and could tell that he’d drawn the shitty card when he was born to me.

In the end, only kindness matters.

My heart was as heavy and oppressive, like my mood.

I’d waddled back home at twenty, pregnant with my young son, tail between my proverbial legs. My parents graciously allowed me back into their home and helped me set up a nursery for him, but, like any other kind deed, this one came with strings so long that I nearly hung myself on them. And my son’s father, angry that I’d had the audacity to get pregnant while on birth control, (while we get along now) well, he wasn’t particularly kind to me.

The last person I recalled being truly kind to me was one of the nurses in the hospital as she wheeled me out to the car with my new baby.

Five months before.

Not to worry, because worry is wasteful and useless in times like these.

Since I could recall, I’d dreamed of going to medical school and becoming a doctor. I’d never considered having children, never thought that I’d be a parent but here I was. And there he was.

I couldn’t figure out what next. If I wanted a life with my son, I’d have to give up on the only dream I’d ever known – becoming a doctor. If I didn’t want a life with my son, well, I could go to medical school, see him on weekends and in between rotations, living with my parents until I was forty, but despite his dislike of me, I was pretty fond of the little guy.

Stuck between a rock and a bigger rock, the future a black question mark of yawning uncertainty, I drove aimlessly around, trying to make the kid sleep, trying to outrun my demons, trying to figure out what next.

I won’t be made useless.

I’d never not had a plan before. It was like waking up to realize I’d lost the right half of my body. I’d dreamed of medical school since I was a toddler – the dream was over. But what to fill it with?

I didn’t have that answer. I didn’t know where to look for an answer. I didn’t know what to do next. The emptiness was overwhelming.

My hands are small I know, but they’re not yours, they are my own.

Everywhere I turned, someone else was telling me what to do. What not to do. How I was ruining my child. How I needed to do this or that. How I shouldn’t ever think of doing this again. I was twenty-one – there was no one in my corner telling me that I could do it if I just got all EYE OF THE MOTHERFUCKING TIGER about it.

I’ll gather myself around my fears.

Maybe I wasn’t the most qualified of people to raise my son; maybe my brother and sister-in-law were (my mother had asked them if they’d adopt my son should I “go off the rails on a crazy train”). Maybe he was better off without me. But he wasn’t going to get that chance. Whether he liked it or not, I was going to parent the SHIT out of him. I was gonna get him a family and we were going to make it.

For light does the darkness most fear.

The dark days outnumbered the light ones for a good long time. I had to learn to smile and nod as I was told that I was doing a bad job at parenting. Every jab, every poke, every complaint about me, I learned to smile and nod. “Yes, that’s right, I am a bad mother, you’re so right.” I ground my teeth into nubs and smiled.

Soon, my path veered dramatically. I entered nursing school, found a new plan and met the man I would marry. The man who would encourage me, after only reading emails I’d sent, to write.

I won’t be made useless.

Maybe my “plan” was gone – so what? The world was a big place – plenty of room for new plans. I would not be made useless. I would do something to make my small boy proud. I’d get him the family he needed, I’d get away from his father, and I’d give him the siblings that helped the autistic child emerge from his own world to join ours.

I did. I found my words as he found his, and together we were able to carve out a new plan – a better plan.

I won’t be idle with despair.

There have been months, years full of despair, sadness. My heart, however, has never been as empty as it was that day, crossing the mighty Fox River, me against the world. If I could tell my former self that day that, “hey, your life will be nothing like you thought it would be, but that’s okay,” I would. I’d give that girl a hug. I’d let her know that it was okay to be scared. It was okay to feel weak and powerless because, well, she was.

But not deep inside. Deep inside, there was a drive, a dream, to become more. To be better. To do something with herself.

And she has.

And I will.

I am never broken.

Heart. Stop.

“Mom, do I have autism?” my eldest peered at me through the eyes so dark and deep I could easily be swallowed by them.

My heart stopped a moment, my dancing cactus videos forgotten entirely, unsure of how to proceed. It was a good question. Something we had never spoken of because, well, it never mattered.

The answer was yes, yes he did have Asperger Syndrome. He’d had it since I’d pushed him out of my delicate girl parts, trying desperately to bring him to my breast on the birthing table, only to have him shriek in horror and disgust, something he did with alarming frequency for the next several years.

Clothes made him crazy, their textures too binding, the tags an endless source of frustration. Being held, something most babies (I’d heard) loved, well, he’d prefer to lay on his back, watching his mobile spin for hours upon end, the deep greens and blues soothing him in a way I never could. It broke my heart until it didn’t anymore because eventually, I stopped trying to scoop him on up, cuddle him close. I loved him from afar, my tears dotting his crib sheet as I stood above him, wishing I knew what went on in that glorious brain of his.

By age one, his love of the planets was obsessive. While he couldn’t tell me the name of the animals that lived in the house (dog, cat, for those interested), he could tell me all of the names of the moons of Jupiter – his favorite planet – and identify them from even the grainiest pictures.

Speech severely delayed, by age two, he was enrolled in both speech and occupational therapy, dutifully trucking back and forth to the Early Intervention center, day after ever-loving day. Eventually, he’d been able to touch varying textures of dry rice and beans, eat few things beyond his standard diet of oatmeal, graham crackers and cheese, and adapt his fine motor skills so that he could pinch small things, hold a crayon.

Speech therapy continued until his fourth year. He’d gone from mostly non-verbal – excepting, of course, anything related to the cosmos – to using a handful of words; more each day.

Our relationship had developed, too. While I’d still feel that scar tissue tightening up whenever he chose anyone but me to love on, I accepted that his love was different; unique. Just like his beautiful brain. It was simply different. Not wrong, not right, not better or worse, just different.

I accepted different.

Through all of this, we didn’t bother with labels. Not in my house. Ben’s Asperger Syndrome was no different than saying he’d inherited both my brown hair and long eyelashes. It was just a part of who he was. And that didn’t deserve a label or hushed meetings around the table.

I knew the slippery-slope of labeling and I wanted him to grow up as himself, not as what a syndrome may or may not dictate about him.

So when, at age ten, he asked me if he had autism, I didn’t know quite what to say.

So, with widened eyes, I spoke the truth:

“You have something called Asperger Syndrome. You have since you were a baby. You went through speech therapy to help you talk and other therapies to help you eat. Remember how your sister had speech therapy? You did too.”

His eyes opened so largely I feared they would fall from their sockets.

“But I’m okay?” he asked.

“You, like your grandfather, your uncle (my brother) and your own brother, well, you’re just quirky. You have things about you that are different than everyone else. But really, EVERYONE is different. Different is awesome. So don’t think about yourself as a “syndrome,” think of yourself as Ben. Because THAT is who you are.”

He smiled, the crooked teeth he’d gotten from his paternal grandmother peeking through, making him look like a bobble-headed jack-o-lantern.

“Yeah. You’re right. I’m just Ben.”

“I wouldn’t have you any other way.”

He then scampered off to celebrate his Ben-ness with his siblings.

Legacy

I knew from a very young age what I was going to be when I grew up. While the other kids focused their sights upon flying into space or fighting fires, in kindergarten I neatly drew a picture of myself, one that my mother has framed somewhere, that says, “Rebecca Sherrick” “Obstetrician.”

Because that was what I planned to be.

Would it have worked out if I hadn’t popped Benjamin from my nether regions, a pregnancy unexpected, a life forever changed by the furious meeting of two gametes?

I honestly can’t say. Who can see what might-have-been when what-is is right in front of our faces?

When I went back to school, a single mother with an autistic baby slung ’round her hip, I re-enrolled (which is highly UNLIKE Rick Rolling) as a nursing student, which meant two things:

a) None of the credits I’d obtained during my brief stint as a Bio/Chem major were accepted and I had to re-enroll in different, easier versions of similar classes.

2) I had to come to terms with letting go of a dream I’d had as long as I can recall.

The first year of pre-req’s was heaven for me. I’d already completed the more complicated and challenging versions of the same classes, so I quickly rose to the top of the class. I was chosen to TA for numerous science classes, putting me smack-dab back into the lab.

I couldn’t have been happier.

I left my first class as Student Nurse Aunt Becky in tears. I’m sure I looked half-insane, walking to the train, my bag full of books I didn’t give a shit about, openly sobbing the kind of ugly cry that comes from a broken heart.

Rather than entrench myself in sorrow any longer than I had to, I simply made new plans. I’d re-enroll in school and become a microbiologist once my son was old “enough.” I’d juggled single parenthood and schooling as much as I ever wanted to and I intended to see at least some fraction of the kid’s childhood.

I did and I have.

Nursing career handily abandoned as, for the first time ever, I was able to stay home with my son, things didn’t go quite as expected. The quirks I still found so charming made for lonely company as he preferred to live inside his head to being with his mother. Coming off an over-worked, beat-my-A’s-with-more-A’s high, I had hours upon hours each day to fill.

With something. Anything to make my life feel worth living again.

I obsessed over the grout between bathroom tiles – which, no matter how many toothbrushes I wore to nubs- could never quite come clean, my son happily watched the same video about the planets over and over. I waited for something, anything to tell me what the fuck I was supposed to do next.

“Why don’t you start a blog?” The Daver asked after I tearfully wept, once again, that “I hadn’t worked my ass off to sit around and wonder which fucking brand of dishsoap was better.”

I couldn’t have thought of anything I’d like to have done less than blogging. I’d never so much kept a journal, so blogging, writing down my thoughts so that someone, somewhere could be equally bored by them?

Fuck no.

Until I decided to do it.

Learning that I could write things that didn’t involve this:

was like learning I could breathe underwater. All this time that I tried to find meaning in the bathroom tiles had been for nothing. Because I had this ability and I could use it.

And now I do.

I’ve spent nearly four years here at Mommy Wants Vodka, and three before that at Mushroom Printing, telling stories. Some good, some awful, most mediocre. I’ve used my words to let you into my world. To see things as I do. To touch each of you reading these words in some way, even if it’s a disgusted “God, this chick sucks.”

The words I have written, the friends I have made, the connections I’ve foraged has been so much more than I’d anticipated. I have been beyond blessed.

And yet, I’ve been thinking a lot lately about going back into academia. To return to those glorious calculations and those beautiful microscopes, leaving the world of words squarely in my past. I wonder if that’s even possible; to shut one beloved door so firmly. I don’t have an answer.

So I’m left wondering: is this my legacy? A few pixels blinking on your computer screen? Words turned into sentences turned into paragraphs?

Moreover, is this enough?

The Way We Were

The Realtor described my basement as an “in-law arrangement.” It baffled me when I saw it because it was two finished rooms, a wet bar, and a bathroom complete with whirlpool bathtub.

It wasn’t until I saw the room with the washing machine and dryer (no carpeting or prettying up here, folks) that I got what she meant: a Dungeon. I could totally chain up rogue parents who wanted to move in against the walls, throw leftover chicken bones down the laundry chute and hell, there was even a (laundry) sink for water!

I crossed off “in-law arrangement” and wrote in “Awesome Dungeon” on the glossy brochure.

We made an offer the next day.

For quite awhile, The Dungeon was empty. We’d moved from a three-bedroom condo with no storage to a three-floor house with all kinds of storage, and at the time, there were only three of us. The amount of space felt gratuitous.

Eventually, I bought shelving and Rubbermaid bins, carefully sorted our stuff (I am, after all, my father’s daughter), labeled them with a Sharpie (I heart Sharpies) and stowed them on the shelves.

Then, well, life exploded.

The Dungeon turned into The Room Where We Shove Crap We Don’t Know What Else To Do With (Bonus! Sorted Shelved Stuffs).

My coveted fiber-optic Christmas tree? Plop it there. Alex’s Halloweenier Costume? Eh, put it in The Dungeon. That Ugly Mirror I Bought But Never Hung Because It’s So Fug? Put ‘er down there. Deal later. The picture of the majestic jaguar that appeared out of nowhere and is too bizarre for even me to hang? Leave there; give to Dave’s Mom.

Cleaning The Dungeon is something I’ve wanted to take care of for a long time, and this weekend, after a long, anguished fight with The Daver, I saw no better time to begin. Some people eat their emotions, some drink them, others escape through television and movies. Me? I strap on my Super Becky Overachiever cape. I purge, I organize, and I clean. It helps organize my brain and process these weird things that you people call ‘feelings.’

(feelings are bullshit)

I started in the middle of the room; tossing what we didn’t need, storing what we did, and donating anything salvageable. Within a couple of hours, I’d cleared a path to the shelves. Even with my careful labels, I no longer knew what they really contained.

I hauled out a large unlabeled blue bin and popped it open.

Freeze-frame.

The box was full of craft supplies.

We all know that I’m as crafty as a blind woodchuck, but those supplies hadn’t been for me. Shit, I’d sooner gnaw off my fingers than craft something.

Standing in that basement, it was as though time had been frozen inside that box.

I’d birthed a baby boy, Benjamin, in August of 2001. In November, I’d gone back to work slinging pizza and beer. I enrolled in nursing school full-time in December. I worked weekends, cramming organic chemistry compounds into my brain between tables. Weekdays were spent in school, weeknights I studied. 7 days a week, no summers off, no rest for the wickedly weary.

My three-year old son watched me march across that stage as I graduated at the top of my nursing school class. I’d so wanted to do right by him. Benjamin, son of my right side, named that, hoping he’d pick up the very best bits of me. My right sides.

Ben and I moved into the condo in Oak Park post-graduation. I’d taken time off before the national nursing board exams, anxiously excited about being a Mom – a real one – for the first time.

I’d neglected to remember one thing. One very important thing.

All of those years I frantically ran around, trying to do right by him, I’d ignored it; reassured myself it would be okay, “when we were a real family.”

My son, Benjamin is autistic. Autistic kids are like Siamese Cats. They choose Their Person (or people) and That’s It. The rest of the world can rot in fucking hell so long as Their Person is near.

I was not his person.

Never have been. Not at birth, not after birth, not ever. We mostly got along but I was most assuredly Not His Person.

His Person was my mother, who now lived 45 minutes away. Dave was Another Person, but Dave also worked long hours, frequently not home until bedtime. Even when home, there was always more work.

Just me and my son. All those years I’d spent longing to be a real family, to feel like a mother, to be with my son…he hated it.

Rejection seeped in.

I went to bed alone each night. Dave working in the office; Ben fast asleep under the mural of The Planets we’d painstakingly painted, emptiness creeping inside me. “Tomorrow, it will get better,” I’d try and reassure myself, denying the sadness sitting on my chest, making it hard to breathe. “This is what you wanted. How can you be sad?”

Each night, the emptiness looming, I reassured myself with something else; another bright side.

When my friends complained about my son’s eating habits, my inability to “go out and party,” and how obnoxious my kid could be, I wrote it off. They were single and had no kids. I never allowed myself to feel hurt by that…or anything else.

When it was clear that Dave’s job was his wife, well, “he was doing what he had to to support his family. Look at the economy! This is what you wanted!”

My son watched a documentary about the Planets and my husband worked constantly. I’d gone from feeling purposeful to puttering about the condo; a shell of my former self, in a few short weeks.

I tried to fill my days. I swept the floors twice daily, washed them at least once. I washed and rewashed dishes. I scrubbed the bathroom tile with a toothbrush. Anything to stave off the loneliness.

Halloween-time, I thought maybe Ben and I could find some common ground: crafts! Off to the craft store, we went, where I bought a fuckton of crafty shit: paper, glue, crayons, scissors, glitter, stuff I’d have gone apeshit for as a kid. Ben was too busy organizing the shelf to notice. Oh well.

Panting and sweaty, I lugged our booty up to the third floor and spread it out on the dining room table. We were going to make MOTHERFUCKING PUMPKINS.

Except Ben had turned his Planets movie and was entirely uninterested in making MOTHERFUCKING PUMPKINS with me. I paused the movie. He wept for Grandma. That rejection finally opened a deep chasm of emptiness inside me.

Halfheartedly, I led him to our Craft Project.

Big, fake, cheerful smile on my face, I painted my MOTHERFUCKING PUMPKIN orange. Ben sat there, weeping for my mother. Smiling so hard that it hurt, I painted his pumpkin, too. He sobbed. I sent him back to the movie.

Then, I sat back down in front of the stupid pile of art supplies, buried my head in my hands, and I started to cry, too. Not the delicate kind of Soap Opera Cry, but the desperate, hurt, miserable cry that emanates from your bones.

I shoved the craft crap into that blue bin where it sat untouched for many years.

A perfectly captured freeze-frame of the way things were.

I held the tube of orange paint and overhead, I heard my three children thundering about, their footfalls booming as they happily chased each other. Their laughter echoing around the house; overcome with joy. I smiled as I repacked the paint, saving it for a cooped-up “I’m BOOOORED” day.

As I closed the lid, I marveled at the way we once were.

And the way we now are.

college-graduation-aunt-becky

The way we were.

ben-makes-a-pumpkin

The way we are.

How The Light Gets In

I wanted to thank you for your incredible display of warmth and kindness on my post about autism. When I say things like, “I’m honored to know you,” I’m not being a hokey ball of cheese, I mean it. I’m incredibly lucky to have such an amazing group of Pranksters in my life. Thank you. To everyone who commented, tweeted, emailed, or read the post, I thank you.

Historically, it’s been hard for me to talk about autism and how it affects us because I simply don’t know what to say about it. As so many of you said (and like so many other disorders, diagnoses and conditions) it’s not the same sort of disorder for everyone, but because it’s so prevalent in the media, everyone is an expert. That makes it difficult when “experts” like Jenny McCarthy and the guy down the street want to lecture you on the danger of dioxin because they “know” better than you do.

Simply put: they don’t.

But when it’s something that’s so close to your heart, no, when it’s PART of your heart, it’s not something you just want to lay out there for Rando Joe Schmo to trample on.

I was wrong.

Because it dawned on me as I read all of your incredible stories what power we have. Each of us. What a unique platform we have at our disposal.

Before, if we wanted to be heard, we had to write a book, hope it was interesting enough to get picked up by a publisher (whose bottom line was, of course, big fat dollar signs) hope that the book was read by enough people to be considered a success and then maybe, just maybe, we’d be heard by the Right People. Newspaper and magazine articles went through a similar process, only to be read by a smaller audience. The common denominator was that people had to pay money to access the words you wrote, IF you were enough of a success to be published at all.

But in the era of self-publishing, it simply doesn’t matter what your pedigree is. People who’ve never written a single word can start a blog with a few keystrokes (see example: Mommy Wants Vodka) for free. It costs nothing to read the words I write. Not a cent. Sure, you may pay for your internet connection, but that’s different.

You know, Pranksters, I’m not a fan of self-centered blog “ZOMG BLOGGING IS THE BESTEST!!!!!!!!!!” circle jerks, but I’m constantly amazed by how unique our platform is.

We can give a voice to those who have none. We can give a face and a name to things you’ve never heard of. We have power to do so much good.

People read us to connect with other people, not the cold, clipped, polished words in a magazine. Our blogs have the human element that would be neatly left on the editing room floor of any newspaper. We’re too raw, too unfiltered, and too real. But it’s our flaws that make us interesting and our pain that binds us together.

If you’ve read my blog for any length of time, you know what a neural tube defect is. You also know my daughter, Amelia, was born with a very rare one called an encephalocele. It’s likely you hadn’t heard of it before you met Your Aunt Becky and her daughter Amelia. I’d learned of neural tube defects in school and I knew of encephaloceles…but typically in conjunction with Chiari Malformation.

Now you’ve all heard of it. You know that THIS girl had one:

Encephalocele - 2 years later
Amelia Grace

Over the past two years, I’ve given encephaloceles a voice. And a face. This is what an encephalocele looks like.

Encephalocele Surgery
Amelia's Scar
Encephalocele
The Shirt Says It All
Encephalocele
Sparkle Princess of the Bells

Through my blog, I’ve met people who have been prenatally diagnosed with encephaloceles. I’ve met adults with encephaloceles and other neural tube defects. I’ve become a March of Dimes Mom. I’m planning a resource website for those with encephaloceles because none exist. I’ve become an advocate and a voice for encephaloceles.

I became a voice because it was the right thing to do.

You just reminded me that it’s still the right thing to do. Now it’s my turn.

So this is me, Your Aunt Becky, encouraging you to speak your truth. Stand up tall and proud for what you believe in. Give a voice to those who have none and a hand to those who may not think to ask.

Pull those skeletons out of your closets and make them dance the motherfucking tango.