The Children’s Book I’ll Never Write

It probably doesn’t surprise anyone reading this that, growing up, I was determined to become a writer. (Or, more to the point, a published author, like Stephen King, because how cool would that shit be? Write a novel, get critical acclaim, scare a bunch of people and earn a boatload of money? SIGN ME UP.)

One of my favorite characters in any book was Harriet from Harriet The Spy.  She was a bona fide writer — her class columnist– and I idolized her. Every day in third grade I’d come home from school, put on my trench coat, and hide in the closet to “spy” on my family. Then I’d go outside on my “route” and “spy” on my neighbors — I’d look in their windows with binoculars and everything. (Sorry neighborhood peeps; I wasn’t aware that was illegal.) I filled dozens of composition books with musings and observations and vowed that I would use my notes one day to write a sprawling book of incredible fiction. (And then I re-read them one day when I was fourteen, got terribly embarrassed and self-conscious, and chucked them all in the garbage. So much for that plan)

I even dressed like her — trench coat and all. God help me, I did.

All this to say — I’ve always wanted to turn my life into a story. Even the ugly parts, the embarrassing parts. I’ve learned not to throw them away. Now that I’m older, I appreciate them more.

When I emerged from the haze that was Henry’s diagnosis, something that absolutely rocked me to my core, I started writing about it. The shock. The ubiquitous sick feeling in my stomach, thinking about raising him. The absolute terror of anticipating a child with medical special needs.

And then I had the baby and it was kind of like

Well that was not nearly as bad as I thought it would be. Huh.

The terror went away almost instantly — not because Henry had zero medical issues, but because he wasn’t just the sum of his diagnoses any longer. He was a little boy with a personality and his own quirks and likes and dislikes, and oh yeah, he had feet that turned inward or whatever (big deal). So Henry was born and the terror disappeared. But the urge to write did not.

More and more as he grew, I’d write about spina bifida as it related to Henry — mostly on this blog, but sometimes in an actual magazine or speaking engagement, to my eternal amazement. And more and more, I toyed around with writing a book — something about disability, something about acceptance, something about how kids with spina bifida are normal and awesome and totally-not-terrifying like I had once imagined they would be. One day, during an interminable wait in the allergist’s office, I noticed that zero books at the doctor’s office featured kids with disabilities. Quickly, I searched Amazon on my husband’s iPhone and noticed that books featuring spina bifida kids (or any “disabled” kids, really, were few and far between). It bugged me.

Eureka, I thought. I’ll write a children’s book. Immediately I grabbed a napkin out of the diaper bag and started writing down some thoughts — in crayon, no less. A children’s book would be perfect, I mused. Not only could I do my part to normalize the ‘bif and write a lead character who happened to be disabled, but I had an urge to write and a fabulous cartoonist at my disposal. Our children’s book was going to kick ass.

Before we left the allergist’s office, I had a rough outline and even a title — Spina Bifida and That’s Okay. If I were fourteen, I would have crumpled it up and thrown it away, because I realized later that it was didactic and embarrassing, but I’ll share it with you now, because I’m older and it’s good to learn from our embarrassments: The book profiles several kids with spina bifida and their various abilities — Johnny can walk, Lucy walks with assistance (AFOs or KFOs), Gertrude doesn’t walk at all (wheelchair). And that’s okay. Some kids use feeding tubes, some eat through their mouths. Blah blah blah. And that’s okay.

Eventually, I realized I wasn’t talking to a hypothetical kid audience, and that’s where the embarrassment kicked in. I wasn’t talking to kids at all.

I was talking to other potential parents. I was talking to myself. My child might not walk — and that’s okay. He might have a learning disorder — and that’s okay. His “normal” won’t look like everyone elses’ “normal.” That’s okay. You’ll be okay. We’re okay.

One thing I’ve noticed so far, on our spina bifida journey, something that’s shocked me, is that it’s not the kids who need to be coaxed into accepting people with spina bifida — it’s the adults. Whenever we’re at the grocery store and a kid sees Henry’s cast, that kid is the first one to run over and shout, “COOL!” The parent, lagging behind him, is the one pouting and going, “Aww! What happened? Poor guy!” In general, It’s the adults who are terrified, who abort “defective” fetuses in staggering numbers, who hem and haw over making things like playgrounds accessible, who treat disabled people like props and publicly humiliate them (I’m looking at you, Kanye). If anyone needs a primer on love and tolerance, one thing is obvious: It’s not the kids.

My family, when they learned about Henry, was unanimously supportive. We were all terrified, shaken, but there wasn’t one family member who didn’t reach out and help us in whatever way we needed, thank God. But it was my cousin Grace’s reaction that really stunned me, in the best possible way. When our Aunt and Uncle sat her down and explained that Henry wouldn’t be able to walk or run around like all the other cousins, she weighed that fact for a minute, and then shrugged. “That’s okay,” she said. “We’ll just play on the floor. Some of the best games are on the floor.” That is the reaction I wish I could have had, instead of crying for three days straight and thinking my life was over. Kid with a disability? Can’t stand or walk? Well … whatever. We’ll just play on the floor. The floor is better anyway. Grace, at six, handled his situation with more tolerance and acceptance than I could have dreamed of, as an adult twenty years her senior. That’s impressive, dude.

Grace’s reaction, essentially. Along with every kid I’ve ever encountered.

I’ll never write Spina Bifida and That’s Okay, because kids like Grace simply don’t need to be reassured. Spina bifida is “okay” — and she ended up telling us.

(By the way, I realize that Henry is not yet two, and my experience with other kids and disabilities is painfully slim. I realize that the minute I press “publish,” Henry could be teased and taunted at the playground by some kid who is scared of and confused by the fact that he can’t yet walk, that his feet are weirdly shaped, that he still has bandages covering his foot from his recent surgery. And if that happens, I’ll eat my words and write the stupid book.

… Right after I burn that kid’s house down.)

Bonding with the babies, in spite of myself

Four in the afternoon is what I like to call white-knuckling time. Right around four is when both children get really tired (that’ll happen when you wake up at 5:00 AM and refuse to take a nap — go figure) and one of two things happen. One, they either get inexplicably hyper and run/crawl back and forth from the kitchen to the living room, demanding graham crackers, or they get crying-angry. Crangry. Everything upsets them — they want peanut butter toast instead of the delicious organic dinner and probiotic-laced chocolate milk I prepared for them. Henry wants to take the knives out of the dishwasher and crawl around with them. June wants to watch Daniel Tiger’s Neighborhood but NOT THAT EPISODE YOU DUMB BITCH, and cue the screeching, art-supply-throwing meltdown in the middle of the living room floor. From about 4:00 onward Lou and I start white-knuckling it and counting down the minutes until we can throw them in bed and enjoy some motherfucking SILENCE, REAL TALK.

I have this horrible habit of staying up long after I should have gone to bed (like ten thirty, you guys) because I love the feeling of not being hounded by two demanding little tyrants. I’m really tired every morning but oh, the freedom of eating peanut butter toast and watching Netflix for hours and hours is the only thing that keeps me going some days. So immediately after we put them down for bed, I head straight to loft with my laptop and a bag full of those honey-mustard pretzels and nobody is allowed to talk to me or ask me to do anything for the rest of the night. My husband joins me in the loft eventually and sits in his reclining chair and draws awesome comics while he watches old episodes of 30 Rock. And that is romance, y’all. That is why we’re happily married and have been best friends for seven years now. Deep conversations? Candle-lit dinners? Take that noise somewhere else. After a full day of toddler tantrums, I just want to be left alone to eat pretzels and scroll mindlessly through a bunch of hilarious gifs.

Inevitably, every single night, I end up on facebook scrolling mindlessly through pictures of my own children, because I am addicted to them like crack. I cannot get away from them. The first hour or two after they fall asleep I’m like, yes, I am going to stay right here with my netflix and pretzels and I’m not getting out of bed unless there’s a fire, and even then probably not. After a couple hours, though, I pull the earbuds out of my ears and start telling Lou about the hilarious things June said during the day. “Oh! I forgot to tell you what Henry did!” is how most of my sentences start after 8:00. By 8:30 I’m wandering in their room “just to check” on them, hovering over them like a crazy ex-girlfriend, because they are just so breathtakingly beautiful with such pillowy cheeks. You can’t not kiss them. And then maybe you kiss the baby and he wakes up and starts whimpering because he wants to nurse but that’s okay because you missed him anyway.

Ewwww! Creeper, no creeping! But yeah I’ve totally done this to my children.

Maybe it’s because I have a panic disorder but I have this weird anxiety that I’m not “bonded enough” with either of them. I don’t know how much more love it’s possible to feel for these people, but I always have this nagging fear that if I’m not constantly enjoying them, it means I haven’t bonded with them enough and they’re going to develop Reactive Attachment Disorder and turn out to be stabbers.

God knows I didn’t get to hold either one of them right after they were born. Not that I’m bitter — it was a decision borne out of choice and necessity, and with both of them I remember feeling very zen about it at the time, and even now. I have years and years of getting-to-know them ahead of me, I thought, as the nurses wrapped up June and brought her over to my husband. But then a few weeks later, in the hormonal, sweaty hell that was post-partum anxiety, I cried as I wiped off my back-sweat with a towel: What if I hadn’t bonded with her enough?! What if I didn’t really love her?!

June’s birth was relatively easy, as births go. Not even a day of labor, just a few hours of really hard labor (mitigated by the epidural, thank you Jesus), less than an hour of pushing, and she was here. Afterward, however, was when it all fell apart — already anemic, I retained my placenta and hemorrhaged everywhere. Two hours later I woke up — weak from blood loss, loopy from the drugs, exhausted from the delivery. I was still half-awake when my husband handed me the baby — swaddled and sleeping, not the screaming newborn I had pictured squirming naked on my chest post-birth. I didn’t feel a rush of love — relief, maybe, that we had survived. Contentedness, knowing that the hard part was over and I was free to enjoy my baby. But mostly I just felt like going back to sleep. I had been awake for 36 hours at that point and was on the verge of needing a blood transfusion; sue me.

Three days later, we were home and I still felt like I had been run over by a truck — shaky, aching, and overwhelmed with that new-mom exhaustion you can feel all the way down to the marrow of your bones. At one point, my mom scooped the baby out of my arms and shooed me into my room to take a nap. Wide-awake but nauseous with exhaustion, I burrowed under the covers, closed my eyes — and nothing. I waited — ten minutes, fifteen, twenty — on the verge of sleep but unable to fall all the way under. My heart started to race. Dear God, I thought, if I don’t sleep now, June will wake up and need to eat, and I won’t have another chance to nap for who knows how long. Until night-time, at least. Oh wait, she doesn’t sleep then, either. Go to sleep, dummy! Sleep NOW! Amazingly, this didn’t help me sleep. I pulled a sleep mask over my eyes. Put headphones in my ears. Waited, waited. Nothing. My heart started beating faster. I started whimpering, then full-out sobbing. I was never going to sleep again. I started dreading the baby, fearing the baby. I never wanted to see the baby again. I just wanted to sleep and sleep and sleep. Oh God, I begged, please don’t let her walk in here with the baby.

Right on cue, Mom walked in with the baby. I was crying so hard I could barely see them through my tears. And then I did see them — my baby — and my heart soared. “Hiiiiii!” I screeched, probably too loud, suddenly feeling the weirdest mixture of miserable and elated. My baby! She was here! I was still tired, terrified, and every muscle in my body ached, but now, as a consolation prize, I got to hold my precious, pink little baby girl and smell her fuzzy head as she nursed. I was the poster child for post-partum anxiety — sweating, unable to sleep, overwhelmed — and sick with love for my little baby. Yay! I thought, holding out my arms and making gimme-gimme-gimme hands at her feverishly. The baby’s here, the baby’s here!

At some point in the first few days, completely unbeknownst to me, June had gone from a mewling stranger that I tolerated nervously to a snuggly, precious little creature whom I loved — genuinely loved, conventional “bonding” be damned. We didn’t do skin-to-skin with either of them right after birth — the hemorrhage got in the way of that for June, obviously, and Henry had to be whisked off for his myelomeningocele surgery — so that fabled rush of post-birth oxytocin is something we all missed out on. But we bonded. I started loving her. I don’t know when it happened, but it did. It felt like crazy, hungry, desperate fear for her safety until I got my antidepressants straightened out, but it was love, it was attachment, whatever you want to call it, and it was there.

I still feel it at four in the morning, when Henry wakes and shrieks like a falcon until I stumble over to his crib and thrust a sippy-cup under his nose. God I’m so tired please go back to sleep oh hiiiiii sweet baby boy, look at those precious little lips! When I crawl back in bed there’s a lump taking up most of the space on my pillow, and I remember that June crawled into bed with me last night at midnight. I yuv you my snuggly girl she tells me, so I let her climb up into my bed, but just this once (yeah right.) And I think, They’re here, they’re here, my babies, they’re here.

Understanding Agoraphobia and Anxiety: A Frozen-Themed Guide

Sheesh, are you tired of hearing about Frozen yet? I know I am. My three year old isn’t as obsessed as most three-year-olds are, but, well, she’s three, so I’ve seen this movie like fourteen times. Somewhere around viewing twelve or thirteen, it occurred to me that Elsa and I have a lot in common.

Ever since my trip to India and my descent into a bona fide panic disorder, I’ve struggled off and on with some pretty severe agoraphobia. When I first started researching the term, I was skeptical. I can’t possibly have agoraphobia, I thought. Doesn’t agoraphobia mean you’re afraid of wide open spaces? It’s the opposite of claustrophobia, right? Not at all, actually. I had no idea what agoraphobia was when I was experiencing all its debilitating symptoms — but if Frozen had been around circa 2009, I would have definitely had a better understanding. The similarities between struggling with agoraphobia and Elsa’s struggle with her magical ice powers is stunning.

She may as well have been saying, “Don’t have a panic attack, don’t have a panic attack, calm your tits, don’t freak out…”

If you’re one of the two dozen people on this planet who hasn’t seen Frozen, the basic premise is this: Elsa and Anna are sister-princesses who live in a castle (real original, Disney). Elsa, for whatever reason, has magical powers where she can conjure up snow and shoot it out of her fingertips (think Spiderman and his ability to shoot spidey-webs). Elsa can control this power to an extent, but accidentally blasts Anna in the head with a snowball, almost killing her. After that, she’s (understandably) reluctant to use her powers at all, and isolates herself from her sister by hiding in her room. As she gets older, her snow-powers become harder to manage and are triggered by stress. She resigns herself to a life inside her castle in an attempt to control her powers.

In so many ways, Elsa’s snow powers are similar to anxiety attacks. Agoraphobics suffer from debilitating panic attacks, which are sometimes so severe that they become incapacitating — heaving, sobbing, hyperventilating attacks of pure terror. Agoraphobia in so many ways is really just a fear of having a huge, embarrassing panic attack in public — Hence why a lot of agoraphobics are notorious for never leaving the house. Myself, I had a paralyzing fear of travel. After the kidney stone debacle, I became obsessed with the prospect of having to pee and not being able to get to a toilet in time. This resulted in frequent anxiety attacks, especially when I had to travel long distances. Riding the el or the metra? Forget it. Traveling passenger on a long car ride on the highway? I would rather chew my arm off. What if I had to pee and we couldn’t immediately stop??? It consumed my thoughts. When I did have to travel, I’d routinely have to pull into a nearby CVS and quietly cry — I was so sure I’d either pee my pants, or be so anxious about peeing my pants I’d have a humiliating freak-out and humiliate myself in front of everyone. Eventually, it became easier to just never leave the house. I could always make it to the bathroom in time when all I did was sit on the couch all day. I didn’t have to worry about losing my shit in front of a stranger (figuratively and literally) and bawling in public. Home was comfortable; home was safe.

Like Elsa’s powers, my panic attacks were triggered by stress, difficult to control, and extremely public. So when Elsa cowered in her room while her sister crooned “Do You Wanna Build a Snowman?” through her bedroom door, my heart ached. Yes, Anna, she wants to build a snowman with you. She really does. She doesn’t stay in her room because she wants to — she stays in there because she can’t control herself anywhere else. She’s being held hostage, and she hates it — but it’s the only way she can control something that’s so painfully uncontrollable.

Anna represents our non-mentally-ill society writ large — confused, trying to be understanding, but painfully oblivious. Throughout the movie, Anna peppers her sister with obnoxious questions that belie her ignorance of Elsa’s struggle: Can’t you just fix Arrendale? Can’t you stop the snow? Why do you shut the world out? What are you hiding from? Isn’t it obvious, Anna? She’s afraid that if she goes outside she’ll shart snow everywhere and humiliate herself. And she does.

Whoops. Better stay inside so it doesn’t get worse.

I avoided most social interaction when I was in the throes of my PTSD. One of the hardest things to endure were comments from well-meaning people who didn’t understand what it was like to have a crippling anxiety disorder. My favorite gem? Just don’t think about it. Why do you think about things that make you anxious? If you know someone with horrible anxiety and you’re tempted to ask them this question, do me a favor. Stop eating. Don’t eat for an entire day. Then when you’re scavenging the fridge for something to gorge, just don’t be hungry. Stop thinking about it. Why are you thinking about sandwiches? Doesn’t that just make it worse? Knock it off!

Ridiculous, right?

I don’t blame anybody for not knowing what panic disorders feel like, by the way. Why would they? I sure didn’t, until I was plunged into one. But sometimes the best thing to say is nothing. Or, in some cases, how can I help?

Or, in all cases, would you like some wine? Yes. Yes I would. A lot of it.

Shame was another huge component of my agoraphobia. There are combat veterans who react with more composure than I did. Had I been in combat? No. Had I survived a rape? Hell no. I had gotten a kidney stone and hadn’t peed for 72 hours — and now I was a sobbing, hysterical mess at the thought of it. Obviously, this was not something I was excited to admit. I imagined having a panic attack in public and having people rush up to me — oh my gosh, what’s the matter?! — and having to explain to them, nonsensically, about being afraid of peeing my pants, about all the shiz that had gone down in India. Nobody would even remotely understand. They would think I was nuts. Maybe they would even laugh at me, who knew? That was more than I could bear. So, I kept my anxiety attacks a secret. Can you imagine a worse pain? Struggling in silence for months and months — and then having someone laugh at you?

So I would go through stretches of time where I would convince myself that I didn’t have a problem. Panic attacks? What are those? I’m good. I’m fine. No anxiety here. Of course, this never ended well. And telling myself I didn’t have anxiety didn’t make it so.

You’ll never see me cry! Just kidding, I’m hysterical.

I feel awful for Elsa when I watch this movie. Her struggles must have been a thousand times more terrible than mine — after all, my panic attacks only ever hurt myself. But the social isolation? The embarrassment? The shame of not being able to control your body? The well-meaning confusion of everyone around you? Oh man. I get that. I get it.

I WOULD IF I KNEW HOW, DICKHEAD

Okay, this isn’t a perfect analogy. Elsa’s ice powers start off as a gift, of sorts, a talent — definitely a fun party trick, until it gets out of control and starts hurting people. That obviously doesn’t apply to panic attacks or agoraphobia. There’s nothing fun about hyperventilating in a Chicago gas station because you couldn’t get the bathroom key fast enough.

Agoraphobia is a curse — something unwanted and thrust upon you. Something that affects you every minute of the day. But after months and months of therapy, doctors visits, and medications, I think — at least for the moment — that I’ve gotten a hold on it. Agoraphobia still rears its ugly head often, but I haven’t had a bona fide panic attack in a few years. To extend the Frozen metaphor just a little further, I’m harnessing this curse, finding a way to use it and make it work for me — I’m writing about my panic, instead of letting it envelop my life.

It will always, always be here.

But I’m not a prisoner anymore.

 

In case you missed it… (LTYM videos are here!)

Back in January, I auditioned for a thing. And I got cast in the thing, to my great surprise. I wrote something like an introductory essay for them, and finally, I performed another original essay on stage at the Atheneum Theatre in May. The video is here.

 

 

(And yeah, I dropped the F bomb. Did you expect anything else? Thankfully, June had fallen asleep by that point.)

I won’t ever stop raving about how much fun I had participating in this show, and what an incredible honor it was to share the stage with such awesome women. Not only was it the most fun to meet and befriend a bunch of crazy-smart local women, but unexpectedly, it has kickstarted my love of writing back into full gear. You know when you’re watching basketball (or, you know, whatever sport, I can’t really relate because I could give a shit about sports) and you just want to get out there and play basketball so badly? Your legs start itching and you start visualizing yourself dribbling the ball, and before you know it every part of you is on fire to get out on that court and play some ball? That’s what LTYM did for me. Writing an essay, hanging out with some incredible writer-women, and being so sweetly encouraged by all of them has lit a fire under my ass to start writing, blogging, and reaching out to other writers again. And now after bed, my husband and I eat toast in our loft and I write my blog and query magazines. It is the most fun, and a hobby just for myself.

Listen To Your Mother is such an incredible program, and I highly encourage you to seek out your local chapter, write your own piece, and audition.

I also encourage you to watch the entire Chicago show. I got goosebumps at Lea’s piece. I fist-pumped in agreement with Andrea’s piece. I cried like a straight-up bitch at Meggan’s, Andrea’s, and Hyacinth’s (and Sheila Quirke’s piece, from the 2013 show). I cracked up at Keely’s and Saya’s (and I have to give a shout-out for my absolute favorite from a previous year — Marrianne is hilarious and the title of her piece made me literally LOL). And I listened in amazement at Sarah’s piece from the Arkansas show (a fellow Spina Bifida mom, what up!). You know what? Just watch the entire show. Of all the cities. Do it. I saw the entire Chicago show straight through at least three times during rehearsals and never got sick of it. Every story is unique, and amazing, and triumphant.

What a cool thing to be a part of.