I’m (NOT) all about that bass: my adventures in dieting

I figured out a couple months ago that the combination of having two babies in two years, eating a shit-ton of candy every day, and spending all of your free time on the Internet searching for reality TV gifs has resulted in about forty extra pounds of fat that’s just sitting on my midsection. It’s bad, guys. It’s really bad.

But … like … I found this hilarious, inexplicable gif and I can’t stop laughing. So totally worth it, right?

As of today, I weigh three pounds MORE than I did when I was nine months pregnant with June. Ouch.

Apparently you’re supposed to lose all your baby weight between pregnancies, but because I’m an unbelievable dumbass, I did the exact opposite. When June was about a year old, I looked at my enormous, stretchmark-laden thighs and my belly pooch and thought, hmm. Should I start an exercise routine and lose the extra weight? Or should I just have another baby, eat a bunch of candy, and fill out the pooch?

I chose the baby. Seriously. That was my actual train of thought at the time. I thought, well, since I already look four months pregnant, I may as well just be pregnant. Right?!

It made a lot more sense back then.

Anyway, I’m kicking myself for it now. Not the baby, obviously, because I was always meant to have him, exactly when I did. But I do wish I had tried — even half-assedly — to lose something. Even if I had done a plank. Just ONE plank. ONE PILATE, singular. Maybe if I had tried just a little bit, I wouldn’t be forty pounds overweight. But I didn’t, and I am, so here we are.

Me, refusing to exercise. I’m that enormous fat monster in the middle, in case you didn’t catch the symbolism.

So for the first time in my entire life, I’m actually trying to lose weight. And it sucks. It hurts so bad. I have to give up delicious candy and limit my meat intake and occasionally run even though nobody’s chasing me, and exactly WHAT is the point of living again?! Indeed, the only thing worse than not being able to eat candy is feeling like a fat little troll who looks six months pregnant and can’t fit into her XL yoga pants. When even your maternity jeans are too small for you, it really makes you rethink that third Snickers bar. Most of the time.

(The sushi cravings are ubiquitous, though. I don’t know that I could ever stop craving delicious, fatty tuna smothered in wasabi mayonaise. The other night I just went through Pinterest and “liked” a bunch of pictures of godzilla rolls that people had posted. You know. Just sittin’ around, liking pictures of sushi on a Friday night. Like people do.)

This RIGHT HERE. This right here is all I aspire to have in life. Side note, I found this on Google Images with the title “Godzilla Sushi Challenge.” Challenge? More like an APPETIZER. Bitch, please.

Side note: I really have to get off Pinterest before I wreck this “diet” thing.

So here’s what I’m doing to try and lose this “baby weight” (more accurately it’s “sushi weight”, but let’s just pretend like I have a little self-respect and pretend it was from the children):

1) Running. This is the most painful part of all. I love doing nothing. I lead what you call a “sedentary lifestyle.” I would so much rather sit on the couch and scroll through my tumblr account looking for gifs than hit the gym. In fact, for the past few months, since I’ve been trying to raise awareness for spina bifida in addition to getting more widely published, most of my time has been spent at the computer trying to accomplish both of these goals (in addition to copy-writing on occasion to earn some extra cash). Unfortunately, in order to lose weight I actually need to get off the couch and move faster than a snail’s pace. So I’m doing intervals of jogging/fast walking 2-3 times a week for 45 minutes each. Which is about as fun as you might think.

Sigh. Not anymore.

The upside to exercising (I hear), is that eventually you get “addicted” to the endorphins you get from exercise. Hoping that’ll kick in any day now.

2) Eating green shit instead of bread. All I have to say is THANK GOD for green smoothies, because eating 3-4 servings of green veggies a day is surprisingly hard. But thanks to green smoothies, I’m actually doing it! Here’s my favorite recipe. (And yeah, it has orange juice in it, which is loaded with sugar. But look at all the veggies I’m eating!):

One handful of frozen broccoli

1-2 handfuls of chopped fresh spinach

1-2 tablespoons of chia seeds

1/2 cup of frozen peaches/pineapples

1 chunk of fresh ginger

some avocado, if I’m feeling adventurous

half a bannana, if I need a sweet treat

orange juice

It’s unbelievably delicious, y’all. I don’t have one every day, but when I’m in a rush and I need green vegetables, it’s a total lifesaver. Try it.

3) Drinking so much water I might explode.

I do love a good can of soda. And none of that “diet” crap that tastes like drinking cardboard — what’s the point? Right now I’m drinking a few liters a day, or trying to. I’m not sure what a liter is, exactly. Let’s just say I’m peeing every thirty minutes. But my skin looks really, REALLY clear! Yeah, water!

4) NOT weighing myself obsessively every few hours. I’ll be honest — I’m the kind of person who wants immediate, drastic results. Otherwise, I get bored and discouraged. And hangry. Imagine my surprise when I stepped on the scale after day 1 of my diet and discovered that I had gained a pound. I looked at the scale and was like

Come to find out, you actually weigh more at night than you do in the morning. Who knew?! (Apparently everyone, but hey, I’ve never actually dieted or weighed myself with regularity before.) So when I weighed myself in the morning, I felt inspired (“Woo hoo, I dropped two pounds!”). And when I weighed myself at night, hoping for some fast results, I’d be devastated (“WHAT?! I gained it all BACK? I HATE MY LIFE. WHERE’S MY CANDY???”)

There’s a reason that Weight Watchers participants only weigh themselves once a week. So it looks like I’ll be following suit.

Right now I weigh (gulp) about 160. My goal weight is 125. Wish me luck!

 

Erase the fear, embrace the bif

Spina bifida can be scary. There’s no doubt about that.

When we got Henry’s diagnosis, we were both utterly terrified. I don’t think there are any words to describe the terror, other than the sinking, falling feeling you get on the first big drop of a rollercoaster. Nope, no, no, stop, I want to get off, you think. It’s too much, it’s too scary. I can’t do this.

The doctor’s words fell on us like cinderblocks: Neural tube defect. Hydrocephalus. Enlarged lateral ventricles. Myelomeningocele lesion. Severe case. Bilateral clubbed feet. And after he was done, I kept asking the same question, over and over in various ways, wanting to ease the fright: But what does that look like?

Henry’s diagnosis was very accurate. The terminology was very medical. The problem was, it wasn’t very descriptive — at least not to two terrified parents who hadn’t been to medical school. Words like “neural tube defect” didn’t tell us anything. We had no idea what lateral ventricles were or what it meant for them to be enlarged. We could piece together what hydrocephalus meant, but it told us nothing about our baby’s quality of life.

“But what does this look like?” I kept asking. “What does this mean?”

Could he grow out of this?

Would he be in a wheelchair?

Would he walk?

Would be be deaf? Blind? Paralyzed? Mentally retarded? Would he live? Die?

These are all things we ached to know. And of course, it was impossible for them to tell us. There is such a wide variation of ability in kids with spina bifida, that it’s simply not possible for them to look at Henry on the ultrasound screen and say “Yup, he’ll definitely walk.” or “Yup, he’ll definitely be paralyzed.” (Although they did tell us, with certainty, that he would be paralyzed. And they were wrong.)

As we left the doctor’s office, the nurse pulled me in for a big hug, bless her heart. She whispered in my ear, “Do not look on Google Images. Google Images is not your friend.”

Lo and behold, she was right. Later that afternoon, after I came home, fell into a zombified sleep, and cried all afternoon, I finally got the courage to google “spina bifida”, with one hand held cautiously over the screen, shielding myself from anything upsetting. And it was quite upsetting. All of the images I saw were aborted babies, open myelo lesions, and pictures of John Cougar Mellencamp (apparently he has a “mild” form). I shut the computer off, too terrified to look any further.

Well THAT’s comforting….

It was scary. as. fuck. By the way, I am completely, unmovedly opposed to abortion, but I can absolutely see why it would seem like such a healing balm. The fear is all-encompassing. And termination can take all that fear away. I get it. I do. (The only reason I even bring it up in this post, thereby “politicizing” it, unfortunately, is because the diagnosis and an offer to terminate goes hand in hand. Ask any mom — it does. It was part of our experience, it’s part of nearly everyone’s who was given this diagnosis. And it does make me sad to see that people have aborted their children out of fear of this disability — because although it sounds terrifying, it really is not that much different than raising a “typical” child. More doctors appointments, certainly. More surgeries. But It’s not miserable. It’s certainly not a fate worse than death. And while I don’t shame or look down on people who have chosen termination, it does make me sad to think what they missed out on. Somewhere around 60 percent of spina bifida pregnancies are terminated, and I do want to bring that number down, in the most respectful way possible.)

A few days later, I summoned up enough courage for another Google search. This time, I stayed away from the images page. I saw a baby hooked up to wires in the NICU and I lost it — briefly. When I recovered, I started looking for blogs.

And what I found changed my life.

The kids on these blogs? They were beautiful. They were happy. They had a light in their eyes just like “normal” children did, even if they had braces on their legs or shunts in their heads.There was a lot on these blogs I didn’t understand — lesion levels, different terminology (like L4-L5, AFOs, KAFOs, etc) — but it was obvious from these pictures that the medical terminology that the doctors used had not given us the whole picture of what spina bifida was. They weren’t just a laundry list of diagnoses, they were precious children.

A picture is worth a thousand words, indeed! This photo is courtesy of a blog called Catholic Cafe Con Leche, the very first spina bifida blog I found, whose pictures floored me. What a happy kid! What a beautiful family! Was THIS what SB really looked like? Well…allrighty then….

I’m eternally grateful to the parents who shared pictures of their beautiful children with me, ultimately giving me the courage I needed to welcome Henry into our family. I truly believe that showing, not telling, people about spina bifida is what’s going to make the difference as far as education and awareness.

And that’s exactly what I want to do at Wifeytini this month.

On my facebook page, 200 people have already shared their children’s pictures with me as part of our #embracethebif campaign. Just a few days ago, I started an album called “Embrace the Bif!” so that parents could show other people “this is what spina bifida REALLY looks like!” And the response has been overwhelming. And so, so heartening.

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Every time I type “THIS is what spina bifida looks like!” I feel like karate-chopping the air in victory. I feel like I’m traveling back in time and calming down the terrified, nauseated version of myself who dreaded raising a disabled child. Spina bifida is so much more joyful and happy than our doctors initially led us to believe, so much more than what we first saw on Google images. If even one prospective parent can see this album and have that fear quieted just a little, then I will consider #embracethebif to be a resounding success.

Just to clarify, our campaign is not a “pro-life” campaign. Anyone is welcome to participate, regardless of their stance on the issue. Our mission is education and hope — not shaming and condemnation for anyone who has made a different choice. So, while #embracethebif is not a “pro-life” campaign, I do think awareness is a “pro-life” issue: If you want to eradicate the negative stereotypes and the fear surrounding this diagnosis, making it ultimately easier for parents to welcome disabled children into their homes, disability education is so important. Spina bifida is not the devastating diagnosis that many doctors make it out to be. It is not a miserable, horrible, existence that’s filled with suffering. It’s happy, crazy, sometimes hard, sometimes wonderful, joyful, purposeful, active, fun. It’s dancing around to a Taylor Swift song with your siblings. It’s something I wouldn’t trade for the world.

And here was mine and Henry's contribution. Because obviously!

And here was mine and Henry’s contribution. Because obviously!

Erase the fear, embrace the bif. Like, share, tweet. This is how we change hearts and minds. This is what we’ll be doing for October.

Join us.

Maybe I caused it. Maybe I didn’t. Here’s why that doesn’t matter.

October means it’s Spina Bifida awareness month, so that means everyone and their mom is up in arms about prevention. If you follow any Spina Bifida-affiliated organization, then you’re totally gonna get an earful this month about folic acid and how SB is totes preventable if you JUST TAKE FOLIC ACID FOR THE LOVE OF CHRIST. (Sara from Ernie Bufflo does an excellent job of explaining why that isn’t always the case, and how SB prevention often gets in the way of serving the people who are already here.)

I don’t talk much about prevention on this blog, because it’s totally irrelevant to us and a majority of the people who read this. Like Sara said, we’ve got SB, and it’s not going anywhere. It’s part of who Henry is, and no amount of folic acid is going to change that. It’s not really something I talk about, because it’s not really something that affects us now. But I’ll talk about it today.

One thing that saddens me greatly during October (and, to be honest, every other month. But particularly October because the push for “awareness” and “prevention” is so high) is the scores of mothers on our SB support groups who admit to feeling haunted: “Could I have prevented this?” They ask. “Was it my fault because I waited to take prenatals once I found out I was pregnant, instead of before?” My friend Mary Evelyn echoes this, and she wrote a post this morning about folic acid and guilt that ought to be mandatory reading for every newly-diagnosed parent.

 

 

My heart goes out to these women completely, because I’m among their ranks — Did I cause this? Did I not take enough folic acid? Truthfully, I don’t think about it often, but I do think about it some. And I’ll admit that while most of the time it’s not something I concern myself with, during my worst moments (and we all have those, right? Those wow-I-suck-I’m-a-terrible-mother-and-human-being-moments?) I believe beyond a shadow of a doubt that I’m the one who caused his defect:

- We waited only a year between pregnancies, and I was breastfeeding June when we conceived. (Who knows — maybe she sucked all the nutrition out of me?)

- I’m chronically anemic (I have been my entire life), which goes hand in hand with folate deficiency (which I didn’t know at the time).

- I ate pretty much nothing but baked potatoes and Panera soup during my first trimester (but I’m gonna go ahead and blame the baby on this one. If he wanted me to eat tons of folate-rich spinach, he shouldn’t have made me throw up every time I ate anything.)

- Here’s something that really haunts me — something I’ve come to accept and make my peace with, though it still lashes out at me in my worst moments. The minute I found out I was pregnant with Henry, I remembered how agonized I was after June’s delivery. During the pushing stage, I think I pulled just about every muscle in my body trying to get her out, and I was so woefully out of shape it took me weeks to recover from childbirth. So right after my positive pregnancy test, I went out every morning with June and took her for a walk in the stroller. In mid-July. In ninety degree weather. It was hot as balls, but I thought I was getting healthy for him. I knew vaguely that high body temperatures (hyperthermia) increases your risk of neural tube defects like spina bifida, but I took that to mean no hot showers or electric blankets, which I stayed away from religiously. I didn’t think that meant I couldn’t exercise. I thought I was doing a good thing.

Does that cover it? The millions of ways I could have given my son spina bifida? I took prenatals, by the way. I even took a folic acid supplement — more than the standard recommended dose. And another thing I loved to eat when I was pregnant was Total cereal — which is fortified with folate and has 100 percent of the recommended dose. So who knows — maybe it wasn’t folate deficiency. Maybe I didn’t wait long enough between pregnancies — a known reason that Latina women are in a high risk category for neural tube defects (Latina women tend to have more babies and space them closer than any other population). Maybe it was the fact that my dumb ass went out every single morning during my first trimester and sweated my balls off, determined to get in shape for his delivery, raising my body temperature to potentially unsafe levels.

Maybe I caused it. Maybe it was my fault. Maybe. I’ll never know.

Now let me tell you why none of that matters.

Being a mother has always been of utmost importance to me. We waited about five seconds after we were married to start trying to get pregnant, and four months later we were pregnant with June. When June was just a year old, we both got a strong urge to try again for another. We were in a good place financially — paying off our debts, saving a good amount. Lou had a steady job. June was an incredibly easy baby, who we thought could benefit from having a sibling. There was nothing stopping us. So we tried again, for Henry.

The funny thing about trying for Henry was that I knew I would be having Henry. Henry was the only baby name we could agree on, boy or girl, and I strongly suspected that when we got pregnant, we’d be having a boy (boys run in the family, on both sides). Right after June’s birthday (at the end of June), I heard a small voice in my ear. You’re fertile now, it said. If you want to get pregnant this month, you’re running out of time to try. So we tried.

(Only one other time have I ever heard this small nagging voice in my ear. In college, Lou and I were spending a lot of time together, getting to know each other, but not yet dating. I remember sitting in a Political Science class one day and hearing, out of the blue, someone telling me that if you date this person, he’ll be the last person you ever date. Writing that seems creepy, though, like he was going to murder me or something.)

I tell you, the minute he was conceived, I knew we were pregnant. I knew it “took,” on the very first try. And for weeks afterward, I took pregnancy test after pregnancy test, knowing we had conceived him, but not getting a positive result. Finally, on July 17th, we got one. Pregnant. On the first try. With Henry. Bam. Henry, whose namesake we now know, is the patron saint of disabled people.

My point is this: I was always meant to have this child. He was always Henry, and he was always mine, which takes the sting out a little bit when I think of maybe how I could have caused his defect. Whether I “caused” it or whether it was just a totally random happenstance, it doesn’t really matter to me any more. Because he was always Henry. He’s always had a special purpose. He was always mine, from before he was conceived, and I think the significance of his namesake points to the fact that he was always going to be disabled, and that he would use that disability for the glory of God. To help other people, somehow, in some way, that were disabled like him.

Maybe it was my fault. I don’t care anymore. He’s here. He was always supposed to be here. He gives my life purpose and joy, and that overrides the guilt I have any day of the week. If I gave him spina bifida because I took long walks in the heat for my first trimester, then that lands me among the ranks of parents who totally screwed up their kids by trying to do good by them. And I can live with that.

Like Mary Evelyn said so poetically, I’m moving on. I’m letting go. I’m thanking God for the gift that is my child.

photo 4(14)

And as Jesus passed by, He saw a man who was blind from his birth. His disciples asked Him, “Rabbi, who has sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9: 1-3

Things that make me cry now that my antidepressants have changed: A seriously random list

Oh, antidepressants. Where would I be without you? No, seriously. I’m asking. I’m a bona fide mess on antidepressants, still wading through some untreated PTSD and agoraphobia issues, watching shit like Monsters Inside Me and Googling all the different kinds of parasites in my drinking water. Waking my husband up in the middle of the night and going, LOU. I’ve been Googling, and I think I have MRSA. IN MY NOSE.

(I was right about that one, by the way. Henry and I have both had MRSA infections this month, and they’ve sucked. So sometimes my anxiety is actually founded. Suck on that!)

My anxiety came to a head a couple months ago when the combination of a hormone plunge and Henry’s constant, hawk-like screeching conspired to give me a sobbing panic attack. For the past few months, Henry’s been making this awful noise. I can’t even really convey how horrible and ear-piercing this noise is because the depth of human language doesn’t even skim the surface of how absolutely nightmarish it is. The closest approximation I can give you is this video of a screeching falcon — when I played it for Lou, he said, “God, yes, that sounds exactly like Henry. Now, TURN IT OFF before I throw myself out the window.” So if you want to know how my days have been going, turn your volume up to eleven, play that youtube video, and loop it for TWO MONTHS STRAIGHT, ALL THE FUCKING DAY LONG. That’s how it feels to live with Henry right now, who doesn’t have the words to express what he wants and just shrieks until we bend to his will. Last month, finally, I snapped: I left him downstairs with his dad, went upstairs to bed, and just flat-out refused to deal with him for the rest of the day. When he woke up the next morning — screeching — I woke up my husband and cried. “I can’t,” I said. “I can’t anymore. My skin hurts from listening to that screech. Every time I hear it my heart starts pounding. I can’t be around him anymore. I won’t.”

So I took a xanax and went back to bed — for the entire day. Lou took off work and dealt with the screaming. Later, when I dragged myself out of bed, I called the doctor and made an appointment to discuss my anxiety meds. It looked like I was going to need something a little more hardcore, if I was going to function like a normal human being — because who knows how long Henry’s going to be doing this screeching thing? (As of this writing, he’s still doing it. We have an appointment booked with the speech therapist soon — for my sanity. I mean, for his language skills. Yeah. That.)

All day long, mom. Because fuck you, is why.

I’m not saying this to get sympathy, believe me. But you know what’s funny? When I get on the right medication and my anxiety is under control, I get cocky. I think I’ve conquered my PTSD or outgrown my agoraphobia and I start tapering off my medicine, thinking that I’ve got this thing beat. And three days later, inevitably, I’m having some small body-related freakout thinking about all the ways I could have possibly died had I been born in the seventeenth century (this is something I legitimately think about, and obsess over. People just died of NOTHING back then. Typhoid. Or infected cuts. Or rat-bites. Or boils, for God’s sake. BOILS).

My point is that situations change. Anxiety levels change. Anxiety tolerance changes. It’s not something you can just cure (apparently). It’s an ongoing, ever-lasting, ever-changing battle.

So here’s what I’m battling with right now.

1. Any gospel song. Have you ever noticed, in tons of predominantly African-American movies, that a popular trope is to have a huge come-to-Jesus at the end of the film, at a Church, set to a moving gospel song? I can think of six just off the top of my head. This one. This one. This one. Sort of this one. Oh, and this too, which makes me cry whether I’m in a hormonal upswing or not. When Lou and I are watching a Tyler Perry movie and there’s a church scene, I lean over to him and go “Someone’s gonna come to Jesus by the end of this song,” with an astonishing rate of accuracy.

Oh, and definitely this. Yup, instant tears:

Shug Avery singing “God is Trying to Tell You Something” in the Color Purple. Will NEVER NOT make me cry, I don’t care how much medicine I’m taking.

2. This stupid dance from Dance Moms. Stupid, stupid, stupid dance with stupid lyrics that remind me of my stupid daughter whom I love more than anything in the entire world. I caught some of it on TV the other night and cried so hard I couldn’t eat my huge bowl of ice cream (that’s a lie).

 

“You don’t know what a song you sing, you don’t know how much joy you bring…” Screw you forever, Dance Moms.

3. Stupid kids books with an emotional appeal. Especially this book by Neil Gaiman, which is basically a little sing-songy prayer that he wrote for a lady-friend who was about to give birth to a daughter (literally tearing up as I type this). And. It’s. JUST. SO. BEAUTIFUL.

 

 

GOD FUCKING DAMMIT.

4. This Beyonce video, which I legit cried over because it’s just. so. inspiring.

“Women are so awesome, and powerful, and I’m just so darn proud to be one….sniff…LOOK AWAY!!!”

So basically, until I get adjusted to this dose, I’m going to be a living, breathing mess of epic proportions.

And did I mention that the month of October (starting tomorrow) contains my birthday, my favorite saint‘s feast day, most of my family’s birthdays, Spina Bifida Awareness month, AND my favorite holiday of all time (Halloween)?! Hopefully these meds kick in real soon, because I will be so happy, busy and just plain emotional I might just die.

Reader beware.

Actually, Ken Jennings, wheelchairs are awesome.

Wow. The wheelchair haters are really coming out in full force lately.

First, there was Kanye. At a concert in Melbourne, he demanded that all his fans stand up as he was about to start one of his songs. Apparently, he stopped the entire concert to single out one person who wasn’t standing — because he was in a wheelchair. Only after someone waved his prosthetic leg in the air and the entire venue knew that this guy was disabled did Kanye continue with the concert. Unbelievable.

(And, okay, I guess that’s not wheelchair hating, per se, but it’s certainly insensitive and totally objectifying: “HEY EVERYBODY — CHECK OUT CRIPPLED McNOLEGS OVER HERE! He’s in a wheelchair! He’s literally the only person not standing! He can’t use his legs like KANYE!! I AM A GODDDDDD!!!!”)

No, really … he said that.

Barely a week later, another high-profile celebrity made an insensitive, ableist comment. Ken Jennings, of Jeopardy fame, tweeted that there’s “nothing sadder than a hot person in a wheelchair.” And, um, I can certainly think of a few. What about a person who’s home-bound because he needs a wheelchair and doesn’t have one? Or how about a self-proclaimed genius who’s too blind to see past conventional standards of beauty, whining on twitter about how a life-changing mode of mobility shrinks his boner? Because that is pretty sad.

“I’ll take ‘Dumbass Things To Say’ for 200, Alex.”

Ken and Kanye’s wheelchair remarks were markedly different, in two completely separate contexts, but they both solidified what our culture, in some ways, has always said: People in wheelchairs are Other. Less desirable. Deserving, somehow, to be lumped together, singled out, pointed at, objectified, and ridiculed. (And by the way, it’s not rude to laugh at someone’s disability — it’s hilarious. It’s edgy.)

Just. So. Edgy. Like this best-selling shirt from T-Shirt Hell. Takes a lot of balls to ridicule someone whose legs work differently than yours.

The consensus in our culture, I guess, is that wheelchairs are sad and people in wheelchairs should be pitied. Or singled out. Or mocked. Or all three. Which makes no sense to me now.

But at a time it did.

Before I had a kid with spina bifida, I didn’t give much thought to wheelchairs at all. But I know for a fact that I did feel bad for people who were resigned to them. Man, I thought, what a pain in the ass it would be to have to use a wheelchair. You’d always be at butt-level with everybody else. You’d have to depend on that chair for everything, and what a pain it would be to transfer over to the toilet or into bed. Ugh. I’m so glad that isn’t me.

I didn’t need a wheelchair. But my child probably will. And when he was born, it changed everything I thought I knew about disability.

He has to use a nasal cannula and a feeding tube in the NICU? Thank God. Now his body can grow and heal without having to use all his energy for eating or breathing.

He has to have a shunt? Thank you, Jesus! A hundred years ago, and even today in some poorer countries, hydrocephalus is a death sentence. But we get a reprieve — just a thin, plastic tube that reroutes his cerebral-spinal fluid to another part of his body, and the hydro is virtually not a problem at all.

We have to catheterize him? AWESOME. Without catheters, Henry’s kidneys and bladders could get seriously messed up or infected.

He might have to use a wheelchair someday? Simply fantastic. Because this little guy might need one. Since his legs and feet don’t work like yours and mine, he’ll need special assistance to get him where he needs to go: On the bus for Kindergarten, out of the house for park and zoo trips, the possibilities are endless. With a wheelchair, we won’t have to worry about him being excluded from things because his legs work differently. He won’t have to be left out or homebound. Wheelchairs are freedom! Wheelchairs are opportunity!

And quite frankly, Ken Jennings, wheelchairs aren’t “sad.” They’re awesome.

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.)