Category Archives: things they don’t tell you

Bonding with the babies, in spite of myself

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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.

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“I smell an agenda…” You bet your balls you do.

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One of my favorite sites, Sociological Images, shared one of my blog posts on their facebook and twitter pages this week.

To say I “fangirled” would be an understatement. I was all, whaaaaat?! CHYEAH! I LOVE THEM! They shared my stupid blog post?! They called it a “fabulous satire”?! BRB GONNA DIE OF HAPPINESS NOW!!!! 

(I’ve noticed that two things make me downright giddy, by the way — eating sushi, and being syndicated by a respectable publication. In the past month, my blog posts have been picked up by the Huffington Post (twice!!!), The Mighty, and MamaHealth. Someday I’ll write a piece for the New York Times and I’ll be scarfing down a big-ass Firecracker Roll as it goes live. That’s the world I want to live in.)

I have a vice, though. I gotta admit. I read the comments when my articles are shared, in whatever context. Twitter, Facebook, Pinterest. I really want to not do this, but I’m half-curious and half-thinking that it might be a good idea to read some constructive criticism (ha). Anyway. I’ve read a fair share of snarky comments about my writing, and it doesn’t bother me. But one comment last night, on the blog post that Sociological Imaged shared — it bothered me.

“I smell an agenda here,” someone said. 

I don’t know why it bothered me. But she was absolutely correct. I do have an agenda.

You smell that? It’s an agenda. And it STANKS.

First on my agenda is to write, because I like writing. I try not to do it and it doesn’t work. I just keep coming back to the keyboard. Two years ago I gave in. Fuck it. I’ll write because I can’t not write. And whoever wants to join me is welcome to.

But my other agenda? I want to change the way we talk about disability in this culture.

I am not an expert on sociology, or language, or (least of all) people with special needs. All I know is that every day since we learned Henry would have spina bifida, we were conditioned to think the worst about his diagnosis. We were advised to terminate, by more than one person, seemingly because a life with spina bifida is so terrible that it’s better to not live it at all. Can you comprehend that? There is such a disconnect between the beautiful children I see who happen to have a disability, and the sorry, deformed, faceless nobodies that our culture makes them out to be. And the disconnect didn’t hit me — not really — until right after Henry was born.

I was holding him, actually, when I got the phone call. It was a nurse from some county office, wanting to let us know that, because of Henry’s condition, we qualified for food stamps and other assistance (which we declined).

“I’m calling,” she said, her voice dripping with sympathy, “because we hear you’ve had an adverse birth outcome.”

What? I thought. He died? And then I realized she was talking about Henry. What the shit? I mean, he’s got some issues, sure. But adverse? A “birth outcome”?

The thing about defining moments is that you don’t really realize they’re defining at the time. My response wasn’t one of righteous indignation. I didn’t deliver some Sorkin-esque speech. I said “Wow. Uh, no?” And then I laughed. Because it was ridiculous. I wasn’t mad, don’t get me wrong — I’m sure she was a very nice woman who was tasked with having a very uncomfortable conversation with a hormonal, post-partum stranger. I get that. But damn if what she said didn’t knock my socks off. So that’s how you see them, I realized. That’s how you see my baby.

Let’s stop with all the bullshiz. People with disabilities are people. They aren’t inspirations or heroes, necessarily, but they aren’t outcomes either. They’re endowed by our Creator with human dignity, by virtue of their status as human beings.

Yes, we should keep them. We should cherish them. We should change the way we think about them, and the way we talk about them. That’s my agenda. That’s where I’m going. And whoever wants to come along is welcome to.

If healthy pregnancies were treated like special needs pregnancies

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Mr. and Mrs. Johnson, good afternoon. I’m Doctor Dumas, a visiting obstetrician in Doctor Kwak’s practice. It’s nice to meet you.

Look, there’s no easy way to say this, so at the risk of sounding blunt, I have some bad news.

The technician and I reviewed your scans and we found that you’re about ten weeks along with a human fetus. I’m not seeing any abnormalities as far as growth or bone and organ structure, but you’re very clearly pregnant with a human baby. In all likelihood, you’ll carry the baby for another thirty weeks until your amniotic sac ruptures and the baby exits your body vaginally. In some cases, your baby will be extracted via cesarean section. Either mode carries its own set of risks and is extremely painful. We’re so very sorry.

Your baby will be born, unless you suffer a miscarriage or stillbirth. After his birth, he will live, and then he will die. He will live until he dies. I’m sorry to say that life is terminal. The fatality rate for human beings is 100 percent. If he survives past birth, you’d just be living on borrowed time.

How long does he have? We’re not sure. Humans typically live until their mid-seventies, depending on where they’re born and a variety of other factors. But many die at age 5, or 15, or 30. We can’t predict with any certainty how long he has, but we know that death is an inevitability. You probably have a history of death in your family.

We’re also sad to say that your child has cancer. Well, not right now, but statistically it’s possible. You’re carrying a human child, and fourteen thousand of them every single year get some kind of cancer. In fact, the second leading cause of death between kids ages 5-14 is cancer. This is second only to unintentional accidents like a gun misfiring or some sort of collision. So if your baby doesn’t die in a car wreck first, I’m afraid there’s a chance he’ll get cancer. I’m so sorry.

If by some chance we prolong his life until age 15, the odds don’t look good then either. It’s not totally hopeless — I mean, never say never, right? — but teen mortality rates are climbing. There’s always a risk of car accidents, overdose, and particularly suicide. The suicide rate is particularly troublesome. I’m a numbers man, so I’ll give it to you straight: Thirty three thousand teenagers committed suicide in 2006. And being born is the leading cause of eventually committing suicide.

I know you have a lot to think about. Just try to breathe. There are a lot of options. It’s important to take care of yourself first, and your marriage. Children are a big contributor to divorce. Almost forty percent of divorced people have children at one point. Suicide, cancer, divorce … if the baby survives birth, you’d be bringing him into a pretty questionable environment. You’ve got problems coming at him from all angles. Multiple problems. Quality of life is important to consider.

This is the part of my job I hate. I can only imagine how shocking and upsetting this is for you. Unfortunately, we have even more difficult news. Your Chorionic Villus Sampling test came back with some red flags. Our tests indicate that you’re very likely having  a boy. This occurs typically in half of all pregnancies, and nobody really knows why. We know the Y chromosome plays a part, and we know the father is the carrier.

These things just happen.

Risks? Well, males typically have higher testosterone, which could lead to anger issues. They’re more likely to abuse alcohol and much more likely to rape. Something like 90 percent of all homicide offenders are men, and the vast majority of inmates in the penal system are men as well.

You have a 1 in 2 chance of having another boy, should you choose to get pregnant again. You could also try for a girl, but there are risks involved with a girl as well. Girls are much more likely to be raped and make up the vast majority of sex-related homicides. 100 percent of people who die in childbirth are women. Women are less likely to commit suicide and rape other people, but they’re infinitely more likely to die of ovarian and breast cancer. There are significant risks, whatever you do. I’m afraid it’s inescapable.

Well, you have a lot of options. You can take your chances, or you can terminate. I can’t make that decision for you, but I will say that terminating now will let you start the healing process that much sooner. It’s early in the pregnancy, and it would probably be easier to do it now rather than wait twenty five years to see if he turns out to be a rapist.

On the bright side, he could be worse. Your baby is caucasian. Black children are three times more likely to grow up in poverty, and black men are twenty times more likely to be sent to prison than white men. The outcome is just very poor for people of color. I wouldn’t wish that on anybody. Just be grateful he isn’t a girl. Or black. Or a black girl, God forbid.

So. Talk it over. You two have a lot to discuss.

 

An Open Letter to Judgey McJudgerson about the iPad Potty

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Dear Judgey McJudgerson,

This is the picture you shared on Facebook today. You were shocked. Aghast. Horrified. Can you believe it? There are some parents (lazy jerks, I bet) who actually use these things to get their child to use the potty. I mean, just look at this thing. What’s next? Those levitating chairs from Wall-E?! It’s sick, I tell you. SICK.

Your judgey friends chimed in as well:

“That’s so disturbing.” 

“This is only for lazy parents. I would sit next to the potty and read my daughter BOOKS when we were potty-training!” 

“Wow…really? Ever heard of INTERACTING with your child instead of plopping him down in front of a SCREEN?!” 

“Whatever happened to small treats, like a sticker or a cookie? I guess I’m just old-fashioned that way!” 

“What has our society BECOME??!” 

Judgey, let me introduce you to my son.

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I know, he’s unfairly cute. Try not to stare.

Henry has Spina bifida. In about a year, we will begin something called a bowel program for him. Henry has no bowel control. I know, I know what you’re thinking: What baby does have bowel control? That’s what I thought for a long time, anyway.

You know when babies crawl around on the floor, and then they stop what they’re doing, their faces turn red, and they strain VERY OBVIOUSLY to push something out? And that “something” turns out to be poop? Those babies can control their bowels.

For Henry, he poops (and pees) pretty much all day long. It just comes right out. No straining, no pushing. No notice at all, actually, and we’re not sure how much he’s even able to feel down there. Regardless, he can’t control his bowel movements. Poop just pops out of him randomly. (Which, let me tell you, makes me feel like a super shitty parent, no pun intended. People have been known to pick up Henry, wrinkle their noses, and hand him back to me — oops, a poopy diaper! Mommy must not have realized! What they don’t know is that I just got done changing a poopy diaper five minutes ago. And ten minutes before that. And thirty minutes before that. Kids with Spina bifida tend to have lots of really bad diaper rash — is it any surprise?)

So. My point. In a year or so, we’ll have to start a bowel program for this guy, in order to keep him “socially continent.” This means that we’ll perform something called an enema, either once a day or every 48 hours or so, that completely flushes out his bowels so he won’t poop at all during the day. This will allow him to be around other kids and other parents without being the “stinky one.” Great, right?

Here’s what you don’t know about enemas: Kids who get enemas — which is most of the kids who have spina bifida or any kind of spinal cord damage — have to sit on the potty for a long, long time. Much longer, in fact, than a child with typical bowel control. Enemas flush out a lot of poop, so they take a while to work. Kids who use enemas for their bowel program can sit on the potty for forty-five, sixty, or sometimes even upwards of ninety minutes.

Judgey, when was the last time you had to get your toddler to do anything for upwards of ninety minutes? 

Will we purchase this iPad toilet? That remains to be seen.

But, Judgey, you better believe that if this thing gets my son to sit on the toilet for ninety minutes, I’m going to purchase the hell out of it. And I won’t be one bit sorry.

Know what I think? This thing is freaking great. It’s a masterpiece. Potty training is hard, with a bowel program or without, and whatever keeps your kid socially continent and potty-trained before they go to kindergarten, I’m all for.

And you know what else? I’m just gonna say it. All types of parents buy these kinds of things for their kid. Maybe they have a child who is fully potty-trained EXCEPT for poop, and getting her to sit still and poop in the toilet for more than thirty seconds is an impossibility without some screen time (I have one of those children). Maybe they have a kid with really bad sensory issues, and they need some hardcore distraction because poop just feels weird. Or maybe their kid just won’t sit still and kindergarten is fast approaching and they’ll try anything because they’re desperate.

My point, Judgey, is that there are millions of different kinds of people, and there are millions of different ways of parenting. You’ve appointed yourself the Official Worrier of Other People’s Children and Society In General, and you’ve decreed it a crime against humanity to use one of these things to toilet train, because technology will rot their brains!. And relationships will suffer. And WON’T SOMEONE PLEASE THINK OF THE CHILDREN?!?!. But if you step outside of your self-righteous little bubble, maybe you could learn to appreciate a parent whose kid hasn’t potty-trained as easily as yours. And maybe instead of judgment, you can offer compassion. Or understanding.

Or maybe just mind your own freaking business.

 

 

No love,

Wifeytini

Hold On

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One of the most trying things about toddler-wrangling is their neediness. Their urgency.

You think you leave it behind when you finally crawl out of the newborn stage, but you don’t. Not really. It just changes shape. They still have immediate, urgent needs, and so much more of them, it seems. As an infant, they would wail for food. Wail for comfort. Wail for a diaper change. That was mostly it. And then they’d sleep the rest of the day. With toddlers, there are so many more things to wail about. So many more. And they never sleep.

I just! I need! I have! A red marker! And I need! A green marker! Mommy! Mommy! Mommy! MOMMY HELP

Apparently, when you’re two, everything is an emergency, and everything needs to be treated with the immediacy of a level-red terrorist alert. As a result, the most commonly-used phrase in our house is hold on. I must say it to June twenty-five times before noon:

Yes, I know you need help pulling up your undies; please hold on, I have cookie batter on my hands.

Yes, I know you can’t get the cap off your marker, I heard you the first four times; please hold on while I catheterize your brother.

Please stop climbing on me, I know there’s a spider on the wall, I’ll kill it in like, two seconds, just hold on. HOLD ON.

I KNOW the Netflix stopped working, but I’m giving Henry a bath; just hold on for five minutes. HOLD ON. STOP SHRIEKING. FOR THE LOVE OF GOD.

I will pour you some cereal WHEN I’M DONE BREASTFEEDING COULD YOU NOT.

Unlike June, Henry doesn’t have five million requests for stupid shit, but he makes up for it with his god-awful whine. On a good day, he sounds like Beaker. But if I don’t get him what he wants quickly enough, it escalates into just straight-up screaming.

Not even crying. Literally just one shrill note.

Obviously, my anxiety goes through the roof when they’re like this. One of my old PTSD triggers, for whatever reason, is a shrill, unrelenting, loud, or repetitive noise. Thanks to modern medicine and therapy, I’m no longer thrown into an endless panic spiral. But it still grates on my nerves probably more than it should, and after thirty seconds of high-pitched screaming and whining and begging, my heart starts to pound pretty quickly. It’s one of nature’s greatest ironies — children, with their whining and their incessant needs, can trigger your “fight or flight” mechanism unlike any other. Yet raising children is one situation you can’t just flee from on a whim. Not without legal repercussions, anyway.

Oh you need dinner? BRB never coming back

And there’s an existential anxiety there, too, when they need something and they screech super loudly and I have to tell them to just hold on, hold on! When you’ve got two baby birds screeching for food, you start to feel inadequate when you can’t feed them fast enough. Because, you know, feeding them is your job. It’s like, a basic requirement of living. They’re HUNGRY, for God’s sake — listen to them! They’re starving! What kind of a mother lets her children STARVE??

Oh God, they’re gonna starve! I’m the worst!

And let’s not kid ourselves — there’s an anxiety there that no matter how many spiders I kill and markers I un-cap, I can’t give them everything they need, at all times, all at once. It’s anxiety that I’m not enough. That I just can’t do it. That I just can’t meet their needs.

Anxiety that maybe I’m just not very good at this motherhood thang.

What other job can you say you’ve waited your whole life for, and have now done for years, and still you have no idea what you’re doing? Are there any other jobs where you can mess up every single day, irrevocably, and not be fired?

I know they won’t always be like this — I know. And I’m not doing a horrible job, I get it. It’s just an anxiety I have to learn to deal with. Story of my life.

And I know that I’ll miss this some day. I know. I will miss this urgency, this constant screaming excitement. It’s overwhelming, but it’s the same thing that makes her scream with delight when she sees soap bubbles. It’s the same thing urgency that makes her run into my arms and scream mommy mommy mommy! when I get back from the grocery store. It’s not all terrible.

It’s one more two-year-old thing I’ll have to say goodbye to. Yesterday I told June to “JUST HOLD ON” maybe sixty times. Not an exaggeration. Yesterday I was more than ready to say goodbye to this particular stage of being two.

And then we went to preschool. And now I’m not so sure.

When we got there, she dashed up to the front door and judo-kicked the handicap button on the door. The door swung open and she ran inside, pell-mell, past the secretary, jabbering about her pigtails, and ran through another set of doors, down the hall, to her preschool classroom. She needed to get to class. There were crafts to be done. And songs to sing. It was an emergency, as always. Henry and I huffed and puffed behind her, trying to catch up.

Gotta get to pre-school, mom! Let’s go, mom! 

I love watching her pigtails swing back and forth as she’s running away from me down the hall. I love watching her back-pack (“pack-pack”) bounce all over her tiny body. Sometimes I love her toddler excitement. Okay? I do. Sue me.

But I’m still gonna tell her to slow down. Come back. Don’t you want to hold my hand?

Just hold on. 

What Spina Bifida Looks Like (So Far): An Update

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A few weeks ago, the kids and I went to weekly Rosary at our church. (In the interest of full disclosure, lest you think we are super holy or something, we showed up late and I knew about half the words to the Hail Holy Queen prayer. What I did remember sounded something like, “Hail, Holy Queen — sit down! — our life, our sweetness, and our hope. To thee — sit on your bottom! Now! — do we cry — stop crying! — poor, banished children of Eve — just take this candy. EAT THIS CANDY AND BE STILL!

 and et cetera.)

 I was chatting it up with another woman afterward, and I casually mentioned something about Henry having special needs. (I don’t know how these things come up in conversation. Honestly, whenever I’m first meeting someone, I just want to blurt out Henry has spina bifida! — not because I think it’s relevant, or that it defines him, necessarily. But because people are always shocked when we’ve been talking for a while and it inevitably comes up. I feel like I’m hoodwinking people. This woman was no exception.)

This woman was stunned. “Special needs?” She said, visibly taken aback. “What’s wrong with him?”

“Not a thing,” I said. “But he has Spina Bifida, so he has some mobility problems.”

“He does?”

“Yeah, along with some other things. He has a shunt.”

“What? You can’t even tell!”

“I know, right?!”

These conversations never fail to make me laugh. I will never forget Henry’s many ultrasounds, and hearing the words shunt and clubbed feet and multiple delays, and imagining myself giving birth to, well, some kind of creature. In utero, he seemed more like the sum of his various disabilities rather than an actual person. When I was pregnant, I desperately wanted a glimpse of what he would look like at birth, at six months, at one year. Would he be okay, in spite of his problems? Would be be deformed and eternally pitied?

And the ultimate question — Will I be able to love him? Will other people?

Fourteen months later, you’d have to be insane not to love him. He’s a butterball. He’s incredibly social — the opposite of June, who doesn’t want anything to do with you if you don’t have candy — and constantly babbling, smiling, laughing. Amazingly, he has no cognitive delays so far. He is scoring ahead of his age, developmentally, in a few areas. What I would have given to know that when I was pregnant with him. The most common question people ask me is, how’s Henry doing? I never know what to say, other than he’s incredible, he’s doing great. He’s got some medical issues, obviously, but they’re just such a small part of who he is, and they affect our day-to-day life so little, his good-natured, super strong personality just kind of eclipses all of that. He’s just great.

But anyway. Because I so desperately wanted a “future preview” of sorts, when I was pregnant, I’m hoping to provide one now, for anyone else who is wondering how Henry’s doing, and for anyone who is currently pregnant with an SB kid and wants to know what SB might specifically look like a little farther down the road. So given that Spina Bifida is a spectrum, and that all children look and develop differently, here is what Spina Bifida looks for us, 14 months out of the gate (and by “gate” I mean “vagina”).

You’re welcome, for that visual. Also jk I had a c-section.

So how can you tell he has Spina bifida?

He was eight weeks old here btw

Probably the most glaring defect Henry has is clubbed foot. By far, this was the thing that scared me the most when I was pregnant with him, other than the prospect of him being severely mentally handicapped (which, actually, is a rarity with spina bifida). The term “clubbed foot” sounds like such a horrible, grotesque anomaly. I had no idea they would be perfectly adorable baby feet that were turned inward. So not the nightmare that I was expecting.

Truth be told, we love these little hook-feet. He crawls all over the floor, and his little hook-feet catch various things and drag them across the floor with him. We’re always having to chase him down and pluck things out from between his legs. They are ridiculously soft and smooth and precious.

People ask us often when we’re going to “fix” his feet. The answer is June. We have a “tendon release” in his feet (::shudder::) and ponsetti casting scheduled for the first week of June — we wanted to wait until he was able to use those muscles developmentally, with standing and pulling up and such, so that he would potentially have a better outcome. Is it crazy that I’m going to miss these tiny feet? Is it crazy that I look at other babies’ feet and think, “Wow, those are so big and weird-looking! EW!“

WRONG. Give me little hooked parenthesis feet or give me NOTHING AT ALL

One thing that’s been problematic about Henry’s SB is the lessened feeling below his knee. Since Henry has spinal cord damage, the feeling below his knee is limited. It’s kind of hard to tell what he can feel, if anything: Sometimes I swear he can feel me tickling his feet. Other times, like in January, it doesn’t look like there’s much going on down there.

In January, I went upstairs to retrieve him from his nap, and what I found in his crib shocked me. Happy as a clam, Henry was lying there with blood all over his face. When I whipped back the covers, to my eternal horror I saw that he had blood smeared all over his legs, and his toes were a mangled mess.

Like this, only not as metal

Turns out, after the husband and I stopped freaking out and calmed down enough to assess the situation, Henry was nibbling on his toes like any other baby would. Except that since he couldn’t feel any pain or pressure, he just kept nibbling…and nibbling. So in our house, when Henry’s cutting teeth, we stock up on socks, shoes, and a bunch of bandaids and antibiotics. Gross.

THOSE CHEEKS

Henry also has low trunk strength and limited hip flexion. You can see it a little bit in the picture above, how he’s kind of leaning forward and folding in on himself (granted, he was like two months old in this picture, so he wouldn’t really be sitting upright anyway). The lower trunk strength issues make him a little wobbly when he sits unassisted. The hip flexion problems make it difficult for him to stand upright.

Here’s a super-scientific diagram of what I’m talking about:

So basically, if Henry were to stand, he’d be sort of folded in on himself and standing at an angle, like a little old man using a walker. This is because of tight tendons in his hips, or something. We’re trying to stretch out these tendons in physical therapy, but there’s a small chance he might need surgery to “loosen” them. (::shudder::) Our hope is that he will be able to stand and walk, relatively unassisted. He does neither right now.

Poor hip flexion, clubbed feet, and limited trunk strength. But he's SOOO CUUUUTE

Poor hip flexion, clubbed feet, and limited trunk strength. But he’s SOOO CUUUUTE

What he can do is amazing. No, he does not walk. Yet. No, he does not stand. (Although there are kids with SB I know who can stand at this point. Like I said, it’s a spectrum.) BUT — he’s starting to pull up into a kneeling position (when I’m unloading the dishwasher and he tries to pull the knives out of the silverware rack).  And best of all, he crawls all over the place. So quickly that at preschool this week, he crawled out the door and into the hallway three times before I found him and caught up to him. Dude is fast.

Crawling! Something we were told he'd never do. Take that, bitches!

Crawling! Something we were told he’d never do. Take that, bitches!

In summary, he’s doing amazingly well, and I am so incredibly proud. This is what SB looks like for us at this moment in time.

Which is to say, better than I ever thought possible.

Baby Terror. And Agoraphobia Terror. And Just Plain Terror.

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Lou can tell when I haven’t been taking my zoloft, and his accuracy is alarming. It never ceases to astound me how totally chemical anxiety is.

Without getting too detailed, having another child is almost a physical impossibility for us at this point. We’ve decided we won’t be having any more kids for some time, and knock on wood, there won’t be one. But that doesn’t stop me from peeing on a pregnancy test every single month, even though pregnancy is nigh-impossible and my husband is rolling his eyes in exasperation. There’s no way we could be pregnant this month right? I ask, three times in a row, rapid-fire. Without fail, he raises his eyebrows in a ‘you’re insane’ way. No, he says. Have you taken your zoloft? So there you go.

 But I can’t help it. I think it’s how your hormones shift after you ovulate. A doctor drew it for me on a napkin once, after I told her that during ovulation, I feel amazing. Great! Stable! No anxiety here! Depression? What’s that? And then a week later, I am hyperventillating, crying, obsessing, and generally wanting to hide in a hole.

Go figure that your hormones (progesterone, I think? And estrogen) plummet after you ovulate. And when your hormones plummet, you start to feel like shit. Your anxiety (or depression, or both) comes back in full force. You go from thinking, hey, life is pretty great! to over-analyzing completely everything. When I’m ovulating, I think, you know, having another baby wouldn’t be so bad. Maybe in a year or so…? We’re in a good place right now. A week later, I think of having another baby and my heart starts pounding. Oh Jesus no, I think, no no no, please don’t send me another baby, I couldn’t mentally handle it. 

Truth be told, another BABY wouldn’t be so bad. Pregnancy and birth are what I hate. I have an intense fear of vomit and some vestiges of medically-related PTSD that makes birth and pregnancy a whirlpool of uncontrollable anxiety. A pregnancy without antidepressants is not possible for me, but now that I’ve had a child with a neural tube defect, I’m so terrified of taking anything during pregnancy, in case it was a medication that caused it. I start skipping my zoloft after I ovulate — you know, on the near-impossible chance that we actually did concieve a baby and on the premise (which is not evidence-based, by the way) that the zoloft actually caused his NTD somehow. Anyway, I’m terrified. And the terror convinces me to skip a dose or two. Which makes it worse. Which means until I start getting some mad therapy (and until we get, like, our own house, obviously), there are no babies on the horizon.

If it were morally licit and I had a zillion dollars, I would totally have a test tube baby. No vomiting for months on end. No danger of me poisoning the baby with my very-much-needed antidepressants. No painful, terrifying birth. No danger of a post-partum hemorrhage. I would have like ten test-tube babies. I would have my own Jurassic Park full of test tube babies.

Literally a conversation my husband and I have had, post-delivery.

So it’s with alarming accuracy that Lou can tell whether or not I’ve been taking my meds. I start sounding a little bit like Shoshanna from GIRLS, hyper and fast-talking. I start talking over and over about things I can’t control and I start imagining worst-case scenarios. An example: I was pinning away on Pinterest the other night, dreaming of having our own condo and what it might look like. For some reason, people like to pin pictures of trap doors in houses – trap doors under the stairs, hidden rooms behind bookcases, that kind of thing. I’ll admit it’s pretty cool, but when I haven’t taken my zoloft that day, I start imagining myself as a Jewish woman in 1930s Germany, cowering with my children while Nazis tear through the house. Or I imagine I’m Jodi Foster in Panic Room, and I have to corral my child in a safe room while intruders try to coax us out. Basically, I start running through a billion scenarios in my head where my children are in danger and I have to protect them. And then my heart starts pounding. And I have to shut off the computer, take my medicine, and go to bed. All because of this:

OH JESUS, YOU CAN TOTALLY SEE THE HINGES, THE NAZIS WILL FIND US

I also, ever since being diagnosed with PTSD, have struggled mightily with agoraphobia. When I skip a few days of my zoloft, and then convince myself I’m miraculously pregnant, and then skip more zoloft so I don’t poison my imaginary baby, and so on, and so forth until I’m literally incapacitated by anxiety, it is hard — nay, impossible — for me to leave the house. This was a phenomenon I never really understood until a counselor sat me down, opened up the DSM-V, and showed me the part of the book where it spelled out explicitly what agoraphobia is. I half expected to see my picture next to the description.

Avoidance? Well … I only avoid class because there might be a shooter or something. And I avoid Devon Avenue because it reminds me of India. And I can’t walk to CVS without a buddy because there might be a stabber on the loose. But other than that, I’m cool!

Restricted Travel? Not really. Except I haven’t been able to take the train in three months without a panic attack. And I’m late for class every day because once I muster up the courage to go to class, I have to walk three miles to get there. That’s normal, right?

Fear of being confined? Uh, duh! If I’m confined, I can’t escape if there’s a shooter!

This is the picture they’d use, too. Because CRAZY EYES!!!

I can safely say I no longer have PTSD. But I very much still struggle with agoraphobia. Even with medicine, it is hard for me to voluntarily leave the house. I can’t tell you how many times we miss Wednesday Rosary at church because Henry pooped his diaper twice this morning and he might do it again when we’re out! or June is potty-training and she’ll pee everywhere! or there might be rain — the sky is cloudy!. It’s not logical. It doesn’t make sense. But, I guess, the anxiety I have makes me have an incredibly low tolerance for anything surprising, or unplanned, or anything from whence I can’t immediately flee. At the height of my PTSD, I couldn’t ride in a car because if I had to pee while I was driving, I couldn’t immediately get out and pee. I would have to wait and find a gas station or something first. That terrified me. Legitimately. One night, on our way to a friend’s party, I suddenly had to pee while we were on the highway, and we had to drive around looking for an exit, trying to find a Burger King where I could relieve myself. We found a gas station within fifteen minutes, but by then I was a sobbing, hysterical, hyperventillating mess. Because what if I had peed my pants?

Believe me, it doesn’t make sense, and I lived through it. That’s the funny thing about anxiety. Your brain takes situations that, to anyone’s right mind, are no big deal. Wearing a dress. Riding in a car. Going to Wednesday Rosary. And it takes those situations and warps and perverts them until they become insurmountable obstacles. You start thinking this dress is too tight! I’m gonna asphyxiate and die! I have to pee and I have to find parking before I get out of the car! I’m gonna have to hold in my pee forever and I’ll die of uremic poisoning! And on. And on. Until you’re a crying mess.

Whoever drew this knows what’s up.

By the way, the anxiety is never really about being in a dress or going outside. The anxiety is about things happening that you can’t control. The anxiety is about the fear of having a panic attack. It just feels like you’re freaking out about something mundane.

 Even worse, sometimes anxiety manifests itself as a physical sickness. Ever wonder why people go years and years with untreated anxiety or depression? It’s because sometimes anxiety or depression doesn’t look like a humorous personality quirk. Sometimes, back in college, I would start coming down with the flu. Achey limbs, runny nose, sore throat, headache. And then I’d cancel my plans and all my flu symptoms would go away in an hour. That’s weird, I thought, and thought nothing of it. It took years and years to realize that, oh, this feels like the flu, but it’s not really. It’s kind of like having a twinge in your stomach and then finding out it’s cancer. It kind of tilts your world on its axis.

 Anyway. I guess my point is that it doesn’t matter what your triggers are. Anxiety triggers look different for everyone. And they only very tangentially make sense. And your anxiety symptoms will probably not look like the next person’s. And they might change over time, as well. (Ask me about the time I developed Irritable Bowel Syndrome and I couldn’t go anywhere without the fear of crapping my pants! Actually … don’t ask me.)

But my point is that anxiety is debilitating. And elusive. And it makes you crap your pants.

And all you can do about it is suck it up, take a deep breath, and try your best to make it to Wednesday Rosary. Even if June pees her pants on the way there.

And get some zoloft. Sweet, sweet zoloft.