Childbirth sucks balls but it cured my PTSD

My precious baby girl turned three years old on Monday. We celebrated over the weekend (with a small family party, some chocolate cake, and a late-night bonfire), so her actual day of birth was pretty low-key. We woke up, watched Daniel Tiger’s Neighborhood, cleaned downstairs, folded some clothes, drove up to Park Ridge to cast Henry’s feet, and took a nap (June did, not me. Alas).

Three years ago I was sitting upright on my hospital bed, eyes closed, paralyzed with absolute terror. I was in the middle of labor. Strangely enough, I wasn’t even feeling my contractions. My water had broken (partially — apparently your water can “leak” and not fully break. Who knew?) so I was admitted and contracting and leaking (gross) — but not dilating. I was stuck at 4 centimeters. And I was so, so terrified. The contractions were nothing — mild cramps and stomach tightening — but my heart was racing so fast that the nurses kept coming in to check on me and asking if I had a heart defect of some type. My heart was defect-free — but I did have a major case of PTSD to contend with.

If you’ve followed my blog at all in the past year, you know that I studied abroad in India, and it was an absolute disaster. Not only did I develop Post Traumatic Stress Disorder, my PTSD was triggered by about a zillion different things, including having to pee, any kind of loud or sudden noise, doctors, hospitals, any mention of India, and being in a moving vehicle. Any of the aforementioned things would cause an immediate and irreversible anxiety attack, eventually culminating in a full-blown nervous breakdown. It was … not the best couple years of my life.

So you can guess, perhaps, that being in a hospital, surrounded by doctors, with a c-section looming (I thought), was not the most calming place for me to be. I had envisioned my labor to be done mostly out of bed, walking around to ease the contractions, bouncing on my yoga ball — but as soon as I stepped into the hospital, that desire completely vanished. All I wanted to do was hide like an animal in a cave and hiss at whoever approached. I turned off all the lights. I lay curled up on my hospital bed, unable to sleep. My heart rate skyrocketed whenever a nurse came in the room. One of the triage nurses brushed up against my leg and I burst out crying. (“Umm … I haven’t even checked your cervix yet,” she said, totally perplexed. I know, dear. I know. I’m crazy. Just ignore me.)

It wasn’t even the thought of a section that scared me. It was simply being in a hospital, where my previous trauma had taken place. It was simply being around doctors. It was simply laying on my back, in pain. That’s all it took. It was like my body remembered what had happened in India and it was screaming Danger! Danger, Will Robinson! Run away! With every passing second, I had to will myself not to run screaming from the room in terror. Not an exaggeration.

I’ll be totally fine as long as nobody comes near me or talks to me or touches me in any way, and I don’t have any contractions or feel any pain.

So for twelve hours I was wide awake, with my eyes closed, listening to my Hypnobabies CD on repeat. Contracting, leaking, and not dilating. At one point I thought to myself, hey, this Hypnobabies stuff really works! I’m not feeling any pain at all! I’m doing it! I’M HYPNOBIRTHING! 

And then the nurse came in. “Um, you haven’t had any contractions for twenty minutes now.” Well, shit.

Finally, the OB came in and asked to break my water completely to move things along. I agreed readily (meaning, I nodded vigorously, in silence). I was terrified of having this baby, but I wanted to push this sucker out and just be done already. So she broke my water. And I felt nothing for a minute. And then:

“Fuuuuuuuuck this!”

It was the kidney stone pain all over again, except that the intensity fell and peaked instead of just relentlessly stabbing me in the back like the stone had done. It was bone-crunching, soul-twisting agony, and the fact that it was very very similar to kidney stone pain racheted up my anxiety ten-fold. Oh my dear sweet baby Jesus, I thought, this cannot be happening. No, no, no. I need the epidural. NOW.

“Epidural!” I screamed. My eyes were still squeezed shut. This was the first word I spoken to my OB since being admitted.

“Are you sure?” She said. “I wouldn’t want to impose –”

“SWEET JESUS,” I gasped. “Need! Drugs! Go! Run!”

My OB scurried out of the room, bless her. And thus began the longest hour of my life — the hour between requesting an epidural and actually getting it. This part is hazy. I remember twisting from side to side, wrenching my earbuds out of my ears (those hypnobabies flutes weren’t doing shit at that point), and screaming at my husband to apply counter-pressure to my back. “HARDER!” I kept screaming. “AH, JESUS! GOD, IT HURTS! PUSH HARDER! FUCK!”

And then the anesthesiologist came. He was pushing sixty, probably three hundred pounds, and looked exactly like the dude in those diabeetus commercials. But he was the most gorgeous vision I had ever beheld.

“OH THANK GOD,” I yelled. “YOU’RE HERE. YOU BEAUTIFUL MAN. PUT YOUR MAGIC JUICE INSIDE OF ME!!!!”

He obliged.

This right here is why I sing endless praises to the heavens about the miracle that is the epidural. I know the epidural gets a lot of flack sometimes, but it was an absolute Godsend for me during my PTSD-related anxiety freakout. Knowing that there was an end in sight to the excruciating pain kept my anxiety from spinning wildly out of control. It showed me that I wasn’t at the mercy of whatever my body was doing — unlike the kidney stone pain, the labor pain could be corralled and controlled. That wimp-juice saved my life. Or at least my sanity.

After the epidural I dozed blissfully for three hours. I was still completely terrified, and I refused to open my eyes or talk with any of the nurses or staff, but my anxiety had gone from an 11 to about a 6 — a considerable improvement. I took deep breaths and dozed, my heart still pounding.

After a couple hours of this, a horde of nurses flocked into the room. I was fully dilated. Tons of nurses and doctors (and a male student EMT, fun times!) all up in my biznatch was pretty much the last thing I wanted, but I was terrified that if I said anything, or moved even the slightest bit, my heart rate would skyrocket and I would spiral into a panic attack. I kept my mouth shut, except for when I heard the ceiling open and a huge mirror descended.

“Oh, God,” I moaned. “I don’t have to watch this, do I?”

“Uh…” the nurses said, and exchanged looks. “No, of course not.” The mirror went back up.

I pushed for one hour. Every time I flopped back down after a contraction, I thought, I’m going to barf, immediately followed by, you can barf when you’re dead! June was born at 1:55 pm. Sit up and look what you did! My OB exclaimed. I used every last bit of energy to hoist myself up on my elbows. I caught a flash of her pink, squalling face (huge cheeks! I thought to myself. Just like my husband! Just like I wanted!) and then collapsed, my eyes squeezed shut, sobbing. It was over. She was out. We were safe.

Well, June was safe, anyway. As soon as I collapsed back into the bed I started hemorrhaging. The OB removed my placenta manually, reaching inside until she was elbow deep in my uterus. It was … not pleasant. The drugs they gave to numb me knocked me out for two hours, but strangely I was conscious, though I had my eyes closed and was unable to move. I heard every word my mother and mother-in-law said when they came to visit the baby. But I couldn’t open my eyes or respond. That was … also unpleasant.

For some people, this would be the epitome of birth trauma. For me, it was healing. Perspective, I guess. I had done it. I had survived. I had actually pushed a seven-pound baby out of my vajayjay and I lived to tell about it. I did it without succumbing to panic. I did it without hyperventilating and sobbing hysterically (for the most part). WE DID IT. It was done, over, accomplished. We were safe.

Hours later, in the recovery room, my husband and I watched Goldfinger (the only thing on TV besides the don’t-shake-your-baby video that we both refused to watch) and laughed way, way too hard at all the jokes. For what seemed like forever, we yelled “I LOVE GOOLLLLLD” at the TV screen and laughed until tears came out of our eyes. We held the baby and enjoyed her, soaked her in.

It was finished; we were safe.

I haven’t had a panic attack since.

 

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

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.

 

A Henry Kind Of Update

Wow, are you tired of reading about my panic disorder yet? Let’s switch gears, shall we?

We are coming up on one year of Henry’s Spina Bifida diagnosis.

 

Last year on November 7th, during our gender ultrasound, everything changed. We learned that our precious son had Spina Bifida, and despite being a writer, I cannot convey my devastation. Or my panic. My first reaction went from no no no no not doing it lol sorry to how am I going to deal with this? Paralyzed? Incontinent? Wheelchair? Shunt? Surgeries? The possibilities were infinite and completely overwhelming. Foremost in my mind was the certainty that because my son had a “birth defect,” our lives would be miserable and tinged with sadness from here on out.

 

So, are they? Are our lives sad and burdensome and full of suffering?

 

Judge for yourself:

 

As you can see, this poor child is miserable.

 

One of the things that terrified me before giving birth to Henry was that there was really no “face” of Spina Bifida. If you did a Google images search of Spina Bifida you would see a) aborted or stillborn fetuses, b) gruesome meningocele lesions, and c) pictures of John Cougar Mellencamp because apparently he has a very mild form of SB called occulta. You can see why this was such a confusing time for us. When we’d try to “research” Henry’s birth defect on Google, there were few families we could look to as an example, despite Spina Bifida being one of the most common birth defects in the world. I can’t find it now, for the life of me, but when I googled “spina bifida stories,” the first one I came across was a little girl who had actually died during her myelomeningocele closure as a newborn (something that is very, very rare). Needless to say, I was all:

 

So nearly a year later, I am happy to say that Spina Bifida has a new “face” for us, and hopefully for everyone we know. It’s a seriously cute face that is perpetually smiling, with super chubby cheeks and huge blue eyes. I don’t know where I keep getting these blue-eyed children because my family is Italian as hell, but I digress.
I struggle with telling people what Henry can and can’t do at this age, because I fear that they’ll think of it as some unbearable hardship. Henry has had two surgeries in his young life — one to close the opening in his back, and one to put a shunt in his head, in order to control his hydrocephalus. Although he can sit up mostly unassisted and meets pretty much every developmental milestone, for some reason he still has not been able to roll over on his stomach by himself. (His hips are at a weird angle, so it’s hard for him to maneuver himself onto his stomach. It’s one of our goals for physical therapy.) He’ll need surgery and casting to correct his (adorable) clubbed feet. I’m not sure when he’ll crawl. His prognosis for walking is good, but it’s not a given. We don’t know if he’ll walk with assisted technology or use a wheelchair. But he can definitely move his legs purposefully and he has feeling in his legs and feet, which is a far cry from what our doctor’s initially told us he would be able to do.
Aside from the doctor’s visits and learning how to navigate the healthcare industry, this kid is surprisingly low maintenance. Recently we learned (for a lot of complicated reasons) that we’re going to have to start intermittently catheterizing him throughout the day. What I expected to be super inconvenient and devastating and a huge pain in the ass was really more like

Meh, whatever.

Basically, from here on out, we have to stick a tube in his pee-hole four times a day, and it’s surprisingly not a big deal at all. Funny, because when I was pregnant with Henry, the thought of catheterizing a baby scared the shit out of me. I would think about it and get cold and sweaty and immediately overwhelmed. It was firmly in the category of “things I couldn’t do.” And guess what? I can do it. I’m still practicing, and sometimes I mess up, but it doesn’t hurt him. In fact, he actually seems to like it. Sicko.
I think even now I have what I’d call “able-ist” leanings. When people ask me how Henry is, I immediately say “he’s totally like a normal baby!” I try to distance him as much as I can from his perceived defect, because I just can’t stand the thought of someone thinking he is lesser-than or deficient in any way. I have to stop saying he’s “normal,” because he isn’t. He’s got a shunt and now he has to pee through a pee-tube. But I guess what I’m trying to say is that you wouldn’t know that just by looking at him. He has a disability, but he’s not miserable. Our family isn’t miserable. Managing his disability is sometimes a lot of work, and a lot of doctor’s visits, and a lot of phone calls to the doctor’s office to get referrals, and that’s a headache. But at worst, it’s a mild annoyance.
Believe me when I say we are blessed to have this child. He has made my life better in every conceivable way. And if I had to choose between having this child with Spina Bifida and not having him at all, I would go back and pick Spina Bifida again, and again, and again.
October is Spina Bifida Awareness month, and this is what I’d like to contribute: If there’s anything you need to be “aware” of, it’s that Spina Bifida can be hard. It can be grueling and annoying and complex. But it can also be full of joy and blessings.
 It’s not easy. But it is so, so worth it.

What to expect when you totally weren’t expecting Spina Bifida

So.

You just got back from the doctor’s office with some upsetting news: Your child has Spina Bifida. Rightfully, you’re terrified. You feel like a pile of bricks was just dropped on your head. If you’re anything like me, this is the most upsetting news you’ve ever gotten in your life, and you’re so stunned, ashamed, and guilt-ridden, you can’t imagine how you’re going to get through the next few months intact. Forget about raising a kid with special needs — you’ll be lucky if you can get through the next ten minutes without crying or throwing up.

Spina Bifida? LOL NOPE BYE.

That was me. That was totally me. If you’re reading this, and you feel like I once felt, believe me when I say I wish I could give you a huge hug. Instead, hopefully I can share some thoughts and questions I had on the day my son Henry was diagnosed, the day we were thrust into the world of Spina Bifida, whether we wanted to be or not (hint: not). We had so many questions that day — here are some of them that I’ve learned the answers to.

Is he going to survive?
The most encouraging thing about Spina Bifida is that the survival rate is fantastic. Ninety percent of people born with Spina Bifida live past the age of thirty. Are you kidding me with that survival rate?

Initially, the doctors made it sound like our son Henry was going to die immediately, in utero. He was a  “severe case,” apparently, and you can imagine our terror when the attending OB remarked, “I can’t even see his cerebellum. There’s just so much spinal fluid.” Not exactly encouraging. When I finally got the balls to do a Google search on SB a couple of days later, I was shocked. Ninety percent of people with this thing not only survive, but survive well into adulthood? I can play those odds.

Was this my fault?
Genetics can play a big role in developing Spina Bifida, and isn’t that kind of the ultimate “your fault”? Just kidding. It was probably just some fluke. You’ll never know what caused it, and that is maddening.  You can opt for genetic testing to see if you have a family history, or you can take folate to maybe prevent it, but we don’t know for sure what causes it. That’s just the facts, jack. Try not to dwell on it.

The doctor said the baby would have no quality of life. 
Join the club, our doctor said that too! The more I research about SB, the more people I meet who have SB (including our boy), the more I realize that this is a complete and total myth, especially in countries with sufficient medical access. For children who receive early treatment and management of their Spina Bifida (things like proper shunt placement, antibiotics, etc), their options are limitless. People with SB can play sports, they can have careers, and they can have dynamic, fulfilling lives.

Please don’t let the medical community tell you what’s what. The doctors and nurses who have treated Henry and I have been angels, but they can’t speak his or anyone else’s quality of life. And they can’t tell the future. According to our doctors, Henry was supposed to be completely paralyzed with no cerebellum. Guess who kicks his legs, has sensation in his feet, and totally has a cerebellum?

This guy.

Early on, I made the mistake of thinking that doctors and nurses were the ultimate authority when it comes to this defect. I’ve told maybe two dozen nurses that Henry has Spina Bifida, and do you know what the most common reaction is? It’s: “Oh, I’m sorry. That’s horrible. What’s Spina Bifida, again?” Several times in Henr’s short life I have run into trained nurses who don’t even know what spina bifida is. Like me, it was something they heard about in a med ethics class one day and then promptly forgot. Or, if they do remember it, they know it as a cluster of symptoms they studied in a textbook once — probably a textbook that uses phrases like “adverse pregnancy outcome.” You can read all about the symptoms and the statistics, but absolutely none of that is going to tell you about the little person you’re growing.

This pain is so bad I can barely breathe.

Yup. Try to breathe anyway. Take a deep breath, count to eight, and let it out slowly. Try not to think too far ahead. Just concentrate on breathing — in for eight seconds, out for eight seconds. Take it minute by minute.

The only thing I can suggest is to just honor your feelings as they come. We found out Henry had Spina Bifida on November 7th, 2012. I don’t even remember anything until the next week, other than sleeping a lot, and crying, and googling stuff, and going to the Children’s Museum so June could run amok and we could just wallow without having to entertain her. I was in a fog for quite a while, and it wasn’t until I started talking about it, writing about it, and processing it that the fog started to lift. And for the next four months I vascillated between outright denial, ridiculous optimism, and flat-out refusal.

First:

Nope. Sorry. Not happening.

Then:

SHUNTS ARE WEIRD LOOKING MY LIFE IS OVER

And then:

Just gonna research disability income JUUUUST KIDDING NOPE

And finally,

Acceptance.

Nature is cruel in that even when you think you hurt so much you’re going to die, somehow you never really manage to actually die. And then things get better. So just keep breathing.

I want to make this go away.

The last thing I want to do is judge another mother who’s heard this diagnosis and is feeling unimaginable pain. When I heard his diagnosis, you better believe there was a part of me that wanted to just make everything go away, and the quickest, most convenient way to do that is just get it “taken care of.” No doubt, your OB offered this as an option — quick, easy, painless.

You want to terminate because you’re in unbearable agony and the Special Needs World is a terrifying place that no person in their sane mind would willingly choose to travel. I understand that. God, do I understand that. A few days after we learned about Henry having spina bifida, I spotted very lightly, and to my horror, my first reaction was relief. Oh, I thought, I’m miscarrying. Surely it wouldn’t be a blast to suffer a second trimester miscarriage, but at least I wouldn’t have to go through the c-section, the myelo closure, the agony of waiting – of not knowing whether he’d survive, the heartbreak of trying to mend his broken little body into some semblance of a normal life. It almost felt like a reprieve. I hated myself for thinking that, but I’m gonna go ahead and keep it real: Having a baby with a neural tube defect is like getting the wind sucked out of you over and over again, and that kind of pain is simply unsustainable.

But let me encourage you, in the most respectful way possible, to carry on with your pregnancy, and have faith that even though it’s terrifying at the moment, one day it won’t be. One day you’ll actually be able to say the words “SB” without vomiting. Words like “shunt” and “wheelchair” will, at first, bring you to your knees. But you want to know something amazing? After a while, those words lose their sting. And slowly they become tolerable. And eventually, you’ll learn to LOVE those words. When Henry was in the NICU, I would pray every night that he wouldn’t need a shunt. I was terrified of the shunt. Then slowly his little head started to grow bigger and bigger, and soon it was obviously clear that he was going to need some help draining the spinal fluid in his head. Surprisingly, the doctors were super conservative and wanted to wait it out, so we monitored his head growth for what seemed like forever — two weeks, in actuality. And by the end of the first few days I was like, god damn, his head is huge! What are we waiting for? Let’s do this shunt already! I turned into the shunt’s biggest cheerleader.

My point is this: It’s not always going to hurt like total hell. It will slowly become bearable. And by the time your little friend with Spina Bifida is born, you will absolutely love him to death. And now Spina Bifida will have an adorable little face. And strangely it will seem manageable. Still scary. Still stressful, at times. But doable. You’ll have a precious, sweet little squishy who just so happens to be dealing with SB. You’re not giving birth to the defect itself.

My doctor says I should medically terminate.
From reading the stories of other people who have chosen “medical termination,” their despair is almost palpable. They were given absolutely no hope by their doctors and ultrasound technicians, and I want to tell you that that is a big fat lie. If your doctor has given you a horribly bleak prognosis, which has happened to so many of us, let me share something uplifting:

I had a lady from the county call me the other day and the first thing I noticed was her tone of voice. It was soft, hesitant, almost sorrowful.

“The NICU sent us your discharge information,” she said, “And we hear you had an adverse pregnancy outcome.”

My first thought was, he died? And then my next thought was, adverse pregnancy outcome? You mean Henry? 

The knee-jerk reaction to Spina Bifida (and to suffering, in general) is to shut it down, take it away, and to think of it as a horrible, insurmountable tragedy from which you and your baby will never recover. If I had talked to this woman the day of Henry’s diagnosis, I would have perhaps agreed that yes, this is a horribly adverse outcome — this is just about the most adverse thing in the world, and I’d like to die now. But three months after his birth and spinal surgery? There’s not an adverse thing about him. Except that he puked down my cleavage this morning after I fed him. We’re doing fine. Really.

What about his quality of life? Won’t he suffer?

Spina Bifida can really suck. Don’t get me wrong. Your kid with Spina Bifida will have different obstacles than a developmentally typical kid, and he’ll likely have several corrective surgeries and maybe even some delays. So — will your kid suffer, at some point? Yes. Will you suffer, having to watch him undergo surgery, having to watch him hurt, or lag behind? Yes. It’s inescapable. When you get this diagnosis, it’s almost like suffering has latched onto you and now there’s no way out of it: If you choose to abort, you’ll suffer the emotional fallout of abortion and the “what-ifs” that go along with it. If you carry to term, you’ll suffer in other ways — the ways I’ve already listed, and in not knowing what kind of life he’ll have. You’re going to suffer, and you’re going to worry.

Welcome to parenthood. When I was pregnant I worried that Henry would die in-utero, or that he’d die from the myelomeningocele closure upon birth. Now I worry that he’ll have a shunt malfunction or that he’ll start needing a feeding tube, as some kids with SB do. With my neurologically-typical daughter, I worried that she had African Sleeping Sickness when she’d take a longer-than-usual nap. I worried, when I let her cry for five minutes in her crib, that she would develop Reactive Attachment Disorder and never bond with me properly. I saw she had a bruise on her leg the other day and my first thought was OMG LEUKEMIA. All I do is worry. Eighty percent of my day is worrying about what kind of various ills my children will succumb to, and the remaining twenty percent is vacuuming goldfish crackers out of the sofa cushions. It’s actually strangely comforting to know that even without the Spina Bifida, I’d be a total anxious mess. You’ll suffer, he’ll suffer, we’ll all suffer. We’ll suffer with the Spina Bifida or without it. Get used to it.

Is there anything I can do?

Fetal surgery is an option. Before 25(ish) weeks, doctors can actually close the myelomeningocele while the baby is still in the womb! And although it carries a degree of risk, the benefits can be life-changing. Google it. Research it. We chose not to have the surgery, for a host of reasons that I’ll probably write about someday, but it’s certainly an option.

What does Spina Bifida look like? 

Do me a favor and don’t look on the google images for kids with Spina Bifida. Google images is not your friend. MOST of the pictures on Google images are a) fetuses with SB who have been aborted and are bloody and mangled, and b) pictures of open myelomeningocele lesions, which are gross to look at and will be closed up right after the baby is born anyway.

If you can, go on Facebook and join some support groups, and you’ll see the face of SB soon enough. There are parents all over these boards just clamoring to show you pictures of their child and to encourage a fellow SB mom. And I’ll bet you dollars to donuts (whatever the hell that means) they will also have a story about how a certain doctor said that their child would never do “x” and sure enough he did it anyway. They’ll show you pictures of their precious children, and you’ll see that when they smile, they smile right from the bottom of their soul. Like my dude.

Missing half a spine, but still a badass

Fifty Shades of Cray

How do I even begin?

If you know me in real life, you know that Henry is here. And he’s beautiful.

That was the thing that shocked me the most when he was born, exactly seven weeks ago, on February 28th: He was — and is — just gorgeous. We have video of me in the operating room, and one of the obstetricians is holding Henry up for me to see him, and all I can do in my drug-addled state is lie there and sob and yell, “He’s so BEAUTIFUL! Oh my god! Look at you! Look how beautiful you are! Holy SHIT!”

Me, seeing Henry for the first time, whilst on Valium

I only saw him for less than ten seconds before they whisked him away to the NICU to prepare for his myelomeningocele closure, but I was positively delighted with what I saw: Huge cheeks; an angry, smashed face; red fuzz on the top of his head. And he looked just like my husband. Ugh, I thought, relieved, thank God I didn’t have an ugly baby. 

I mean, come on. COME ON with this preciousness.

My heart skipped when I saw his feet — tiny, misshapen. He definitely has spina bifida, I thought. He has clubbed feet. He’s here. This is what spina bifida looks like, and I can’t un-know it. There’s no going back. But it was just a twinge of fear, and then it was gone. I don’t know if it was the copious amounts of anti-anxiety drugs the anesthesiologist kept siphoning into my body, or whether I was feeling the prayers that I had been begging people for for months at that point, but when I finally saw him, when I saw the opening in his back and his crooked little feet, all I felt, besides the tiny twinge of fear, was elation. Finally, I kept thinking. He’s here. After months and months of anticipation, at least now we could say that the hellish anticipation was over. Now we could start the life-long process of getting to know him and learning how to navigate his diagnosis. Now we could stop floundering in our helplessness and actually do something.

But I was stunned by his beauty, and shocked, to be honest, by just how normal he looked. My husband and I kept exchanging confused glances and saying to each other, “He looks gorgeous. He’s great. He looks like a normal baby.” My first impression of spina bifida was that this must be some messed up shit, since the nurses and the doctor who told us his diagnosis could hardly contain their devastation as they relayed the news. By the looks on their faces, I got the impression that he’d be either dead or horribly deformed. I thought his clubbed feet would look like little mangled chicken drumsticks. I thought his hydrocephalus would make him look like one of those aliens from Mars Attacks. I was bracing myself for a full-on Quasimodo baby, and I was shocked to see that he was a beautiful baby, not merely the sum of his various physical ailments. He wasn’t a diagnosis. He was a hearty, sturdy, strong little boy.

oh it’s just my hydrocephalus, NBD.

Soyeahanyway. He’s gorgeous.

I didn’t see him for the next 13 hours or so. I wish I could say it was really hard on me and I missed him dearly and was clawing my way down to the NICU to see him, but in all honesty, I was just tired and slightly high and greatful for the opportunity to take a nap and get something to eat, for the first few hours anyway. FYI, when you have a c-section, you’re not allowed to eat for twelve hours before surgery and you can’t eat after surgery either until you pass gas — whenever that is. Uhhh …

The nurse told me that and I was like, haha, yeah, so can you get me a cheeseburger? And then I realized she wasn’t kidding and I started hyperventilating. Say what now? What if I’m not particularly gassy? What if I don’t fart for a week? Girlfriend just shrugged at me and said they’d give me Bean-o, but until I farted they would only let me eat broth. BROTH. I almost fainted. On top of that, I couldn’t see the baby until I could walk to the bathroom and pee on my own. After twelve hours of mandatory bedrest, I was a peeing, stumbling, farting fool, rambling about my baby and NICU visiting hours and cheeseburgers.

Me, on my way to the NICU

And can I just say, apart from the not-being-able-to-see-Henry thing and the whole starving-and-willing-myself-to-fart-for-fifteen-hours thing, this c-section was truly an amazing experience. I can’t even remember how many times I literally begged my friends and family for prayers — not just for Henry, but for myself; that I, with my history of PTSD and my phobia of all things medical, would somehow miraculously escape being traumatized from having an inevitable (yet very necessary) c-section. And I want to say that I felt those prayers. I felt every single one of those prayers covering me and soothing me and encouraging me as they wheeled me into the freezing OR and jabbed me in the back with a needle. I thought I would be crying in fear, and I was completely calm. Steady. Ready to meet my baby. To my amazement, I didn’t cry once. (Although I did scream MOTHERFUCK! when they gave me the spinal block, much to the surprise of the attendings.) It may not seem miraculous to you, but emotionally I came out of that operating room completely unscathed — something I attribute totally to the power of prayer. There is simply no earthly reason I — someone who cries like a bitch during a routine cervical check — should have been that calm. (Other than the sedative they gave me, I’ll admit, but I’m talking BEFORE that. Unless the nurses slipped something in my IV and then it was probably valium AND prayer, which is also cool. But no seriously, it was like Jesus reaching down and giving me a big bear hug, and I cannot thank you people enough for that gift because it allowed me to be fully present when I met my son for the first time. What a precious, precious gift.)

right after his myelomeningocele surgery on the day he was born
Recovering like a boss

Oh, and compared to my vaginal birth with June, an elective c-section was a cakewalk. I didn’t even have to move off the bed. All I did was lie back, request a shitload of drugs, and let everyone else do the work. No pushing, no bullshit hypnobreathing, no screaming at my husband to apply counter-pressure on my back. Just a lovely drug cocktail and some nice warm blankets afterward. I know it’s surgery and super serious and I shouldn’t be flippant at the idea of very serious life-saving surgery, but for real, I’m lazy and I didn’t have to do any work; I would not be bummed in the slightest if I ended up with another elective section. Bring it!

Henry would spend the next 25 days in the NICU — an eternity for us and a drop in the bucket compared to some other babies in there — and he blew us away with his progress every single minute he spent in there. Like I said, we didn’t know (and still don’t know) the extent that spina bifida will affect his life. Some children can’t urinate on their own and need to be catheterized. Some have to be fed through GI tubes. Some can’t breathe on their own. Some are severely learning impaired. We simply don’t know how his diagnosis will manifest itself in his life, and there’s no GIF to convey the anguish I felt after his birth, wondering whether he would be one of those kids who would need extensive interventions just to breathe and eat.

(Okay, this GIF is pretty close. And this one.)

But like I’ve said before, Henry does whatever he wants, like a boss, and I have a feeling he’s going to blow everyone out of the water with what he can do, even if he has to do it on his own sweet time. Despite my fears, Henry survived the surgery. And then Henry successfully weaned off the ventilator. He ate like a total champ. He downed twenty mLs of formula, then thirty-five, then fifty, then 105 mLs (4 ounces, I think) per feeding, for every feeding, after that. He opened his eyes. He watched us. He smiled. He slept. He breathed. He ate some more. He had no apnea spells. He had no seizures. And to my absolute delight, he passed his urodynamics test with flying colors, which means no catheters for this boy, at least for the time being. Prayer works, yo. Your prayers worked. He healed. I healed. We spent the next month traveling back and forth from the hospital to deliver milk, to visit him, to finally hold him, to marvel at his progress. And every moment we weren’t at the NICU, we were at home with June spending time with her, trying to survive with part of our family missing, pumping breast milk and sleeping and watching a lot of Pawn Stars when we weren’t en route to or from the hospital.

There is so much I could share with you about the NICU, and how scary that time was, and how special it was at the same time, and how absolutely cray. I probably need to get some distance from it first before I reflect on it, but what I can say was that we were blanketed by prayer. Even though we missed our boy, even though we wanted him home with us and there was more than a few nights I cried being away from my little guy, I personally had the most amazing peace. I was assured by faith that he would be okay. And, selfishly, I was so thankful for the extra rest, for the opportunity to sleep through the night, for the assurance that Henry was being taken care of by a fleet of angel nurses and skilled surgeons. There was fear, but there was peace. And before long, we brought him home.

More updates to come.

Third Tri-monster

You guys. YOU GUISE! I was nominated for a Sheenazing Award for Funniest Blog!

I’m totally not buying it — surely I was nominated as some kind of cruel joke, seeing as I’m up against Calah Alexander and Simcha Fischer, outstanding writers who routinely make me pee myself with laughter. But if you could make the clicky on this link and vote for “wifeytini” in the first category, I would be forever grateful.

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In less exciting news, I’m in the third trimester, and I’m starting to feel like Precious. And to be perfectly honest, I haven’t really been wanting to update this blog. Between writing about my grandpap dying and Henry’s impending birth, I’m starting to think that every post I write has this woe-is-me vibe, and I don’t want to give the impression that I’m drowning in grief over having a handicapped kid. I’m really not. I don’t know if it’s denial, zoloft, the prayers that have been covering our family, or some combination of all three, but I feel so much peace about this little boy. Most of the time.

Truthfully though, there isn’t much to update about, and while we both feel strangely peaceful about Henry’s prognosis, we’re still cycling through the same old stages of grief, guilt, terror, optimism, and excitement. I’m ready to be done with the “wait-and-see” game and just dive into it, already, because anticipation is the worst. He could be mostly fully functional or he could be completely paralyzed and cognitively delayed. Or he could not survive his spinal surgery at all. Either way, I’m sick of waiting. I just want to meet this little guy and get to work on nurturing him to his fullest potential. In moments of excitement and optimism, I think of this quote by St. Joan of Arc and I feel PUMPED: “I am not afraid. God is with me, and I was born for this.” Fuck yes, Joan. That’s how I feel about Henry. There are definitely times when I’m sick with worry, but mostly I just want Henry to get here so we can start getting to know our boy and start kicking Spina Bifida’s ass. This is the baby I was given, and if he has to use a wheelchair, or he needs a one-on-one, or he needs special occupational therapy — well, are those really that horrible? It’s scary to think that I’ll probably have to catheterize a newborn … but once I learn how to do it, won’t it just become a normal part of life? Won’t things like loading up a wheelchair in our car and driving to different specialists just become totally commonplace after a while? That takes the sting of his disability away, for me at least, for the most part — knowing that waiting is the hardest part. Someday soon it won’t even be that scary, it’ll just be totally normal.

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I’m finally at the point in pregnancy (32 weeks) where I can start looking forward to just being done already. It’s easy to forget, but pregnancy lasts a long-ass time. We’ve been anticipating this baby since JULY – basically forever ago. As much as I dread our NICU stay and my c-section, I am, however, completely ready to stop craving milk every single second of the day. And wear normal-sized shirts. And tie my shoes without getting winded. And drink wine. And beer. And spirits. And wine.

My thoughts, at every waking moment

And in addition to not carrying around 40 extra pounds and DRINKING ALL THE BEER, there’s also going to be this tiny little person with a round, smooshy little face who I’m going to completely fall in love with, and I can’t help but be really, really excited to finally meet him. Surprisingly, I kind of miss having a newborn. Then I remember that all I have to do to re-create the newborn stage is  douse myself in milk, light my nipples on fire, and have someone punt me in the crotch. Not at all like those newborn stock photos you can find on any random photographer’s website:

That’s sweet but no seriously you’ll never sleep again

It’s more like this, if these things were honest:

I had way too much fun photoshopping this.

I’m starting to think that newborns are only something you can appreciate in retrospect.

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Rhogam. So it turns out I don’t need a rhogam shot and I’ve never needed it. One of my first visits with my initial OB (my very first OB that I ended up firing, not the one that I have now and love), she insisted I get a rhogam shot because of the possibility baby June could be born with negative-type blood, and I could miscarry her since I had positive-type blood and so did Lou. At the time I thought nothing of it, but it turns out she made me get the rhogam shot because she wasn’t sure if Lou was really the father of my baby. She told us as much before she gave us the shot, but I thought surely there was another reason she wasn’t telling me. When I relayed to Henry’s Maternal Fetal Medicine specialist that my last OB insisted on a rhogam shot, he raised his eyebrows at me.

Doctor: “Don’t you have negative-type blood?”
Me: “Yeah, I’m O negative.”
Doc: “Mmmm.” [to Lou] “And what’s your blood type?”
Lou: “AB negative.”
Doc: “Well, then you don’t need rhogam. It’s impossible to have a baby with positive-type blood if both the parents are negative.”
Me: But … shouldn’t I have it anyway? I had to get it last time because my OB said she couldn’t prove the paternity of the baby, so it’s better to be safe than sorry.
Doc: …
Me: No?

So I guess I totally don’t need rhogam and my other OB sucked. I thought there must have been some other reason she wasn’t mentioning that I should take advantage of a rhogam shot, but apparently not. Don’t two negatives equal a positive, or something? Can’t a baby, like, inherit negative blood from somewhere else in the family? Does blood work like that?

Math. Science. Logic. They’re not my strong suit.

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Lately I’ve been following the story of this family, whose eighth child, Dominic, was born with encephalocele and just successfully underwent major facial reconstruction surgery. Dominic’s miraculous story was featured in the Boston Globe yesterday, and oooh lawd. The comments. THE COMMENTS YOU GUYS. Someone actually called this boy an “error of nature.” LORD JESUS HELP ME. Someone actually wondered why one tiny boy deserves so much medical attention when the majority of the country can’t get access to “basic” health insurance. “Who pays for this?” one commenter asks angrily. “All the other folks on the same insurance plan who have to foot the outrageous bill for this kid.”

Dudes. Exactly what do you think health insurance is? THAT IS EXACTLY HOW INSURANCE IS SUPPOSED TO WORK. You’re sick, you get treatment. You need life-saving surgery, you get it. The cost is leveraged. This is a health insurance success story. But apparently it’s some miscarriage of justice when it actually works in favor of a sick little boy who would otherwise die without it. Apparently, according to these commentators, this is a tragedy which should have been “faced” (read: aborted) and the family should have “moved on.”

“Honey, just take care of it. Then in a few years you can try again and have a real baby.” 

Between my pregnancy brain and my four hours of sleep, I can’t form a super-rational argument as to why exactly I think this line of thinking is barbaric, able-ist, and wrong, so I’m just gonna give it a big “AW HELLLL NO” and resolve that much harder to fighting for my own little “error of nature” who also needs expensive neonatal surgery, and who I’m sure these coldly utilitarian dickwads think should have just been tossed in the trash. I’m going to show these eugenic-loving assbutts that a life with a disability can still be a life of purpose and joy. Henry is here, and he’s here to stay. If anyone has a problem with that, you’re gonna have to go head-to-head with one extremely pissed off mama bear, and I promise it won’t be pretty.

Thank God — THANK GOD — our families have been nothing but supportive of us, and one hundred percent welcoming of baby Henry. The joy and love that they’ve expressed to us over this little boy is truly proof that good exists in this world, and that God has sent us guardian angels in the form of our friends and family members. Every prayer, every kind word, every card — we have felt it. And we are so grateful for it. And, frankly, it’s what renews my will to live after reading the drivel of these awful, awful commentators.

/rant. Someone is standing in front of me pointing to her diaper, so duty calls. Mama out.

Jed

Soooo. What’s been going on, you’ve (totally not) been wondering?

My grandpap died. Right before the world was supposed to end on the 21st, a piece of mine actually did. We got a call saying that Grandpap, who had had a heart attack the week before and wasn’t as stable as we would have liked, had coded and been moved to the ICU after 25 minutes of resuscitation. It was grim news, but the term “ICU” seemed hopeful. “ICU” meant “stable,” right? It meant “alive” for the time being, right? Twenty minutes later we got another call. He was gone. He had coded again and they couldn’t bring him back.

Adding insult to injury, we also weren’t able to make the nine-hour trek to Ohio for the funeral. Between the excruciating hip pain I get when sitting upright for more than an hour at a time, and our fear of being away from a neurosurgeon in case I went into labor, there was just no way we felt comfortable leaving the state.

(By the way, this is the second time one of my grandparents has passed away and I’ve been unable to go to the funeral because I was too far along in my pregnancy. Last time, with June, my granny died when I was 37 weeks pregnant and I could barely squeeze my fat ass in the front of the car. So no funeral then, either.)

Part of me is so angry and guilty that I didn’t get a chance to properly say goodbye. During the funeral and the days leading up to it, I repeatedly would text every member of my family who had made the trek to Ohio, just asking what was going on, who was there, what was happening. I just so badly wanted to be part of the grieving process, the family process, and I couldn’t be. That made it hurt more, believe it or not, and paradoxically, it also made it easier. If I had actually seen a body, I would have been devastated. If I actually had to go back to Ohio and smell those familiar smells and see everyone in my family crying, I think I would have cried so hard I would have puked. I shy away from suffering (who doesn’t?) so in a way it felt like a reprieve. But it also felt like a knife in the gut. Who knows what it’s going to feel like when I have to go into Ohio next, with nearly all of my grandparents dead and a good deal of family moved away. It’s going to feel like a graveyard. And I’m dreading it.

My small act of atonement for not going to the funeral is to name baby Henry partially after my grandpap, Jed, whose real name was William Paul (a name that so does not suit his goofy nature, but a name I really like nonetheless). So this week when we see Henry on the ultrasound screen, we’ll be able to address him by his proper name: Henry William Paul Wisniewski.

Sounds perfect to me. I hope Grandpap is holding him and keeping him in the meantime.