Fight or Flight (but mostly flight)

I thought Henry’s shunt had malfunctioned the other day. While I sat on the couch cooing at Henry, June ran back and forth between our two couches, climbing over the edges and flopping down on my shoulders. One of those times, she missed, and flopped down on my lap, grazing Henry’s head with her foot. Right near his shunt.

Who knew it was possible to feel so so furious at a two-year-old? I marched her right over to time out and sat down to nurse Henry, who promptly calmed down and fell asleep (obviously I thought OMG CONCUSSION but he was sleeping so peacefully I didn’t want to wake him up. Mom fail). June sat in time out for a whole five minutes — although it probably wasn’t at all effective since she could see Barney on the TV from where she was sitting, and I couldn’t reach the remote from where Henry and I were sitting. Double mom fail.

The next morning while we were nursing, Henry gagged. And then he gagged again. And again. I stopped feeding him and he gagged some more. For those of you who don’t have a passport to Special Needs World, Henry has something called a Chiari II Malformation, where his cerebellum is pushed down into his spinal column as a result of the hydrocephalus. This, in turn, affects his breathing and coordination and his suck/swallow reflex, which is why you see some Spina Bifida kids using tracheas and feeding tubes. His hydrocephalus is under control, thanks to the shunt, but if that shunt were to malfunction, his Chiari symptoms would come roaring back. A persistently downward gaze, choking/gagging, apnea spells, and irritability are all things to watch out for as a sign of malfunction.

To illustrate.

Long story short, Henry is totally fine. I think. He’s not showing any Chiari II symptoms, and I guess the gagging was just a one-time, weird fluke. That still hasn’t stopped me from eyeing his shunt suspiciously, and feeling on it every second I get, and putting a mirror under his nose while he sleeps to check for apnea. So basically, I’m still an anxious wreck. Today we’re headed up to the city for another doctor’s appointment — maybe the sixth in the past two months? — to check his kidney function and whether or not he has any muscle tone in his buttonhole. (I can’t say “anus.” Just … no.) I’m not ready-to-run-out-of-the-room terrified … but I’m still getting that panicky, nervous-diarrhea feeling.

Motherhood is fuggin terrifying. Whenever one of my kids have any kind of ailment my first reaction is “Oh, no, sorry, this is too hard. Can’t do this. I gotta bail.”

Fever? BRB NEVER

Especially with puke. I cannot tell you how much I hate puke. And not in a “oh it’s so gross way,” but in a heart-pounding, stomach churning, fight-the-urge-to-run kind of way. I’ve never actually been officially diagnosed with anything, but I’d bet a million, billion dollars that I have some kind of emetophobia. In fact, if I go a few days without taking Zoloft, I start having these mini-anxiety attacks when I put the kids to bed at night, wondering if they’re going to wake up in the middle of the night sick. (That’s always how it happens, by the way, for you non-parents reading this. They’re always fine when they go to bed, and then, at 3 a.m.? Puke city.) A friend of mine once rubbed her stomach and mentioned casually that she was getting over the stomach flu, and I literally stood up and left the room in mid-conversation. Probably not normal behavior.

Part of the reason I was so upset when Henry was diagnosed with Spina Bifida was that I have what I like to call “crazy anxiety brain.” Five years ago, I had to have emergency surgery when I was studying abroad in India, and that kicked off a cascade of terror that would wash over me whenever I had to deal with anything even remotely medical, even routine doctor’s appointments. Getting an ultrasound, giving birth — that was challenging enough for me, but I was handling it with zoloft and constant prayer. But then … to get pounded with the double whammy that is medically-related PTSD and a kid with special needs that will involve approximately a bajillion doctor’s appointments and surgeries to manage??? Uh…

Not cool, God.

You’d think I would hate motherhood, since children just spray puke and pee and are generally just little disasters waiting to happen. In actuality, motherhood is my vocation — the path God has chosen for you, by which you draw closer to Him and thereby closer to heaven. It may send me fleeing from the room at times, but even the puke and the poop and the anxiety is worth it, because it will turn me into a saint. That’s the idea, anyway. And I’m like, definitely getting into heaven, y’all. Because all I do when I’m around my kids is pray like crazy. Case in point:

[while cutting June some hot dogs] Please, please Jesus, don’t let June choke on these. Please don’t let her get pediatric cancer from all the nitrites and pig feces that are probably in here. There’s probably a lot of sodium in these things, too. Oh, dear God, please don’t let her get sodium poisoning and die and then let CPS take Henry away like that one Dateline special I saw that one time. Oh, please God, don’t let her get food poisoning and then have me take her to the hospital and have the doctors think she has Munchausen by proxy like that one book I read. Oh, and please, please, please don’t let her get salmonella, e coli, or botulism. Or autism. And please don’t ever let her get molested somehow. Thanks. Amen. 

You can just go ahead and canonize me right now. Obviously.

Maybe I should talk to the doctor about getting some more Zoloft.

Or maybe I should just stop giving her hotdogs and watching Dateline.

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It’s a Wonderful Life

Three years ago, I was fighting off panic attacks and an IBS flareup, stepping into my wedding dress, trying not to mess up my hair. It was gorgeous outside, and warm, and it smelled like summer. I had hydrangeas in my bouquet. I was getting married.

Despite my deer-in-headlights look, I was actually pretty excited.

Our wedding was the bomb, despite the anxious diarrhea and the uncontrollable, nervous sweating (TMI, but such is life with an anxiety disorder and PTSD. Did I use enough acronyms in that sentence? LOL WTF BBQ). The best part about our wedding was that Lou and I had been engaged for three years at that point, and as Catholics we had (somewhat reluctantly) agreed not to live together before marriage. Now was the culmination of three years of anticipation and we could finally finally finally FINALLY start living together (and, you know, like, live together, wink wink nudge nudge I’M TALKING ABOUT SEX SORRY FAMILY WHO READS THIS.) That day was exciting in so many ways. And also there was steak. Lots and lots of steak. And almost every member of our family. And our close friends. Dancing and eating steak. So maybe the best day ever?

(We had some pretty delicious chocolate cake, too. Just saying.)

Three years later, I’m nursing a sweet 3-month-old and my almost-two-year old is taking a nap. My life is so full and rich. Metaphorically rich. We’ve had at least $2k in car repairs in the past month and we’re still recovering from the month of unpaid leave that Lou took from work when Henry was born, and for the love of God, you guys, if you don’t have an emergency fund start one right this second because we would be so unbelievably screwed and in debt without one. But I digress. Apart from car repairs and NICU stays and other “character building” life events, our life together is really quite rich and full and happy.

I don’t write about Lou a lot on this blog. I’m hesitant to over-share — primarily because I think it would embarrass him, but also because our marriage is the most important thing to me in the world, and what we have is so unique and precious I’d probably ruin it with words. And try as I might, there’s no GIF to describe how wonderful of a match we are, or how happy he makes me, or how he helps me be a better person, in spite of myself. Nevermind, I found one:

We’ve started going to counseling together, every other week. Not because our marriage is in shambles or we can’t get along — on the contrary, we get along so well that he can make me laugh even when we’re fighting and I’m screaming at him in frustration — but because we need help working out some stuff that we can’t work out on our own. I can’t tell you everything. It’s really not even my story to tell. But I want to say publicly that I am so proud to be with someone who values his well-being and our marriage so much that he will voluntarily go to a counselor and do something that makes him incredibly uncomfortable — talk. About himself. To a stranger. And he does that for our sake. That is love.

Did you know when I was little — maybe nine or ten? — I wrote in my diary a list of qualities I wanted God to find for me in a husband. I wanted my future husband to know Jesus. I wanted him to love children. I wanted him to be hilarious and smart and loving and talented and crazy about yours truly, of course. Most of all I wanted him to encourage me, and just let me be who I am, warts and all, and see me at my worst and love me in spite of myself. And like every single other time in my life, I totally didn’t believe God would give me what I asked for as a child, in earnest. But He totally did. When we got married, in church, in front of the Eucharist, before hundreds of family members and friends, it was like God was saying, see how much I love you? I gave you all the things you asked for — and things you didn’t even know you wanted yet. And then, with our babies, it’s like our marriage is the gift that keeps on giving. I seriously sometimes want to say, okay, enough, God! This is too much! It is RIDICULOUS how blessed I am! What gives? 

Three years after I put on that super heavy, super tight dress (and subsequently had a panic attack about not being able to get it off in time if I wanted to pee), I’m legit living the life that I dreamed I would someday live. I have two beautiful babies. They are hilarious and cute and I get to stay at home and enjoy every second of them. I get to write in my spare time and just have a tiny little perfect life with my best friend and our kids. It doesn’t get any better.

My life is the bomb and I have Lou to thank for it. It doesn’t get any better than this.

Thank you for our wonderful life, Lucius James!

(“Sweetie, can I write about our anniversary and how we’re in counseling right now?”
“Not a problem at all. If you wanted to throw in something about my weiner, that’d be cool too.”)

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