Bifin’ Ain’t Easy: The Surgery Edition

Yesterday, my husband took Henry up to Park Ridge for his tendon release and casting surgery to correct his bilateral clubbed feet. Henry is fine and recovering well (aka sleeping a ton) but the surgery did not go as we expected.

Ignore the blurriness. Have you ever seen a little boy more adoring of his daddy?

Ignore the blurriness. Have you ever seen a little boy more adoring of his daddy?

Apparently, Henry’s little bones are all jacked up, and his clubbed feet are irregular, even for a kid with spina bifida. His talus bone, I guess, is bent at a weird angle, which complicates the surgery and the casting a little bit. Here is what I understand in laymen’s terms:

Normal club foot repair surgery: Doctor goes in, releases the tendon (shudder), turns the bones, restructures the foot with a splint, and casts the foot to keep it in place.

 What they did with Henry: Doctor goes in, releases the tendon, goes to turn the bone and sees that it’s weirdly shaped and turning it would make his foot even more crooked. Doc scratches his head. Doc sews up the leg, casts it, and hopes that the casts will do the work of flattening his feet and restructuring the foot on its own. If that doesn’t work, Doc will eventually have to remove the bone altogether.

What this means for Henry is that we have to cast his feet ONE AT A TIME, to see if the procedure is successful on one foot before we start the procedure in the other foot. The reason they can’t just release the tendons from both feet and cast them at the same time is that if the surgery doesn’t work and we need to remove the bone, scarring from the first surgery can complicate the second procedure. So instead of casting both his feet for a few months and being done with it, we have to go through the casting process for one foot, see if it flattens and straightens, and then go the tendon release surgery and the casting process ALL OVER AGAIN six months later.

So eventually, the clubbed foot is going to be corrected. But we’re going to have to take a much longer route to get there.

Not to be a Debbie Downer, but this … kind of sucks.

My sweetest little boy in his foot/leg cast. I've never seen his leg look so straight!

My sweetest little boy in recovery. I’ve never seen his leg look so straight!

Don’t get me wrong — I am so thankful that we have the resources to fix his clubbed feet in the first place. I know that for the majority of children in the world, this surgery isn’t even an option. Some people live with clubbed feet their entire lives. I’m so glad we get to have this procedure done, even if it’s going to take us a little longer to cast his feet than we expected.

The difficult part about this, though, is that our hospital is 90 minutes away. And will have to drive up there every week for several months to re-cast his feet and legs. That’s a LOT of gas. And a LOT of time. Days that we drive up to Park Ridge I consider “survival days” — we’re just doing the minimum to survive. June watches a LOT of TV (we have a TV in our Honda Pilot; it’s pretty freaking sweet for long drives), both kids eat a lot of snacks, both kids play with the iPad for far too long to keep them occupied while I talk to the doctors. It’s not ideal, but it doesn’t happen very often. This casting process means we’re going to have many, many “survival days,” and that kind of just breaks my heart. I like spending our days quietly at home, not throwing bags of Goldfish crackers in the backseat and cranking up the volume on the television so I can concentrate on finding the right highway exit.

This is one of those days where I really hate the ‘bif. It can be such a freaking drain — on your family, on your finances, on your time, on your health. On EVERYONE. And I don’t say this because I’m complaining — I’m saying this because this is what spina bifida looks like. This is reality. It’s not doom and gloom, but it’s not always rainbows and sunshine either.

So this kinda sucks. But you know what? We’re grateful for this experience. All of it. No mom really wants to see her child suffer, but I’m hoping that Henry will struggle just enough to become a young man of character. I’m hoping that not only will he eventually have functional feet, but also that he can use this experience to encourage other people as well. What if one day some kid in his elementary school class has to have surgery for a broken leg, and he’s terrified? What if Henry can draw on this experience and help assure the kid that if he can have casts for months on end, so can anyone? And maybe he’ll give the kid a smile and a hug and a promise to draw a picture on his cast as well. Wouldn’t that just be the best?

We’re gonna use this shitty situation for the glory of God. We’re gonna turn this tragedy into a triumph — one leg at a time.

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

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.

As long as it’s healthy. But what if it’s not?

Six months into our pregnancy with Henry, after our spina bifida diagnosis, my husband and I would make regular treks up to Park Ridge to see the Maternal-Fetal Medicine specialist, who kept us abreast on how the baby was doing in-utero. Since I’m extroverted and I adore small talk, I started chatting up the receptionist as we were filling out some paperwork, post-appointment. At this point, we had already been told by two separate doctors that Henry would be totally paralyzed from the waist down.

We started talking about her kids — three girls! — and I asked her if she preferred girls, or if she might try for a boy. We both quickly agreed that the baby’s sex wasn’t really that important — boy or girl, they were blessings.

“Oh, I like girls, but it doesn’t matter to me!” she exclaimed. “You know, as long as they’re healthy and running around!”

I felt it and Lou felt it, simultaneously — that hot knife of grief in the belly. I think he actually winced. I laughed, bewildered, and said something like, “LOL I KNOW RIGHT? HAHAHA OTHERWISE IT WOULD BE AWFUL, WOULDN’T IT, IF THEY COULDN’T WALK???” and then slumped back to the waiting room with my paperwork.


Later, on the ride home, Lou bristled. “She works for a maternal-fetal specialist,” he grumbled. “What was she thinking? Healthy and running around? What the hell?”

That phrase has haunted me, ever since we found out that our child would be born with a birth defectAs long as it’s healthy! People chirp at you, when you talk about finding out the gender. Boy? Doesn’t matter! Girl? Who gives a shit! Nothing else matters but perfect health! And once you discover that your kid isn’t healthy, it almost feels like a threat.

Because what if it’s not healthy?

What then?

That phrase terrifies me. Because we’re talking about our children — an arrangement that’s supposed to be unconditional — and as long as they’re healthy! is alarmingly conditional. Everyone’s happy for a new baby and congratulations are in order — but only under certain criteria. Right? And if baby doesn’t meet that criteria, well, all bets are off. All the congratulations vanish. Your support system bottoms out from under you. People start whispering. Doctors start talking about going in another direction. Changing the course of the pregnancyDisrupting the pregnancy. Termination. Because, clearly, if your child isn’t picture-perfect, a SWIFT DEATH is preferable.

It’s not wrong to want a healthy baby, make no mistake. Nobody prefers a medically fragile baby. Nobody wants to see her child suffer. So we wish for health. We make ominous, defensive, vague statements. Everything will be okay — unless it’s not! 

Let’s retire that phrase. Shall we?

It’s time to stop putting health on a pedestal.

Is health important? Uh, yeah, duh. Is it the summit of our human experience? Is it the sole quality off of which we should determine the worth of our children? No.

We need to move past this fatalistic attitude we have that says a life with a disability is tragic and hopeless. We need to get over the idea that a handicapped baby is better off dead. We’ve had handicapped presidents, for God’s sake. We’ve had handicapped olympic medalists. One of the most sought-after motivational speakers on the planet has neither arms nor legs, and I’ll bet you a hundred bucks he’s smarter and more physically active than I amFor the love of God, one of the most poetic and well-written books in existence was written by a man who could only blink his left eye.

And when we say as long as it’s healthy!, we’re negating all the unlimited potential we have as human beings. We don’t need to be “healthy” to be heroic. And we shouldn’t need to be able-bodied to be considered human beings.

And when we say as long as it’s healthy!, we’re telling parents that our support as a society is conditional. Have a healthy baby, and you’re golden. Come back from your ultrasound with a special needs diagnosis, and we’ll need to start discussing your options.

Come on, society. We’re better than that.

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.

Quick Takes

1. I misplaced my zoloft the other week and just haven’t been able to locate it since. So pretty much I haven’t taken zoloft in about five days, and boy is that a mistake if you have an anxiety disorder. The first two days or so you feel fine. You start to think wow, I don’t think I even need this stuff anymore! Later, zoloft! And then by the fifth day you start repeating snippets of movie dialogue in your head, just because it feels oddly comforting. And then you start not wanting to leave the house because, like, anything could happen outside, and you might overheat and die of heatstroke if you stay out in the humidity too long, and so why not just hang out inside? All day? In the basement? Under a blanket? Where nothing will harm you and you won’t have to talk to anyone? Because that sounds normal, right? And before you know it all you want to do is watch The Waltons for six hours while you  eat cheerios and nurse the baby and cry, and then you find yourself at the local Walgreens in the middle of the afternoon buying an ovulation predictor kit because you’ve started to become weirdly obsessively paranoid that you’re just going to spontaneously ovulate and conceive twins with spina bifida so you go home and chug three cans of Lipton’s and pee on thirty test sticks because I JUST CAN’T HAVE TWO MORE BABIES WITH SPINA BIFIDA RIGHT NOW, GOD, I JUST CAN’T.

because feelings are exhausting.

So, note to self — call the pharmacy tomorrow.
Totally not pregnant, by the way.

2. Doctor’s appointments. We have them. We see a neurosurgeon. A neurologist. A plastic surgeon. A physical therapist. A developmental therapist. A care coordinator. A urologist. A nephrologist. An orthopedist. And when I asked the neurologist during our visit last Friday a specific question involving his vision, she said she would have to refer me to an optometrist.

alas, she was not.

One frustrating thing about Spina Bifida is that there’s no central “Spina Bifida doctor.” Man, would that be great. With typically developed children, you go to a pediatrician who just specializes in general kid ailments and whatnot. Fever? Pediatrician. Learning delay? Pediatrician. Vaccines? Pediatrician. Random question? Pediatrician. Just call your pediatrician! For whatever! With Henry, he sees fifty different doctors who all specialize in very, very, very specific fields. Before having Henry I was under the impression that the neurologist and the neurosurgeon were kind of the same thing. NOT SO. I still don’t quite understand the difference between the neurosurgeon and the neurologist, but I do know that if I think his shunt is malfunctioning, I call one doctor, and if I want to ask how his shunt will affect his learning capability, I call the other one.

It’s disconcerting, after a while, to realize that you actually know more about SB than your own pediatrician does, and you got your degree from Google University. Everyone tells you before the baby is born (when you’re expecting a baby with special needs) that you’re going to become your child’s own expert. And it’s one thing to know that on an intellectual level, but there’s something about seeing your pediatrician shrug when you ask them pressing questions about hydrocephalus or Ponsetti casting.

the look your pediatrician gives you

I honestly have to bite my tongue to keep form laughing when I remember the things I used to worry about, with June: “What’s that weird indentation on her head?!” (Answer: her soft spot.) “What’s that weird piece of skin on her ear?!” (Answer: A skin tag.) “JUNE ONLY NURSED ONCE LAST NIGHT. CANCER?” (Answer: No.) At least with my typically-developing child, the doctors could just smile and pat me on the head and send me on my way. Silly first time mom! It was patronizing, sure … but it was comforting, too.

Now my anxiety has a little bit of credence to it, and frankly, I wish it didn’t. Now when I get weirdly paranoid about Henry sleeping too much, it could be nothing … or it could be a shunt malfunction. Big stakes. And as opposed to our pediatrician, who lives literally three minutes from our house, I would need to call our neurosurgeon if I suspected something was wrong with Henry’s shunt. And he practices one hour from our house. And our co-pay is $30. And I don’t have a car during the day. So like I said — big stakes.

3. One upside to having so many doctor appointments all over the damn Chicagoland area is that I’m getting good practice driving on the highway, something I’ve never done by myself in all my twenty five years until just last week. Up until recently, whenever I’d merge onto the highway it would go something like this:

I’m scared of driving, and everyone I know who drives with me is similarly terrified, and rightly so. If you knew me at all in high school, you know that I was a notoriously shitty driver and came very close to failing my driver’s ed class, and at one point I even made a left turn into the WRONG LANE into ONCOMING TRAFFIC and screamed and covered my face with my hands. Which is what I like to call defensive driving. Or whatever is the opposite of that.

I don’t know how I graduated high school. At least in college you can take courses that pertain to what you’re actually good at. In high school, there were so many subjects I had to take that I just did not understand and did not excel in. I didn’t understand most subjects, come to think of it. Except for English, which was my saving grace. I was great at English. And Spanish, I guess. And Oral Comm. And everything else, well…not so much. When I was good, I was really, really good, and when I was bad…people almost died.

pretty certain I actually said this at one point

4. My baby is turning two this month. I’m not really even ready to fully process how quickly my sweet girl is growing up. She’s got 16 years left with mommy before she grows up and leaves me forever, and I can’t even think about it or else I’ll start to ugly-cry:

way worse than this

Sunrise, sunset, am I right?

By the way, have you ever really listened to the lyrics from that song? From Fiddler on the Roof? Because, if you have children, just don’t. That song wrecks me. Parenthood has ruined everything. We played that song at my wedding at one point during the ceremony and I got a kick out of how many adults were dabbing at their eyes and sniffling loudly. Pussies. NOW I AM THE PUSSY. My little sweet girl is so big. And how is this the same child that used to be the size of a bread loaf? And what? And how? How does that happen? How does that happen so fast? And how do I make it stop?

5. We’ve all been battling really awful colds in the Wisniewski household lately. I slept almost the entire day on Saturday and only roused from hibernation when I had to nurse Henry. Henry now has the same cold I’ve got, and I’m trying to stay calm and assure myself that the reason he’s sleeping so much during the day lately is indeed because of his cold and not because his shunt malfunctioned. Half of parenthood is wishing your kid would sleep, and the other half is wanting him to wake up because you miss him and want to play. Or you’re aching and you need to nurse. Or you’re terrified that his hydrocephalus is going to eat into his brain. Whichever. Fingers crossed that I’m just being a paranoid mommy and nothing is actually wrong.

At least he’s sleeping through the night, anyway.

6. There is a little brown nugget on my floor that I’m pretty sure is a turd. I’m just going to ignore it until it’s time to vacuum. Good plan.

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.

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