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.

Pediatrician visit

I’m not a disciplined writer. I just write when I have the compulsion. It comes and goes like motion sickness. I’ll be sitting on the couch and it will just come up in a glut, like vomit, and I’ll have to run to my computer to get all the words out. Sick.

We went to the pediatrician on Saturday and they did the whole well-child thing for both the kids, back-to-back. The doctor did a once-over on Henry and checked in his mouth told me he wasn’t teething when he very obviously is. Then he moved onto June. The doctor checked her ears, and her eyes, and down her throat, and then her chest.

And her chest.
And her chest.
and her chest.

And he checked it for what seemed like forever.

What I was doing, in the meantime.

I closed my eyes and started saying Hail Marys. Oh there BETTER not be a problem, God, I kept thinking. I kept making eyes at Lou, who was calmly and comfortably sitting next to me, and he reached out and squeezed my elbow, not understanding or not acknowleging how long the doctor was taking to examine her chest. And when the doctor motioned to June to lay down on mommy’s lap while he listened to her heart more, I felt the familiar wave of anxiety and hot sickness like on the day that we went in for a fun little gender reveal ultrasound and got hit with a mack truck that is Spina Bifida Myelomeningocele.

I fall into this little trap sometimes where I think that because I had a child with a neural tube defect and we endured one month in the NICU and countless other problems, I’ve already gone through the worst thing that can happen to me, and therefore I’m immune from all other bad things that could happen. Like the chickenpox. I also fall into this trap where I jump immediately to the worst possible conclusion — probably a defense mechanism of some sort. Or just rampant anxiety. I can’t watch Monsters Inside Me or Dr G: Medical Examiner for precisely this reason — I’ll start to get convinced that every slight headache is a horde of maggot larvae hatching in my brain, or something. So when the doctor hovered over her chest and listened, and listened, and then made her lay on my lap and listened again, and again, I went from thinking hmm, he’s awfully thorough to welp, better call the Make-A-Wish foundation. 

We’ve had a rough year. A rough, rough year. Henry’s diagnosis. My grandpap dying. Mental health problems. The NICU. A new family member. A mild car wreck. This nurse called us up and told us we qualify for food stamps, for the love of God, and then called my precious boy an adverse outcome. So when the doctor checked June’s chest and frowned slightly, I closed my eyes and thought are you FUCKING kidding me right now, God? 

I’m not proud to say that my first reaction was one of utter anger and disbelief. On the outside, of course, I was completely stoic. I’m great in a crisis. I can shut down and deal with the situation at hand and stave off an emotional collapse for a long, long time. So I asked detailed questions and didn’t lose my cool. But on the inside I was fuming. I alternated violently between thinking, Thank you, God, for our health, for these children; we are so blessed. You’ve blessed us immeasurably. Whatever the outcome of this, thank You, thank You for these children. And then in the next minute I’d think, you know, God, I haven’t had dinner yet, and maybe you should take me out to dinner first before you FUCK ME. Are you kidding me right now? These children are my life. Why are you doing this to me? I already have one ‘sick’ child. You cannot do this to me again. YOU JUST CAN’T. 

And I do realize how selfish and disgusting I sound, thanks. Because really, with Henry’s Spina Bifida, it’s tempting to think of our family as this wretched gang of Dickensian street urchins that has been, as of late, anyway, really down on their luck. In reality though, we have it pretty great. In reality, Henry is pretty much just like any other four-month-old, which is extraordinary considering he’s developmentally more like THREE months old, and he was a month premature, and he has this whole hydrocephalus and spina bifida thing going on. But he’s really awesome. And he seriously has the best attitude of any baby I’ve ever met — perpetually happy, talkative, social, smiley. And really, we have had far more than our share of blessings: a steady paycheck, excellent health insurance, a roof over our heads. Lou and I are blessed with an awesome marriage and there’s not a day that goes by — not one day, since the start of our relationship six years ago — that he doesn’t squeeze my hand and say thank you for being my best friend, and my wife for life. (This dude has been calling me his wife since the first month we started dating, I swear.)  I mean, we’re ridiculously spoiled. But that doesn’t protect me against the stabbing fear in my stomach when the doctor lingers a little too long over my precious baby’s chest and knits his eyebrows together. It doesn’t shield me from this rush of terror and anxiety and absolute anger. I spent the rest of the day simmering in a silent fury, wanting to punch God in his stupid face, wanting him to come down and explain Himself and just what the hell He means by scaring me like this and wanting to tell Him that there better not be anything wrong with my baby. Better not. Or else. OR ELSE. Pretty intimidating, I know.

So, the doctor finally stopped listening, at which point I was almost in tears, and said that what he heard was a slight heart murmur, and that he was referring us to a cardiologist. Cool. Except not.

To be honest, I want to be all

but then I’m like nevermind, Jesus, you’re a terrible driver. You’re driving me right into a panic attack.

Prayers, please, that it’s totally nothing?

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.

The Bombshell: Our Son has Spina Bifida

“We are never so defenseless against suffering as when we love.” ~Sigmund Freud

In retrospect, we both feel so foolish. For us, the twenty week ultrasound was solely to find out if we were having a boy or a girl. We never imagined we’d get any other kind of news. We never imagined we’d get bad news.

So there we were: Me, on the table, in the ultrasound room, beaming from ear to ear because I get to actually see the little guy squirming around inside of me. I can see him on the screen. It never gets old. It’s amazing. I keep beaming at my husband and saying, “Are you seeing this? Did you see that?” There’s actually a little person inside me. We can see his weird, black, alien eyes right there on the screen. It’s incredible.

The doctor walks in and shakes my hand. He looks at the screen pretty casually and says, “Who was your nurse earlier for your intake exam?” I tell him her name, and he shouts out the door for her to come in. Ooh, I think. Maybe she wrote something wrong in my chart. She’s going to get it. This might be fun to watch. 

The nurse comes in the room and stands behind the doctor and the doctor looks on the screen again.

Then:

Your baby has a neural tube defect called Spina Bifida. Do you see that little sac sticking out of his lower spine? That is where the spinal cord hasn’t properly fused together, and his membranes are sticking out of his back.”

I remember shooting a horrified look at my husband. We just stare at each other while the rest of the room falls away. The only thing I can feel is a warm wave of anxiety slowly crawling over me, from my toes all the way up to the top of my skull. That’s what happens every time I get bad news. It’s a precursor to a panic attack, usually — this tingling, warm sensation. And then I feel nothing. Numbness. Lou is standing next to me trying to hold one of my hands. He has to pry it out from under my head, where it’s resting, because I’m just too stunned to move. All I do is stare at him, stare at him. Stare at the screen, the baby. Stare at the doctor.

The doctor is speaking in medical terms, explaining how the spine hasn’t fused, and I’m barely hearing a thing he says. He says one word I understand, though: hydrocephalus. For a terrifying, agonizing moment, I think oh god, is that the one where the baby doesn’t have a brain? Is my baby missing his brain? And then I remember: Hydro. Water. There’s water on the brain. He has a brain. Anencephaly is the one without a brain. So there’s that small consolation, at least. I’m trying to think back to child development class, to the social work classes I took in college. I have heard spina bifida probably a dozen times in my life, but I cannot remember what it means.

“What does this mean, though?” I keep asking. “Like, practically.” I look from him to the nurse to the ultrasound tech, who all stare back at me in sympathy. I get that his spine hasn’t fused. I understand that there’s water on his brain. But, practically, I don’t know what this means for us at all. Is he going to be in a wheelchair? Is he going to be mentally retarded? Will he be born blind, deaf — what? Stupidly, I ask, “Should I buy him clothes?” Meaning, of course, should I even get my hopes up? Is he even going to live that long? 

“I wouldn’t be worrying about clothes,” the doctor says, not knowing what the hell I’m talking about. He goes on to describe the fetal anatomy and he says, “You can also see on the screen here that he’s got clubbed feet.”

“Jesus Christ,” I say, looking at my husband. “What else does he have? Like a second head? Four arms? What else is there?”

The ultrasound tech hands me a box of Kleenex, which is my clue that this is really, really serious news — this is not something that can be undone, or that will correct itself in utero. This shit is permanent. Finally, a lightbulb pops on in my head. I ask the doctor, “Is this something he’s going to be dealing with the rest of his life?”

The doctor looks at me sadly. “Yes,” he says.

I think, okay. Well, that’s some information I know what to do with. 

The doctor keeps talking, and I just keep nodding. Like they’re telling me about the weather. He says, “I can’t even see the cerebellum,” and I go, “Oh, yeah. Mmm.” like I know exactly what he’s talking about and I’m only very distantly, clinically interested. Meanwhile, Lou is actually concerned about me — I’ve forgotten that I’m even in this room. There’s only the baby on the screen. He wants to know if my health is at risk. He wants to know what the risks are for me. The doctor says there really aren’t any. Like I even care, at this point. I just want to know if the baby is even going to survive. Will he just die in a couple weeks, or what? What I’m really asking is, should I even bother to get attached? He tells me that the risk of stillbirth is increased by a factor of five. But that’s not to say that the baby won’t survive.

Additionally, we’re told, the baby may not make it to term, depending on how well he’s doing when we’re monitoring him. The doctor wants me to have an ultrasound every three weeks, and then at the end of the pregnancy, every week. When the baby is born, if he even survives to term, he is going to need two operations right off the bat: surgery on his back so they can shove the spinal membranes back in his body, and another surgery where they place a shunt in his head to drain the spinal fluid, which will be in place for the rest of his life. On top of all this, the doctor tells me I will need to deliver at a hospital in Park Ridge, since it has a neonatal surgery unit. I will also need a c-section. C-section might seem like the very least of my problems — and truly, it is, because the thought of my baby being operated on and potentially not surviving is just the worst possible thing ever, period, end of story — but for someone who developed PTSD the last time I had surgery, it is definitely still a concern.

“Is it the zoloft I’m taking?” I ask. “What did I do?”

“Nothing. Nothing. It is not zoloft-related,” the doctor says. “You did nothing wrong.”

The ultrasound tech takes some more pictures, and then tells us we are expecting a little boy. An afterthought. It’s the least surprising news of the day, actually. We’ve even picked out a name for him — Henry. I find out days later that St. Henry is the patron saint of handicapped people, which makes me want to laugh and cry at the same time. They all leave the room for a minute to see if they can page my OB, and I sit up and wipe the ultrasound goo off my belly. My husband hands me his water bottle and his hands are shaking. I think I’m crying but I can’t really feel it.

Mercifully, “termination” isn’t discussed. I read in the ultrasound notes later that the doctor just didn’t want to bring it up, and he wanted my OB let me know that it was an option. Our obstetrician is a godsend, and thankfully, she knew us well enough that “termination” or “changing the course of the pregnancy” or any such palatable term would never, ever be an option for us. It is, however, an option that exists for us to consider. It’s chilling how subjective a person’s humanity is, isn’t it? Not to get all “lifey” on you, but hey, that’s the reality we’re face-to-face with right now, as parents: If we decide Henry is worth saving (or more accurately, if I decide Henry is worth saving), doctors will move heaven and earth to save him. But if I decide on a whim that this is all just too much trouble, they could refer me up to Northwestern tomorrow and have him wrenched out of me and left to die — at twenty weeks gestation. It’s mind-boggling, isn’t it? I mean, killing someone due to his physiology, his anatomy, his perceived defects — isn’t that able-ism? Discrimination? Genocide? Because it fits those definitions exactly. And it’s all so … encouraged. How do these doctors think of my baby? How does society think of my baby, for that matter? Is he a little boy with Spina Bifida, or is he my property to do away with as I please? Which?

Thankfully, every single person with whom we have shared Henry’s diagnosis has been nothing but loving, encouraging, and supportive of our child. So I’ll get off my soapbox, or whatever, but to clear the air: Henry is our precious son, and we will fight for the best quality of life possible, no matter how long he is with us. Killing him is not an option. He deserves dignity, respect, and care by virtue of his humanity, regardless of his physical ability, mental cognition, race, economic status, or any other qualifying factor.

 

The doctor asks if we have any questions. “Um, no, not really,” I say, because my mind has gone totally blank. “Yes, about a million,” my husband says, and the doctors nod sympathetically. That is the answer they can understand. If my husband weren’t holding my hand I think I would just float off the exam table and disappear.  They hand us an informational packet on Spina Bifida that clarifies literally nothing, and we wander out of the waiting room and outside to our car. We put June down for a nap as soon as we get home, and then we both crawl into bed and hide under the covers.

For three days after that, I was the walking dead. I cried at everything. We found out a week ago, last Wednesday, and Sunday was really the first day I felt as though I was coming back to life.

Right now, I am still dealing with the emotional aftermath of our baby’s diagnosis. I don’t feel like I’m a complete zombie any more, but I still have moments where the prospect of raising a special-needs child is so daunting I feel like I’m going to pass out. It hits me in little ways, too: When I see June toddling around the house, it’s a knife in the heart to know that Henry won’t be able to do the same thing. When June rolls over and sits up in her crib, I wonder if that’s even going to be possible for Henry, since as far as we know, his legs are paralyzed. It’s even hard to look at pictures of June as a newborn, because I know we’re not going to have that same joyous homecoming — Henry will likely be in the NICU for a few weeks following his surgery, and I’ll be up in Park Ridge recovering from major surgery. Now, I’m vascillating between being optimistic and almost excited to meet my son, just so I can see what kind of challenges we’re in store for. I think, hey, maybe he’ll be relatively normal, like Walt Jr. from Breaking Bad, or Forrest from Forrest Gump. And we’ll be able to like, actually talk and have a relationship and I won’t have to stay up nights wondering how he’ll possibly care for himself when I’m gone. He can be self-sufficient, and inspire other people — and I can help him through everything. He’s going to be kick ass! 

totally me and future-Henry


And then in the next breath, I’m more like this:

What a paradox it is to love and desperately want this little boy, and in the same moment wish that this had never happened: That his spine had fused, that I had known something was wrong, that there was something I could have done. Part of me doesn’t even want to get more attached, because to love someone means to suffer, and if my love for June is any indication, I’m going to suffer so much for this child. And suffering blows. As a Catholic, we know that suffering draws us closer to God and is essential to our salvation; it is gifted to us and modeled beautifully by our savior. So in the Catholic worldview, suffering is a blessing. Suffering makes me cling to Jesus in a way that I never could have otherwise. But can I just say that suffering blows and I hate it? In 2009, when I went to India and read the reflections of St. Therese, I was stuck by her love of suffering, because it drew her closer to the Lord. She actually thanked God for suffering, and so LIKE AN IDIOT I began to pray for suffering myself. God, let me suffer something, I said, so that I can be a saint. So that I can focus on You and only You. And then a week later I got a kidney stone and was like, Nevermind, God, this sucks! I don’t want to be a saint. Changed my mind! Thanks, though! Enough suffering! 

I don’t do suffering well. I don’t want to love this little boy and then have to face the possibility that he won’t survive gestation, or surgery, or some secondary infection. I think about seeing my precious baby, a little boy that will undoubtedly look like my precious husband, hooked up to wires and tubes and my entire body aches. I think about having a c-section and I want to puke. This whole thing is such a gift. If I can use this experience to encourage another mom with a special-needs child, I would feel truly, truly lucky — not to mention the gift that is Henry himself. And at the same time, it sucks. It sucks so hard. I don’t want to suffer. I don’t want to see my child operated on. I don’t want to have surgery when I can hardly handle a routine pelvic exam. I keep thinking, SERIOUSLY, GOD? When June went to the hospital in May for a stomach flu, I cried the ENTIRE way to the hospital. I was shaking, thinking something was seriously wrong. I had to pop two xanaxes and hold on to my husband to keep from running out of the triage room. I sobbed throughout the entire made-for-tv movie about Celine Dion because it was “just so inspiring.” Do you have any idea what a NICU stay and Spina Bifida is going to do to me? Do you think maybe you picked the completely wrong person to go through all of this? 

“Neeeear, faaaaaar, whereeeever you aarrrre”…somebody please CHANGE THE CHANNEL

So that’s where I am right now. Suffering, sort of. With a lot more suffering to come. And I wasn’t even praying for it this time.

Battle Hymn of the Elephant Mother

Things that are new around these here parts:

1.Non-fiction. I’m on a huge non-fiction kick lately, and I’m getting so much reading done ever since I gave up Facebook for Lent. I just read Amy Chua’s Battle Hymn of the Tiger Mother and it is intense. It is exactly like this sterotypical Asian meme, except it’s written by a woman and these things actually happened in real life.

Amy Chua is seriously scary, and I love it. Her book basically is about the difference between Chinese mothers and American mothers, and how American mothers are soft and permissive, and Chinese mothers produce smart and capable children because they’re not afraid to tell it like it is. Chua herself has two exceptional daughters who are musical prodigies and attend Ivy league schools, probably because she would chinese-water-torture them if they didn’t practice for hours a day (is that racist?). I’m not going to lie, parts of the book had me cheering for her, and parts of it had me cringing in horror on behalf of her kids. In this one scene her daughters made her homemade birthday cards and Chua tossed the cards back in the girls’ faces and told them to get back to her when they had a real present to give her. OWNED! I mean, the girls probably didn’t have time to go buy her a present, considering how they were forced to practice violin for six hours every day, but still! You tell ’em, Amy!

How do you get to Carnegie Hall? CHILD ABUSE

I’m going to write a book called Battle Hymn of the Elephant Mother because I’ve got 10 pounds of baby weight to lose, and if my kid ever mouthed off to me I’d probably just swat at it with my giant trunk and lumber off in search of food.

2. Whining. June is a delight lately. She’s been taking naps like a champion, and is just generally a bright, cheery little girl. Or, you know, whatever is the opposite of that.

Lately, she’s turned into a huge whiner. About everything. Whenever she wants to be picked up, she whines. Whenever a toy is not doing what she wants, she whines. And of course, if I’m not near her at all times, or if any one of her zillion toys is obstructing her view of me, she whines. And God help me if I have to leave the room for a split second. Girlfriend is NOT having it.

Her reaction.

At first I was like, you don’t own me, baby! Dobby is a free elf! And then I couldn’t stand one more second of whining so I picked her up and just did whatever she told me to do. When I have to pee I just take her into the bathroom with me, and she stops whining and just stares at me, and believe it or not, that makes it really hard to go. Awkward!

Oh, but that whine. THAT WHINE. I’ll do anything to avoid it. Including pee while she’s watching me. Or try to.

Makes me want to go back to the newborn stage.

Almost.

Sickness. June is still sick. I don’t know if it’s a cold, or allergies, or maybe even teething, but whatever she’s got is making her irritable and congested, and she’s got this cough that is giving me grey hair.
I phoned the on-call nurse at our Pediatrician’s office, and she told me if it was a “barking cough” then they’d need to see the baby right away. Right away? RIGHT AWAY?! You’re supposed to laugh me off the phone and tell me what a silly first-time mom I’m being! So, panicked, I had my husband come home early and we took her immediately to the doctor and I had tears in my eyes as I recounted the awful, horrible, probably-pertussis-like barking cough she was emitting the night before.

The exchange with the doctor went like this:

Dr: So you say it’s a barking cough?
Me: Yes, it is!
Dr: What kind of bark?
Me: Like…a harsh…like…you know…a bark.
Dr. Like a dog bark? Or a seal bark?
Me: Well, I don’t know the animal…it just sounded like a barking noise.
Dr. Well if it’s croup or bronchitis it’s going to sound like a seal bark. A dog bark just means she has congestion.

My reaction.

Well, shit. Apparently your run-of-the-mill barking cough isn’t dangerous, but a seal barking cough is what you need to look out for. I should have asked him if he meant a wild seal or like a circus seal. A leopard seal or a harbor seal? Surely we can diagnose this if we just pinpoint the right animal.

So anyway, her lungs are “clear” according to the doctor, even though she still has a barking, phlegmy cough and I’m starting to suspect it’s allergies. At least it’s not pertussis. Probably.

3. Increased Mobility. My tiny little girl has gone from sitting quietly on the floor like this

to now licking things, picking toys up and throwing them, and trying to pull herself up with some disastrous results. And she’s starting to get into things now. I looked away for one second yestereay and when I looked back at her she was eating a baby wipe. I probably should have calmly taken it out of her mouth but instead I screeched like she was on fire, tore the wipe out of her hands, and scrubbed out her mouth with the edge of my shirt. The other day she also tried to hoist herself up on a standing toy, and then fell and conked her head when the toy gave out from under her, not unlike Miss Blankenship beefing it on Mad Men:

That was my reaction too, Peggy.

So pretty much at this rate I’m going to have a heart attack, with all the things she’s not supposed to be eating and the concussions she’s probably getting as she learns how to crawl and stand. Seriously, she falls down and cries at least once a day, and it’s starting to fray my nerves.

4. Baby-moon. Despite the whining/crying/teething issue we’ve got over here, I’m enjoying June so much more than I did when she was a yowling, formless infant. I think I actually like her now. And that’s quite a relief because when I had an infant and people would mention the term “baby moon,” I had no idea what they were talking about.

Apparently a “babymoon” is the time after birth when you and your husband and your new baby get to know each other and just bask in each other’s love or something. I got the impression that it’s supposed to be this peaceful, glorious time where you revel in your baby and in each other, a lot like the self-absoprtion you and your spouse would experience during your honeymoon. So evidently, having a new baby is supposed to be like your honeymoon.

Really? Really? Hold on imma let you finish but a “baby-moon” is nothing like a honeymoon. I remember my honeymoon and it didn’t involve leaking breast milk onto my adult diapers and crying because I couldn’t remember what day it was. So either I didn’t have the whole “baby-moon” thing when she was an infant, or I was too exhausted to notice it.

Furthermore, the love you have for your husband (like on your honeymoon) and the love you have for your baby are just two vastly different things. I am in love with my husband. I’m obsessed with my baby. Sometimes I just stare at her. Or I smell her. Yesterday in the car she was starting to fuss because her hat had drifted down over her eyes and she couldn’t see, so I reached back with one hand and popped the hat off her head. Without thinking, I put it to my face and inhaled — like a crack junkie.

I haven’t held the baby in ten whole minutes!

You are consumed by your baby — so much so that your baby can shoot diarrhea all over you and your only response will be “Oopsie! That’s okay!” Which is very unlike “honeymoon love” unless you and your honey are involved in a disturbing level of enmeshment. (I can’t say that I love June more than my husband, but I will say that if my husband ever sprayed poop on me I’d throw him under a bus.) You’re so obsessed you start missing her when she sleeps — even if you’ve been praying for her to sleep for hours. You will sneak in her room to watch her sleep and then the floor creaks and she wakes up but you’re not overly upset about it because that means you get to rock her back to sleep and secretly that’s what you wanted to do anyway.

What’s that, June? You want to wake up and play with mommy?



Now, though, “baby-moon” is a different story. She is hilarious and making all sorts of cute sounds and faces, and now I catch myself sighing and swooning over her. Maybe this is the baby-moon, now that I can finally catch my breath and sleep for more than two hours at a time and I’m able to actually enjoy her.

I’m the baby, gotta love me!

Look at her, can you blame me? How can I not enjoy that face?

Oh, it is love.