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
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Another ultrasound, and how we’re doing

When we went in for another ultrasound, three weeks to the day that we had our 20-week fetal scan and learned about Henry’s Spina Bifida, the nurse commented that my heart rate was elevated. “Yeah,” I said. “After what happened last time, can you blame me?”

She couldn’t.

We went in the ultrasound room and I laid on the table. Surprisingly, despite the mild anxiety, I was feeling really good. We were all in pretty good spirits. The big shock of his diagnosis had already pretty much been absorbed, so if they had more bad news for us, I think we figured it couldn’t be any more shocking or devastating than what we had already heard. And to boot, I was excited to see my baby. With June I got one fetal scan — that’s what happens with “normal” babies. I got to see her once, and then not again until after she was born. In the interim, I really missed my baby. I wanted to get to know her. And while it was devastating that Henry wasn’t “normal,” I was (and am) still thankful that I can get to know him better while he’s in there. Seeing his features on the ultrasound never gets old — his little nose, his fat cheeks. It just never, ever gets old. So I laid back and drank it in, while the ultrasound tech took her measurements.

Understand that up until now, the word “paralyzed” had been thrown around quite a few times, both from the Maternal Fetal Medicine specialist and my regular OB. At my OB’s office, I asked about Henry’s clubbed feet, unsure about the term and too chicken to search for it on Google Images. Does clubbed feet mean that his feet are bent inward? I asked. Or are they all mangled and shaped like clubs? I pictured his feet like the end of a chicken drumstick — just hobbled and, well, like a club. My OB smiled and said sadly, Well, does it really matter? He’s not going to be able to walk. He’s paralyzed. Oh. Right.

So imagine my surprise when we see his tiny face, his enormous Sleestak eyes, his heartbeat, his stomach, and then finally his lower body — his upper legs — and they’re kicking. Not substantially. But they’re moving.

I am notorious for not being able to see a damn thing on these ultrasound screens. I have to take my husband’s word for it that Henry is a boy (“Definitely a boy,” the technician says, whatever that means.) because I can’t make out anything on that screen. Lou assures me that looking at his male anatomy is like looking at the silhouette of the Washington Monument, but I just can’t see it. So when I looked at the screen and I think that I saw Henry move his legs, I waited for quite a few minutes to ask the technician, because surely I was seeing something else. I knew if I asked whether his legs were moving, she would give me a look like, oh, poor thing, and tell me No, sweetie. Remember? He’s paralyzed.

But damned if it didn’t look like his legs were really moving. So I risked looking dumb and just asked: “Those things that are moving … are those … his legs?”

“Yup,” she said, not even taking her eyes off the screen.

UM HOLY SHIT, I wanted to say. Instead I said, “He’s kicking his legs? Those things right there?”

“Yup,” she said, “looks like he’s kicking a little bit.”

UM WELL HOLY SHIT, I thought, BECAUSE WE THOUGHT HE WAS DEFINITELY, DEFINITELY PARALYZED BUT YOU’RE ALL A BUNCH OF LIARS I GUESS, NO BIG DEAL. Instead of saying that, I just stared at my husband, and he stared back at me.

The MFM specialist was equally unimpressed when he came in and the technician told him that she had observed movement in his lower body. “Well, good!” He said, not taking his eyes off the screen. “That’s good news.”

Yeah, it’s MIRACULOUS NEWS, I wanted to say. But again, I didn’t. I was too shocked. Stunned. Speechless. Thank you, thank you, thank you God, he’s kicking his legs! He might not need a wheelchair after all!

Of course — he could become paralyzed later, given the fact that his spinal membranes are exposed to the amniotic fluid, and that can cause nerve damage over time. That’s a reality we’ll have to accept when we come face-to-face with it — but not today. As of today, he’s been healed. We’ve been given a reprieve — a big one — and today, Henry is able to kick. It might sound corny, but it’s obvious to me now that God is writing this story — not the doctors. The doctors can only interpret what they see, but they don’t have the final say. And that’s reassuring and terrifying, at the same time, in a way. I don’t know how this is going to end. I don’t know what we’ll see on the next ultrasound screen. But I know for sure that when it comes to Henry, none of us are in charge.

Like my husband says, Henry has a few tricks in that spinal sack of his. And we’re just going to have to wait to see what he shows us.

***


Other than the MIRACLE we experienced last week, we’re living day-to-day, doing well for the most part, but mainly just doing okay. I still have these bursts where I’m incredibly optimistic and excited, and even if Henry turns out to be paralyzed, I know we’ve got all these amazing resources and relatives and doctors, and we’re going to be okay. We’re going to give him the best life possible. Other times, I just feel waves of anger — or what more accurately feels like annoyance. It strikes at the weirdest times — I’ll see an ad for Bud Light Lime (a delicious, delicious beer), and I think oooh, too bad I’m pregnant, I want one of those! And then I think, well why don’t I just have one? What’s even the point of trying to be healthy anymore? You do all these things for your baby, hoping for the best possible outcome — you take prenatals, even though they taste like fish and make you gag. You visit with your doctor, you write down all your questions and you give up SUSHI and BEER and you check — you CHECK OBSESSIVELY — everything you eat to make sure it has iron and folic acid, because you don’t want to take a chance — even the slightest chance — that your baby’s health will be negatively affected. And then you go to the doctor and find out something like this happened, some weird chromosomal fluke, and what was the point of taking vitamins again? To prevent something like this? It makes you just want to throw up your hands and give up. Have a beer. Because you tried to do everything right and you failed somehow anyway. What’s the point of even trying?

It’s hard for me to look at nutrition labels anymore. In the first trimester, I’d eat TONS of vitamin-fortified cereals (one of the few things I could stomach with the morning sickness) and read the back of the box and feel relieved — I was eating shit with 100% of all the important daily nutrients — not bowls and bowls of leafy spinach, but I did what I could, given how shitty I felt. And I gulped down 2-3 bottles of Ensure every day, and took a freaking prenatal and a folic acid supplement, for God’s sake. And I felt satisfied knowing that I was doing what I could do — barring periods of sickness where I could only eat potatoes, if anything at all — to help Henry grow and develop properly. And now I look at the Ensure bottle and think, fuck you, Ensure. I was drinking like three of you a day, back when I first got pregnant. 25% folate, my ass. You were supposed to do something, and you failed. I failed. Fuck off with your calcium and your B12, because what good is it if my kid can’t move his legs? Even prenatals are hard to choke down anymore — not because the fishy taste makes me gag, but because I feel majorly, majorly betrayed whenever I look at the bottle. Fuck you, prenatals. I thought you were supposed to prevent this.

Clearly, I am still working through the grief. and I’m trying not to let it affect how I interact with my other, healthy child. A few weeks after we got Henry’s diagnosis, I noticed that I was becoming obsessed with June’s verbal development. She just turned 17 months, and she does this thing where she’ll point or act out words, instead of really saying them. Right after Henry’s diagnosis, this really started to freak me out, badly. Our conversations, if you could call them that, would go like this:

Me: June, can you say “ball”?
June: [points to ball]
Me: Good! Can you say “ball”?
June: [sneaky look]
Me: Ball?
June: No.
Me: Ball?
June: Yeeesh.
Me: Ball?
June: Buh.
Me: Ball? Ba-a-a-a-llll?
June: [crawls away]
Me: [sobbing] OH MY GOD, I KNEW IT, YOU’RE RETARDED.

And inevitably it would end with me crying and searching WebMD to see what was wrong with her. Because clearly SOMETHING WAS WRONG WITH HER. I mean, I already failed my other baby, and he’s not even out of the womb yet. Surely I’ve failed this other child, in some way or another.

(By the way, June can say around 15 fairly-understandable words right now, not including the signs she knows and the little gestures she uses to act out what she’s trying to say. According to several of my mom friends and WebMD [we haven’t had her 18-month checkup yet], she is completely on par as far as verbal and physical development. There are NO red flags. And yet, the doubt is there. The grief, the anger, and the anxiety — they’re all there. Every day.)

So, that’s how it is. We’re excited. We’re still grieving. We’re still hopeful. We’re looking forward to him. We’re dreading him. It just depends on the day.

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.