Maybe I caused it. Maybe I didn’t. Here’s why that doesn’t matter.

October means it’s Spina Bifida awareness month, so that means everyone and their mom is up in arms about prevention. If you follow any Spina Bifida-affiliated organization, then you’re totally gonna get an earful this month about folic acid and how SB is totes preventable if you JUST TAKE FOLIC ACID FOR THE LOVE OF CHRIST. (Sara from Ernie Bufflo does an excellent job of explaining why that isn’t always the case, and how SB prevention often gets in the way of serving the people who are already here.)

I don’t talk much about prevention on this blog, because it’s totally irrelevant to us and a majority of the people who read this. Like Sara said, we’ve got SB, and it’s not going anywhere. It’s part of who Henry is, and no amount of folic acid is going to change that. It’s not really something I talk about, because it’s not really something that affects us now. But I’ll talk about it today.

One thing that saddens me greatly during October (and, to be honest, every other month. But particularly October because the push for “awareness” and “prevention” is so high) is the scores of mothers on our SB support groups who admit to feeling haunted: “Could I have prevented this?” They ask. “Was it my fault because I waited to take prenatals once I found out I was pregnant, instead of before?” My friend Mary Evelyn echoes this, and she wrote a post this morning about folic acid and guilt that ought to be mandatory reading for every newly-diagnosed parent.

 

 

My heart goes out to these women completely, because I’m among their ranks — Did I cause this? Did I not take enough folic acid? Truthfully, I don’t think about it often, but I do think about it some. And I’ll admit that while most of the time it’s not something I concern myself with, during my worst moments (and we all have those, right? Those wow-I-suck-I’m-a-terrible-mother-and-human-being-moments?) I believe beyond a shadow of a doubt that I’m the one who caused his defect:

We waited only a year between pregnancies, and I was breastfeeding June when we conceived. (Who knows — maybe she sucked all the nutrition out of me?)

I’m chronically anemic (I have been my entire life), which goes hand in hand with folate deficiency (which I didn’t know at the time).

I ate pretty much nothing but baked potatoes and Panera soup during my first trimester (but I’m gonna go ahead and blame the baby on this one. If he wanted me to eat tons of folate-rich spinach, he shouldn’t have made me throw up every time I ate anything.)

– Here’s something that really haunts me — something I’ve come to accept and make my peace with, though it still lashes out at me in my worst moments. The minute I found out I was pregnant with Henry, I remembered how agonized I was after June’s delivery. During the pushing stage, I think I pulled just about every muscle in my body trying to get her out, and I was so woefully out of shape it took me weeks to recover from childbirth. So right after my positive pregnancy test, I went out every morning with June and took her for a walk in the stroller. In mid-July. In ninety degree weather. It was hot as balls, but I thought I was getting healthy for him. I knew vaguely that high body temperatures (hyperthermia) increases your risk of neural tube defects like spina bifida, but I took that to mean no hot showers or electric blankets, which I stayed away from religiously. I didn’t think that meant I couldn’t exercise. I thought I was doing a good thing.

Does that cover it? The millions of ways I could have given my son spina bifida? I took prenatals, by the way. I even took a folic acid supplement — more than the standard recommended dose. And another thing I loved to eat when I was pregnant was Total cereal — which is fortified with folate and has 100 percent of the recommended dose. So who knows — maybe it wasn’t folate deficiency. Maybe I didn’t wait long enough between pregnancies — a known reason that Latina women are in a high risk category for neural tube defects (Latina women tend to have more babies and space them closer than any other population). Maybe it was the fact that my dumb ass went out every single morning during my first trimester and sweated my balls off, determined to get in shape for his delivery, raising my body temperature to potentially unsafe levels.

Maybe I caused it. Maybe it was my fault. Maybe. I’ll never know.

Now let me tell you why none of that matters.

Being a mother has always been of utmost importance to me. We waited about five seconds after we were married to start trying to get pregnant, and four months later we were pregnant with June. When June was just a year old, we both got a strong urge to try again for another. We were in a good place financially — paying off our debts, saving a good amount. Lou had a steady job. June was an incredibly easy baby, who we thought could benefit from having a sibling. There was nothing stopping us. So we tried again, for Henry.

The funny thing about trying for Henry was that I knew I would be having Henry. Henry was the only baby name we could agree on, boy or girl, and I strongly suspected that when we got pregnant, we’d be having a boy (boys run in the family, on both sides). Right after June’s birthday (at the end of June), I heard a small voice in my ear. You’re fertile now, it said. If you want to get pregnant this month, you’re running out of time to try. So we tried.

(Only one other time have I ever heard this small nagging voice in my ear. In college, Lou and I were spending a lot of time together, getting to know each other, but not yet dating. I remember sitting in a Political Science class one day and hearing, out of the blue, someone telling me that if you date this person, he’ll be the last person you ever date. Writing that seems creepy, though, like he was going to murder me or something.)

I tell you, the minute he was conceived, I knew we were pregnant. I knew it “took,” on the very first try. And for weeks afterward, I took pregnancy test after pregnancy test, knowing we had conceived him, but not getting a positive result. Finally, on July 17th, we got one. Pregnant. On the first try. With Henry. Bam. Henry, whose namesake we now know, is the patron saint of disabled people.

My point is this: I was always meant to have this child. He was always Henry, and he was always mine, which takes the sting out a little bit when I think of maybe how I could have caused his defect. Whether I “caused” it or whether it was just a totally random happenstance, it doesn’t really matter to me any more. Because he was always Henry. He’s always had a special purpose. He was always mine, from before he was conceived, and I think the significance of his namesake points to the fact that he was always going to be disabled, and that he would use that disability for the glory of God. To help other people, somehow, in some way, that were disabled like him.

Maybe it was my fault. I don’t care anymore. He’s here. He was always supposed to be here. He gives my life purpose and joy, and that overrides the guilt I have any day of the week. If I gave him spina bifida because I took long walks in the heat for my first trimester, then that lands me among the ranks of parents who totally screwed up their kids by trying to do good by them. And I can live with that.

Like Mary Evelyn said so poetically, I’m moving on. I’m letting go. I’m thanking God for the gift that is my child.

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And as Jesus passed by, He saw a man who was blind from his birth. His disciples asked Him, “Rabbi, who has sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9: 1-3

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Childbirth sucks balls but it cured my PTSD

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

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

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

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

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

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

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

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

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

“Fuuuuuuuuck this!”

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

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

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

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

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

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

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

He obliged.

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

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

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

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

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

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

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

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

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

It was finished; we were safe.

I haven’t had a panic attack since.

 

If healthy pregnancies were treated like special needs pregnancies

Mr. and Mrs. Johnson, good afternoon. I’m Doctor Dumas, a visiting obstetrician in Doctor Kwak’s practice. It’s nice to meet you.

Look, there’s no easy way to say this, so at the risk of sounding blunt, I have some bad news.

The technician and I reviewed your scans and we found that you’re about ten weeks along with a human fetus. I’m not seeing any abnormalities as far as growth or bone and organ structure, but you’re very clearly pregnant with a human baby. In all likelihood, you’ll carry the baby for another thirty weeks until your amniotic sac ruptures and the baby exits your body vaginally. In some cases, your baby will be extracted via cesarean section. Either mode carries its own set of risks and is extremely painful. We’re so very sorry.

Your baby will be born, unless you suffer a miscarriage or stillbirth. After his birth, he will live, and then he will die. He will live until he dies. I’m sorry to say that life is terminal. The fatality rate for human beings is 100 percent. If he survives past birth, you’d just be living on borrowed time.

How long does he have? We’re not sure. Humans typically live until their mid-seventies, depending on where they’re born and a variety of other factors. But many die at age 5, or 15, or 30. We can’t predict with any certainty how long he has, but we know that death is an inevitability. You probably have a history of death in your family.

We’re also sad to say that your child has cancer. Well, not right now, but statistically it’s possible. You’re carrying a human child, and fourteen thousand of them every single year get some kind of cancer. In fact, the second leading cause of death between kids ages 5-14 is cancer. This is second only to unintentional accidents like a gun misfiring or some sort of collision. So if your baby doesn’t die in a car wreck first, I’m afraid there’s a chance he’ll get cancer. I’m so sorry.

If by some chance we prolong his life until age 15, the odds don’t look good then either. It’s not totally hopeless — I mean, never say never, right? — but teen mortality rates are climbing. There’s always a risk of car accidents, overdose, and particularly suicide. The suicide rate is particularly troublesome. I’m a numbers man, so I’ll give it to you straight: Thirty three thousand teenagers committed suicide in 2006. And being born is the leading cause of eventually committing suicide.

I know you have a lot to think about. Just try to breathe. There are a lot of options. It’s important to take care of yourself first, and your marriage. Children are a big contributor to divorce. Almost forty percent of divorced people have children at one point. Suicide, cancer, divorce … if the baby survives birth, you’d be bringing him into a pretty questionable environment. You’ve got problems coming at him from all angles. Multiple problems. Quality of life is important to consider.

This is the part of my job I hate. I can only imagine how shocking and upsetting this is for you. Unfortunately, we have even more difficult news. Your Chorionic Villus Sampling test came back with some red flags. Our tests indicate that you’re very likely having  a boy. This occurs typically in half of all pregnancies, and nobody really knows why. We know the Y chromosome plays a part, and we know the father is the carrier.

These things just happen.

Risks? Well, males typically have higher testosterone, which could lead to anger issues. They’re more likely to abuse alcohol and much more likely to rape. Something like 90 percent of all homicide offenders are men, and the vast majority of inmates in the penal system are men as well.

You have a 1 in 2 chance of having another boy, should you choose to get pregnant again. You could also try for a girl, but there are risks involved with a girl as well. Girls are much more likely to be raped and make up the vast majority of sex-related homicides. 100 percent of people who die in childbirth are women. Women are less likely to commit suicide and rape other people, but they’re infinitely more likely to die of ovarian and breast cancer. There are significant risks, whatever you do. I’m afraid it’s inescapable.

Well, you have a lot of options. You can take your chances, or you can terminate. I can’t make that decision for you, but I will say that terminating now will let you start the healing process that much sooner. It’s early in the pregnancy, and it would probably be easier to do it now rather than wait twenty five years to see if he turns out to be a rapist.

On the bright side, he could be worse. Your baby is caucasian. Black children are three times more likely to grow up in poverty, and black men are twenty times more likely to be sent to prison than white men. The outcome is just very poor for people of color. I wouldn’t wish that on anybody. Just be grateful he isn’t a girl. Or black. Or a black girl, God forbid.

So. Talk it over. You two have a lot to discuss.

 

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.

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.