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.
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.
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?
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.
|Nope. Sorry. Not happening.|
|SHUNTS ARE WEIRD LOOKING MY LIFE IS OVER|
|Just gonna research disability income JUUUUST KIDDING NOPE|
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|
You guys. YOU GUISE! I was nominated for a Sheenazing Award for Funniest Blog!
I’m totally not buying it — surely I was nominated as some kind of cruel joke, seeing as I’m up against Calah Alexander and Simcha Fischer, outstanding writers who routinely make me pee myself with laughter. But if you could make the clicky on this link and vote for “wifeytini” in the first category, I would be forever grateful.
* * *
In less exciting news, I’m in the third trimester, and I’m starting to feel like Precious. And to be perfectly honest, I haven’t really been wanting to update this blog. Between writing about my grandpap dying and Henry’s impending birth, I’m starting to think that every post I write has this woe-is-me vibe, and I don’t want to give the impression that I’m drowning in grief over having a handicapped kid. I’m really not. I don’t know if it’s denial, zoloft, the prayers that have been covering our family, or some combination of all three, but I feel so much peace about this little boy. Most of the time.
Truthfully though, there isn’t much to update about, and while we both feel strangely peaceful about Henry’s prognosis, we’re still cycling through the same old stages of grief, guilt, terror, optimism, and excitement. I’m ready to be done with the “wait-and-see” game and just dive into it, already, because anticipation is the worst. He could be mostly fully functional or he could be completely paralyzed and cognitively delayed. Or he could not survive his spinal surgery at all. Either way, I’m sick of waiting. I just want to meet this little guy and get to work on nurturing him to his fullest potential. In moments of excitement and optimism, I think of this quote by St. Joan of Arc and I feel PUMPED: “I am not afraid. God is with me, and I was born for this.” Fuck yes, Joan. That’s how I feel about Henry. There are definitely times when I’m sick with worry, but mostly I just want Henry to get here so we can start getting to know our boy and start kicking Spina Bifida’s ass. This is the baby I was given, and if he has to use a wheelchair, or he needs a one-on-one, or he needs special occupational therapy — well, are those really that horrible? It’s scary to think that I’ll probably have to catheterize a newborn … but once I learn how to do it, won’t it just become a normal part of life? Won’t things like loading up a wheelchair in our car and driving to different specialists just become totally commonplace after a while? That takes the sting of his disability away, for me at least, for the most part — knowing that waiting is the hardest part. Someday soon it won’t even be that scary, it’ll just be totally normal.
* * *
I’m finally at the point in pregnancy (32 weeks) where I can start looking forward to just being done already. It’s easy to forget, but pregnancy lasts a long-ass time. We’ve been anticipating this baby since JULY – basically forever ago. As much as I dread our NICU stay and my c-section, I am, however, completely ready to stop craving milk every single second of the day. And wear normal-sized shirts. And tie my shoes without getting winded. And drink wine. And beer. And spirits. And wine.
|My thoughts, at every waking moment|
And in addition to not carrying around 40 extra pounds and DRINKING ALL THE BEER, there’s also going to be this tiny little person with a round, smooshy little face who I’m going to completely fall in love with, and I can’t help but be really, really excited to finally meet him. Surprisingly, I kind of miss having a newborn. Then I remember that all I have to do to re-create the newborn stage is douse myself in milk, light my nipples on fire, and have someone punt me in the crotch. Not at all like those newborn stock photos you can find on any random photographer’s website:
|That’s sweet but no seriously you’ll never sleep again|
It’s more like this, if these things were honest:
|I had way too much fun photoshopping this.|
I’m starting to think that newborns are only something you can appreciate in retrospect.
* * *
Rhogam. So it turns out I don’t need a rhogam shot and I’ve never needed it. One of my first visits with my initial OB (my very first OB that I ended up firing, not the one that I have now and love), she insisted I get a rhogam shot because of the possibility baby June could be born with negative-type blood, and I could miscarry her since I had positive-type blood and so did Lou. At the time I thought nothing of it, but it turns out she made me get the rhogam shot because she wasn’t sure if Lou was really the father of my baby. She told us as much before she gave us the shot, but I thought surely there was another reason she wasn’t telling me. When I relayed to Henry’s Maternal Fetal Medicine specialist that my last OB insisted on a rhogam shot, he raised his eyebrows at me.
Doctor: “Don’t you have negative-type blood?”
Me: “Yeah, I’m O negative.”
Doc: “Mmmm.” [to Lou] “And what’s your blood type?”
Lou: “AB negative.”
Doc: “Well, then you don’t need rhogam. It’s impossible to have a baby with positive-type blood if both the parents are negative.”
Me: But … shouldn’t I have it anyway? I had to get it last time because my OB said she couldn’t prove the paternity of the baby, so it’s better to be safe than sorry.
So I guess I totally don’t need rhogam and my other OB sucked. I thought there must have been some other reason she wasn’t mentioning that I should take advantage of a rhogam shot, but apparently not. Don’t two negatives equal a positive, or something? Can’t a baby, like, inherit negative blood from somewhere else in the family? Does blood work like that?
Math. Science. Logic. They’re not my strong suit.
* * *
Lately I’ve been following the story of this family, whose eighth child, Dominic, was born with encephalocele and just successfully underwent major facial reconstruction surgery. Dominic’s miraculous story was featured in the Boston Globe yesterday, and oooh lawd. The comments. THE COMMENTS YOU GUYS. Someone actually called this boy an “error of nature.” LORD JESUS HELP ME. Someone actually wondered why one tiny boy deserves so much medical attention when the majority of the country can’t get access to “basic” health insurance. “Who pays for this?” one commenter asks angrily. “All the other folks on the same insurance plan who have to foot the outrageous bill for this kid.”
Dudes. Exactly what do you think health insurance is? THAT IS EXACTLY HOW INSURANCE IS SUPPOSED TO WORK. You’re sick, you get treatment. You need life-saving surgery, you get it. The cost is leveraged. This is a health insurance success story. But apparently it’s some miscarriage of justice when it actually works in favor of a sick little boy who would otherwise die without it. Apparently, according to these commentators, this is a tragedy which should have been “faced” (read: aborted) and the family should have “moved on.”
|“Honey, just take care of it. Then in a few years you can try again and have a real baby.”|
Between my pregnancy brain and my four hours of sleep, I can’t form a super-rational argument as to why exactly I think this line of thinking is barbaric, able-ist, and wrong, so I’m just gonna give it a big “AW HELLLL NO” and resolve that much harder to fighting for my own little “error of nature” who also needs expensive neonatal surgery, and who I’m sure these coldly utilitarian dickwads think should have just been tossed in the trash. I’m going to show these eugenic-loving assbutts that a life with a disability can still be a life of purpose and joy. Henry is here, and he’s here to stay. If anyone has a problem with that, you’re gonna have to go head-to-head with one extremely pissed off mama bear, and I promise it won’t be pretty.
Thank God — THANK GOD — our families have been nothing but supportive of us, and one hundred percent welcoming of baby Henry. The joy and love that they’ve expressed to us over this little boy is truly proof that good exists in this world, and that God has sent us guardian angels in the form of our friends and family members. Every prayer, every kind word, every card — we have felt it. And we are so grateful for it. And, frankly, it’s what renews my will to live after reading the drivel of these awful, awful commentators.
/rant. Someone is standing in front of me pointing to her diaper, so duty calls. Mama out.
“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.
“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.
When I first found out I was pregnant, my first reaction was to laugh. My husband was at work. Our NFP charts were showing several days of high temperatures, and I was starting to suspect that something was going on. I took a test and peed all over my hand. When I saw the test, I absolutely was not expecting to see a plus sign – but there it was. Positive. I said, “holy shit,” put my hand over my mouth, and started laughing hysterically.
|I studied Edvard Munch in a college art history class, and when my professor showed us The Scream, I almost had to leave the room. It looks exactly like how an anxiety attack feels — like you’re inside of a nightmare.|
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.
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.
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.
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.