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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“I smell an agenda…” You bet your balls you do.

One of my favorite sites, Sociological Images, shared one of my blog posts on their facebook and twitter pages this week.

To say I “fangirled” would be an understatement. I was all, whaaaaat?! CHYEAH! I LOVE THEM! They shared my stupid blog post?! They called it a “fabulous satire”?! BRB GONNA DIE OF HAPPINESS NOW!!!! 

(I’ve noticed that two things make me downright giddy, by the way — eating sushi, and being syndicated by a respectable publication. In the past month, my blog posts have been picked up by the Huffington Post (twice!!!), The Mighty, and MamaHealth. Someday I’ll write a piece for the New York Times and I’ll be scarfing down a big-ass Firecracker Roll as it goes live. That’s the world I want to live in.)

I have a vice, though. I gotta admit. I read the comments when my articles are shared, in whatever context. Twitter, Facebook, Pinterest. I really want to not do this, but I’m half-curious and half-thinking that it might be a good idea to read some constructive criticism (ha). Anyway. I’ve read a fair share of snarky comments about my writing, and it doesn’t bother me. But one comment last night, on the blog post that Sociological Imaged shared — it bothered me.

“I smell an agenda here,” someone said. 

I don’t know why it bothered me. But she was absolutely correct. I do have an agenda.

You smell that? It’s an agenda. And it STANKS.

First on my agenda is to write, because I like writing. I try not to do it and it doesn’t work. I just keep coming back to the keyboard. Two years ago I gave in. Fuck it. I’ll write because I can’t not write. And whoever wants to join me is welcome to.

But my other agenda? I want to change the way we talk about disability in this culture.

I am not an expert on sociology, or language, or (least of all) people with special needs. All I know is that every day since we learned Henry would have spina bifida, we were conditioned to think the worst about his diagnosis. We were advised to terminate, by more than one person, seemingly because a life with spina bifida is so terrible that it’s better to not live it at all. Can you comprehend that? There is such a disconnect between the beautiful children I see who happen to have a disability, and the sorry, deformed, faceless nobodies that our culture makes them out to be. And the disconnect didn’t hit me — not really — until right after Henry was born.

I was holding him, actually, when I got the phone call. It was a nurse from some county office, wanting to let us know that, because of Henry’s condition, we qualified for food stamps and other assistance (which we declined).

“I’m calling,” she said, her voice dripping with sympathy, “because we hear you’ve had an adverse birth outcome.”

What? I thought. He died? And then I realized she was talking about Henry. What the shit? I mean, he’s got some issues, sure. But adverse? A “birth outcome”?

The thing about defining moments is that you don’t really realize they’re defining at the time. My response wasn’t one of righteous indignation. I didn’t deliver some Sorkin-esque speech. I said “Wow. Uh, no?” And then I laughed. Because it was ridiculous. I wasn’t mad, don’t get me wrong — I’m sure she was a very nice woman who was tasked with having a very uncomfortable conversation with a hormonal, post-partum stranger. I get that. But damn if what she said didn’t knock my socks off. So that’s how you see them, I realized. That’s how you see my baby.

Let’s stop with all the bullshiz. People with disabilities are people. They aren’t inspirations or heroes, necessarilybut they aren’t outcomes either. They’re endowed by our Creator with human dignity, by virtue of their status as human beings.

Yes, we should keep them. We should cherish them. We should change the way we think about them, and the way we talk about them. That’s my agenda. That’s where I’m going. And whoever wants to come along is welcome to.

A Fifteen-Month-Old in a full leg cast: How it’s going

In a word? Splendidly.

Remember last week when I wrote a post about Henry’s casting situation, and how it was going to be sooooo harrrrrd, you guys?! (Well, I mean, it is going to be longer and more costly than we anticipated, and we are going to have to drive up to Park Ridge a lot, and that’s gonna be expensive). BUT. Happily, to my surprise, Henry doesn’t even seem to notice that he has a cast on.

HALLELUJAH PRAISE THE LORD

So far, Henry has been able to crawl/scoot anywhere he wants. To my sheer and utter amazement, he really hasn’t been slowed down much, if at all. He plays with all the same toys. He enjoys the same level of mobility. He seemingly hasn’t been in any pain.

I hesitate to say this, given that we’ve only had this cast on for a week, but this might just be an enormous blessing in disguise. I was a little deflated when I heard that the doctor couldn’t cast both feet at once. But Henry (and the rest of us) would have been nowhere near as happy and mobile had he been in two leg casts instead of one.

(Would it be too self-centered to say that I think there’s a pattern in my life — of God taking seemingly unsurmountable difficulties and turning them into huge blessings? Who knew, when Lou told me that Henry couldn’t have both legs casted, that it might actually be easier for us in some ways? BAM. Huge blessing. Who knew the horrific morning sickness and debilitating anxiety that accompanied my first pregnancy would result in my beautiful little girl? Who would have thought that my “problem pregnancy” would turn into this snuggly, ropy-poly little blonde fatty who gives hugs and kisses all day? Like God dropping a little love-bomb straight from heaven. Next time something crappy happens to us, I’m just gonna sit back and wait for the blessings to start rolling in. As they inevitably will.)

The challenge now is finding activities that don’t soil or dampen his cast, and that’s easier said than done. Chalk? Gets all over his body and inside his bandages, along with the dirt and gravel from the driveway where we’re coloring. Same with paint. Putting a plastic bag over the cast is an option, but since he likes to crawl, he drags his gimp-leg around on the pavement and the pavement rips into the bag and exposes the cast. So the splash park is out. So far we’ve been playing in the sandbox, taking some walks, and watching TV. It’s frustrating to take him out since he insists on crawling around on the floor (and by “insists” I mean shrieks like a falcon until one or both of us comply with his demands) and we can’t always let him, depending on the floor surface. All this to say, any ideas are welcome for toddler activities that are dry, don’t involve mess, and won’t compromise his bandages. There’s only so many times I can stick him in his high-chair and have him play with Jello.

Thoughts? Suggestions? They’re more than welcome.

 

Bifin’ Ain’t Easy: The Surgery Edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wonder

 

The drive up to see Henry’s specialists is a long one, and most of the time we need to wrassle everyone in the car and hit the road before the sun’s even come up. Clinic days start promptly at nine. We leave the house at six-thirty to avoid rush hour traffic, we drive 90 minutes (if we’re lucky) up to Park Ridge, and by the time we find parking and grab a muffin for June, it’s time to report to the radiology lab for Henry’s pre-admission ultrasound. By 9, I’m exhausted and we’re usually only still in the waiting room. Clinic days are a doozy.

Every clinic day is different, but we’ve developed something of a tradition. Every time we go to the Spina Bifida clinic, I swing by Starbucks, purchase a big-ass iced chai latte, and pull out Natalie Merchant’s Tiger Lily CD that my husband purchased at Half Price Books last year (it’s always in our car because seriously? Have you heard it? That album is great). I turn on the second track and drive into the sunrise with this song on blast. I even throw in a fist-pump or two if it’s not too early.

I love her songs. I was eight when that album came out, so it reminds me of early fall afternoons as a third grader, watching episodes of Pop Up Video and eating fruit roll-ups while I struggled to do my math homework.

I blast that shit.

“Too noisy!” June hollers from the backseat, but mama don’t care. There’s one song in particular that I have to hear.

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing 

Maybe it’s too on-the-nose. Mama don’t care. I had heard this song before in the third grade, and it was catchy, and I’m pretty sure the Pop Up Video version made my afternoon, but when I listened to it after Henry was born the entire world melted away and I grabbed my noise-cancelling headphones and blasted it because I was hearing it all for the first time. This is our anthem. And what more appropriate place to listen to it when we travel back to the place where we were first told our little boy would never walk?

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

I adore this song and it resonates in my bones more than any Haas/Haugen song at Sunday Mass. It’s become our anthem. This child will be able. This child will not suffer. He will make his way. It might not be the same way everyone else travels, but dammit, he will make his way.

And it’s haunting — if I could go back in time and tell my old self anything, I would do exactly what Destiny is doing in this song. I would laugh. At the cluelessness of the doctors. In anticipation of our joy. I would whisper in my own ear — he will be able. He will be gifted. He will make his own way. You have no idea. 

I was accused a few months ago of lying. The specifics are unimportant, but basically I got into it with a bunch of strangers in an Internet combox who were asserting that a life with spina bifida is miserable, horrible, and that abortion would be a much preferable alternative. Needless to say, I disagreed. Others chimed in, saying that spina bifida was “incompatible with life” and that I was “minimizing” Henry’s “suffering.” Obviously, spina bifida was awful, and I had no earthly idea what I was talking about. Man. I’m the worst!

Is it difficult, this road we’re driving down together? Yeah. It is. And I want to write more about the difficulties we’ve faced — as a family unit, as a married couple — because sugar-coating our journey ain’t gonna help anybody. My marriage has scars, and I won’t pretend that it doesn’t.

But isn’t that what’s great about wonder? It’s a feeling of surprise, mixed with admiration. We are living this life. We’re walking down this difficult road together, our spina bifida journey. And I fully expected when we got the diagnosis — in all my ignorance — that it would be nothing but hardship and constant misery. And it’s just not. And I’m surprised. And I laugh. He is able. He’s not perfect. None of us are. But we’re able. And we’re making our own way.

And this boy? My smiley boy? So worth it.

I wouldn’t trade this fabulous life of ours, this sometimes-daunting road we’re walking down together. We’re making our own way — with love, patience, and faith. And I wouldn’t trade it for all the gold in Gringotts.

An Open Letter to Judgey McJudgerson about the iPad Potty

Dear Judgey McJudgerson,

This is the picture you shared on Facebook today. You were shocked. Aghast. Horrified. Can you believe it? There are some parents (lazy jerks, I bet) who actually use these things to get their child to use the potty. I mean, just look at this thing. What’s next? Those levitating chairs from Wall-E?! It’s sick, I tell you. SICK.

Your judgey friends chimed in as well:

“That’s so disturbing.” 

“This is only for lazy parents. I would sit next to the potty and read my daughter BOOKS when we were potty-training!” 

“Wow…really? Ever heard of INTERACTING with your child instead of plopping him down in front of a SCREEN?!” 

“Whatever happened to small treats, like a sticker or a cookie? I guess I’m just old-fashioned that way!” 

“What has our society BECOME??!” 

Judgey, let me introduce you to my son.

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I know, he’s unfairly cute. Try not to stare.

Henry has Spina bifida. In about a year, we will begin something called a bowel program for him. Henry has no bowel control. I know, I know what you’re thinking: What baby does have bowel control? That’s what I thought for a long time, anyway.

You know when babies crawl around on the floor, and then they stop what they’re doing, their faces turn red, and they strain VERY OBVIOUSLY to push something out? And that “something” turns out to be poop? Those babies can control their bowels.

For Henry, he poops (and pees) pretty much all day long. It just comes right out. No straining, no pushing. No notice at all, actually, and we’re not sure how much he’s even able to feel down there. Regardless, he can’t control his bowel movements. Poop just pops out of him randomly. (Which, let me tell you, makes me feel like a super shitty parent, no pun intended. People have been known to pick up Henry, wrinkle their noses, and hand him back to me — oops, a poopy diaper! Mommy must not have realized! What they don’t know is that I just got done changing a poopy diaper five minutes ago. And ten minutes before that. And thirty minutes before that. Kids with Spina bifida tend to have lots of really bad diaper rash — is it any surprise?)

So. My point. In a year or so, we’ll have to start a bowel program for this guy, in order to keep him “socially continent.” This means that we’ll perform something called an enema, either once a day or every 48 hours or so, that completely flushes out his bowels so he won’t poop at all during the day. This will allow him to be around other kids and other parents without being the “stinky one.” Great, right?

Here’s what you don’t know about enemas: Kids who get enemas — which is most of the kids who have spina bifida or any kind of spinal cord damage — have to sit on the potty for a long, long time. Much longer, in fact, than a child with typical bowel control. Enemas flush out a lot of poop, so they take a while to work. Kids who use enemas for their bowel program can sit on the potty for forty-five, sixty, or sometimes even upwards of ninety minutes.

Judgey, when was the last time you had to get your toddler to do anything for upwards of ninety minutes? 

Will we purchase this iPad toilet? That remains to be seen.

But, Judgey, you better believe that if this thing gets my son to sit on the toilet for ninety minutes, I’m going to purchase the hell out of it. And I won’t be one bit sorry.

Know what I think? This thing is freaking great. It’s a masterpiece. Potty training is hard, with a bowel program or without, and whatever keeps your kid socially continent and potty-trained before they go to kindergarten, I’m all for.

And you know what else? I’m just gonna say it. All types of parents buy these kinds of things for their kid. Maybe they have a child who is fully potty-trained EXCEPT for poop, and getting her to sit still and poop in the toilet for more than thirty seconds is an impossibility without some screen time (I have one of those children). Maybe they have a kid with really bad sensory issues, and they need some hardcore distraction because poop just feels weird. Or maybe their kid just won’t sit still and kindergarten is fast approaching and they’ll try anything because they’re desperate.

My point, Judgey, is that there are millions of different kinds of people, and there are millions of different ways of parenting. You’ve appointed yourself the Official Worrier of Other People’s Children and Society In General, and you’ve decreed it a crime against humanity to use one of these things to toilet train, because technology will rot their brains!. And relationships will suffer. And WON’T SOMEONE PLEASE THINK OF THE CHILDREN?!?!. But if you step outside of your self-righteous little bubble, maybe you could learn to appreciate a parent whose kid hasn’t potty-trained as easily as yours. And maybe instead of judgment, you can offer compassion. Or understanding.

Or maybe just mind your own freaking business.

 

 

No love,

Wifeytini

A letter to myself, one year after our diagnosis

This is a repost. I deleted the old one because I couldn’t get the formatting to work. I’m a sub-par mommy blogger, you guys. 

Henry, fresh outta the womb. So plump, fuzzy, and pink -- just like a little piglet.

Henry, fresh outta the womb. So plump, fuzzy, and pink — just like a little piglet.

 

One year ago, on November 7th, I thought my life was over.

I remember that day in bits and pieces — but the pieces I do remember are sharp. We had gone in for an anatomy scan, to learn the baby’s sex. We bided our time in the waiting room with the other mothers, giddy, debating the different reasons why we thought it would be a boy or a girl. We made bets. We shook on them. I can’t remember any of them now.

The nurse called us in and Lou carried June back into the ultrasound room. It was dark and cool. The nurse squirted some goo on my belly and our son popped up on the TV screen. In high-definition, no less. We all stared, in awe, while the tech took measurements. Every so often I’d blurt out, Do you see that? That’s his face! Do you see his little face? Is that a penis? That’s a penis right there, right? Pretty sure that’s a penis. Definitely a penis, I said, trying to get the ultrasound tech to check the sex.

And then the doctor walked in. Shook our hands. Stared at the screen intently and sighed. And then. And then. The most agonizing moment of my life. Had the doctor burst through the door and roundhouse kicked me in the neck, I could not have been more stunned. And hurt.

 

Our son, he told us, had a defect called Spina Bifida. Something was wrong. Something had not formed properly. Fluid on the brain. Malformation. No cerebellum. Increase of stillbirth by a factor of five. Prematurity. C-section. Clubbed feet. We don’t know. We don’t know. There’s no way of knowing. Over and over, the bad news just kept coming. It crashed over us. By the end of his spiel, I almost couldn’t breathe.

I didn’t want to terminate, per se — but I definitely wanted to be un-pregnant. Somehow. I bit my tongue, almost asking can I try again? Can I get a do-over? Can we fix this? Simultaneously, I seethed at the staff, smoldering with a protective fury. Just dare mention termination to me, I thought, just try. I felt like jumping off the table, ready to fight anyone who would suggest I abort — but at the same time feeling weak and wanting immediately to be done being pregnant. To have this go away. I remember feeling weighted down, weak and hot, sweaty and starting to shake, hopelessly trapped because I couldn’t run from the “problem” — the “problem” was inside of me. It was inescapable. Inevitable. I felt doomed.

OMFG I CANNOT HANDLE THE CUTENESS.

OMFG I CANNOT HANDLE THE CUTENESS.

Here’s what I would say to myself if I could go back: Your life is over. It’s over in the best possible way. The life you had is done, and the person you were is dead. And it’s an immeasurable blessing.

You’re stronger now. Words like shunt and hydrocephalus used to cause you physical pain. Now you throw them around like you’re talking about what to cook for dinner. Just the thought of leaving your baby in someone else’s care — a doctor’s, a babysitters — used to set you on edge. Now you have a month in the NICU under your belt, and you have a new confidence and respect for nurses and doctors, because you’ve seen the miracles they can work. You can delegate. Do what you gotta do, you say to them, instead of peppering them with questions and wringing your hands in terror. Instead of crying and thinking I’m supposed to CATHETERIZE a baby? How the hell is that going to happen?, you just do it, like a boss, on the changing table in the bathroom of a Barnes and Noble, and move on with your day. You don’t think to yourself anymore how will I ever possible handle all of this? Because you’ve handled it. You’ve walked through hell already. You’ve survived. You know that there are going to be other “worst days of my life” in the years ahead. But you also know that you have a resovoir of inner strength that is deep and wide, and you’re a fighter.

You’re also weaker. When you hear of a mom whose kid was in the NICU, your heart drops in your stomach. You ache right along with her. The smell of antimicrobial hand soap brings tears to your eyes — it reminds you of the NICU. You wince when you see videos of yourself in the days leading up to the ultrasound, because you were so happy in those pictures and had no idea how badly you were going to be hurt. You see kids running around on a playground and you cringe — your stomach knots in on itself. Who will Henry play with, you wonder, when all the other kids want to run around? Will he be stuck in his wheelchair, by himself? When you see pictures of children in other countries who have Spina Bifida — children who don’t have the same access to medical care, kids who, unthinkably, have no mommy to speak for them — the pain you have for those children is so real, so visceral, and so sharp, it takes your breath away. You feel pain differently. You hurt more. You’re wounded.

So yeah, in a way, your life is over. Because you’re not the same person. Your soul, your mind — everything has changed. Even your body boasts a new and impressive scar, still red and angry-looking, a vertical grin across your pelvis. But would you go back, if you had the chance, and give any of it up? Would you ask the doctor for a “do over”? Would you try to fix it?

 

Hell to the no.

You’re stronger than you ever thought possible. You’re more resilient than you had ever imagined. You’re older, wiser, and much less likely to take things — especially health — for granted. You’re a better person, because of this child, because of this so-called defect, than you ever would have been without him.

And the best part, is that you get to be a mother to this new, round, squishy little person. You get to fall in love with someone all over again. You get to delight in his husky little boy voice, his babbling, his cooing, the geewwwww he makes when he doesn’t want to eat his baby cereal, the little frowny face he makes before he starts to cry, the soft tufts of his hair, his fat, impossibly smooth cheeks. You get to be gifted with a million of these little pleasures, these fleeting moments, day after day, for as long as God allows him to be in your life.

What a joy, what a gift. Thank you, God. Not only for this precious person, but for this new mother I’ve become.

I would not go back and make it “better.” I would not trade it for anything.