Courtesy of Ceilidhe Wynn

I'm Glad My Daughter Doesn't Look "Sick," & I Hate Myself For That

By
Share
Ad failed to load

As parents, we feel so many different types of guilt. The I-Have-To-Go-Back-To-Work guilt. The I-Was-Too-Busy-Looking-At-My-Phone-When-You-Rolled-Over-For-The-First-Time guilt. And my personal favorite, the completely unwarranted and uncontrollable, Something-Happened-To-You-Outside-Of-My-Control-But-I-Still-Feel-Horrible-About-It guilt. When my daughter was diagnosed with four congenital birth defects at my 28-week ultrasound, I felt guilty at the thought that I'd somehow caused her disorders. When I worried about all of her birth defects and how different they might make her, I felt guilty for the ableism in my fears. But now that she is here and her prognosis is better than any of us expected, the type of guilt I feel is as surprising as it is destructive. I am so glad my daughter doesn't look "sick," and I hate myself for feeling this way. Although her birth defects are scary and their affects potentially devastating, she doesn't look sick, and I'm glad.

Our daughter has four disorders to contend with, but her first diagnosis was agenesis of the corpus callosum, a disorder where the nerve fibers that connect the right and left hemispheres of the brain failed to develop, obstructing her brain's ability to send messages back and forth. Characteristics of this disorder are vast, but not all encompassing, and can include: delays in reaching developmental milestones, like walking, talking, or potty training; poor motor skills; or difficulties with language and understanding sarcasm or subtleties. But she also lives with colpocephaly, neuronal migration disorder, and septo-optic dysplasia. All are instances where a part of her brain failed to develop fully or properly. Symptoms can range from more difficulties grasping language, to a non-verbal learning disability; seizures, ranging in severity; blindness, or difficulty seeing; impeded pituitary gland function, and more.

A part of me sees her potential symptoms as disabilities instead of differences or diversity. Not only does it make me a poor intersectional feminist, but it implies that I see some of my daughter's experiences as inferior simply because they will be different than my own. I've often wondered, what kind of mother thinks this way about her own child?
Ad failed to load
Courtesy of Ceilidhe Wynn

However, depending on the cause of these defects — like, a genetic glitch, or an underlying chromosomal abnormality, like Andermann syndrome or Aicardi syndrome — and how an individual's brain adapts to these defects, a person may experience all of these symptoms, some of them, or none at all. In fact, there are people walking around right now who have agenesis of the corpus callosum and don't know it because they've never experienced symptoms severe enough (or any at all) to alert parents or doctors to anything more. These people may only find out they've been walking around their whole life missing a piece of their brain because they needed an MRI for an unrelated reason.

For all this talk of her perfection, there may come a day when suddenly her miracle will end. A neuron may misfire and she might seize. For all her current cooing and babbling, she might not speak.
Ad failed to load

My daughter, however, is not one of those people. She will grow up knowing that, most likely because of an error in her genetic code, her brain will always be different. When I was pregnant, our doctors told us that we had no way of knowing how her disorders might affect her, which left us in a sort of limbo, waiting to see if once delivered we would have a "normal" baby or have NICUs and testing and surgeries to deal with. But for reasons we don't know, my daughter has never experienced any of these symptoms. Not one. Since her birth she's been asymptomatic. Family, friends, my partner, and I agree all that she is a kind of miracle; my little girl with her smile so big and her growth off the charts and her team of doctors who all say she is doing so well. One of them even said — and I swear I am not making this up — that she is perfect. I can't help but agree. She is "normal."

Courtesy of Ceilidhe Wynn
No matter how horrible it might make me, every time I hear another parent explain how their little one suffers because of these disorders or some other disease or condition, there is a part of me — a small, shameful part — who can't believe how thankful I am that it is not my daughter.
Ad failed to load

For all this talk of her current perfection, there may come a day when suddenly her miracle will end. A neuron may misfire and she might seize. For all her current cooing and babbling, she might not speak. Grasping abstract concepts might be difficult, making subjects like mathematics, languages, or science close to impossible for her once she reaches school age. She might be awkward and clumsy in a way that sets her apart from her peers. So many things might be different in a year, or two, or 10. It might happen tomorrow. It might never happen, but I can't help that little whisper of fear even when I realize how lucky we are right now. And I feel guilty for not appreciating how good we have it when I know it could be so much worse.

Courtesy of Ceilidhe Wynn

But to fear the day when all this good might turn bad admits an ableism in my thinking that, despite my activism and my fight for inclusion, I cannot shake. To fear the affects of her disorders acknowledges that I see something inherently wrong with them; that something needs to be fixed in her. It means that a part of me sees her potential symptoms as disabilities instead of differences or diversity. Not only does it make me a poor intersectional feminist, but it implies that I see some of my daughter's experiences as inferior simply because they will be different than my own. I've often wondered, what kind of mother thinks this way about her own child?

Ad failed to load

My last trimester of pregnancy was filled with doubt and fear and unknowns. A time I should've spent in joyful anticipation, I spent emotionally drowning in panic. I think that's when I created a little hole in my heart, a place where negativity and shame lived. A place where I believed I was responsible for my daughter's disorders no matter who told me differently. Where I kept my darkest thoughts and pressed labels and unrepeatable words onto her fragile, unborn skin. Where, yes, I felt disappointment that my daughter would be different.

Courtesy of Ceilidhe Wynn

I've read discussion boards filled with so many beautiful little babies who were born much worse off than my little girl. Boys and girls who will — definitively — never take their first steps. Little ones whose mothers will never hear them say, "Momma." They live from surgery to surgery. They take handfuls of medications to prevent daily seizures. And it is a stark and sobering reality that some of those beautiful little babies die. No matter how horrible it might make me, every time I hear another parent explain how their little one suffers because of these disorders or some other disease or condition, there is a part of me — a small, shameful part — who can't believe how thankful I am that it is not my daughter. And for that, I feel guilty.

Ad failed to load

The worst thing about guilt is that it is, at its best, unproductive, and at its worst, destructive. As my daughter approaches her first birthday, I decided I was ready to get off this carousel of feeling bad and then feeling bad for feeling bad. I cannot count the number of times I've asked myself: Why is her prognosis so good while others are not? What makes our family different? And I am not sure there is a better answer then: Just because it is. I am sure that feeling bad about my daughter's health won't improve another child's situation, and I know that feeling bad about feeling bad only makes me feel worse.

Now, however, I'm ready to fill that hole in with something infinitely more positive. I'm ready to exchange my guilt for gratitude. Because I am sure that no matter how poorly another ACC baby's health is, that baby's mother is just as grateful for her child as I am for my own.

To be honest, my partner and I don't know why my daughter is doing so well. Neither do our doctors. We don't know if one day she won't do so well anymore. Our lives are full of unknowns. I hope that, if the time comes, I'll remember that just because my daughter lives a different experience than my own, doing so doesn't make her worse or better. It just makes her different. And when that time comes — if it comes — I hope that I remember that different is OK. I hope I remember to ask for forgiveness from every mother in my shoes and to myself. I hope that, if my time comes, they will know how sorry I am that their baby suffered while mine didn't; how sorry I am for thinking thinking Thank God, it's not her. Because I've learned that, your baby or mine, we are all in this together; mothers of sick, healthy, and angel babies. And the only thing we are truly guilty of is loving our children so much it hurts.

Ad failed to load
Must Reads

6 Early Signs You're Going To Have A Short Labor, According To Experts

As far as I'm concerned, a short labor is right up there with winning the lottery in terms of lucky life events. (And when I was actually in labor, I would absolutely have traded a bucketful of lottery winnings for a speedier birth.) While some women…
By Kelly Mullen-McWilliams

Kids Will Love These TV Shows & Movies Coming To Netflix In March

You can always count on Netflix to keep it fresh: though there are already so many movies and shows to choose from, every month there's an influx of new content to keep your entire family entertained. As February enters its final weeks, it's time to …
By Megan Walsh

Here Are 10 Ways To Boost Your Baby's Immunity To The Flu

As I'm sure you've read in the thousands upon thousands of articles written about it this winter, the flu is spreading like wildfire and it's bad. Really bad. This strand of flu is the worst we've had in a very long time and it's the most widespread,…
By Abi Berwager Schreier

Khloé Kardashian Asked Twitter About Her Bump, & Moms Totally Delivered

Like her younger sister Kylie Jenner, Khloé Kardashian managed to keep most of her pregnancy a sort-of secret. But unlike Jenner, Kardashian chose to publicly announce her pregnancy several months before the baby's due date. While there's no wrong wa…
By Sophie Hirsh

21 Moms Share The Most Surprising Part About Having A C-Section

Honestly, I don't think we, as a culture, talk about C-sections nearly enough, especially considering so many mothers experience them. And because of a number of factors, the little we do talk about it always seems to be a familiar narrative: "It's n…
By Jamie Kenney

13 Yummy Instant Pot Recipes To Make Under 30 Minutes

An Instant Pot seems to be the must-have appliance in every kitchen these days. If you are anything like me and never knew the beauty of a Instant Pot, you are about to have your life changed. Basically, you put some ingredients into a pot, set the t…
By Kristin Manna

9 Things The First Six Months Of Motherhood Will Teach You About Your Baby

Personally, the first six months of motherhood was a mixed bag. I learned some harsh lessons about myself that made taking care of my baby seem overwhelming. For example, I was clueless, and no amount of research could help me feel like anything but …
By Steph Montgomery

11 Photos You *Must* Take During The Last Days Of Your Pregnancy

During my first pregnancy, I took a photo each week to document my growing belly. I stopped around 36 weeks, though. I hated how I looked in those pictures, and didn't think I'd want to relive those moments. I was wrong. My second pregnancy was a dum…
By Steph Montgomery

6 Red Flags To Definitely Look Out For After Your Baby Falls

The first time my infant son tried to take a few steps, he tumbled and bumped his head on the coffee table. My blood turned to ice in my veins and I froze. There truly isn't anything quite like the feeling a parent gets when their little one gets hur…
By Sarah Bunton

These 9 Instant Pot Recipes Will Make Even The Pickiest Eater Happy At The Table

Like any parent, I've had my share of parenting hits and misses, but one of my favorite "wins" is my daughter's diverse palate. I don't even know if I can take credit for it, but I would like to think I had something to do with her love for lentils, …
By Caroline Shannon-Karasik

Turns Out, Kim Kardashian's Favorite Mom Products Look A Lot Like Your Own Faves

Being a mom is really hard work, especially for the first few months, and Kim Kardashian West is no different in that regard. Now the mother of three, Kardashian says that there are a few products she just can't live without when it comes to raising …
By Abi Berwager Schreier

10 Things No One Tells You About Having A Baby In Your 30s

If you're like me, you evaluate the pros and cons of any major life decision. When my husband and I were considering starting a family, I thought about my career, education, and financial stability. I wanted to know how a pregnancy and childbirth wou…
By Steph Montgomery

Soda Might Hurt Your Fertility, Study Says, & Here's What You Can Do

Who doesn't love sugary drinks? I stopped drinking soda years ago, but I still love gulping down those fancy Starbucks coffee beverages. I don't have a big sweet tooth, but I am a sucker for sugar-sweetened beverages every now-and-then. Turns out, th…
By Annamarya Scaccia

5 Red Flags Your Toddler Isn't Eating Enough

Toddlers are notoriously picky eaters, at least in my experience. You offer mashed potatoes, they want french fries. You give them crackers, they scream for chips. It's frustrating, to be sure, but it's usually their way of vying for independence. It…
By Candace Ganger

35 Moms Share The Most Disgusting Things Their Husbands Do

I'm a human being who revels in challenges. I like when people present me with one, especially if they don't think I can meet or succeed it, and I like taking a challenge on, especially if it's unexpected. So when I aimed to uncover the most disgusti…
By Jamie Kenney

How Having Kids In Your 20s Affects You Later In Life

For parents, like myself, who had kids in their 20s, there are a number of questions that come to mind. When you're deciding what your future will look like, you'll likely consider what this means for your health, career, and more down the line. Thin…
By Tessa Shull

Study: Drinking Two Glasses Of Wine A Day Is Good For Your Mind — Here's Why

There’s more scientific proof that a daily drink or two isn't necessarily a bad thing and could have a place in an overall healthy lifestyle. A new study out of the University of Rochester Medical Center (URMC) in New York found that — in mice, at le…
By Tiffany Thomas

Research Says Eating Carbs Can Lead To A Healthy Pregnancy, So Bring On The Pasta

In the world of me, no food is better than bread. I know it's supposed to be pretty terrible for you, high in calories, low in protein, and full of that modern-day demon, gluten... but guys, it's really yummy. Especially warm out of the oven, when th…
By Jen McGuire

These Photos Of Prince George Then & Now Will Give You Serious Baby Fever

The Duke and Duchess of Cambridge are expecting their third child in Spring 2018. With all of the excitement surrounding the new baby, it's easy to forget all of the good times that have already passed. The couple's eldest is already well into the sc…
By Azure Hall

This Is, Hands Down, The *Grossest* Thing Babies Do Inside The Womb

Your baby's life in the womb may be safe and warm, but it's also kind of grody. Seriously, the whole process of growing into a human being includes more than a few icky moments along the way. But this is the grossest thing babies do inside the womb b…
By Lindsay E. Mack