Romper

What No One Says About The Moment You Find Out Your Baby Is "Sick"

Courtesy of Ceilidhe Wynn

I like to make lists. When I cook, I like to follow the recipe exactly. My books are shelved alphabetically and then by date of publication. There is a very specific type of way to fold the laundry and put the utensils in the dishwasher, and my partner does neither of them correctly. I like order, organization, and control — not in every aspect of my life, but in most. In a way, my penchant for organization made me perfect for pregnancy because when you're pregnant you're given a list of things to do — by your doctor, your friends, your midwife, complete strangers, and on every website. A recipe to follow and in 10 months, you'll have cooked yourself a perfectly healthy little baby. But for me, that couldn't have been further from the truth.

During my pregnancy, I found out that my daughter had agenesis of the corpus callosum — a potentially devastating birth defect — and suddenly, all of that planning and meticulous rule following meant nothing. I couldn't tell anymore what I'd done right or wrong. All I had were the worries and fears in my head; the little things I might have done to somehow harm my baby. But what no one says when you find out your baby is sick is that you realize, loud and clear, how much the little things just don't matter.

All I could think was, My daughter was born without a part of her brain. Who cares if she sucks her thumb as long as it makes her happy?
Courtesy of Ceilidhe Wynn

When I first found out I was expecting, I followed that recipe for making a perfectly healthy baby  — with a few substitutions, because I am human and maybe a little imperfect. I allowed myself a bite of soft cheese. I used the heated seats because our city is so cold in the winter. When I was too sick to eat anything but the most white-floured carbs, I did, and hoped my pre-natal vitamins did their supplemental job. Then, at my 28-week ultrasound, my partner and I received the devastating news of our daughter's diagnosis.

The corpus callosum is a structure in the center of the brain that allows the left and right hemispheres to communicate. If it's absent, it can cause cognitive and developmental delays. But there was no way of knowing if our daughter would have them or what they would be. I was terrified, devastated, and guilty. I had trouble making it through the following days without crying. I continued to worry and fear and obsess throughout my pregnancy until I no longer knew the difference between the big, important stuff and the small, simple things. Because when you're faced with questions like will she have seizures? will she be able to walk? talk? recognize me? breathe on her own?, worrying about whether her clothes were made from organic cotton or if she'd like an orthodontic nipple on her pacifier just feels like nonsense. I couldn't separate what was important from the rest of all the worrisome noise.

All the little things I'd obsessed over before, all the things I thought made me a good mom or a bad mom, didn't matter anymore. All of it was background noise compared to whether or not I could provide a resounding yes to one very simple question: Was she happy and safe?

Perspective didn't come to me immediately. It wasn't until I received some well-intentioned, if not unsolicited, advice from a friend's mother that it finally clicked. After our daughter was born, she cried a lot. We did like most parents and tried to soothe her with a pacifier (to absolutely no avail), but she seemed to enjoy sucking on her hand, so we let her. When my friend's mom told us we shouldn't let her do that, I smiled and nodded, but the whole time all I could think was, My daughter was born without a part of her brain. Who cares if she sucks her thumb as long as it makes her happy?

Courtesy of Ceilidhe Wynn

And that was it: my inspiration, my moment of clarity. The moment when I finally understood that all the little things I'd obsessed over before, all the things I thought made me a good mom or a bad mom, didn't matter anymore. All of it was background noise compared to whether or not I could provide a resounding yes to one very simple question: Was she happy and safe?

During my pregnancy I'd let my obsession with the little things get in the way of the bigger picture. I know now that eating a piece of soft cheese did not cause my daughter's ACC. There was nothing I could have done to prevent it. So, it never really mattered what I'd done while I was pregnant, nor did it matter how I had to deliver her. And in the end, I didn't have control over any of it anyway. Vaginal birth or c-section, induction or naturally, all of these were the little things I thought I should control that ended up being entirely unimportant.

After a pregnancy clouded by unknowns, the simple fact that my baby was finally in my arms felt like a miracle. I had been given a second chance to do what I hadn't done before, to focus on what was truly important. That she was here and she was mine and I loved her.

Allowing myself to let go of those little things that seemed so big before felt like taking my first breath after being underwater. Now I allow my daughter to show me what she needs and I strike a balance with what I need rather than trying to fit her or us into a routine that somehow makes me a better parent. It means that sometimes she uses a pacifier and sometimes she sucks her thumb, but as long as she feels comforted I am happy. Sometimes she wears color-coordinated outfits and sometimes she does not, but as long as she is comfortable I am happy. Sometimes my partner still has to remind that babies don't always sleep or eat as much as we think they should, but as long as she feels safe and happy, then so are we.

I am not thankful for her agenesis, of course, but I can be thankful for the perspective it has offered me.
Courtesy of Ceilidhe Wynn

I spend less time worrying when she will reach her next milestone or if she has gotten enough sleep or if I pumped enough breast milk. Instead, I try to enjoy all the fun that her most recent achievements create. When we meet another baby who might surpass her developmentally, I allow myself to worry on it for a second and then I remind myself that just because one child is further along doesn't necessarily mean that our daughter is falling behind. And even if she one day does start to fall behind, I hope I'll be able to cut us both a little slack. Every day, she learns and develops and becomes her own person without a piece of her brain. When I think about all the things that I can't do with my whole brain I am in absolute awe of what she can do with hers.

I'm not sure I'll ever be able to say I'm thankful for my daughter's ACC, but it has changed our lives for the better. It has taught me to love her for the person she is and to love her in a fierce, fundamental way that I feel deep down the pit of my stomach with every single breath. I am not thankful for her agenesis, of course, but I can be thankful for the perspective it has offered me. Because without it, I'm not sure I would've realized the freedoms I have as her mom. I'm allowed to make mistakes, to be human, to do things differently than other women might, to accept that what works for me might not work for everyone else. I am allowed to break the rules. If my daughter had been born according to the plan, I'm not sure I would have allowed myself to let things go as easily if my daughter's brain had been "normal."

Courtesy of Ceilidhe Wynn

I know that I was able to come to these realizations from a privileged place. The nature of my daughter's diagnosis means that we don't know when, if, or how her development will be affected by her agenesis. But so far, everything has been so, so good. She is healthy and smart, cheeky and stubborn. Maybe if things were different, I would feel differently. But for now, I know that when I found out my daughter was "sick," I found out that the most important thing to me — the only thing — is the smile on the face of a little girl I love so completely. Everything else is just background noise.