To preface (because I love a good long-winded preface), the purpose of this post is two-fold.
1. To express and work through the emotions and anxiety I have as a new mom processing and managing her child’s medical issue. Even if you feel these emotions are insanely out of proportion to the issue, they are MY emotions AND I’M ALLOWED TO HAVE THEM, GOD DAMNIT. (Ching! That’s the sound of my therapist earning the $500000000000000000000000000+ my family has paid her over the past 12 years). Plus, writing about my anxiety always helps to relieve it. And sometimes, it even helps someone else going through something similar– bonus!
2. People have already noticed and asked about the issue, because it is physical and perceptible. It doesn’t bother me that people ask (meh, not totally accurate– depends who it is. Friend? Fine. Guy in elevator? Fuck off.), but I want to use this platform to educate, inform, and perhaps just not have to repeat myself and explain the situation to everyone I know in the future (because saying things in person is hard and I hate it). Generally though, I feel it’s always best just to put things out there rather than have people wonder about it or make assumptions.
I know, that was only the preface and you’re already exhausted. I’m sorry. Not all my posts fit on twitter.
Here we go.
In the first few days after Nora was born, she did not open her right eye. At all.
Eric and I thought this was a bit bizarre, but also recognized that she had just been through a trauma of epic proportions (ask Eric what it’s like to watch a C-section– his face goes pale and he makes multiple references to the movie Alien). So we tried not to obsess. But when the pediatrician checked her over in the hospital on Day 2, we made a point to ask about it.
Us: “So, is it weird that she hasn’t opened this eye at all?”
Pediatrician: “Nope. Totally normal. Don’t worry– she does have an eyeball under there. I checked.”
We all had a good chuckle and I tried not to interpret her remark as slightly condescending. The concern, clearly, was not about a missing eyeball (mainly because it didn’t occur to me that that was even a thing. IS that a thing?!) The concern was about her ability to open the eye. But we were assured that newborns often take days to open both eyes (which, to be fair, is true), and she was fine. So we joked that she was just giving us the stink eye for having so brutally evicted her from her cozy uterus-home, nicknamed her “One Eyed Willie,” and tried to call it a day.
But internally*, I obsessed.
(*in this context, “internally” means saying things out loud to Eric every 2-6 seconds for weeks on end.)
I knew something was off. I think they refer to this as “mother’s intuition,” and maybe there was a bit of that going on, but I believe it was really more just a product of my
textbook anxious-paranoid-obsessive-compulsive tortured existence personality.
At her 3-week pediatrician appointment I brought it up again. At this point, the right eye was opening, but not nearly as wide as the left. Unfortunately, the doctor could not really assess this, as Nora slept though the entire appointment, ignoring any and all attempts to wake her. She had no problem laying there, unclothed and comatose in a freezing cold room, snoozing soundly. Like this, but stark naked:
Clearly my kid.
So at her 8 week appointment, I brought it up once again. This time Nora decided to be awake, probably because we stupidly booked the appointment for 6pm, in the midst of her witching hour. Rookie new parent mistake. She was pissed and tired and hungry and glaring at me with “wtf Ma!?” face.
But the plus side was that the doctor was able to get a good look at her (murderous) eyes.
And she didn’t love what she saw.
“At this point, I’d expect to see both eyes opening to the same degree.”
I wanted to shout I KNEW FROM DAY 1 THAT SOMETHING WAS WRONG, DICK! But instead I smiled politely and said “Mmm hmm,” because society.
She referred us to a pediatric ophthalmologist, who confirmed a diagnosis of Congenital Ptosis (the p is silent, FYI. We learned that the hard way). Ptosis is a fancy way of saying “droopy eyelid.” Without getting too technical (I have warned you all repeatedly that this is NOT a medical blog, and most of my info comes from Wikipedia, what I’m able to decipher of my frantically-jotted doctor’s appointment notes, and what I heard from “someone I know who knows someone”)– in congenital ptosis, babies are born with a damaged levator muscle, the one that is in charge of lifting the eyelid. Unfortunately, since the muscle is damaged (not simply “underdeveloped”), there is not much that can be done to strengthen it and improve the droop– treatment is instead focused on maintaining vision in the affected eye. In severe ptosis, the eyelid covers the pupil and restricts a child’s vision, which can lead to all kinds of eye problems such as lazy eye, astigmatism, or amblyopia (google it. Or don’t. I don’t care, I just don’t want to get too medically complex here. I like to think this blog is a safe space where people don’t have to learn/think too much). When that is the case, surgery is recommended ASAP to prevent these conditions from developing.
Luckily, for now, Nora’s case seems to be fairly mild (fingers crossed– we’ll know more after her appointment next week). Her lid does not cover her pupil unless she is extremely tired, so thus far, her vision seems fine and is developing normally. We will have regular checkups with the ophthalmologist to ensure that this remains the case, and if anywhere down the line her vision becomes affected, we will do the (very routine, relatively simple, and not too invasive) surgery. Otherwise, surgery is a future option simply for cosmetic reasons. Yes, Forrest Whittaker (thank you, “celebrities with ptosis” google search) has rocked his droopy eye all the way to the bank, but the droop life isn’t necessarily for everyone. Depending on how it looks when she’s a toddler, we will consider the surgery just to even things out and not have to worry about the vision aspect anymore.
I know what you’re thinking (no I don’t, but I know what the critical voices inside my head are thinking, so I’ll go ahead and address those relentless bastards)– cosmetic surgery for a toddler?! But let’s call a fig a fig**, people– kids can be cruel. The world can be cruel. I’m totally cool with Nora’s eye looking a little wonky. Maybe even she’d be cool with it (likely, as at zero years old, she’s already showing signs of being a way cooler person than I am). But other kids, and society in general, might not be cool about it. There are going to be a million challenges in this world that Nora will have to overcome, and I will be unable to control most of them (*takes deep breath, pops Prozac*). But if this is one hardship that we as parents can help alleviate, and we can prevent a lifetime of her having to explain her face (that no, she’s not tired, or sick, or skeptical, or giving the stink eye), then damnit we’re probably going to step in and do something.
Plus, Nora comes from a long line of cosmetically-enhanced women (three generations of nose jobs, praise be 🙌 ). I wouldn’t want her to feel left out.
Let me also assure you that, droop or no droop, vision issue or 20/20, I think my daughter is the height of amazingness. She is adorable, beautiful, sweet and already showing all the signs of being extremely social, happy, smart, strong, and even funny (those first slew of adjectives are all Eric, but I’m claiming the sense of humor and taking it to my grave). Her endearing personality is emerging more and more each day, and it’s incredible to watch. She is my everything, and I couldn’t possibly love her more or be more unabashedly obsessed with her (my instagram deserves a rating of 5 vomit emojis. I wasted no time becoming that mom). To use a trite phrase that I can now appreciate, she truly is perfect in my eyes (but check with me again when she’s 13 and calling me a bitch).
So in the meantime, we are putting an eyepatch on her for 30 minutes a day to ensure she uses the affected eye, and that her vision remains intact.
Clearly, this is where the nickname “Nora Left Eye Lopes” comes in– and if you don’t get that TLC reference, then may god have mercy on your un-pop-cultured soul (or maybe you’re just too young to get, in which case, fuck you). We bought some cute, stylish patches to rock, attempted to find a Lisa Left Eye Lopes Halloween costume that wasn’t slutty (doesn’t exist) and for now, as the ophthalmologist instructed, we are just “keeping an eye on it– no pun intended!”
I’ve been asked if ptosis is something Nora will “outgrow.” The short answer is no. The muscle is damaged, and it will never work properly without surgery. However, some babies with congenital ptosis “grow into it,” in that the droop becomes less noticeable as they get older, their features grow, and they learn some compensation strategies (such as lifting their eyebrow to raise the lid– which Nora already does (below), and it’s amazing because it creates this “Are you fucking serious?” look on her face that makes me laugh every time):
Although the raised eyebrow in THIS photo is more specifically “Are you fucking serious with this headband, Ma?”. Ugh, I don’t know Nora, I was trying a thing.
Now I also just want to take a moment to acknowledge that I am extremely aware of the fact that Nora’s ptosis is, in the grand scheme of things, a minor issue to have. Please know that I know this. Please don’t remind me that things could be a million times worse. I am well aware, and my heart aches for parents having to deal with far more terrifying and complex medical issues. Ptosis is diagnosable, and there is a pretty straightforward protocol for treatment. It is not at all life-threatening (assuming it’s not the symptom of a more serious neurological issue, which it appears not to be), and, as long as we continue to monitor it, it likely won’t ever affect her growth and development (HARD knock on wood). We are very lucky. Beyond lucky.
But when any kind of issue arises with your kid– well, it’s scary. Really fucking scary. To pretend otherwise, and to say that I immediately recognized (or have even now fully recognized) this is not really a big deal in the grand scheme of things, would be, I think, disingenuous to the experience of parenting (and to the general experience of being human, I would venture to say). Plus, I’m new at this. Nora was barely in the world for an hour before I noticed something was off. There’s no handbook for this shit. There’s no way to stop your mind from going to the deepest depths of worst-case scenarios– what if it stunts her vision? What if it’s a symptom of a more serious, underlying illness? Or what if it IS just cosmetic, but causes kids to pick on her? Laugh at her? Call her horribly mean names? (This last one, I suppose, is not REALLY a concern, as Nora will wear a hidden camera at all times throughout her entire life, which I will monitor, and should any kid even LOOK at her funny, I will kill them.)
No no, relax guys, I’m kidding.
Eric will kill them.
So how did Nora develop congenital ptosis? Well, the doctors say it’s just something that happens sometimes. No real reason.
But I blame myself. Obviously. Because hi 👋 .
Slowly, I am starting to accept the medical (non)explanation, and my therapist’s insistence that nothing I did during pregnancy caused this, but I still can’t fully shake the crippling fear and guilt that this is somehow my fault. Here’s a list of questions I asked myself in the wake of Nora’s diagnosis:
- Did this happen because I was depressed during my first trimester of pregnancy?
- Did this happen because I took meds for the nausea, even though they were approved by my doctor?
- Did this happen because I worked out too much, even though I was assured it was safe, and even healthy?
- Did this happen because I ate that funky cheese from the farmer’s market before knowing I wasn’t supposed to eat funky cheese?
- Did this happen because I complained so much during pregnancy?
- Did this happen because I was mean to my mom in high school?
- Did this happen because I once stole an avocado from Whole Foods?
As you can see, the guilt has become increasingly irrational.
My intellectual side (mostly) knows this is not my fault, but my heart aches at the nagging, persistent thought that my actions might have caused this. The mere idea of my daughter having to face any kind of hardship makes me want to just crawl up and die– to think I might have caused that hardship makes me want to die even faster and more violently.
But apparently, that’s motherhood. It’s incredible and beautiful, but it’s tortured. This is the first challenge Nora has faced, and it won’t be her last. This one may or may not be my fault, but I’m sure future ones will be. This time I might be able to step in and minimize the effects, but that will not continue to be the case as she grows older.
There will be a time when I look away for a second and she falls flat on her face. There will be a time when I can’t make it to her event, and she feels neglected. There will be a time when she discovers this blog and, mortified, hires a lawyer to request emancipation. There will be a time when she is a young adult, telling her therapist how I am the root of all her problems (and referencing printed-out excerpts of this blog as evidence). It’s the circle of Jewish life.
In the meantime, like all moms, I’m just doing the best I can not to fuck it all up. I’m accepting (gulp) that I can’t control it all. I’m managing my anxiety and working through my guilt. And in the meantime, I’m doing everything I can to ensure Nora knows that Mom will steadfastly love and support her throughout her life, through any and all challenges she might face.
Will it be enough?
(Get it? Ptosis? We’ll SEE? Ugh I hate myself.)
No I can’t end this on a bad pun. Here, this instead:
(** I recently learned that my go-to expression, “Let’s call a spade a spade” has racist undertones. I was clearly blissfully unaware of this, but am nevertheless horrified that I was walking around spewing this expression left and right. Unfortunately, I have yet to come up with a good replacement expression. “Let’s call a corgi a corgi,” is Eric-approved, but I’m not sure it has universal appeal. Some quick research led me to the discovery that the original expression was actually “Let’s call a fig a fig.” So that’s my temporary fill in. It’s not great, but it’s not racist, so priorities. Feel free to use it. #themoreyouknow)